House of Cards

6-5-12     12:54pm

I just got home from a choir concert. Not my choir. A different choir. The last pops concert of my high school choir director. I got to sing as an alumnus.

I saw a lot of people tonight and had a good 3 hours to reflect on my life. On the dynamics between and not between us and on how I have changed, how I’ve stayed the same. It was not a fun 3 hours but I enjoyed the singing.

I am upset by something that happened. There are large portions of my life for which I have no memory. I remember a snapshot here or there, but the rest is blank. I haven’t had ECT. I just have gaps in memory. So, people were coming up to me tonight that expected me to know them and I hadn’t the foggiest idea who they were. My mom says that’s normal, but it’s not. I played along as best I could. I didn’t know what to do. It wasn’t an environment in which I could just say I can’t remember ‘cuz I’m crazy. Or sick. Or whatever. I don’t understand. They were sharing memories about some concerts we did. I remember one song because I did the choreography, but I don’t remember the concert. I remember the music but not the events. I remember that I liked the guy I was talking to in high school and he remembered me, but I couldn’t remember who he is. 

I sit in my kitchen and cry. I DON’T WANT THIS! I don’t want to see these people and their lives. It hurts SO much… I don’t want to remember what I could’ve been. Please. Please. 

I seem rude for not remembering, as if these people weren’t important to me or special. And I feel scared that they will find out my secret, that I’m not okay and that although I’m becoming more honest I still lie every day. I always wanted to have a people. I’ve always had a book.

I sat next to a group of people I always looked up to but was never friends with. And I watched the choir director, whom I most days can’t tolerate, end her career as a high school teacher. And I was so angry at the kids next to me talking during her solo. I turned around and smacked one of ’em with my music. I’m old enough now to realize the gravity of the moment. And to remember to shut up. ;)

In my day to day life I’m not confronted with opportunities for comparison. I know it’s not good to play the what if card. But tonight… (pause) I want that. I want what they have. I don’t even know what it is. But they have independence and freedom. I have a house of cards held together by a lie. A journal. And a black card at Staples.

Would my life be different if I remembered? I think not remembering protects me. But I don’t remember me. Sometimes I ask people what they remember about me. I can’t remember.

I hear “O Sifuni Mungu” (Swahili) in my head and my whole body tingles. Oh to be 13.

© Michelle Routhieaux 2012

I can’t remember, a test & permission

8-22-10                1:35am

I can’t remember what I did for my birthday this year. I remember the night before at Bing Crosby’s and the black dress. I remember at Ralphs not letting them buy me cupcakes (I don’t like Ralphs’ cupcakes.) I remember opening the four cards Mom got me and the bouquet of flowers, but I have no idea what I did that day. Maybe I was sick. I know there was a plan and that it didn’t get followed… (flash) Dinner at Rubio’s. Yes. That wasn’t the plan though. I don’t even remember if I had a party sometime that week. This concerns me as I think it’s something I SHOULD remember. Don’t you?

(break to watch the rest of “Blue Collar Comedy Tour Rides Again”)

I got out my ring last night that I bought when I tested negative for HD. I was thinking about it because last week Sacha mentioned wanting to buy herself an engagement ring and the ring I have is just that. I’d forgotten how beautiful it is. Sadly, after a few hours it hurt my finger so bad that I took it off. Apparently my fingers are fatter now. But I wondered what my reward to myself will be when I get the results of this upcoming test.

I’ve been waiting on a diagnosis for years now. And the list I was expecting from a friend is not coming so I called my neurologist Friday night on a break and told him which test I want him to order. There is one dx I’m looking at in particular. It’s called DRPLA. Good luck Googling it and finding anything useful. This is the best thing I found http://www.ataxia.org.uk/data/files/drpla.pdf. It seems to fit and I’m hoping it’s what I have – not because I want it but because I want an answer. I want a name, some validation. You know? I want to be able to say, “See, I’m not crazy. I DO have an illness and it has a name.” I’d have an answer for, “Why are you twitching?” I’d have some proof that’s it’s not, in fact, a conversion disorder but it is in my head. In my BRAIN, not my thoughts. In my fantasy today I would get this wonderful/awful news and have a Celebrate Life party. The news itself would be a relief. This part of the search would be over. However, if it’s not what I have, it would be devastating… I want to have that party. I want to know what’s going on.

I talked about it with my therapist this week. It’s great having a neurology professor as a therapist. I asked him if he had any tips on dealing with cognitive impairments and he said if it is cell death in that region of the brain the best thing I can do is dance. God is good, isn’t he? (big smile) I also bought a ping pong paddle and balls. It’s all part of the story, revealed one page at a time.

I’m so exhausted. I really should sleep now. I’m going to a piano thing tomorrow and have to be on the trolley in 8 hours. Yuck. Hopefully it’s worth it. Thanks for listening.

Love,

Michelle

© Michelle Routhieaux 2010