My fellow warriors,
I attended my first support group meeting on Saturday.
I have read the pamphlet in Dr. Paparella’s office at least fifty times since I began seeing him about the Meniere’s and Tinnitus support group. I made up 101 excuses to not go. Can’t drive. Too far. Too early. Won’t help me.
This last appointment I decided I had no other choice. I had to go. Just once. To see what it was like.
I had a couple of assumptions.
– Room full of old ladies who are not going to have a clue about my story, my life, my situation
– A group of people who would judge me for the choices I have made with having surgeries (I felt this way with the last group I had)
– A room full of people who looked at Meniere’s Disease like an old friend from high school, who acted as though the disease was not a big deal to… well, deal with!
– People who wore rose colored glasses and saw the world was full of rainbows and sunshine
– People who would mock my anger, frustration, who would be afraid of me and my darkest thoughts
These were my assumptions.
They couldn’t have been farther from what I walked into. I had the cohones to ask Matt if he would go with me and he obliged. We walked into the room and were greeted by Rosie. I quickly peered around the room and saw no one that looked under 30-years-old, I felt my breathe catch in my throat and immediately wanted to bolt. Started making those excuses. They aren’t going to GET me!
She ushered me over to a table and gave me what seemed like 83 pamphlets on Meniere’s. Matt and I put our name tags on and moved down the table and took our seats. We were introduced to the room. I was asked to share my story. I did. The room fell quiet.
Usually when I tell people my story they give the shock and awe face like they either smelled bad cheese or just looked at a garish, macabre murder scene. Not these peeps. It wasn’t as if they diminished the horror of my story, but what I felt from them was empathy. Not sympathy. Not pity. There is a big difference.
They asked me pointed questions. Questions that no one has asked outright. Questions that no one without Meniere’s could possibly ask. They welcomed Matt and I with open arms. There was a feeling of ease, love, and better yet – acceptance. They took me exactly where I was at. I told them I was angry. Pissed actually. Frustrated. Felt like a burden – financial and emotional. Guilty.
I have a difficult time allowing other’s to own their own emotions. When my mother, father, Matt, have a hard time with my Meniere’s I internalize those feelings, make them my own. I have to stop doing this. I have to let them grieve. I can no longer take on anyone else’s emotions about this. The group agreed. Said it was a process. Feeling so empowered.
There were eight people in the group. Six have Meniere’s (non have bilateral like I do), one member does not have Meniere’s but Tinnitus. The eighth member was the husband of one of the women in the group. He sat next to Matt and talked a lot about how he functions as his wive’s support. He and his wife have been married for years and have been fighting this battle together for much longer than Matt and I. He is kind. He is selfless. He is a rock (sometimes literally one to lean on) for his wife. My heart swelled and so did my eyes with tears.
We talked about the darkest moments. I have little inhibitions discussing these types of things with people because it is important for other’s to know they are not alone. I remember one period in particular after I came home from the hospital and was literally stuck in my chair. I remember thinking to myself – I can’t even get up to kill myself. One woman started to giggle and quickly said she shouldn’t be giggling. I laughed out loud and the rest of the room erupted in laughter. You have to laugh about these things. She shared she had told herself the same things. Others opened up about having these thoughts and I was able to begin to heal those wounds with laughter, and support from my cohorts, my warriors.
Matt was quiet but I could feel him radiating, taking everything in. He let me blurt out things that I have probably not even shared with him. He didn’t question me, he gave me the floor and I took it. Usually when I talk to people about the difficult emotional parts of my Meniere’s, even those that love and support me the most, have that look in their eye like I have gone completely over the deep end. These people looked at me with love and acceptance – empathy. They continued to tell me over and over that it would get better. I would learn to manage it. They told me to make a plan. To let myself feel everything.
One of the gentlemen in the room is a former police officer, chased bad guys in Minnesota, took down serial killers. We had an instant connection. I have never felt myself relate more to a 52-year-old man in my life. He shared that he came to the group angry, suicidal, frustrated, deflated, and here he was, laughing, smiling, and it wasn’t a show. It was real. I finally saw it. It can happen. You can learn to live with this. You just have to have the support to do it.
They didn’t use catch phrases like, “Have hope” and “Stay positive” instead they used realistic ways to describe their life. They said things like, “It will get better” and “You learn to manage”. They didn’t ask me to take my anger and transform it into anything. They just asked for me to learn to manage the anger and remember that it will get better. Asking someone to transform anger isn’t fair. Anger is a normative emotion – it has a use, a purpose and to ask someone to manipulate that emotion isn’t possible. Joy doesn’t come knocking at your door, you have to find it. I will not force my anger in joy, rather I will look harder to find my joy.
If you are reading this and need support, please seek out groups in your area or online. YOU ARE NOT ALONE. Your family can reach out for support too. No one should have to suffer this alone!