Warning:  KQM/KPM and RM- Don’t read this one. Just don’t.

Drunk is probably an exaggertion, but don’t send me any comments about typos or things that don’t add up. I’ve had just enough to not care… and tomorrow, when I do care, I’d prefer not to know, and don’t intend to edit. A stream of consciousness? More alcohol to bring up stuff I’d rather keep down? You may recall that I’ve done this before (read tht post here) on another tough day. Does this mean I have a problem? Possibly.

Today was Mom’s birthday, the first since she died in December,  and it was a very strange day all around. I went down to a fundraiser walk for Huntington’s Disease, the bitch disease that killed my Mom, my 49 year old aunt and my grandmotehr. I went because it’s Mom’s birthday and my sister was participating, so it seemed like a perfect way to support my sister and honor my mom. However, I realized something while I was there: I’m not cut out for these events. I want to be! I really do. I want to find strength in numbers, feel part of a movement… but I don’t. It only freaked me out, to be honest.

I drove an hour and a half to be there. I listened to good music and any little anxieties that came up, I pushed down aside. I wanted to go and just be there with my sister. She has Huntington’s too, and while we don’t talk about it much, it’s always there. Like the disease, it is insidious. There is no cure for the HD, there is no cure for the anxiety it causes in the those (like me) who watch people we love get sick and die of it. And frankly, being at an event where I was surrounded by that, was not the way to celebrate my Mom. She hated this disease, and she had every right to. I hate it. And while I get that you can’t fight it, that you need to accept life and just work through things, this is not one of those things that I feel good about facing. It SUCKS! I am angry and bitter about it. I’m not hopeful.

Just the same, I drove down to Seattle and planning to attend the event and be a part of it all. Instead, I arrived and had the wind knocked out of me right off the bat. I was waiting in the bathroom, looking out at the crowd and already, silently assessing who did and didn’t have Huntington’s, who looked like a caregiver and who looked like a patient, trying to find an invisible marker on each and every f’ing person there, when I saw my sister in the crowd. At first my heart did a little “Aha! There she is…,” but then I noticed something. I noticed that the way she was standing: the way her body was moving, was the way our mother, and our grandmother before that, moved… and I suddenly saw some tiny choreas that I haven’t seen before. It wasn’t as dramatic as Mom or Grandma, it was still subtle, but I saw it. I saw Huntington’s right there… with my sister. A crowd of people and she was one of them. And I couldn’t bear to look.

I went to the bathroom stall and tried to calm myslef. I tried to pretend it was just nothing… something I’d seen in the sun’s glare, something I’d seen because I was looking for it? Something that I saw because I’ve spent more than twenty years watching for signs, and adding up symptoms?  But it wasn’t that; it was there. I came out and we hugged. She and her husband were happy I’d come and they greeted me warmly, as I tried not to look at her funny, as I tried to manage my own shit. Impossible. She wanted to introduce me to so many of the people there who she knows… support group members, people she’s met because she’s strong and she’s been in there getting involved for a long time. She has  a huge heart and she’s willing to share it with those people. Not me. I wanted to run from minute one. I could barely stand it.

The theme of the day… for others

But I stayed. I schmoozed. I said hello and was unsure of what else to say. I did the walk, which was short and more symbolic than anything. We walked through a playground and around a field. I saw some young children pointing at us all and laughing… At what? I saw mothers at the playground watch us all, in our matching Team Hope t-shirts (I didn’t have one, I didn’t register ahead), and I saw them trying to figure out what it was. What was passing by their kids? Was it contagious? Should they say something? Should they look away? They just watched us and stared. At what you fools? I wanted to run over and shake them, and say: Do you know that many of these people are sick? That they will get sicker, and they will die? Do you know that my sister is one of them? Do you know that I love her more than you can understand and I will lose her… too? Stop staring and do something!  I just marched on. I tried to have normal conversation and pretend that none of that was registering with me. I tried to smile at all the people… all the people who are sick, or will get sick, or are in my shoes: losing someone they love. Another someone.

It was nothing like the cancer walks I’ve done, where everyone in the crowd, everyone cheering on is there to support. We all know someone who’s had cancer. We all empathize. We’ve been educated to support and get it… we don’t move aaway worried tht maybe we’ll get it too. That was true 30 years ago, but not today. Millions of people where yellow bands on their wrists and we all know what Livestrong is. But watching a group of people in Team Hope t-shirts, with a word: Huntington’s Disease on it… that one one knows the meaning of, only drew blank or concerned stares from the people we passed. I found myself drawn to those expressions, as I tried to hold my head up and walk with conviction: that we will find a cure, that one day my nieces and nephew won’t face this. If you didn’t know: if your parent has it, you then have a 50/50 chance of having it too. Crap odds. So each of my nieces and nephews face this, and I can barely face that. So walking around that park, around the crowded athletic fields, I just kept noticing all the people who didn’t know what to say or do.

Walking with hope.

 I just can’t do it. It came out of my mouth without any thought… just popped out when my sister and I were sitting in the shade, after the walk, waiting for the raffle. I can’t do this again, I told her. I’m not cut out for this. And I’m not. I fundraise. I am there for each of my family members who has Huntington’s and needs support. I’m truly there. But, I can not be in a crowd of people who also have it, and assess each face, each person and wonder who has it, who does not, and how they are all coping. A young man, J, being pushed around the route in a wheelchair. He was clearly in his 20s, so young! His head flopped to the side, the person pushing him talking about him as if he was part of the event, part of the discussion, when J gave no sign of really hearing or being involved, his disease very advanced. “J’s a real Nascar fan,” his caretaker told us. We cheered J on, but I only felt sad. Later, I saw his brother, also in his twenties, walking with the clear chorea ladened gate of someone with HD. It is these involuntary movements that so often make people assume that people with HD are drunk or wasted. Two sons? Two sons! How did their mother bear it? How do their sisters bear it? I could barely be around it.

The wheel chairs lined up in the shade, for those who are further progressed. I needed shade, but I couldn’t stand there. Just couldn’t stand close. I can’t do this again, I told my sister. “What? Why?” She asks. It is just too much. It’s too much to know that Mom lost everything to this disease. I think, before answering.  This is Mom’s birthday and she should be here. If she had gotten lung cancer, after 50 years of smoking, I’d get it, but this? It isn’t fair! That runs through my head too, but I say: It’s enough to watch the people I love most go through this. It’s enough to worry about each of my nephews and nieces, to watch you. I can’t watch all these strangers too. I tell my sister this and she’s quiet. We touch, briefly, our hands… seeking each other for comfort, but not continuing he conversation. I have become tearful and we both know that it’s too much, here.

Neither of us gets the other… entirely. We want to, but how can we? I don’t have it, and she does. Not fair, but the way it is. Neither of us can truly understand the other side. God? Is there a God who truly finds some logic in all of this? And what about Alzheimers, Parkinsons, all the others? Is there logic for all of it? A divine reason? I can’t swallow that. So, that just makes it that much more senseless and cruel. All these people, and this is a fairly small turn out. So many people, and this is not even one of the big diseases (Alzheimer’s, Parkinson’s, MS) that people know about… but it’s huge to us. It’s huge to every person here.

When I’d had more than I could take, I left. I bought a raffle ticket, but didn’t stay to see if I’d won. I’ve already lost. I didn’t collect pamphlets or try to make connections. I’ve got enough connections with this bitch to last the rest of my life. I don’t need anymore. I drove home and tried to listen to music. Every song, every song reminded me of something. The silence was worse. I kept the radio on. I’m not in a self-pitying spiral. Really, I’m not. I know it sounds that way though. It’s just too much. I’ve already lost three people I love to this, how can there be more? It’s just too much. And how am I entitled to these feelings when it’s my sister, and other family members who actually face the disease? Aren’t I the lucky one? I don’t have it. My children can’t have it. Aren’t I the lucky one? It’s just too much to think about. Being at an event where EVERY SINGLE PERSON reminds me of all of this, it’s just too much.

I drove home and I listened to my music. I went out to dinner with Little Man and Smart Guy. We went to Mom’s favorite place and I ordered her/our, favorite drink. It was just too much. We always split it. It comes in a big shaker and it’s a bit too much for one person. I tried telling Smart Guy and Little Man about today. I tried telling them all of this, what it felt like, what I thought being there… but it was jut too much, and I got tearful again, at the table. Little Man held my arm gently. I saw him take it all in, with those thoughtful eyes of his. He is much deeper than he seems, with his silly, puppy-dog antics. Smart Guy rubbed my back and tried to sooth me. But I just kept thinking about a year ago, when Mom was there for dinner and I was annoyed that she wouldn’t wear a nicer shirt. I kept thinking about all those faces today… they are etched in my brain now. I kept thinking about my sister, and my brother… and all the others. It’s just too much.

Want to know more? Watch these:

This video: Pier’s Story Part I  (This is my mother’s doctor, a Seattle story) To continue:  part II, and III  We have been through these same tests and check ups. We’ve met these same people…

And this, on Sunday Morning, on the story of Carol Carr– Who killed her two sons who had HD.

IF you Google Huntington’s Disease documentary, there are many of these brief videos. Warning: Hard to watch.

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