Twelve years ago I started having some troubling medical issues. I was employed at Future Shop as a Home Theatre Product Expert (sales guy). At first it was just stomach aches. Soon it developed into a life lived within the glossy confines of the bathroom and I was forced to take leave from work until I could figure out what was happening. I went to a few doctors until I was referred to a gastroenterologist. After many tests, the specialist indicated I had a hernia. I asked him if this was the source of my pain and constant need for a nearby lavatory. He said it may be, and promptly booked me for a surgery three days later. I woke up during the botched procedure and the rest of that story ends in PTSD (I’ll expand on that in another post).
During these issues, there was a supposed rumour going around that I was a heroin addict. I do not understand where that came from since I don’t even think I knew anyone who ever did that kind of thing. Yes, I am and have always been shielded from the harsh reality of the underworld. It’s interesting what imaginary diabolical deeds people dream up in the vacuum of one’s absence. I think these kinds of things happen to a lot of reclusive people—not just me.
After a long recovery—during which I increased my consumption of alcohol to a pain-relieving level—I learned to semi-control my issues with diet, over-the-counter medications, and intermittent human-avoidance. The alcohol amped up my confidence and helped cast aside my shame. It wasn’t long after the surgery when I began having infections on my legs that were insanely painful. They would pop up and stay for a few weeks, hindering my ability to walk, then go away for a while. The more pain I had, the more drinking alcohol would make it more tolerable. I hid all of it.
I went on for years that way—pretending nothing was wrong as doctors tried me on antibiotic after antibiotic. Few people knew what was happening with me. I told no one but my immediate family. I pushed on and did great things like compose orchestral scores for films, make videos and TV shows, open a media production facility with other like-minded artists, take over the fledgeling Niagara Music Awards, and a lot more. All of these personal pursuits put me in situations I could control. Most of it could be done from my home (fort) and if not, I had time to prepare. I followed each of my whimsical dreams and they all ended the same way: loss of stamina. It was hard to fake not being in pain and discomfort all the time and it was hard to socialize without the constant need for more booze to get me comfortable enough to deal with it all with a smile. Every time I got into the thick of manifesting an idea, I would run out of steam and would need to withdraw from life in public for a while.
So this went on for some time. By 2015, I had extraordinarily bad infections that would tunnel and turn sections of my inner thigh to raw hamburger. At this point I was getting sepsis each time it got out of my control. I could not work or concentrate on anything and it showed in my finances. It almost killed me. In fact, it was during the worst of my septic issues that I learned about colloidal silver and held a small fundraiser to help me buy a generator to make enough of this stuff that I could bathe in it (extra special heartfelt thanks to everyone who helped me raise enough to buy this machine, and my brother Sean who kicked in just enough to get it into my hands!).
The silver cured the infection in my blood and I came back from what was certain death. But it didn’t stop the infections. It just stopped me from getting sepsis. I still had the volatile irritable bowel and constant tunnelling infections that took over even more of my body’s real estate. This is when I devoted two years to studying and experimenting with colloidal silver. I constructed a lab and learned a little chemistry and biology. I penned a few PDFs and got in touch with some universities. By 2017 I had built a 2500-member Facebook colloidal silver teaching group and, at the same time, my infection problem grew much worse. I couldn’t understand why silver would kill every infection it was thrown at but not mine—aside from keeping it from entering my blood again.
In late 2017, I was re-elected to a third term on the executive board of AFM Local 298, and this time I was named Vice President. I was consuming far more alcohol than any human being should ever consume just to beat the pain and subsequent depression (among other anxiety issues). This gave me the illusion of adequate health. I moved to another town in 2018 and then began bleeding almost at all times. Sometimes I would lose a lot of blood, sometimes a little. I had been to so many doctors who didn’t know what was going on. Most thought the mesh (that was surgically implanted in my abdominal wall a decade previous in the hernia operation) was the culprit and scheduled me for surgery to remove it.
I quit drinking in May of 2018 and then smoking. I also had no choice but to take a leave from the board at AFM 298—there was just no way I could attend functions dripping with blood, suffering in pain, and with no confidence-juice to help fake my way through it. That was the last of my required external duties. I spent the subsequent past year immersed in books, courses, and writing, as my mysterious condition got worse. I dove deep into philosophy, quantum theory, and myself. I spent countless hours inside my head trying to figure out where I belong in this universe and cringing at the memories of almost everything I have ever said or done my entire pathetic life. I withdrew completely from all social engagements and even minimized time spent arguing politics on social media (something I used to do frequently). I have been secretly disabled for quite some time and it was becoming more visible now. I gained almost 50 pounds as I had to limit my movements and not walk more than absolutely needed. Quitting smoking and replacing it with food didn’t help, either.
Just before my scheduled surgery, something happened. The surgeon looked at my growing mess again and decided at once it wasn’t an infected mesh. In fact, she thought they weren’t infections at all. She canceled my surgery and instead got me to a dermatologist through my awesome family doctor, Bob. This dermatologist confirmed the surgeon’s thoughts and then told me he knew nothing about my disease and referred me to a specialist.
That appointment was at McMaster Health Sciences on May 6. The Immunodermatologist confirmed finally that I suffer from a rare autoimmune condition called Hidradenitis Suppurativa. Basically, my body thinks there are nasty invaders afoot and keeps sending the troops to destroy them (causing severe inflammation). But there are no invaders. My immune system is malfunctioning. No wonder the silver didn’t eradicate it. Other accompanying conditions that seem to pop up with HS sufferers include Inflammatory Bowel Disease (IBD) and a host of other ailments I have experienced.
Most doctors aren’t aware of HS’s existence let alone how to treat it. I am in stage three. It is not contagious. It is an invisible disease for people who wear clothing. If left untreated, it will eventually spread all over my body like some horrifying flesh-eating disease. There is no cure but there’s a treatment I gave a dozen vials of blood to find out if I qualify for. The treatment is a Tumour Necrosis Factor (TNF) blocker and it may cause a considerably weakened immune system and a small possibility of developing a rare form of incurable cancer. There is another, more natural treatment option that requires a very restricted diet that would rob the last remaining joy from my life. Not great options.
So now I wait for a home care team to come to my house and show me how to inject myself with immunosuppressants. This could go well and could be the beginning of a new life, or it could go horribly wrong and I react unfavourably to the drug. I have one final second opinion scheduled in Toronto with a leading doctor in this field.
Until this post, only a handful of people knew what I’ve been going through. My parents and wife, Bridget, have been beyond wonderful and caring through all this. I literally could not have existed this long without them. I fear everyone else who knows me might think I’m just flakey and antisocial. Well, that last part may be true regardless of my medical condition, but it is exacerbated by it.
I have kept hidden away in Gravelly Bay this last year and have taken a pass on so many fabulous invitations to fantastic social things from many wonderful people who probably think I dislike them—or the more likely judgement, “That Nathan Chamberland guy is an asshole.”
I have grown crotchety in all this. That’s for sure. So I’d like to take a moment to apologize to every one of my friends and extended family members who wonder what they ever did wrong, or feel in any way ignored by me. I experience times when I just don’t have the energy to answer with the cringe-worthy lie, “I’m doing great, and you?”
I’m sick of faking it ‘till I’m making it—or faking anything for that matter. I just want to get better. I have yet to come up with a good elevator-pitch for explaining my disease and resulting absence and flakiness. So I mostly refrain from even talking to people. I’m also trying to work through PTSD, a year sober, and tremendous pain which I have been minimally controlling with cannabis since abstaining from visiting with my old numbing fake-friend, alcohol. I consume a lot of cannabis, actually. It’s either that or 600mg of ibuprofen every six hours. I don’t grow my own and can barely afford this medicine, but at least it won’t shut down my kidneys.
I didn’t know if I was ever going to write this and publish it. I have never told the public any of this. I guess I have my answer now. And if you ever wondered what happened to me… I didn’t die, or become wealthy, or find new friends. And I certainly didn’t become a heroin junky and lurk in the shadows of the everlasting night.
I’ve been reading and writing and learning and studying and visiting my amazing parents and nerding out on superhero movies and medieval TV shows. And trying to keep myself positive. Alone. In my basement study. Avoiding embarrassment. Awaiting something. I’m just not sure what that something is just yet.
I want to thank you for sticking with me this far—both this blog post and in life.
The ribbon colour for HS and all autoimmune diseases is purple. I guess that’s my flag now.
Your friends love you, even the ones of us who have never clapped eyes on you.
Remember the Scout Law? “A Scout is Trustworthy, Loyal, Helpful, Friendly, Courteous, Kind, Obedient, Cheerful, Thrifty, Brave, Clean, and Reverent.”
That’s you — well, except for that obedient, cheerful and reverent crap, but who needs it?
With this, you’re finally being as good a friend to yourself as you always have been to the rest of us. We love you. Let your flag fly.
Wow. Thank you so much for your kind words, Bethany! I apologize for not responding sooner. I love you too and thank you so much for understanding! I just had to break away from pretty much everything until I can get a handle on my life. I know it isn’t classy, I just need some time.
What you wrote above is among the best things anyone has ever said to me. I appreciate it more than you may ever know.
I hope to be back soon! We have many more great conversations to look forward to!
i’M GRATEFUL THAT YOU FINALLY FILLED US IN WITH MORE PARTICULARS ABOUT YOUR CONDITION .I AM SO SORRY YOU HAD TO ENDURE ALL THIS HELL ON EARTH.I HAVE BEEN WORRIED ABOUT YOU AND WISH YOU THE BEST OUTCOME EVER.SENDING YOU GOOD VIBES.lOVE YOU VERY MUCH.
Thank you so much, Grandma! I apologize, I didn’t see this earlier. I have a bot approving human messages.
Thanks for taking the time to post your support after reading all that! I really means a lot to me.
I love you very much too!
Hope to see you out at Father’s Day!