My name is Jake Chegahno. I am 40 years old and was diagnosed with Ankylosing Spondylitis when I was 25 years old. I had my first painful symptoms when I was 21 and had to drop out of college due to the pain. I had shooting pains going from my lower back to my knee on my right side. So painful I couldn’t walk. The doctor at the time just gave me painkillers but they didn’t really help. So with time and many pills later things got easier. Eventually my doctor gave me an anti-inflammatory, but over the years my body seemed to get slower and rustier.
So by the time I was 25 I couldn’t walk again. I went home to visit my mother one weekend and she took one look at me a rushed me to the doctor right on the spot. The doctor took one look at me and admitted me right into the hospital. I found out my hips were so badly fused I couldn’t walk at all. I tried using a walker, but eventually had to use a wheelchair. I got transferred to London Ontario and got the official word after all my blood work was done that I had Ankylosing Spondylitis.I was in between apartments at the time, technically homeless, so my doctor in London admitted me into hospital for rigorous physiotherapy and occupational therapy, I lived in that hospital for four months, and for someone with hypochondria and bad nerves it was hell. I always tell my friends and new friends that it was my Vietnam, I saw a lot of good people leave our planet during that time. Eventually they replaced both of my hips and life was somewhat back to normal. I had to stay on the anti-inflammatory pills and the occasional pain-killer. I kept active and got my endurance back by playing road hockey every single day and having pick up games on the weekends. I got a bike for the summers and rode everyday for 2-3 hours, I never took the bus again. Skip forward many years and it started to happen again. My body got slower and rustier, I was finding it harder to walk again, my posture was getting worse. My shoulders were getting tighter and stiffer. I got a great job at a publishing company but was finding it harder and harder to continue working, I was taking more and more days off, they started to let me work from home. I made an appointment to see my rhuematologist and she put me on a somewhat new drug called Enbrel, taken subcutaneously. Once again my life was changed I was able to work again, able to walk again. Things were somewhat normal again, although, I was not the same. My posture was getting worse, and with that my self esteem was getting lower. I started to drink more, the pain was gone but this time a different type of pain started. I started to experiment with harder drugs for a brief period. My posture was getting worse with time, I stopped taking my Enbrel because the pain had gone away. I was slipping into a dark depression. I started to eat terribly, pizza, fried foods, anything processed foods. I started to gain weight, I started declining social invites. My dental health was being neglected. Then it happened, I realized I was at rock bottom. Emotionally and spiritually dead. So I drank a little more. And finally broke the law to fund my habit.
One night I went to a friend’s house to listen to his music, I myself had not played a guitar in over a year. Mine was stolen by coked up friend and I wasn’t able to get one to replace it. I picked up his guitar and it hurt my hands to play, but it was a good hurt, like when I first picked it up when I was 15. Inspiration had hit me, I felt a spark. So I started saving up, getting web development gigs from craigslist. And eventually I got a guitar, a crappy no name electric telecaster copy, with a little audio interface so I could play and record from my computer.
Then something odd happened to me. I woke up one morning and said “thank you”, not sure to whom, but it felt good to say it. Over time I started to add things, and I say it everyday including this morning. “thank you for letting me see today” .
Everyday things get a little better, I am in a band now, we have been playing shows around town, I had a song of mine played on the radio. For me to be locked away in my apartment scared of the world,then to be standing on a stage being the centre of attention still blows me away. I also met the most amazing woman named Zoë who inspires me daily and who loves me for me, she sees through my disability. I got a new fun job. I am eating better, losing weight slowly. Getting in contact with my doctors, my dentist, an eye doctor. Getting counseling for depression and the drinking. I am drinking less and feeling better everyday about it. Most importantly I am starting to love myself again. I am in the process of getting back on Enbrel, my right wrist and hand is getting worse, I hope Enbrel slows the progression. It scares me to think of not being able to play the guitar. If that happens I think I have the tools in place not to go to that dark place again.So I am standing tall as I can and moving on. Life is too short to worry about things I have no control over. Yes I have terrible posture, I can’t do anything about that. I can only stand tall.
Thank you for letting me see today!
Owen Sound, Ontario Canada
Jake passed away on February 13, 2017