Maybe it’s working full time and majorly over exerting myself at work.
I think it’s the fertility medications…
I can’t stop crying.
Everything seems so hard.
Everything seems so broken.
Like the exhaust system on my car I feel like I’m busted in two parts.
One part gets up and puts on a performance. Works. School. Take Phyllis to the vet. Eat.
The other part stays in bed because it physically hurts to get out of said bed and face the world.
Where people who don’t suffer from infertility and Meniere’s Disease exist.
They just have sex and get pregnant and glow and have a baby and share pictures of their stupidly adorable babies which make my heart and uterus both explode with joy and a jealousy I have never experienced.
They just get up and the world doesn’t spin.
I don’t get it.
I don’t understand why I can’t just do this.
Why this big skin bag full of blood and guts can’t just cooperate.
I can’t look at my husband without seeing the absolute and complete devastation in his beautiful eyes.
We coast on auto-pilot.
My new fertility medication came with the promise of less side effects – which isn’t untrue. I don’t have the crippling gastrointestinal symptoms. But hello hot flashes, night sweats, and irrational emotional swings.
The other morning when Matt got out of bed I was LITERALLY angry at him for going to work. In my irrational, hormonally jacked up brain I was angry at my husband for choosing to go to work and leave me home, to stew in my own self pity and hatred.
I was still kind of angry at him when he called over his lunch break.
Of course my rational brain was trying to reign me in.
Suddenly I lose the desire to do anything like just now – I was typing away and then something pulled me away and now I can’t get it back and the couch is calling my name and I will go.
Because I’m a frequent flyer I knew exactly where the tests I wanted were located. Like muscle memory.
You were standing there with your empty basket and I could feel your trepidation.
You had your basket in the crook of your arm and had two different brands of ovulation predictor kits (opks) in each hand. For a split second I wanted to ask you if you needed help.
I wanted to tell you the Clear Blue Digital Advanced are expensive and I’ve found they aren’t as accurate as (what the ‘trying to conceive’ (ttc) and infertile community calls) ‘cheapies’ or dollar store/Walmart (not smart tests).
I wanted to tell you if you went ahead with them you should know you shouldn’t use first morning urine (fmu) even if the directions advise you to. The vast majority of women have their Luteinizing Hormone (LH) spike in the afternoon and early evening.
I could have told you the easiest way to use the test is to collect your urine in a clean cup vs. peeing on your hand, missing the tip completely, or over-saturating the tip (there is such a thing as too much urine in the ttc game).
I maybe should have mentioned the other brand you had in your hand was the Walgreens brand of the more traditional opk – they work similarly to cheapies in that they are not digital – you have to interpret the results on your own. After you take the test you look at the two lines and have to discern if the second (test) line is AS DARK OR DARKER than the control line. As long as it is one of those things, you’re surging which means if the stars (and hormones) align, you’ll ovulate in the next 12-36 hours, sometimes longer – especially if you have certain conditions like PCOS.
I would have suggested you just put everything down and go to the Dollar Tree to get the real cheapies. These you pee into a cup and use a plastic dropper and deposit EXACTLY THREE DROPS OF URINE into the urine slot and wait for the lines.
I would have also had to mention if you went with the Clear Blue Digital Advanced strips – YOU SHOULD NOT READ THE LINES LIKE THE CHEAPIES… they aren’t made to be interpreted that way, just pay attention to whether you have an empty circle, a blinking smiley face, or a static smiley face (indicates you are surging).
Now, dear stranger, the above only applies if you are ovulating. Just because you get a positive opk does not mean you are ovulating properly. An LH surge doesn’t mean diddly if you’re not popping an egg.
Then there are special lubricants if your cervical mucus isn’t up to par.
Oh it stops being fun. It stops being spontaneous. You’re either tracking your ovulation and don’t want to waste any precious sperm the day BEFORE you surge or you are ready to baby dance (BD) but you have to cram some PreSeed lubricant into your vagina so the sperm have a better chance of making their journey to your *possible* released egg. Romantic huh?
Add on some medications that aid in ovulating or regulating your cycle! Extra fun.
All of a sudden you’re having hot flashes, you’re bloated, have a pounding headache, and CANNOT stop crying/eating/sleeping. Why are you crying watching your neighbor walk their dog? Why are you randomly crying making tacos?
But you want a baby so you have to BD. And it’s on a schedule. It revolves around your ovulation.
So let’s say, beautiful stranger in Walgreens – you get to the point where you think you’ve ovulated. You’ve BD’d when you were supposed to.
The next seven days are blissful for some (like me) – it’s too early to take a pregnancy test and you know you’ve done everything you could have done.
I pull out the pregnancy books and add to my baby Pinterest board.
Then you get about 6 or 7 days post ovulation (dpo) and you start testing. You get a (who am I kidding, you buy 6 of those things) First Response Early Response (FRER) because they can detect Human chorionic gonadotropin (hcg) levels as low as 6.3 mIU/mL – the hormone produced after implantation.
If you get a big fat negative (bfn) and you’re like me, you’ll compulsively test for a few days. It will consume you stranger. The desire to see two lines on that damn test will be all you can think about.
There are so many different types of home pregnancy tests (hpts) – all with differing hcg sensitivity. There are the spendy FRERs, there are the even more expensive digital ones, and then there are, of course, the cheapies. I have a hefty supply of cheapies (both opks and hpts) because when I go to the Dollar Store I just buy them out.
I usually wave the white flag about 10 dpo and ask my doctor for a blood hcg test. HCG can be detected in blood before urine. There are two types of hcg blood tests:
Quanitative – which will tell you the exact number of hcg in your system, anything under a 5 is considered not pregnant.
Qualitative – which will tell you yes (or no) if any hcg was detected in your blood.
If you’re lucky enough to get a big fat positive (bfp) hopefully you go on to have a wonderful pregnancy and healthy baby.
But I don’t think you’d be standing here if you didn’t have a story of your own. So you may get a bfn and the cycle starts all over again…
A year ago I wouldn’t have been able to tell you the difference between opk brands and hcg sensitivity… I didn’t know what fmu, dpo, bfn, bfp meant.
I could have told you all of these things. The reality is – you’ll get there, only if you have to. I didn’t know your story.
You looked like I did when I bought my first box of opks. Back when I thought my body was doing what it was supposed to do – we just weren’t on the schedule as it was.
I hope I don’t see you again. Especially if you’ve got a big ol’ belly swollen with promise and life.
If do see you again and you have the same look of fear mixed with excitement I will reach out. I’ll welcome you to the club if you’re having a hard time getting, or staying, pregnant.
Until then, dear stranger, I wish you luck in your ttc journey.
I don’t usually do this, but because of the sensitivity of this post (discussion of my uncle’s death), I’m putting a content warning for my family in case this is triggering.
Technically my uncle Steve lost his battle with ALS – he died from the disease.
Because we don’t live in a die with dignity state (shame on you Minnesota) we have what’s called palliative sedation.
The dying person is given the option to choose a day to die. In my uncle’s case it was to be sedated and then have his respirator removed and he would die from his disease.
I was welcome to be with Steve his last few days. He was uncle Steve. Stoic. Positive. Cracking jokes. Sipping on his gin and tonic (diet Schweppes was preferred).
Things got extremely difficult for Steve over the past few months. Matt and I were doing everything we could. Bringing meals, dropping off groceries, I helped plan Steve’s last birthday party.
He wanted to see our pictures from our New York trip so we went over one evening in May and showed him our pictures. We asked his advice about buying our first home. Caran grilled a pork loin and Steve ‘back seat grilled’ constantly asking if it needed to be turned or checked while simultaneously telling Caran to ‘just keep the lid closed – you’re letting the heat out’. He shared how much he loved Stove Top stuffing. We talked about TV shows.
I had to remind myself he was dying because he just didn’t act like it. He was still uncle Steve.
Since we moved to Woodbury and lived literally down the street from Steve and Caran we ended up spending a ton of time together in the years we have been in our house.
My parents would come down for an occasion and we would invite Steve and Caran for dinner and a bon fire, we dyed Easter eggs, the six of us hunched over several dozen eggs writing dirty words with the clear crayon.
Steve particularly loved my ‘qweef’ egg one year.
We would sit around the fire and he would puff on his cigar.
Then he needed his bi-pap and the fires stopped but we would still sit in the living room and he would puff when he needed some extra air.
We shoveled their driveway the last winter in their house. We set up a Christmas tree and lights with Steve’s kids and grandkids when they were out of town so it would still feel like Christmas.
Then he needed his cane, they moved just across the freeway to Oakdale or as Steve called it ‘North Woodbury’ – he was quickly in his power wheelchair, which he stayed in until he died.
I had built a really close relationship with Steve and Caran and watching what was happening to my big, burly, Real Estate mogul uncle didn’t seem real.
I have always been particularly close to Steve’s daughters – especially Heather because of how close we are in age. I tried to think of how I would handle it if it was my dad. It’s like my brain refused to even let me think of losing my dad this way.
On one of Steve’s last days I had some quiet time with him alone and I asked if he would do two things when he got to where he was going:
Say hi to grandma for me
Find my babies
He promised he would.
He told me to keep trying and we would have our baby. We exchanged I love yous and just a few days later he died.
I was invited to be present during Steve’s death. It was a mix of emotions. I wanted to be there to support my dad, my mom, my cousins, Caran, my cousins, my uncles – I also didn’t want to be in the way or take up sacred space.
I tried to be aware of where I was in space and time and anticipate the needs of my family.
I’ve never been present when someone takes their last breath and transitions from Earth to their next act.
Music was playing softly. He was surrounded by the people who loved him the most.
The bulletin from his service is still sitting on our living room table. His obituary is hanging on my fridge.
He was larger than life.
His death has had a devastating impact on my dad – who like Steve, always tries to be the stoic one. Protecting my mom and I. I see him hurting and vulnerable and it makes my stomach hurt.
You can’t throw a stone in Woodbury without hitting someone who knows Steve Mollner. On my typical Walgreens route there is a house for sale. The Mollner-Brown sign hangs at the end of the driveway and I can’t drive past it without crying.
To everyone who has stayed around to read the end of this – here is my advice. Stop what you’re doing and find someone you care about and hug the ever loving shit out of them. Hug your kids. Hug your spouse.
Love you Steve. Keep my baby safe until a suitable body is ready for them Earthside.
I’ve unplugged from social media for the most part the last few weeks.
Every few days I torture myself and peek at my facebook and without fail there is an announcement… a squishy baby photo…
Two back to back pregnancies. Lost.
Now I’ve had four cycles, testing for ovulation, tracking cervical mucus, cervical position… I’ve read the books, I’ve peed on sticks – every brand, every color, blinking faces, static smileys… one line darker than the other…
Month after month brings blood, blood brings the tears, sometimes I stand under the shower and turn it from hot to cold… it’s so shocking that for the quickest instant I feel absolutely nothing. Or maybe I feel everything, I guess I’m not sure.
It’s better than other alternatives. Sometimes I just want to be with my babies. But they weren’t really babies to me so it’s this weird juxtaposition of having both empty and heavy arms.
So I eat. And get my eyelashes done. I dye my eyebrows. I wash my face four times a day. I eat some more. I work. I look in the mirror and think ‘bitch has let herself go….’
Everything just feels like a distraction.
We’re coming up on a year since I found out I was pregnant for the first time. I can’t quantify what’s happened in that year.
I went to New York. I went to Chicago.
I think I found a friend who is as weird as I am.
I ran (metaphorically) from one thing to the other. Now there is no travel on the horizon so I’m stuck wondering if this month will be our month.
Father’s Day came and went. It felt empty. We should have had a baby.
I so badly want to parent with him.
If you’ve never met Matt you’re losing out for so many reasons. I wish I could put little pieces of him in an envelope and mail him to you so you could feel him for just a moment.
He is literally the most amazing, cool, real, raw, flawed person you could ever know. Everybody has the best partner – I would be willing to go toe to toe with pretty much anyone. Our kids will definitely have the coolest dad.
Why can’t I give that to him?
After all he has done for me.
I haven’t been to the closet for so long. It’s like pieces of me are giving up. Maybe it’s self-preservation at this point.
I felt like I needed this. Everything is coming out wrong. Everything feels wrong. Because everything is.
So transition is described (in reference to pregnancy) as:
“Transition is the phase of labor just before the pushing stage. At about 6 or 7 centimeters of dilation, some of the symptoms of “transition” appear. During transition, contractions become very strong, and often their duration and frequency are less predictable.
At this stage of labor, the laboring woman may feel confused or even unable to cope at all. Legs and arms may tremble uncontrollably. Belching, hiccuping, feeling nauseated or even vomiting may occur. Most women recall feeling irritable and often become astonishingly rude. The coach will need to be particularly attentive and encouraging at a time when it is not going to be too rewarding to do so. The extreme changes in body temperature will require the obvious treatment of either adding or removing blankets.
Toward the end of this accelerated phase, but often before the cervix is fully dilated, the laboring women may feel the urge to push (or what feels like the need for a bowel movement). A couple of these signs, but especially the urge to push, often indicate transition.” – Linda Jenkins, RN
I don’t know Linda.
I’ve never been lucky enough to experience childbirth.
However, I feel like ‘transition’ has kind of been my mantra the last few days.
I feel like I’m on this precipice, this brink of something new. Maybe new isn’t the right word. Just a page is about to turn in my book.
I’ll be honest – when I think of my losses I don’t think of them as babies. I don’t want to be controversial or political – to me, my losses were the loss of a potential body. My GP helped change my mindset on this. My baby is still out there – waiting for the right body.
Miscarrying is such a weird experience. I found this quote while browsing the web tonight,
“To be told my baby had died was incomprehensible. To continue living when my world was lying shattered at my feet was unthinkable. But I survived it and I promise you my friend, you will survive it too.”
You think you won’t survive it. You think you can’t. Some days it still feels that way. Every pregnancy announcement, every new squishy small human born into this world immediately brings me back to that place of mourning. Then I transition to this bizarre place of being OK?
I’m not sure whether it’s being OK or being numb, either way I think it’s part of this beautiful transition I am going through.
There are still days where I visualize scraping out my insides.
There are also days when I feel hopeful.
I read somewhere (I’m sure it was from the brilliant mind of Ina May Gaskin), when a mother goes through transition during childbirth she leaves her body to collect the soul of her child. Being I haven’t been through childbirth those of your reading this who have are probably rolling your eyes thinking it’s the most rainbows and unicorns thing you have ever heard. I remember when my cousin was telling me her birth story she explained it like, “you just go into labor-land” – maybe that’s the time.
This will keep me going.
This one idealistic thought, that one day I will finally go to find my baby, will keep me moving forward.
The whole process of conception is weird. Amazingly weird. So many things have to match up just right – yet, as a young girl I was always told sex = babies. So who knew staying pregnant would be so hard?
I was doing OK – I hadn’t cried for a few days… I hadn’t snuck into the babies closet to bury my face in the baby blankets I have, touching the clothes I have bought, sneaking sniffs of the baby shampoo and lotions I have…
Then we had our appointment to find out the results of our fetal tissue test.
Our baby had Trisomy 16. I remembered a little about it from my lifespan development course – I knew it typically wasn’t a viable chromosomal abnormality. I knew it was a random event. I knew there was nothing I could have done to change it.
We talked clinically. We talked about the steps we could take. The things we could try. It was trite. It was clinical. I appreciated her candor. I left feeling OK.
I stopped at Walgreens and did what I told myself not to do, and go down the baby isle.
It’s over 12 hours later and I’m still just constantly on the brink of crying.
It’s almost 2:00 a.m. and here I am… sitting on the floor of the babies room, in the dark with just the glow of my computer screen, burying my face into the blankets I have bought, unfolding and folding the little clothes, and smelling the damn baby shampoo. I can do all of this in the almost darkness because I have been here before, and I very well may be here again.
I’m typing this because I need people to know about this. There are so many of us, right now, who are crying for our babies we had to give back. My pregnancies may have only been 12 weeks total – they were wanted desperately.
Hug your local grieving mother.
Hug your local grieving father.
Don’t ask them if they need you – because they will tell you they don’t.
I shouldn’t speak for anyone else. So I’ll speak for me.
I’m raw. I’m wounded. My body is out of my control. I’m having hot flashes. I’m hormonal. My body still thinks I’m pregnant.
I was totally sure about this one. It was going to be a sticky baby.
Measuring 6w2d (two days behind what I thought I was) with a heart rate of 100 bpm – which is the most beautiful music if you want your pregnancy – we were a bit concerned about the heart rate hovering around 100 so we were advised to go back a week later for a follow up ultrasound.
The week was tense. As the date got closer I felt better. There was no way we were going to lose this baby too. It was my rainbow baby.
I still remember how the ultrasound gel felt on my belly as the tech moved the wand around. She clicked a few pictures and then told me we were going to have to a transvaginal ultrasound to see better so I could go pee and get undressed.
There I sat, naked from the waste down with the little sheet over my lap. The knock on the door came and my midwife walked in – weird – and she cut right to the chase. “We weren’t able to see a heartbeat, I’m so sorry. Can I give you a hug?”
My first thought was… if I stand up to give her a hug my naked bits are going to touch her scrubs (which meant some lucky woman in the hospital was in labor), so I stayed seated and she hugged me.
It felt like the air was sucked out of the room.
She offered to have the tech come back in and do a transvaginal just to confirm, but the reality is I knew it was futile.
I was able to get into see an OB and she tried to get me scheduled for a D&C that day but I had eaten a handful of Sweethearts before I left for the ultrasound so I couldn’t be anesthetized – had to wait until the morning.
It was a quiet ride home.
I took a scorching hot bath. I wanted to feel pain but I couldn’t feel anything. I remember sitting in the tub sobbing and Matt coming in and just looking at me.
What do you do? What do you do when your wife is sitting in the tub with your dead baby inside of her? How do you comfort her?
You don’t. You just don’t.
I didn’t sleep that night. I laid on the couch, watched TV, and played Candy Crush. I literally did not sleep a wink.
I vacillated between sobbing and just wanting to die.
It was finally time to get ready to go to the hospital and I couldn’t wait to be sedated.
It was done. Again.
Everything about this D&C was different for me. The bleeding and clotting was different. The hormone crash was different. I have never felt closer to Matt in my life than I have the last three weeks. I have wanted to be closer to him. To feel him. I feel like when I am touching him is the only time I feel alive.
I work exclusively from home and have the most amazing boss and co-workers. That group of women has become my family. They were the only ones who knew we were pregnant.
I had an unrelated GP appointment scheduled and told my GP about the second loss and she gave the typical apologies and told me about her experiences with pregnancy loss.
She then said something that has slowly but surely made this experience a bit less shitty.
She told me, while my two pregnancies were losses, the spirit of our child is still the same. It just needs the right body. The first two bodies weren’t good enough so it has to wait. She laughed and said when we do have our child, one way or the other, it will be a spirited child because it had to wait so long to find us. Someone else told me, “your baby will find you.”
It’s 2:06 a.m. and sleep won’t come. I can’t stop thinking about you. A woman on a fictional TV show felt her fictional baby move for the fictional first time and I am still reeling.
It’s not just my womb feeling empty tonight, it’s my heart. There is no momento to hold on to. You barely existed. It’s still shocking how such a small thing can rip the biggest hole in someone’s life.
I should be giddy with excitement, waiting to feel your little flickers. Instead I am awake, listening to the wind howl outside, feeling this sudden urge to bury my face in the baby blanket I bought for you. To smell the lotion I bought for you. To fold the clothes you’ll never wear.
The closet door will wake my husband. I don’t want anyone to see me curled up on the floor of the room your crib should be in.
It’s not my burden to solely bare. Matt was there. Through every Earth shattering second of it.
We went in for our ultrasound at what should have been my 9th week.
It was discovered just the week before I had some ovarian cysts and a UTI – all normal of course. I had my first ultrasound and got to see our little chicken strip. Baby was measuring small but of course dates can be off, especially when you stop hormonal birth control and don’t have a good idea of your cycles.
I brought home a picture of our baby Quade, or BBQ as I referred to it.
Pregnancy symptoms were so welcomed. I didn’t mind the bloating, (extra, amplified dizziness), feeling like I was low-key going to vomit all. day. long. I ate crackers. I quit drinking caffeine, I quit taking dangerous meds weeks before I found out. I was going to do this right. I was going be a mom. In ten months, sometime around May 16th I was going to have a warm, wrinkly, sweet smelling baby in my arms.
I bought stuff. I ignored people who said to not do too much. I ignored my doctor to just get through the first trimester. Nothing could go wrong I told myself. Matt and I have been through far too much to have anything go wrong.
In the very, very bottom of my stomach I could feel this twinge of something… I ignored it. Just because miscarriages are super popular in women in my family I was going to beat the odds. I gave up soda for this little nugget – nothing could happen to my baby.
But, it did.
We had our ultrasound and the first thing that felt strange was the tech wouldn’t let me see my baby. I asked if she could see the baby and she said she was seeing what she needed to see and when I asked about a picture, she said she would give it to the nurse because that was procedure. We excitedly made our way upstairs. Blissfully fucking ignorant.
I had all of my medical records printed off, my immunizations, my discharge papers from the ER with the cysts… I had our first ultrasound photo to compare and show our midwife. She came in smiling and shook our hands.
She went through some paperwork and then said it. The words that instantly steal away all the air in my lungs. “There was no heartbeat.”
My first thought was run. My second thought was, I killed our baby. My third thought was, Matt is going to hate me. My last thought was, my body has once again betrayed me and I am carrying a dead embryo inside of me and had been for probably days. I had been sitting up late, dizzy, talking to my dead baby about what I hoped for it’s future.
I had a missed miscarriage she explained. Super common. I could go home and wait for my body to catch up and pass the tissue, I could take Cytotec and miscarry at home with the hope of completely passing everything, or have a D&C. I immediately said I wanted a D&C. I felt like there was an invader inside of me. I felt physically ill. I wanted to get home to punch myself, punish myself somehow for screwing this up.
All of this was happening at warp speed. Matt didn’t have time to process. I don’t remember what he said I just remember screaming, “A D&C is basically an abortion, they just suck everything out and it’s done…”
The next thing I remember we are walking out of the clinic and Matt is holding me up.
We went to Arby’s and ate dinner.
See, the cruelest part is, with a missed miscarriage, your body still thinks you’re pregnant. So despite all of this trauma happening emotionally, I felt nauseous as I hadn’t eaten for at least four hours and bile was creeping up my throat and it was either eat or dry heave.
The next three days are a total blur. By the time I went to bed that night I had convinced myself they were wrong. My baby wasn’t dead. I would get a second opinion.
We went in the next morning and the OB we saw looked me dead in the eyes and said this pregnancy was not viable. She was compassionate too. My analytical mind needed to feel sure before I had my D&C. Less than 24 hours later and I was home from surgery.
It’s been three weeks today since my D&C. I feel so many different things. First, I have made a good start on forgiving myself. There isn’t a damn thing I could have done to save my baby. Second, I am beginning to believe I didn’t let anyone down by losing our baby. Finally, I am grateful to my body. My body knew this pregnancy wasn’t viable and nature did what it was made to do. BBQ wasn’t meant to be born alive. I am thankful my body knew what to do. I wish it didn’t have to be the case, but it is.
I am processing everything one day at a time and am looking very forward to when we can start trying for BBQ2. Because we both know we are going to be pretty fucking cool parents.
To all of you out there who have been through this, we are bonded together in this horrific trauma and I am sorry to all of us mamas whose babies were planted on Earth to bloom in Heaven.
I know my goddaughter Chevelle is taking great care of BBQ.
I started working for an online company in February and it’s both exhausting and exhilarating having something to be responsible for.
My mental and physical health fluctuate so frequently this time of year. Of course they are really one – intertwined, woven together into a weird little ball… which is always moving, dizzy, nauseated.
Sometimes I scare myself. Not because of what I am incapable of doing, but what I am capable of doing now. The catch 22 is now that I am ‘better’ (able to be ambulatory more often, able to fake it better, medicated), some days I am running around chasing my Goddaughter and the next day I am only capable of looking at the TV and hating my plight. If I wanted to hurt myself I could. I have to make the choice every day to keep going. Even on my good days. More so on my good days. This is what the reality of a chronic illness looks like.
It’s always there. Staring at me. My monster.
It’s why those around me see me and think, shit she is better – because until they see me they don’t think of my illness. They mean well and I know this. Why is it that the sick person always has to be patient and understanding though? Why can’t our families and friends just get it. Or try to get it. Even our care teams – my Meniere’s doctor always says how great I look. He doesn’t live with my disease though. He doesn’t get dizzy when he sits down on the toilet or bends over to pick up a book. Most of you don’t get dizzy when you turn your head to check for oncoming traffic. Most of you don’t get dizzy in the shower because, HELLO it’s a shower and there is water, movement, noise, tactile stimulation, smells… most of you don’t get dizzy just by scrolling through your emails.
I was so upset by something a few days ago I was searching for how much it would cost to buy an RV and just go… hit the road. Pack up the essentials and just leave. We could be free. At least trick ourselves into feeling free for a moment.
I had a friend recently tell me I am helping people by writing these things. I was humbled these ramblings were helping someone, in some way.
I hate the saying ‘all pain is the same’ – in a way it is true though. We are all connected in some way and this weird, shared experience with pain.
It’s 3 a.m. – the brain fog is so thick I don’t remember who told me “nothing good happens at 3 a.m.”… “3 a.m. it is the witching hour”.
Maybe it was my RA who invited me into her room and then asked about my drug problem. lol… such a random memory – but I was the farthest thing from a drug addict. I was the sober one. I was the sober cab. Packing 12 people into my friend Tim’s car and barely making it up the hill to campus at MSU-Mankato. I remember crushing on a guy and this girl hooked up with him and I was driving them back from a party and she was wasted and I was slamming on the breaks and her head was bouncing off the head rest.
We all giggled when she fell out of the car and she mumbled something about the bumpy ride and then yorked in the parking lot.
I was so independent. On my first or second night there I met my best friend Tim – we shared secrets, clothes, and my bed… not how you’re thinking. He wasn’t interested in me like that. He got me through that first year. He watched me fall in love with Matt.
The shit you think about at 3 a.m.
My first night at UW- River Falls alone, Matt left and I was sobbing, watching reality t.v. and this girl asked me to go out for a cigarette… I called Matt and asked what to do…
That same girl (her roommate, and two other girls who lived a door & two doors down) stood up for me at my wedding months ago.
Ironically two of those girls grew up near Mankato where I started my 2nd act… my life after high school.
I was running from something… I ran to Mankato and sowed my wild oats. I had so much fun. I learned so many lessons. I wasn’t as crippled by my disease as I am today. I was fearless. I had a backbone. I drew lines, hard lines. I said no. I didn’t feel guilty about what felt like running away from home and completely reinventing myself.
I could be whoever I wanted to be. I met my husband there. I kissed people. I danced.
The memories that flood your mind at 3 a.m.
I never would have guessed I would be where I am in my life today.
I feel guilty for just about everything now. I feel responsible for things I shouldn’t have to feel responsible for. I am the queen of cleaning up other people’s messes.
I woke up this morning to the email I have been waiting for, my dissertation chair & committee member approved my prospectus – which means I can move on and start the proposal which is chapters 1 -3… all I need is for them to approve it through a software system we use and my program director to give the OK and I am good to start writing chapter 2…
I started working… it’s been six years since I have been employed. I work from home for an online company called Spec Simple, we are a virtual library for architectural and design firms – right now I work for our Perkins + Will account. It’s data entry so my fingers get a work out and I feel good about it.
I see a light at the end of the school tunnel and I am already thinking about potential post-doc work.
I worked for an hour this morning and because my supervisor was out sick and I have to wait on some training materials I had the whole day to just do nothing…
You would think doing nothing would be nice after the two weeks I have had?
It’s terrible. I should be purging stuff from closets – cleaning – researching – reading – checking work emails – …
Here I am.
Maybe I’ll meditate. I can’t sit still anymore. When I sit still I start to think and thinking is dangerous these days.
I’m going to go purge a closet. It will feel good.
How do you grieve someone you’re not even sure if you liked?
I spend time telling people, begging people, to be easy on themselves when they grieve. I wish I could cut myself the same break. I got hours and hours without thinking of my grandmother and then BAM – a 2×4 of emotions to the face…
I had one quiet moment by her casket, alone, and I cursed at her. I swore at my dead grandmother. How insolent? I felt so many strange emotions that day… I swore at her and I apologized to her (not for cursing at her, but for feeling like I fell short…), and I whispered how much I would miss her.
How do you grieve someone you feel like you lost such a long time ago?
How do you grieve someone you still had hope for?
I always tried to put up such a front about her. I was fine with not being close to her. I was fine being angry at her. I was fine with her being disappointed in me. I was fine with her insults, jabs, and not taking the time to learn about my disease. The truth is, I wasn’t.
I am still angry. She’s gone now. So it’s over. All of her things are dispersed. There is no letter of apology, there was no sign, there was no feeling standing in her apartment. It was just over. She didn’t look like herself in her casket. They did a beautiful job on her – don’t get me wrong, she just wasn’t herself.
I bought some sharpie’s and some of us wrote something to her on her casket, I wrote her hair looked on point and that I loved her and was sorry.
I don’t dream about her. I don’t feel her in the breeze or the sun on my face or any of the other stupid shit people tell you you will feel when someone dies. She’s just gone. My lap is full of tears and missed opportunities.
I can hear her. I can smell her. I just can’t feel her.
My dissertation is finally moving forward – I’m working… I have so many things to focus on and then I catch a whiff of her perfume and it makes me angry.
The moral of this story is to love the shit out of each other. Don’t waste a single second. I’m not saying don’t be human – get mad. Have opinions. Shout them out from the rooftops. Just don’t ever make the people you love feel small and if you do, apologize. Not a non-apology apology like she was famous for, “I’m sorry you feel like I made you feel that way…” – look them in the eye and apologize because life is fucking short.
Write your kids and grandkids letters, put them in a box in the back of your closet so when you’re gone they can find them… tell them they are smart, even if you think they make terrible decisions, tell them they are worthy, because no matter what they are, tell them you love them, even if you don’t know how to show it, tell them they have a purpose, even if you don’t know what it is, tell them they are beautiful, even if you think their hair is too dark/too short/too weird/if their pants sag too low/if you don’t like their piercings or tattoos, because one day – you will be gone and how they dressed or how their hair was or wasn’t won’t mean shit.
You will be gone and they will wonder if you loved them. If you believed in them. If you found them worthy.
I don’t know the right way to grieve her because towards the end I didn’t really like her. I loved her of course – I made zero effort to be in contact with her because she was so mean. Why did I feel so protective over her when she died?
Why do I still feel protective over her?
Why can’t I feel her? Why can’t she come to me in a dream and just tell me to knock it the hell off and get over it – I mean, I can hear her saying something like that?
Being vulnerable sucks. Knowing you’re being vulnerable is somehow worse. Like, we can be vulnerable with friends or family or strangers and they can go… “wow you’re so vulnerable” and we’re like, yeah… sure, I guess I was.
When you go into something knowing you’re being vulnerable it’s like… yeah, uhm, okay I am about to get super vulnerable. Ready?
I feel super human today (not super human like a super hero), I feel super… human. It’s one of those emotional days when I am super in tune with my body and my emotions and it makes me uncomfortable.
Things are always changing around me. Yet, I feel as though I stand completely still. Sometimes people who have near death experiences report having their lives flash before their eyes. For me it’s like that a lot of the time.
Another friend I get to call Dr. blah blah
Another friend I get to see over the next nine months whose belly swells bigger and bigger. Chalk full of life. Chalk full of opportunity.
These are the days when I remember I am a chronic. These are the days when everything just sucks and there isn’t a damn thing I can do to change it.
As I have said before I don’t believe in ‘attitude adjustments’ – I think emotions serve a purpose. The melancholy is serving a purpose so I will ride it out. Yesterday I tried to sleep through it but woke up feeling worse. I went to bed last night hoping today would feel different and instead I woke up dizzy, way too early, stubbed my toe, swore a lot, cried a little, and then tended to the animals.
Phyllis always vibes off my vibe so today she is moping around the house.
So I turned my music up and opened my laptop and found myself here… babbling on and sounding like a whiny child.
At least I have some insight right?
The truth is yesterday and today and who knows… maybe tomorrow are just the ebb to the flow…
I think it’s just baby fever. Or maybe kitten fever. Or fear that neither one of those things is going to happen for me. Or fear that me pursuing my doctorate is a joke. A waste of time and money…
Maybe it’s the aftermath of my grandma’s death eating away at me.
Maybe it’s my quiet fucking house.
Maybe it’s my physical illness manifesting as a mental one.
The person who dies can make death less ugly by having plans.
We’re so human we forget we have an expiration date.
We forget when we die we leave behind the pots and pans of our lives and our loved ones have to figure out what to do with our ‘things.’
To some family, stuff is just stuff.
While my grandmother’s stuff may just be stuff to some – to me, it’s my childhood. It’s memories. The knickknacks are time capsules. They are a physical representation of memories.
They represent a better time for me.
24 hours after my grandmother passed away in her sleep I was in her apartment with my dad getting her funeral dress, I touched the fabric, could see her wearing it at my wedding just months before. I retrieved her wig. I went to her jewelry box and asked (out loud), “ok grandma, what jewelry would you want to wear?” None of this was fun. This wasn’t a time to stake a claim on her things. It was fucking brutal. I could smell her illness. There were soiled articles of clothing her bathroom. I instantly felt protective of her.
We gathered some photo books to make picture boards for her funeral.
Hours later I was sitting in the basement of the funeral home. Behind me hung her funeral dress. I took notes. I made no decisions. I watched my dad and his brothers pick her casket. I had no say. I didn’t want one. I was there for one reason – my father. My father, who along with his brothers and their wives have spent countless hours trying to prove her military status, trying to recoup some of the money they have spent to keep my grandmother safe and cared for over the last year. I wasn’t there for fun. I wasn’t there as part of the planning committee. I was there because I don’t work 9-5 and wanted to support my father.
No conspiracy. No preferential treatment.
Matt and I wanted a house we could fill with family. We have done so again, and again, and have enjoyed it. When I called my husband and work, hyperventilating we decided our house would be open for the family. My folks were driving down and I wanted this to be a place where all of my family could congregate.
Tomorrow it will all be over. My grandmother’s things will be disbursed to family. Her apartment will be cleaned and someone else will move in.
The book of her life will close. That’s what I want to grieve today. I’m gonna take some time out from the human drama and just miss her.
The quite guy in my support group. Lived in Marine on St. Croix.
His wife passed away a decade ago so it has been him with a stray cat that found him.
I got the phone call this morning he passed away.
I felt so damn numb.
I wanted to cry – it’s like I was all dried up. I cried a lot last night with Matt. I read him my post about my grandma and it both got us. When I finished reading it he said, “she was hell of a woman” and it made me want to squeeze him.
Then I find out Jim died. This man was gentle. He worked with his hands. He was an avid cyclist. We shared a disease. We shared tears when he would talk about his wife and her death. He missed her so much. He loved his cat.
He built us a bench as our wedding gift. I absolutely loved it and now it’s a cherished piece of our families furniture.
Jim was family. When we were making our wedding guest list it wasn’t even a question.
I wanted this post to be inspiring in some way but I find myself distracted. I successfully unloaded the dishwasher and have laundry in.
I guess this is my goodbye.
Rest easy Jim. I know Laura came to get you. No more dizziness. No more tinnitus. No more pain. You’ll never be lonely again. I’ll try to make sure your cat is ok.
Your chair will be there at support group every month.
Finally, I am crying.
Pictured: (L to R) Jim Johnson, Renee Kaulfass, Mike Kaulfass, Rosie Hulse-Larson, Swede Larson
There is no cuter way to put it. No poetic way to say it.
Because death is final. In a physical way. Death ends opportunities. No more conversations. Sure, you can try, but they’ll always be on sided. Unless you have figured out a way to speak with the dead – if so, I don’t know to suggest whether to contact me or contact your closest psychologist.
My grandma and I had a roller coaster relationship.
When I was little we were best friends. No better way to put it. She was the coolest grandma. We would wake up every morning I stayed with her, took a bath together (totally not weird), drove down the road so she could buy a paper, drive back to her house where she would torture me while skimming it, then to Perkins for breakfast, and then to my Mecca – Maplewood Mall. Every. Single. Time. Without. Fail.
I grew up and hit those years were you don’t understand how luck you are to have these older people in your lives who are chalk full of such fascinating knowledge. Our sleepovers happened less and less. I started to dye my hair. I got sick. All of those pesky expectations… I was’t becoming the woman she thought I ought to be. Which is painful to type, let alone feel.
Grandmas should be squishy love bugs who envelope you in their arms and don’t judge you (well, they probably judge the shit out of you but behind your back). Not my grandma. She was opinionated, loud, no filter (sounding familiar to anyone else…)
I’ll never forget a particular occasion her saying to me, “teenagers should be seen and not heard” or when I went to her house with black hair, “you look worse than Britney Spears” – this was during the height of Britney’s meltdown. It kind of became a turning point. Until that point and after, there were quips about my hair, how I dressed, how I expressed myself… how I wasn’t really sick enough to need an assistance dog… how my first tattoo, one so incredibly powerful for me to have as a disabled person all she said was, “well that’s how they are going to identify your body when you’re laying in a ditch after a car accident”…
Stuff I guess looking back, despite in the moment it being incredibly painful, were just coming from a woman who was angry about something. Which is very sad.
I don’t know why she was so angry for the last several years. I know she was always ‘that way’ – my dad had a box of her things when she moved to senior living and I found letter after letter of hers, typewritten, sent to the St. Paul Police Chief, clippings of my dad’s letters to the editor during his high school years. She volunteered for Dorothy Day, working with the homeless. She was an activist. In her own way. Hell, she was a feminist in her own way. She would never admit it and I am sure voted for he-who-shall-not-be-named. She will probably haunt me for saying she was a feminist. She was irritated with the “women’s liberation movement” and thought women should appreciate being a woman – which is kind of what feminists fight for (just in an equal way)… she wanted to chain herself to a dead tree in my dad’s yard to save it as my cousin’s husband stoked his chainsaw. (insert smiley crying emoji here)
She was a walking contradiction. Perfectly human. Maybe not the epitome of a grandmother. She was my grandmother though. The fond memories I have of her far outweigh the sad ones. Which is why I find myself typing away before the sunrises, I don’t even know if she lived to see yesterday’s sunrise. She was my grandma and best friend at one point and while I have been telling myself I had grieved that, the truth is I hadn’t. Because I always held onto hope one day we could foster some type of relationship beyond being civil to each other.
I know she loved me. I also know why we didn’t get along. Because we are too alike. We are not wallpaper women (sorry to steal your line Blythe), we write angry letters, we find strength from helping those less fortunate than ourselves. I learned to love animals from her.
I loved hearing the stories of her dad rescuing baby deer, “breathing life” into woodchucks, bunnies, all kinds of animals they would have stumble up to their shack of a home in the mountains. She rescued a ring-necked morning dove at least 20 years ago and nursed it back to health. Her name is Elvis and only until the last several years she was still laying eggs.
These are the memories I choose to put in the front of my mind as the next few days come and go… that we are more alike than we are different. We all are really.
She got to die how she wanted to. In her sleep. In her bed.
All I can hope for is she has found peace. She followed my grandpa and uncle and I can only imagine them all sitting around a table, grandma yelling at grandpa for something and catching up with my uncle Rob. She is surrounded by the thousands of animals she has rescued in her life.
Maybe I’ll go dye my hair blue or get a tattoo in her honor… maybe a ring-necked morning dove so when I go wherever the hell I go when I pass she can identify me, as her granddaughter, the feminist who used her words to fight for what she loved and believed in, who loved animals, who had no filter, who inherited her nose and her boobs. Grandma wrote in a book I have she always knew I was different… I think she respected it as a woman and that’s good enough for me.
I love you grandma. I hope you are proud of me in some way.
Gosh there is so much I want to say about this photo. The beaut standing next to me is technically my second cousin. My cousin’s daughter, Ellen. There are technically four of us in the picture. The little peanut in the middle is Lillian, technically my third cousin. Just behind my flowers is a pin. It’s two silver wings. It’s for Elli’s first daughter, Chevelle, who was born an angel.
If you were to remove Elli from my history there wouldn’t be much left. I was the trusted babysitter for her and her brother when they were little. Using the term babysitter is a stretch really. Their house was where I went when I hated my mother (sorry ma, love ya!). It was kind of my neutral zone. Elli’s mother Julie, my first cousin who is 20 years older than me knew more about my life in middle and high school than almost anyone else. I could literally tell her anything and sometimes she would get on my case if I needed it.
Elli and I grew up less like second cousins and more like sisters. We told each other secrets, always picked each other for Christmas gift giving (still do), fought like feral cats, and made up like sisters do too.
I loved watching her play hockey and remember being so proud of her for getting out on the ice and kicking ass.
Life happened as it always does. College happened. We saw less of each other.
When we moved back to Minnesota, life started to slow down a bit and I wanted to reconnect. We did and soon after she told me she was pregnant with Chevelle. To say I was shocked was kind of an understatement.
I had this vision of her going off to college like I did. I had all of these expectations for her life. It took me some time to realize I was doing the exact same thing I HATED people doing to me – which was having their expectations of what my life SHOULD look like. I felt like an asshole and apologized.
I will never forget when I got the phone call Elli was in the hospital having Chevelle at just over 18 weeks gestation. The prognosis wasn’t known for sure, but wasn’t positive. All I knew is I wanted to see her. Matt and I drove to the hospital and I sat next to her in bed and tried to hold back my tears. I would have given just about anything to take her place. See, when I look at her, I still see this blonde hair, blue-eyed angel running around with gaps in her teeth giggling. There I sat, holding the hand of a woman, a mother who was losing her first child and life seemed so sick and unfair. Before we left the hospital I put my hand her swollen belly and felt the smallest flicker of life. I don’t know if the flutter was Chevelle or if I just needed to feel something in that moment.
The next day Chevelle was born still and never had a reason to cry. The entire span of her life she was kept safe and warm. She didn’t have to experience sadness or loneliness. She was baptized and Matt and I were asked to be her Godparents and were of course, humbled and honored.
When I found out Elli was pregnant again I again, was stunned – for different reasons. I was getting married. She was in the wedding. How would this work? Why was she rushing back into a pregnancy? Would she suffer again? I emotionally shut myself off to her during most of her pregnancy.
Looking back now I understand things happened the way they did and I can’t change them no matter how many times I would do them over. I remember realizing when she passed the 24 week point and I was able to take a small breathe, knowing her second little girl would be viable at that point. Every time the phone rang I was a little afraid of what it would be.
It was time for her baby shower. I didn’t feel ready to see her yet. I was still wrapped up in myself and my emotions surrounding HER experience. The moment I saw her I almost fell in the floor. She was glowing. Her big beautiful swollen belly… I wanted to run over and rub it (I think I did eventually)… I wanted to cry and hug her and tell her I was being stupid. I wanted to tell her I shut off because I was afraid. I wanted to tell her thinking about my wedding day without her felt sad and wrong and I wasn’t sure if I could do it without her.
If there is one thing you should know about Elli and I is we are basically twins… both stubborn as bulls and full of pride so of course it took some time to tell her all of this.
The day after Lily was born Matt and I drove up to the hospital. It was such a juxtaposition to the first time we drove to the hospital to see her. There was going to be a baby for me to hold.
I walked in the room and there were my girls. Elli, Lily, and Chevelle in her little urn next to Elli’s hospital bed. I sat with Lily and held her and made a promise to love her and do whatever I could do to help raise her. I would be her auntie. She would be my niece. Screw third cousin crap. I am her auntie. A cool aunt though – the one who will let her jump on my bed, let her eat candy, watch rated R movies, be the safe place, and maybe when she hates her mother (sorry Elli, we all did it), I can be her safe haven. Her port in the storm if you will.
I tell you this story because it’s an important one about family. Family is a fascinating institution. Elli and I have had our bumps in the road. Fuck bumps, we have fallen off the proverbial abyss, the precipice, and yet we always find each other. We’re willing to trudge through the murky waters to fight for and find each other. Having Lily in my life has changed it. I will always be grateful for her for that. Someday when she is old enough to understand it, maybe I will tell her this story so she knows how much she means to me.
We’re sisters and that’s something worth fighting for.
It’s also a lesson in expectations. It taught me to practice what I preach here. Elli’s life is hers to live how she wants to. I can’t do a darn thing about it other than love the shit out of her and support her in every single decision she makes – whether or not it is something I would choose for her, or myself. She is a smart woman and knows what is best for her and I trust that now.
So when I mention my girls, this is who I am referring to. My three girls who are such an awesome and fulfilling part of my life.
This post started as a facebook status update. Lots of these posts do. I immediately find myself thinking, “who will care?” – then end up here. Writing about it anyway. Maybe one of you does. Don’t know. Don’t really care.
As much as I like writing for all of you, this is such a sacred place. It’s akin to writing a letter to ourselves like we did at bible camp and then burning it. Except it’s public. So its different. Who knows.
The holidays make me feel mushy and lovey and I don’t know if I don’t like it because I threatens my rock solid facade I present (sarcasm) or because it completely makes me dopey and giddy with this excitement.
This year I have been punishing myself. A close family member has ALS. My grandfather died a year ago from ALS. Last year the holidays were different for me. We gathered just days before Christmas to mourn my grandfather. The world seems to be falling apart and here I am… grinning like an idiot because it’s Christmas in a few days.
I went through my wedding photos today to snag the 50% off EVERYTHING (seriously people, everything) deal on shutterfly and it got me all kinds of worked up. My husband is so freaking cool ya’ll. There is nothing about that man that is robotic or rehearsed. He is so real and raw it freaks me out sometimes. He very RARELY will fake any emotion. I envy him so often for that. Like, he literally is so authentic to what he thinks and feels sometimes it drives me bloody insane.
I sifted through the photos and it was like I could feel how I felt that day all. over. again.
The smile on my mom’s face was so real. My dad’s tears were so tender. All of my families in one place to celebrate these two weirdos who for some reason are perfect for each other.
There are so many things I find myself thankful for and so many things I find myself fearful of as the next year approaches.
I have to cut myself a small break and enjoy the holidays and be a big soppy dope and just enjoy it when I can get it.
I felt pretty good this morning, considering the last few nights have been rough, with even rougher days.
We were overdue for our cat’s parasite screening so I got to dig through the litter box to find a fresh sample, threw Phyl’s collar and leash on so we could get a weight on her and off we went.
Our vet clinic is quite literally down the road. I’m terrible at estimating miles but it’s short.
On my way there I was over-focused (more on that later) on a speck on my windshield and when I came too I was sweaty and highly anxious.
I made it to the vet. Walked in, handed over the cat crap and went to get a weight on Phyllis. My vision started swimming, my heart started racing. My first thought was, they know I having some kind of an incident. I wanted to run. Just leave. Which would have been mortifying so I stuck with it. Got Phyllis on the scale. The assistant was working on getting our specimen checked in and I wanted to scream FOR THE LOVE OF ALL THAT IS SACRED HURRY UP, I AM ABOUT TO GO DOWN… I waited for the dog food and when she asked if I wanted a copy of the invoice I almost shouted NOPE. It was finally time to leave and the cold air felt so good. I sucked in air and rushed to the car, reversed like a lunatic and sped home. By the time I got home I was completely soaked in sweat and getting tunnel vision. I could hear my heart pounding in my ears.
After being in my safe-zone for about 5 minutes I was able to get control of myself.
I wasn’t dizzy when I left the house.
I wasn’t anxious when I left the house.
I wasn’t thinking about anything negative (consciously at least…).
Which is clearly a trigger for me.
I will try to describe this as best as I can. Remember sitting in class and you would drift off into a day-dream? When you snapped back to the reality your body may have jolted a bit and you brushed it off and went about your day? Another way to describe it is you’re laying in bed and suddenly feel like you’re falling. Your whole body jerks.
This is how I respond to over-focusing. Sometimes I will zone out and be staring at something but when I come to I am unable to go about my day. This hyper-focusing immediately leads to a panic attack, which usually then brings on the tunnel vision and dizziness.
Some of the members in my support group have shared similar experiences about the hyper-focusing. I wonder if there are mental disorders where hyper-focusing is a trigger?
Either way. Fuck you panic attack.
I had to go over my grounding exercise half a dozen times before I felt safe.
The room isn’t spinning. I can stand up. Get dressed. Feed the animals.
I reflect on the last few months. So many changes. I look to the future. So many changes there too.
I try to remind myself to stay in this moment. I try to meditate but I can’t sit still.
I am at the point in my meditation practice where you practice simply being. Not thinking. Just focusing on the in and out of your breath.
It’s too quiet.
It’s too loud.
I have too many thoughts this morning. I woke up feeling well. I don’t allow myself to relish in that. I have to act. To move. I’m free today. Where to start? I just practice simply being.
‘The art of doing nothing.’
Isn’t that the majority of my life?
I also practice not transforming emotions. I feel anger bubbling up to the surface. I allow myself to taste it, let it fill me up. I am patient. Assessing it’s purpose in this very moment.
My inner voice is screaming, CAN’T I JUST BE FUCKING NORMAL? Why can’t I just wake up in the morning and have no need to practice ‘being’, why can’t I just wake up and have a normal life?
I am always comparing. It happens daily, sometimes it consumes me.
It’s a brutal form of self-punishment to compare yourself to your family members, your friends, but it happens and it scratches until my skin feels raw and my eyes are puffy. Life goes on. For me it seems to stay in stasis. For others it moves forward.
Everything looks clear in hindsight
If you can adjust to the twilight
Trying to live enough life to last a lifetime
Roll with the ride like I’m supposed to survive
How you know that you alive?
If you ain’t fighting for a mouthful of future?
This ain’t business as usual, check the tackle
Box full of beautiful, look like shrapnel
Break the cycle and the old mistakes
But the boat obeys the waves
And then the little fish spoke as it broke away
It said, “Know limits, but know with a ‘K'”
Yesterday’s catch will cook tomorrow
Right now I gotta do what I gotta
Took a time out from the human drama
Put my line in the water now who wanna holler?
I got married! I went on a honeymoon. My new name is Quade. Good luck finding any Q tchotchkes!
I got a new dissertation committee. I quit taking hormonal birth control! So many changes. So. Many. Emotions.
It’s been a while since I’ve been here. Life gets weird sometimes. This was a good weird. Wedding weird. Seeing everyone come together and pull off something so magical is pretty darn cool. There were some bumps along the road – the bumps that remind us we are so damn human.
We did it. I married a man whose only wish is to spend more time with me. I married a man whose only wish is to chill on the couch and play video games and one day be a dad to human children and I can’t freaking wait for that day.
I didn’t feel like writing for so long – I had so much to say I didn’t know how to sit down and do it.
Right before the wedding I was in a dark place. My dissertation was going nowhere, at the speed of light. Three quarters in and I felt like I was drowning… I didn’t even have a topic. I had draft upon draft to my program chair saying I was done with the program. I would be ABD (all but dissertation).
I held on. I got married. I went on the most magical honeymoon. Matt and I finally had time to let our souls find each other again and it’s like we somehow fell in love all over again in Alaska. We hiked, we soaked in hot springs, we held hands on the streets of Fairbanks and without saying a word, knew this place was going to steal a piece of us.
We got back and I still couldn’t write. I kept a journal in Alaska and wrote about what we did each day. It felt nice. It wasn’t the same as being here. Writing to all of you, some of you strangers, some of you not (hi mom!), is so cathartic for me.
Atmosphere released another album Fishing Blues and as always, I found the inspiration to write.
The last two mornings I woke up dizzy. The old monster reared it’s ugly head and I’m immediately back to that place of anger.
The anger comes so suddenly.
It’s like acid.
I don’t want to be me.
I want to peel my skin off.
I question everything.
My sanity, my ability to function… can I be a good mother? Can I be a good wife? Am a good person/friend/daughter/relative? Can I finish this dissertation? Can I be a Doctor? Seriously though, am I going fucking crazy?
A year ago I would have reached for my Valium. Today I only do so when I am unable to handle the symptoms. I have had to learn to surrender to it. Surrender to the anxiety. Surrender to the sadness. Surrender to the darkness. I used to fight it. Sometimes I still do.
The only reason I can surrender is because I have things holding me here. Body & soul.
I am someone’s wife. I am someone’s daughter. I am someone’s Godmother. The rubber band bounces back and I wake up a changed person. Even if it’s only for a day, a week, if I am completely lucky, a month.
So I found a psychologist. She was awesome. She called me cool. Told me I was going to be OK. Said we were going to go places together.
Saturday I opened a letter saying she was leaving as of July 22nd. I had an appointment this evening at 5:00 PM…
I put off the call.
I finally made it this afternoon. Left her a voicemail and said I got the letter and saw no reason for me to come in just to have my MMPI-II read. Asked if she could send me the information.
She called back.
In her happy fucking voice, “Hi, this is Dr. blah blah, I am upset you received the letter before we could speak about my leaving tonight at your appointment.”
Gave me a referral, wished me well, said she hoped I could find someone to work with because I am so ‘cool’.
Fuck our mental health care system. This is the second time now I have had a therapist just leave. When Walter (the alias for the first one who retired) left I reconciled it. I picked it up and moved on. This time I feel bitter. Pissed.
We were supposed to fix me.
I never thought I had abandonment issues… maybe my stupid MMPI-II would have told me that Dr. blah blah.
There is an awesome therapist who works with me for Biofeedback, he told me he would take me as a patient and thought we could work well together. SURPRISE! My insurance won’t cover him because he doesn’t have the ‘right’ degree.
This is what people go through trying to seek help. You wonder why everyone just takes a pill to make them happy? Because it’s easier than being bounced around from therapist to therapist. Don’t get it. Go to one. Tell your dark secrets to a stranger. Confide in someone. Let your walls down. Get metaphorically naked with a stranger. Have them wrap you up in their metaphorical warm hug and then dump you like a bag of flaming dog shit and have to find a new person to strip down in front of.
I get it.
People retire. People move on. Bully for you. Can you at least give me more than three days notice? Can you at least make me feel like opening up was worth something?
The worst part: she wanted to blindside me like Walter did… she wanted to tell me to my FACE. So I could be a bumbling idiot in front of her. So I could cry and be so angry inside my blood felt hot and my skin was itchy…
So I could put on a strong face. “Good luck,” I would say like a dutiful little patient.
Her husband died after an epic battle with cancer. Her writing speaks so deeply to me.
I guess we’re all connected. I heard Oprah Winfrey say once, “All pain is the same.” This was during the beginning of Winfrey’s “self-help” spiral and I wrote it off as voodoo.
The last couple of years the saying has been stuck in my head when I get extra introspective and introverted. When the passing thought is, no one in the world understands my pain. Which is true to some extent. This shell of a body is my own. However, my pain is not my own. It’s a shared experience. It’s flows outside of this shell and touches every one in my life. Sometimes it’s just a trickle, sometimes it’s gushing.
I guess I like Nora so much because she writes from the heart. It’s super raw. It reminds me of how I write. How I over-share. How I trust all of you so much and many of you are faceless, sometimes nameless blobs of organs, skin, and blood. We all connect. Through the pain. Sure, we can rejoice in each other’s joy too. But pain and fear make us innately human doesn’t it?
We are all just clawing to connect. To feel it. To experience those moments when everything seems perfectly fucked and perfectly perfect at the same moment. We are all walking contradictions. We all just want to connect. I just want to connect in the realest way I know how.
let me try to illustrate how this feels. imagine being the most tired you have ever been. maybe it’s like a hangover… i have no perspective on that.
i needed to go pee. bad. i looked at the clock, it was 9:34 this morning. i told myself i would give myself five minutes to get the energy to go to the bathroom. when i woke up from zoning out i looked at the clock and it was 9:57. i had almost wet myself.
when i stand my heart pounds. i can hear it in my ears. sitting here writing this is taking everything i have.
i don’t wish this on anyone. i would like for my loved ones to experience my life for just a day. not even necessarily the vertigo – but the days after the attack. those are almost worse.
the days when your legs feel like they weigh 100 pounds each. you decide shuffling your feet is easier than picking them up to walk. stairs… forget it. sometimes i have to use my hands to crawl up the stairs. not because of the dizziness (although that too, has happened), but because i am so damn tired i just can’t do it.
it’s fatigue. fatigue that never goes away. sleeping 12 hours makes no difference. fresh air makes no difference. sunshine makes no difference. i just have to survive it. live it.
all the crippity crap my old psychologist used to tell me.
i am a useless blob of a human. organs, skin, hair… my brain in mush. my hands only work because i need to get this blog done. i need you to read it. i need you to try to imagine it. i need you to try and understand it.
i need it because on days like these living doesn’t make sense. i have nothing but my nose out of the water. it’s total darkness.
from this i will prevail. like the proverbial phoenix, i will rise from the ashes of this attack. i will persevere because i have to.
i don’t have the luxury of giving up. throwing up my hands.
i refuse to let my legacy be taking the easy way out.
death is easy.
it’s living that is hard.
i rarely back down from a challenge.
i found a meme I really liked the other day:
fate whispers to the warrior, “you cannot withstand the storm”
Every time I leave the house I see a pregnant woman.
It’s stings in a way. Not necessarily out of envy, but fear.
Fear about becoming a mother.
Not fear about my capacity to love, but fear about my physical ability to be pregnant and raise a child.
I mean really, there are days when I am unable to care for myself properly.
You can’t just “be sick” as a parent. I hardly remember my mom being sick as a kid. I am sure it happened but I don’t remember it. She and I were probably sick at the same time and she still cared for me. Was still tender. Able. Strong. She never crumbled onto the floor in a mess of snot, clutching… grasping to anything she could find to stop the world from spinning.
Can I really be a mother?
First step is getting off my medications. Not only my benzo, but my diuretic. The purpose of the diuretic is given because it assists in getting rid of excess fluid in the body. It keeps some of my symptoms at bay.
Second step is getting pregnancy. Sounds fun right? Terrifying for me. Morning sickness… potential blood pressure issues when my diuretic has suppressed my blood pressure for so long. Not being able to take my benzo.
Third step is being a mother. My disease won’t go away because I have a child to care for. What if I can’t physically do it?
There are days when I am so fatigued I can’t even speak accurately. There are days when the anxiety and depression are so heavy I can’t see through the darkness.
When I have a child I can’t have excuses. I can’t not wake up in the middle of the night. I can’t forget to feed, bathe, nurture them.
I can’t be zonked out on narcotics.
Again, it’s not about capacity, it’s about physical ability.
I am going to push publish on this blog. I’ve been working on it for months. Because it’s hard. It’s painful. It’s part of my reality. It’s a jagged reminder of how my life is different. How I can’t just make a knee jerk decision. Everything must be plotted out. Everything needs to be planned.
“Let Me Know That You Know What You Want Now”-Atmosphere
Do you want respect, or do you want truth?
Life’s too short to be afraid of the dark
And we don’t stop after making the mark
Separate your chest from your heart
To help everybody wag your tail with a lot less bark
Put the costume angst away
I was born on the year of the razorblade
I’m in the back corner of a one way train
This storm ain’t nothing but Sunday rain
(Do you want respect, or do you want truth?)
Get a taste of your soul when you hold breath
(Do you want respect, or do you want truth?)
We act like we got a whole lot of road left
(Do you want respect, or do you want truth?)
So don’t mind if I drive with the top down
(Do you want respect, or do you want truth?)
Let me know that you know what you want now
Earthbound, aim for the soft spot
So much purpose I walk like a molotov
Shot glass, rock hard, penetrate nonstop
Cops on the way with the bomb squad
Now let it be known
We’re trying to get ahead before we get a headstone
But a rich man still face death alone
That’s why we turn up the touch and connect the tone
Dashboard ain’t clean as it was
Back before I first took the last seat on this bus
But the children dance when we beat the drums
And they still understand why we speak in tongues
All city, American built
A pocket full of cash take care of the guilt
The crabs all crash in a barrell of milk
But when they clear the snow I’mma steer the Seville
It goes, look for the sign, wait for the right time
A lifetime to outlive the night time
And when the paint chips fall
Gonna find my name on the wall with the crown in the skyline
I keep bad on the back of my mind
I’m an average guy, I just happen to fly
Supernatural high and I’m laughing inside
One nation with a capital I
Everybody wanna be the next to blow
So let it flow, so fresh it grow
Just to let you know I could let you go, ho ho
Everybody’s difficult, everybody’s simple
We all on death row, we all gon’ tip toe
I run with kleptos, I still wear big clothes
Hold my dick the way you hold your crystals
Pissing in the middle of nowhere
Fishing in a lake full of frozen tears
I’m like a polar bear from the Southside of over there
I disappear into the open air, Atmosphere
Get a taste of your soul when you hold breath
We act like we got a whole lot of road left
This is just one example of hundreds of memes I see everyday. This particular kind of meme has one point. It’s intention is to be inspirational. I get that. My rational brain understands these are created to help those struggling when they are in a tough spot.
When I see them posted up in my support group, I feel a catch in my chest.
It’s gonna harder before it gets easier. But it will get better, you just gotta make it through the hard stuff first.
This is my beef with these kind of memes. For us chronics, there is nothing to “overcome” there is no end to our suffering. Sure, for some of it ebbs and flows… but there is no cure. If we just push long enough it won’t just stop. We can push until our palms are bloody. Hell, we all have fought and continue to fight it. It’s fruitless. Ask anyone in my support group they will tell you it’s pointless to fight it. We can fight and overcome the depression, the anxiety, the substance use and abuse, the sweet little cherries on top we get being a chronic.
“Making it through the hard stuff” is survival. It’s nothing to be proud or pious of.
It’s that pesky little line of wanting to be treated like the average Joe and celebrating victories, like waking up in the morning… showering… doing the dishes…
I feel like some of these mushy feel good things are inappropriate and dangerous for some in my position. Especially those who are new to my particular disease, or any newly diagnosed person. It’s dangerous because they may still believe they can “overcome” – they may still think they can push hard enough and “win”.
My disease is a one-way road. There are no exit ramps. No mile markers. It’s a fickle bitch.
The key with my disease isn’t believing you can overcome anything. The key is to understand all emotions are normal and OK. It’s ok to be really, really, really pissed off. It’s ok to be cry so hard you are nothing but a snotty pile. It’s ok to be OK too.
I have become very in-tune to my emotions. I feel the anger bubbling up and I welcome it. Because I know it has a place in this moment. I experience it. Process it. Then I put it back in my emotional basement. I am over trying to transform emotions… there will come a point in everyone’s life – chronic or not – when you too, will learn each and every emotion has a purpose.
I was, and still feel I am sometimes, stuck in an anger loop. Now that winter is approaching by disease works a bit differently. I will have three crappy days and then usually one or two fair ones, then a day or two of dizziness, and then another couple crappy days. So I get into my winter/anger/bitter loop. I fought against it for a long time.
Now I know it’s coming… no reason to fight it. Prepare for it.
It’s not necessarily that I am “in a better place” with my disease… it’s simply an evolutionary process. It’s this silly little dance I do with myself. Except I have two left feet, no sense of direction, and the song is stuck on repeat.
Moral of this story is to not be hard on yourself when you see gooey memes or have your well-meaning random family member tell you as long as you stay positive you will be OK. Because you won’t. Like the late and great Stella Young once said, “no matter how long you stare at a step of stairs, it won’t make it an elevator.”
I woke up this morning after a fitful and sweaty non-sleep to a Facebook feed of inspiration porn. Three of the posts or memes ended with some variation on “What’s your excuse?”
My “excuse?” My Chiari, one of several neurological disabilities I have, is acting up, which means:
my skull feels like it is trying to separate from the dura mater
crushing pain in the back of my neck
poor coordination – I dropped a glass from lack of coordination. A shard embedded in my foot, and I actually walked off with my foot bleeding and forgot –at that very moment–what had happened. My husband came home and found the glass, which he cleaned up. Which leads to the next symptom ….
dizziness and syncope
word-finding issues, which seem a bit better this morning, although this post has taken 2 1/2 hours. I’m on the same sentence in the book-in-progress that…
I had a drop attack and subsequent symptoms during my public access test with Phyllis and we had to park far away from the doors at Roseville mall. I decided to go for it. I spoke with my physician, and she was happy to fill out the application for me, which is a requirement to have done when applying for this placard.
Matt and I needed some things last night so I drove to the local Target and put my temporary placard on my dashboard as instructed by DMV. I looked at Matt and said, “I am going to get shit for this.”
The reason I said this is because there are countless posts made in my support groups online showing nasty notes left on vehicles by cowards accusing those in the vehicle of being lazy or not disabled.
We entered the store and things were fine. We worked our way around to the food area and I hear someone shout, “lazy people who like to park in handicapped spots without a disability” then as I am walking past two women, another one say, “oh, this one.”
Every fiber of me wanted them to just stop talking. I generally dislike people – I don’t trust them. Any one could have a gun. Any one could beat the shit out of me. I just watched the video of two women beating each other in a Walmart. It’s just not worth it to engage strangers.
We walked past and the older women asked to speak with me. She was shaking her list in my face and Matt was beat red. I knew this wasn’t going to end well. Matt was trying to tell this old woman the temporary placard was displayed as it should be. The old women was telling me “shame on you for parking there without a sticker” and Matt was getting louder, telling her I had a sticker. The younger one is getting closer to me, with her false fingernails waving in the air. Yelling at Matt, “are you really going to yell at her…?” Heads are starting to turn, people are starting to stop and stare and suddenly this is actually happening. I am being accosted by two women in Target, Matt is seeing red, and I am standing there… numb… Matt finally says, “she has a temp placard which is displayed on her dashboard, THANK YOU.” and walks away…
The old woman then decides to ‘educate’ me and says she has gotten a ticket for parking in handicap spot. She said I will get a ticket and I said it was ok, I have the placard, I would fight a ticket. The old woman then said Matt is an bad person… suddenly my legs were alive and I began to follow after Matt as she continued to shout how he was a bad man. I turned and said, “he is a wonderful man who has supported me through three surgeries related to my disability.”
Matt told an employee we were being harassed and the employee laughed and Matt said, “NO REALLY”… I walked by the checkout lanes and started to hyperventilate. Something broke inside… I couldn’t stop the tears. People were continuing to stare… I wanted to run. We checked out and people were staring at me… I was making a scene. I kept saying, “how can people be that evil?”
We exited the store and my world was swimming.
The cherry on top is Matt and the younger woman acknowledged they went to high school together.
I called and spoke to a manager this morning at Target. She apologized for the employee not acting on it. I appreciate it and thank you, Mary, for being understanding and ensuring your employees are educated on what to do when these situations happen.
Ironically, we walked by a man with arm braces. All I could think was, he would never be accused of being lazy. He would never be referred to as, “the one“. He looks authentic… he looks disabled. I do not. I look normal. I don’t look sick.
What these women didn’t know, is, like someone who has a seizure disorder, at any moment, I could have an attack which would render me useless.
Matt and I decided the best strategy for next time this happens, because it will happen again, is to walk away. No matter how difficult it may be.
This is how I kicked off Invisible Illness Awareness week… having my authenticity questioned. Being spoken to as a thing, not a person. There was no compassion between the two of them.
The moral of this story is mind your fucking business. You don’t know what others may be going through. I have a good friend who had seizures for a while – she didn’t and doesn’t look sick, but at any moment she could have another seizure.
I have a friend who has chronic back pain and it affects her mobility. She uses a handicap placard and gets the leers from people….
Mind your own business. Please. It’s not your job to police me. Leave that up to police officers to ticket me if I don’t have my placard displayed.
While I am aware my wedding day is over a year away, there is this nagging in the back of my mind.
This unconscious realization. A powerful pull. A culmination of years of hard work, compromise, dedication, experiences. I get to marry the person of my dreams. It should be enough – but it just doesn’t put into words what that day will mean when it gets here.
Matt and I have not had an easy relationship. Put aside the usual fights young couples have, we were long distance for quite a while. We were tested. By God, by fate… I am not the one to judge. Something or someone was testing us. Can they make it?
About a year after I met him I had my first surgery. Before surgery, I remember him taking me to the hospital (only weeks after I met him). I need valium. The world wouldn’t stop spinning. I had to get back to my dorm with my arms around him from behind. With every step we took I felt the bile in my throat, the tunnel vision started. I was sleepy from the valium. I swear the man who gave me my IV was in army fatigues and I referred to him as the Hulk. Matt has a different story.
One surgery happened. He stuck around. Celebrated recovery. The second surgery happened five years later. He stuck around. Cried for me. Celebrated when I needed the walker less. Came home on his lunch break to make me lunch. The third surgery happened two years later. He stuck around… under a year later he would ask me to marry him.
He is either utterly, completely insane crazy or a saint. I vote saint.
I picked him for a reason. That reason is simple. He reminded me of my dad. Don’t get Freudian on me now…
As I was growing up, my mom encouraged me to marry someone like my dad. It sounded like a tall order. I mean, my dad is a super hero. Pretty sure there aren’t a lot of those laying around. He could do anything. He did things even when he didn’t want to. He laughed and cried over my achievements and my pitfalls. He always supported me. He is still probably the first person who can make me laugh – hysterically. He didn’t know how easy it was for him to hurt me and how it was even easier to fix a broken heart. He was steadfast. His hands were calloused. He went to work every day – even on snow days – to feed us, provide for us. Now, this isn’t to make my mother sound like chopped liver. She was, and is, the best mama in the world. She worked just as hard. I have two parents that gave 100%!
How in the hell was I supposed to find another man like this?
I was on a mission. Find a man like my dad. I looked. I went to college thinking… well… he isn’t out there. I will be single for a year or so and focus on school, just have fun.
About three months later, when I had stopped looking… started having fun, there he was. In the strangest of places. I remember calling my mom to tell her about him. I asked, “Mom, how did you know you loved dad?” She said, “Honey, you just know.” I remember tearing up and thinking… ok… this is it.
I, of course, didn’t tell Matt that – not yet anyways. He was such a gentleman. I fell fast and fell hard and somehow… I still fall hard for him every day.
Matt is just like my dad… a super hero. He can do anything. He does things even when he doesn’t want to. He laughs and cries over my achievements and my pitfalls. He always supports me. He can make me laugh – hysterically. He doesn’t know how easy it is to hurt me and how it is even easier to fix a broken heart. He is steadfast. His hands are calloused. He goes to work every day – even on snow days – to feed me, provide for us.
So this, folks, is why my wedding day is so important. It is many, many years of searching, failing, finding, rejoicing in the little moments.
Check out this beautiful letter a father wrote his daughter on her big day: http://themighty.com/2015/08/to-my-daughter-with1-down-syndrome-on-her-wedding-day/
Sneaky little lessons creep up when you least expect them.
There are so many wonderful things happening in my life right now. I feel I have such little time in my brain to dedicate to anything less important. But isn’t that always a trap? When we begin to trim the fat, we chronics have to worry about who we are going to hurt…
We spend so much time being lonely. I know more chronic doormats – we are willing to settle for just about anything because we are always evaluating and criticizing what we have already lost. We start taking stock. We are so used to being the fat which is trimmed from others lives. We fear having that power. To choose. To decide who we let into our heads and hearts.
My circle is small. If you want to know who will stand by you, be a chronic. When the diagnosis is made, when the surgery wound has healed, it is who remains. Who remains when we stop being convenient. When we start being a burden.
Loved ones tell us we aren’t a burden. Hell, I have told people the same thing. The definition of burden is ‘something that is carried’ – it kind of makes the argument moot. The truth is, the ones who are still standing after the storm don’t mind carrying us. I think it’s pretty frickin cool. My soon-to-be husband has chosen me, with all of my crap, all of my baggage, all of my burden – he has chosen me, and I, him. That is pretty amazing. He could go find a young, beautiful, sugar mama with vigor and spontaneity, but he would rather pick me up off the floor. Powerful thought ain’t it??
I can count on one hand my friends who have stood next to me and weathered the storm. I will never be able to thank them enough.
The purpose of this post was to not go off on a tangent, but to make a specific point.
There comes a point in everyone’s life when they evaluate those they surround themselves with. I have been slowly rebuilding my backbone… it used to be so strong. Didn’t care what anyone thought about me, didn’t care what they did to me… all of a sudden I was on my ass – physically, financially, emotionally… and became a doormat. I am removing the wishbone that was once located where my backbone used to reside.
With this being said, there are still some things hurt me. Some things I will no longer put up with. Consciously or not, things are written and said without thought of others. I am not talking political opinion, everyone is entitled to that and I am the first up for a spirited debate. There are however, some fundamental things I am no longer willing to budge on.
For the last time, I am the face of welfare. I have an EBT card, that I use, and get the stares. I have Medical Assistance. Yes, a part of your taxes pay for these services. Thank you. I envy you. You think sitting at home is what I want? You think using that EBT card is PRIDEFUL… you think having shitty health insurance is what I want? You think I am going to school to fill my spare time? I am in debt up to my ears in student loans so I can have legitimate work from home someday – so you don’t have to pay for me anymore. Until then, I would kindly ask you not paint me with the same brush you paint the EXTREMELY SMALL PERCENTAGE of people on welfare who are ‘cheating’ the system, which by the way – is a hard thing to do. Trust me, I have to fill out the paperwork.
By the way, the ‘people’ on welfare are of all colors. Some of us are white, some of us are black, some of us are brown, some of us are yellow, some of us are disabled, some of us have lost our jobs, some of us work a dead-end job and need the assistance to make ends meet. We’re not useless, lazy, or expendable. We are people. We bleed just like you do. We feel just like you do. We are not proud to need help. Asking for it isn’t easy. Find ONE person sitting in a county welfare office smiling – even the case workers are miserable.
If I could trade places with you I wouldn’t even think about it. There is one thing I will always have that you welfare haters will never have… a pocket full of clarity. An appreciation for the value of a dollar. An appreciation for making my EBT money stretch. An appreciation of what I have. Gratitude. An understanding of what it is like to be poor… and trust me, I am not nearly as poor as millions of others. I can appreciate the struggle.
I hope you never get sick, get divorced, lose your job… because then, and only then, will you understand what it’s like to need assistance and have to ask for it. The feeling in your stomach having to share all of your financial information, having to prove your life insurance policy has no cash value – having to bare your soul to a stranger to prove you are worth nothing. Only then will you get it. Until then, I don’t need you in my life.
The day after my last post, Matt got down on one knee and asked me to marry him. I am sure he had a whole speech prepared, but I wouldn’t stop screaming “stop” and trying to get him on his feet. I was so excited I couldn’t listen to him, or look at the ring in fear of throwing up or passing out. We are looking forward to celebrating our marriage September 2016 with friends and family.
Two weeks ago today, Phyllis moved home. It happened really fast, but I was as ready as I could be. She is a ball of energy and aims to please. She is already picking up skills very well at home and I am learning to be patient, pull out my “mom voice” and “mom stare”, and get into a new normal with her. I think Matt and I enjoy organized chaos, so it has been fun. Matt is a total animal person, usually animals gravitate towards him and I get jealous… so I am so happy she loves her mama more than her daddy, maybe it’s not love more, just listens more – either way, finally!!
She is so tuned into me, sometimes it freaks me out. She is NOT trained to alert an attack – a skill that (while taught) can never be a guarantee, except with Diabetes trained dogs… but she has inadvertently provided specific comfort during two attacks. Whether it is coincidence (which I don’t believe in), or she could smell difference in adrenaline or facial expressions, who knows? I wish she could write my dissertation for me…
We passed our public access test so next week we will complete our home skills test and then graduation day at the end of October where we will officially “graduate” and become a true team… even though our bond is already very strong.
The relationship between Phyl and the cats is progressing. Cirrus is a fierce defender of his mama so when I pay too much attention to Phyllis or too little attention to him, he will “bull rush” the dog, who goes running horrified, usually spilling water/scattering whatever is near by. But I expected as much, so Matt and I are working on a cat “super highway”, shelves that begin in our living room and extend throughout the dining room so they can have a space off the floor they can “own”. They are already enjoying it and we are only part way done with the overall project.
There are so many things to be grateful for right now. I am trying to remain humble and take care of myself when an attack creeps up.
In April I started a crowdfunding campaign for Can Do Canines through Indegogo. I made your classic “note card” video where I didn’t say a word except for a background song and two and a half minutes of my life story.
The outpouring of donations was surprising. Matt and his mom fought hard to be the first to donate (Matt won!).
The donations started to trickle in… suddenly there were names I didn’t know. I am nosey by nature so I started to sniff around. Matt’s dad’s boss and clients were donating… watching my video… feeling moved enough to help in my efforts to pay it forward.
Suddenly I had exceeded $2,000 with 19 contributions. I was stunned. I couldn’t wait to write out the check and present it to Can Do when I met my match.
When I got the email inviting me to meet Phyllis I wrote out the check and included a letter with the video URL so if anyone was curious they could look.
Little did I know I would soon have my photo taken, being hugged, and yesterday getting a call from the Executive Director, Alan Peters, inviting me to do a short presentation at the next board meeting. Can Do is hoping to start a Pay it Forward program and want to use me as a jumping board for the program.
Not only was I honored, I was humbled. It can take up to, or exceed $25,000 to raise ONE pup. These aren’t just pet dogs, they are companions, they are best friends, they save our lives. I was proud of my amount, but had the thought more than once, it’s not nearly enough… it’s not nearly enough to make a “difference”. Was I ever wrong?
It taught me a valuable life lesson. You never know what impact you are going to have. You never know how paying it forward is going to pay off.
I would do anything for this organization. Which is why Matt and I have already been involved in some events, are planning to participate in the mile walk called the Can Do Woofaroo in September and volunteering at the dog age at Ren Fest this year. I am super pumped Elli and Nick are going to be joining us!!
The purpose of this post is to try to get this point across. Paying it forward ALWAYS pays off. A huge thank you to those who donated.
If you would like to support this organization, please check out my fundraising page for the Can Do Woofaroo at: http://candowoofaroo.org/meniereswarrior#.VaqRQPlVhBc and donate (or join our team and walk with us!!)… literally $1 goes a long way when it comes to this organization. They survive on generous people to make these precious gifts happen.
Some disabilities aren’t exactly visible. They don’t require a wheelchair, a hearing aid or any other piece of equipment that helps us know to give up our seats on the subway or not shake our heads when we see a seemingly able-bodied person park their car in a handicap parking spot.
In fact, about 20% of people in the U.S. live with a disability, according to the 2010 U.S. census, but millions of those individuals live with what’s commonly referred to as “invisible” or “non-appearing” disabilities like depression, epilepsy, chronic pain disorder or learning disabilities.
These disabilities may vary in terms of severity or symptoms, but the people who live with them have one thing in common: They often encounter others who don’t know these disabilities exist at all, and even more resistance to understand what it’s like to live with these issues.
Here are five things people who live with invisible disabilities want people to know about what their experience is like — and, most importantly, how others can best understand and support them.
1. Their experience is largely unrepresented.
Ableism is hardly a mainstream hot topic of conversation, but even when disabilities are generally discussed, invisible disabilities are often ignored.
Alex Sanders, a 26-year-old with scoliosis, told Mic that while celebrities like Demi Lovato are raising awareness around mental health,“things like scoliosis or chronic pain, I don’t think those are talked about at all in a really meaningful way.”
But even when disabilities are discussed, they’re depicted as either “problems needing to be cured or as inspiration porn,” Miranda Adams, an individual who lives with epilepsy, told Mic. This is “extremely harmful” she said, because when disabilities are depicted in such polarized ways, individuals’ unique, complex experiences are invalidated in exchange for able-bodied individuals’ validation.
Because their experiences are largely ignored, the needs of people with non-appearing disabilities aren’t always considered.
“Often accommodations for non-apparent disabilities are not as clear-cut as other accommodations (ramp, interpreters, braille), therefore, when requesting accommodations, there can be ableist pushback,” Allie Cannington, a board member of the American Association of People with Disabilities, told Mic. And yet, just because these disabilities aren’t as visibly obvious doesn’t mean they can be ignored. “As someone with both apparent and non-apparent disabilities, it is the assumption that I only have the physical disability, when in fact, my non-apparent disability requires just as many daily accommodations,” Cannington said.
2. Their experience is frequently questioned by those who don’t get it.
Without being made aware of invisible disabilities, many people then tend to write non-visible disabilities off. Yet these issues can be debilitating for those who experience them. For example, even after surgery, scoliosis led to immense pain for Sanders.
“I was in severe pain for about four years,” she said. “It totally impacted my life. I couldn’t stand up, I couldn’t do the dishes, I couldn’t go out with friends, I couldn’t stand at concerts.” Surgeries eventually helped alleviate the pain but Sanders said she still experiences a degree of chronic pain.
Despite this harrowing reality, both Sanders and Adams said others frequently doubted their experiences were that severe.
“When there is something we cannot do, whether that be from exhaustion or pain due to chronic illness or from depressive episodes or a particularly bad side effect, we are told we are faking it, that it really isn’t that bad or we just need to suck it up,” Adams said. “This fear of being told I was lying or making excuses often kept me from telling friends or teachers that I had a seizure, just perpetuating the invisibility and stigma.”
Beyond stigma, the normalized discrediting of invisible disabilities can prove economically detrimental to those who experience in them. As Joyce Smithey, a lawyer who specializes in labor and employment, told NPR in March, individuals with invisible disabilities who request accommodations are often told by their employers they “don’t do that as a policy” — even though these individuals are legally entitled to these accommodations.
3. It can be socially and professionally challenging.
Sanders’ biggest source of anxiety while living with scoliosis — even in the midst of chronic pain and re-learning to walk — was that some friends and coworkers interpreted her disability as laziness and failed to understand the extent to which her disability debilitated her.
“We live in a world of hyperbole where people say, ‘I’m literally dying’ all the time,” she said. “If you actually feel like you’re in enough pain to say that — how do you explain that without it sounding like it’s more hyperbole? I think especially in the culture that we’re in and the language millennials especially use, it’s really hard to explain how bad your situation actually is.”
Sanders said she also faced hostility from others, as severe side effects from medication prescribed to her post-surgery rendered her physically unable to commute to work. “People couldn’t seem to grasp that,” she said, adding that they would question how sick she actually was.
“I don’t want anybody to worship me as an idol,” Sanders said. “Everybody goes through their own battles and struggles. I just want somebody to be like, ‘I understand you can’t do this and I don’t want you to feel guilty about it.'”
4. Some downplay their experiences to avoid awkward social situations.
Both Sanders and Adams described downplaying their experiences to manage others’ judgment of them.
“I would never break down and cry in the middle of work, because that’s just not what you do,” Sanders said. “And the people with chronic pain I know, that’s not what they do. They smile and kind of truck it out until they can’t, and they go home and that’s when they collapse. I can’t tell you how many times that my boyfriend would come home and I would be heaving in sobs because I was in so much pain.”
But Sanders’ attempts to share her experience with others often resulted in off-base suggestions that she should “just stop” taking her medication if the side effects were so bad or “try yoga,” although she was physically incapable of doing so. Downplaying her experience, therefore, seemed like the best option.
Adams described this experience as “internalized ableism” in a 2014 blog post. “I have really started to believe I won’t be able to succeed as a person with a disability unless I downplay it as much as I can,” she wrote.
Ideally, Sanders said, people should simply acknowledge others’ experiences, rather than resisting it or offering unhelpful suggestions.
5. Dealing with these disabilities can be enormously expensive.
In addition to social struggles, invisible disabilities are costly to deal with. While the Affordable Care Act requires health insurers to provide coverage to those with pre-existing health conditions, people with disabilities still have to shoulder costs associated with their conditions. For example, Sanders was prescribed medication that personally cost her $500 a bottle, and only lasted 12 days. Even with two forms of medical insurance, she paid about $5,000 of a $200,000 surgery — which was just one of three procedures she needed.
In addition to the straight financial costs the experience cost Sanders time and energy — she spent countless hours on the phone fighting and negotiating various medical bills, she told Mic, and perhaps detrimentally continued to work throughout her recovery because she couldn’t afford not to.
6. For some, the experience can be empowering.
Because many individuals with disabilities can “pass” as able-bodied, some with invisible disabilities have said their experiences are not “bad enough” to qualify them as disabled and feel isolated from potential support systems and communities.
Adams said she struggled with this feeling until finding an online epilepsy forum where users talked about the neurological disorder as a disability and as an identity. Following suit helped her feel empowered.
“By accepting [epilepsy] as part of who I was, rather than some external factor, I am able to better deal with those little annoyances, with the micro-aggressions, and with the misunderstanding from my friends,” Adams said. “By looking at it from the perspective of an identity, it felt less like a disease that needed to be fixed, and helped me better accept that I would be living with this for the rest of my life.”
Claiming the experience as part of her identity also empowered Adams to discuss her experience and subsequently raise awareness about it.
“The more open I am about my experiences, the more I can challenge the stigma surrounding disability and health,” she said. “When I casually mention my neurologist or meds or struggles obtaining a driver’s license, people often do a quick double-take, and I hope take a moment to reflect on how these things are a normal part of so many people’s lives, even if they have never noticed.”
Being more aware of invisible disabilities can create a culture in which all individuals are with equal respect and dignity. But it’s crucial to note the egregious disadvantages these individuals still unnecessarily, and often silently) face simply because they live with a disability. It’s time to start a conversation and recognize that the struggles individuals face may not always be visible — but they must always be taken seriously.
Hope you enjoyed reading this article I snagged from mic.com
It struck me, particularly about able-bodied people using my story as their inspiration.
Here is the difficult thing about inspiring others – it makes me feel I must always remain strong and steadfast. It becomes difficult to be honest when I am inspiration. I can’t remember who said it, but a woman with physical disabilities said “no matter how long you smile at a set of stairs, they will not turn into an escalator”.
While I find myself flattered to be an inspiration, I would prefer to just be motivation to not take the little things for granted. Each and every time you get out of bed in the morning, celebrate not being dizzy, when you drive your car, when you go to work, when you go out with friends, CELEBRATE those moments!! Don’t let my story “inspire” you… instead let it motivate you.
Matt got a new job, which is incredible. I know it has taken some of the financial weight off of his shoulders. He is out of the house for twelve hours a day, back to working five days a week.
It has certainly been an adjustment for the both of us.
His previous employer was wonderful in letting him take time off to help me out if I needed it. He was working part-time and only four days a week. This enabled him to be with me for almost all of my appointments, he was home by 3:30 or 4:00 p.m. every day.
We were able to spend a lot of time together. He could check his phone regularly, so he would know when I was falling at home. Now sometimes it’s hours before we can talk for him to know I fell and hurt my knee, elbow, hand, ankle… or all of the above. One day I missed the last stair and landed on my back – had the air knocked out of me. As I laid there, gasping for air, I had a profound moment of fear. I knew I wasn’t dying, but I had the thought, I could fall, crack my head open, and bleed out. No one would have a clue.
A couple of weeks ago he mentioned how proud he was of me for making this adjustment so well. Of course, it brought me immediately to tears. He is so thoughtful. I know he worries about me. All of our partners/spouses/caregivers worry about us when they aren’t home.
Somehow we get used to falling over, bruises all over – we forget how those who understand us worry.
We all have to adjust, sometimes daily. No two days are ever the same for me, even to many they would look pretty similar.
The moment when someone acknowledges our accomplishments. That moment when someone acknowledges our suffering. It’s a beautiful moment.
The difficult moments come when you miss that validation. I called a member of my family about the exciting news I was accepted into the assistance dog program and they simply said, “I know hundreds of people who really need a service dog.” Implying that someone like me doesn’t “really need” one. My mom always says how irritating it is that some who see me at most, four times a year, knows enough to decide what my life is truly like.
I don’t expect strangers or even acquaintances to get me. I don’t even expect some of my best friends to get it, but I do expect family (both blood and chosen) to at least want to understand what the hell I go through.
People have no idea how much time I spend trying for validation.
There are some people who no matter how hard I try to educate, they just don’t want to understand me. Probably because I “look” fine. If I had cancer or a flesh eating disease they would have to understand because it would be in their faces, and it’s socially required to care deeply about these external disabilities.
When you have an invisible one though, there isn’t as great a need to understand, because as long as I put on my most dazzling smile it doesn’t exist.
Maybe I just need a better attitude, maybe I will never get through to some people. But then why subject myself to it? Phyllis will change my life. Give me back independence, confidence, freedom… so it hurt deeply when certain individuals were shocked or didn’t deem me worthy of such a gift. It won’t stop hurting either. No matter how badass I try to come across. I cried about it when I go off the phone with them and I cry about it writing this now.
Matt tells me it’s a great time to educate people… I totally agree, but when it’s family, putting your hurt aside to explain for the 651,500,284th time what Meniere’s Disease is, it stops being a “teachable moment.” It’s picking at an open wound. It’s beating a dead horse.
This is probably coming across as crass, or blunt. But it’s the world many of us chronics live in. We spend so much time seeking validation, for the good, bad, and ugly of this disease. We find validation in the strangest ways sometimes. I have such a great group of support from fellow suffers, from here, from Facebook, and from my face to face support group.
I truly don’t expect people to be experts on my disease. I just ask they believe me, celebrate the great moments and validate the bad ones. There is nothing better than having someone acknowledge what you are experiencing.
It’s been a long time since I wrote. There has been so much going on in my life it is hard to keep up. I am in a difficult course for school so that is eating up a lot of computer spoons – you know how it goes.
I threw a surprise birthday party for my mother’s 60th birthday. It was exhausting, but turned out perfectly. After the party was over and we were sitting around the fire, Elli and Nick announced they want to Matt and I to be Chevelle’s godparents. I was so touched and overcome with emotion, it was really a sweet gesture and we of course, were honored to be the godparents to an angel.
On Monday I met my assistance dog, whose name is Phyllis. She is a two year old black lab retriever.
There are several types of tasks Phyllis will be able to assist me with. Most importantly, helping me up when I fall, retrieving items I drop, an emergency phone, a cane, and help with laundry.
With every amazing accomplishment comes the negativity and I think it’s important I share it, as many of us feel so alone in these situations. I have had a few family members be shocked an organization would give “someone like me” an assistance dog. It’s the catch 22, if I were in a wheelchair or missing a limb it would be obvious why I would need a service dog. But I “look” normal, so they question my authenticity, my intentions… more on that in next post.
For now, I am celebrating this exciting time of my life.