John Cernosek’s speech at the
John’s Hopkins Annual Ataxia Picnic
Baltimore, MD
September, 2010
Good morning. Thank you.
We are all here at the Johns Hopkins Ataxia Picnic because ataxia hurts the people it affects, in so many ways, and each of us is doing something about it. Or, maybe you saw the puppies and Ferraris and smelled the delicious food, and figured, ‘whatever this is, it’s pretty cool so far. I’ll check it out.’ If you are one of those people, a couple points you need to understand going forward- ataxia is a medical thing, and it’s bad. And I have it.
Now that we’re all up to speed, I’m not going to spend my precious public speaking moments bad-mouthing ataxia. I have too much respect for it. And plenty of literature around this room does that. I will discuss some approaches to living with this thing and not hating it; some ways to build a life for yourself that’s within your means; that you can enjoy. I’ll talk about how the speaker at last year’s picnic, Dr. Tom Clouse, changed my life by introducing me to his methods of fitness. I’ll talk about what the present and near future holds for the treatment of persons with ataxia. And I’ll be doing all of this while talking about myself.
I grew up in Crofton- a nice little town about 45 minutes from here. I had a wonderful childhood- always the athlete- a great family and friends and a lot going for me. Sometime in 8th grade, I started to notice that where my friends were growing faster and stronger, I was slowly moving in the other direction. I didn’t know why this was happening, or what I could do about it. My body was failing me. I lost faith in myself pretty quickly.
I silently observed this decline throughout high school- a stumble on the soccer field, a fall on some steps. You know how it goes. Increasingly embarrassing incidents. My friends also observed it, and they were not silent about it. I’ll just say, some fun was had at my expense, and my attitude became, ‘I am a living joke.’ I’ve always been a bit of a comedian, so to be a living joke was not the worst thing in the world, but I wasn’t in control of this one. I didn’t like it.
I got through high school still wondering what the hell was going on, and went to college at Saint Joseph’s University in Philadelphia. Once during freshman year, on a Wednesday afternoon, at like 2 o’clock, I was walking back from class and I stopped to say hi to the smokers on the bench outside my dorm. One of them said to me. “Man, you are so awesome.”
So I said, “Thanks! Why?” He said, “You are always wasted. Every time I’ve seen you. That’s so awesome.” I just laughed. How do you respond to that? I couldn’t have explained it if I wanted to. I couldn’t have explained it if he wanted me to.
A few months later, after realizing this thing was not going to fix itself and just go away, I saw a doctor and took my diagnosis of Friedreich’s ataxia. I was too scared to research it or even talk about it with my family. I heard what the doctor said, and I felt what it was doing to me, and that was enough ataxia for my liking. Two years later in my biology class, FA was actually mentioned as an example of a rare genetic disease. I couldn’t even say, ‘Hey teacher, I have that.’ I was still trying to hide. I graduated in 4 years without ever uttering the word ataxia, and moved back home.
Then, there were some days that lacked direction. It was tough. I didn’t know what I was capable of doing. My condition was declining. I had no job, no income, no confidence; good times with my friends were sparse. I was sinking further and further out of touch with society and reality. It became depressing. I went back to school for a little just to have a reason to get out of bed.
A little more than a year out of college I decided to begin facing everything. I did the research. I started talking to my family. They are my support- my parents, my sisters, my cousins. I don’t like to think about where I’d be without them. I told my friends about ataxia; they apologized for making fun of me. I told them it was okay; it’s not like they were ever clever anyway. The scariest moment of my life was in my best friend’s basement, seconds before telling him about ataxia. I had such a hard time getting those words out of my throat. I had a hard time making the adjustment, accepting who I was, trusting others to accept who I was. I still have a hard time with the adjustments I have to make. It’s hard to change, and not be in control. It doesn’t matter how gradual the change is. It’s uncomfortable. But, confronting myself was a better option than hiding from myself, and from the world.
I had to establish a new identity; one that embraced everything about who I was; one that embraced ataxia. I bought a really expensive cane that I carry with me in public, mainly to say,’ Hey man, I’m not drunk. There are other things going on with my body that you don’t especially need to worry about.’ The HurriCane, as I call it, achieves that, and people are now super nice to me. The cane evokes compassion. Everyone smiles and holds the door. I’d rather not be in this situation, but I’ve witnessed some real, genuine kindness from unexpected places as a result of it. That’s all right.
I joined a support group, and involved myself with the community. At one of the meetings, a lady was there from the Maryland Department of Disabilities, telling us about an internship program they were offering. I applied and was accepted into the program. I helped people with disabilities enroll in Medicaid. I made a little bit of money, and the first thing I did was move out of my parents’ house. I needed some independence. I completed the internship and it led to the job I have today. I am a Community Work Incentives Coordinator at a center for independent living. What that means is, if you’re getting Social Security disability benefits and you want to work and you want to know how your benefits will be affected by your income, you call me.
I started the job in November of 08. I did not love it. I had to wake up early to an alarm, get ready, my commute was over an hour each way, my office only had seven people, and they were all older. Then there was the work. I was not totally sure what being a CWIC was all about, but the training involved sitting in a tiny, stuffy room with no windows for eight hours a day studying a 700 page manual about Social Security disability benefits. It’s not exactly riveting stuff. Four months straight of this and a 6 part written exam and I was certified, which was great, but it meant I now had to take on a case load. I did not love that. In fact, I did not like it at all. I was overwhelmed. I was inexperienced and my consumers could tell. They seemed to take that personally. They’d be rude and talk to me like I shouldn’t be there. It was discouraging. I didn’t think it was going to work out. This wasn’t the job for me. I wanted to quit.
But I didn’t. They kept paying me, and I kept going. I had a job during the Great Recession and I thought that was pretty neat, even if it was really hard and unpleasant. I liked having something to do every day. The company merged into one big office, and I made some great friends whom I now get to see and chat with every day. And the more experience I gained doing the job, the better I got at it. Now I’m a pretty good CWIC, and I like it sometimes. It’s not my dream job, but it’s something. Something I can try my best at and take pride in and learn what it means to be accountable. Also, all of my consumers are in a rough place- they all have disabilities, they’re financially strapped, and they’re confused because the rule book is 700 pages. There are a lot of them, and they will do any kind of work to get by and provide lives for themselves and their families. Anything. They don’t care if they don’t love the job. Why should I? My consumers inspire me and motivate me every day.
That’s my current profession. If you receive SSI or SSDI and you have questions about how your benefits will be affected by work activity, come see me and I’ll give you my card and you can call me during the week. I don’t want to talk benefits on the weekend.
In terms of the ataxia, it’s no fun to deal with. I got the cane in 06 and a wheelchair in 08, just for distances. I used it more and more, and in July of 09 I broke a bone in my foot while walking across the room to plug my phone into the charger. With an unstable and declining condition, a weak foot, and 6 weeks of no activity so it could heal, I thought my walking days were over.
Then, Dr. Tom Clouse came to town. We met for four sessions over two weeks last September. He taught me how to improve physically. I don’t have time to get into the specifics of his teachings, and that’s a good thing because I could talk all day about how fantastic Tom Clouse and his teachings are. He explained what needed to be done to improve and showed me how to do it. For the last year I’ve been doing it. It is not easy. It’s extremely frustrating and difficult work. It’s like having another job that I don’t love- doing these intense exercises every night and reading about biomechanics. I’ve been improving, little by little, so it’s got to be done. I owe it to myself. This method is treatment. I say that with the authority of a patient who is diligent with my exercise, diet, research and observations. This is treatment. My symptoms continue to improve across the board, and there are absolutely no negative side effects. I recently participated in a mile walk for Nick Markakis’ charity for distressed children. He’s the right fielder for the Baltimore Orioles, and my favorite player. I finished in last place by a good half hour, but I finished the mile with no help, and I got a picture with Nick and his autograph. It was awesome. And I have Dr. Clouse to thank.
I don’t know how to express the emotions that I feel when I notice an improvement. There’s a little party inside of my brain, a sensation of new independence, then it’s back to work, because there’s still a ways to go.
That’s what we’re doing here with the Arts for Ataxia. It’s about moving correctly, and doing with your body what you can, and testing your limits. What better way to do that than dance? I’m excited for this program. I’m excited for the results I know this program will produce. I’m excited for it to catch on, and for people with ataxia everywhere to feel what I’ve been feeling for the last year. I’m thankful to Johns Hopkins for putting it on, and to everyone involved, because it’s going to be great.
I’m a big baseball fan. The Orioles are my team. Up until August 3rd, they were on pace to have an historically awful season. Then, they hired Buck Showalter. Since he took the helm, with the same players playing the same game, the O’s are one of the best teams in the league. Over the course of a season, and life, everyone goes through slumps. You don’t get the bounces and breaks and things don’t go your way. Buck says, “Your attitude should never go in a slump. Your effort should never go in a slump. There are certain absolutes that you control.” He’s right.
John Cernosek
Sep. 2010