3 a.m.

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 sowed my oats. 

We all have metaphorical trash in our backyard. 

I just don’t like having to pick up yours. 


Ping pong ball these days…

My life is never boring.

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.


The ‘right’ way to grieve…

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.

Fuck it. Future Amanda can over-analyze.

Back to the grind…



Death is ugly.

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.


Goodbye Jim

Jim Johnson.

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

Death & Dying


My grandma died.

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.