Jake Chegahno

June 27, 1971 – February 13, 2017

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!

My band: https://www.facebook.com/WoemanWoe
Zoë’s Blog: http://blogs.psychcentral.com/adhd-zoe

Owen Sound, Ontario Canada

Jake passed away on February 13, 2017

12 Responses to “Jake Chegahno”

  1. Dear Jake,
    The one thing that I love about doing this, is the fact I’m getting the honor to read so many amazing and courageous stories. I want to thank you for opening your soul for us to look inside, takes a strong man to do that.
    Thank you for that.

    Sincerely Cookie

  2. Jake,

    I am so glad you found something to inspire you and pick you up out of that dark place. Sometimes it takes hitting rock bottom to see things from a better perspective. Keep standing tall!

    Deanna Williams: Face 20

  3. Rosemary Huff: I really appreciated reading this. I’m praying that Jake will always be able to play the guitar and find joy in it, that Enbrel will help him, that he will always have love in his life, and will always know he isn’t alone.

  4. Thank you for telling us your story so truthfully, that must have taken some courage. I hope you continue to with your journey and find the stability and happiness in your relationship and your music you so deserve xx

  5. Jake will always have love in his life. I have been by his side as a goofy sidekick for almost twenty years now. There have been as many laughs as there have been tears, and he has been true to his friends over all the years. I will never forget the London years and it took me a long time to really comprehend what was happening to my friend, to comprehend that an evil illness has had him on the ropes. And yet he floats like a butterfly and stings like a bee. Thanks for sharing man…

  6. “Yes I have terrible posture, I can’t do anything about that. I can only stand tall.”

    Dry wit that keeps it all in perspective! That’s the Jake I know! A truly original axe man whose performances leave us spellbound with his creativity. A dynamic fixture on the local arts scene who has a powerful social conscience. And an all-round great guy. Privileged to know him!

  7. Jake, now you have me in tears reading your’s and a few other stories, but i just wanted to let you know that i am so proud to have you as a nephew, as you know,i found out about 4 years ago that i have rheumatoid arthritis, and i thought that was the end of my life,but i know now that this is nothing compared to what you have..and it’s nice to see you get out in the public and do what you like doing, and i’m happy for you that you got a girlfriend whom i’m sure is a nice person and will keep you in line…lol…well, you continue Walking Tall and proud, love you lots …Auntie Reva.

  8. Hey Jake ~ It was my pleasure to meet you in the grocery store a while back (I’m a friend of both Richard Sitoski & Zoe). Thanks for sharing the story of your pain and moving forward. You are a man of strength and true bravery.

  9. Behind every human there is a story…and when you know that story, you have a greater understanding of the miles walked in those shoes. Thank you for sharing your story, Jake!

    Peace and wellness to you…and of course, music!

  10. You are the easiest, most intuitive musician I have worked with, Jake… as I have told you…. and your electric guitar adds that special magic I only dreamed about when I wanted to start adding musical sounds to my spoken word… whether it’s originals or covers of some cool songs with great lyrics.

  11. Hi
    Thanks for the kind words. My life has always been lived at 33 1/3 rpm.

    Thank you so much

    Thank you for letting me see today

  12. Rest in peace.

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