So it’s taken me a day or so to process the 3 Day Ataxia Conference that Patrick & I attended in Denver this past weekend. I am usually NEVER at a loss for words but I spent several days rather speechless….believe it or not.
Ataxia describes a lack of muscle control during voluntary movements, such as walking or picking up objects. A sign of an underlying condition, ataxia can affect movement, speech, eye movement and swallowing.
I am not sure what either of us expected. I know we both felt a tad nervous and worried about who and what we would see. I think I can speak for both of us when I say, honestly, there was a fear of “Seeing our future”. You know- people in wheelchairs and on walkers and unable to move or speak. I like to live in a little world called “Denial” so this was going to sort of rock my world a little and shove it in my face. Patrick has never been social, or said much, or liked people in general so this was a BIG step for him. I feel as if I don’t want to talk about HIS experience. Because it was HIS. Not mine. And though I live this everyday it does not afflict my body so my experience is different than his. So I’ll speak for me.
First of all I met some unbelievably amazing people. Damn. Sometimes its funny to see or hear people complain. In person, on social media, on tv, wherever. We all do it. It’s human nature. “I hate daylight savings it makes me tired”, “my kids are driving me mad”, “I’m too fat”, “I have a headache”…whatever it is we all complain. I am no exception to that. But a few days with ataxans (or anyone dealing with a disability) can really change your perspective.
You know I have a joint disorder. Its an autoimmune disease. I hurt. My joints ache. I get headaches from it. But I can walk and talk and exercise and jump and drive and run. They cannot. They never will again. Walking to the bathroom takes ten times as long for someone with ataxia. Trying to speak and get your point across takes quite awhile as well. This is a disease who is NOT friends with patience. And I am one of the most impatient people on Earth. Ironic. You know Im not sure if I could ever be as strong as some of the people I met. Despite being told you shouldn’t have children, the inability to speak or drive or walk or write they are living life fuller than most able bodied people. They dress up, they speak, they persist with physical therapy (sometimes painful), they become guinea pigs for doctors testing drugs and live with the side effects in hopes of helping others in the future. They have jobs, they exercise, they get on planes, they go to movies, they read books- and its all so unbelievable difficult you cannot even understand.
What an inspiring weekend for me. What an undeniable punch to the gut. The fear of my future, of Patrick’s future was quickly replaced with a sense of overwhelming gratitude for my health, for my abilities, for how able Patrick is. My heart is so full. I don’t have much to complain about. I don’t know- maybe I do. There’s times I feel sorry for myself. That my future is not what I had planned. That other people have “normal husbands”. That people complain about stupid things. But that’s just human nature. We all complain. And NOBODY can predict or plan their future…despite your grandest efforts.
I don’t think I can put into words all that we experienced. All that I experienced this weekend. At this conference. Maybe I shouldn’t try. A few of the topics were very interesting. I learned quite a bit. I also know that Im truly grateful to live in a state where medicinal marijuana is legal. I cannot for the life of me understand why people would NOT think that those that are suffering should be allowed to be given a plant that helps alleviate their suffering. Pardon my french but what assholes. I tell ya what- if you are so against medicinal marijuana then when one of your family members is afflicted with a debilitating illness that can be helped by said plant…..don’t give to them. Since you don’t think its ok. Thank God for Colorado!
Off of my rant now. There were so many cool parts of the weekend but I left with an overall since of HOPE and positivity. The “partners of ataxia” group I sat in was JUST spouses & partners of those with ataxia. We cried and hugged and talked rawly and openly about how difficult this journey has been for us. It was draining. It was sad. It was helpful. But the next day I sat in on Patrick’s group- you know all of the people that had his type of ataxia. They varied in age, were split equally male and female, varied in severity, etc. Not one tear. They were hilarious, funny, sarcastic, positive, helpful, demonstrated exercises, never once mentioned feeling sad or hopeless. They were so much stronger than we were. SO MUCH. I am in awe.
And as Saturday night’s dinner ended the dance floor opened. Yep. And although I had joked about filming this craziness of people with balance disorders dancing and posting it on youtube…once the music started it didn’t seem so unusual. Not so youtube worthy. In fact it was just like any wedding reception I’ve been to. Happy, tipsy, funny people hear corny music and they dance. They dance like none is watching. And shouldn’t we all?