On October 28th, 2004, my life changed permanently.

It had been a busy year, one might have said ‘pivotal’. I had written and directed my first short film, “Blind Date”. I had directed and acted in an original stage play called “Home Ice” which had a two week run at the (shortlived) Pacific Theatre in Gastown. I was with a new agency which promised links to the fabled Hollywood Mecca, Los Angeles. I had just missed out on eight days of continuity background work with Al Pacino in the movie, “Two For The Money” which I couldn’t do because of a two day overlap of when the play ended and when the filming began. I was walking ten to fifteen miles a day, biking occasionally to visit a brother who lived at the top of North Vancouver. I had a full membership at 24 Hour Fitness which I would hit up at least three times a week. I was 175 pounds and feeling fit and good.

And then, on October 28, 2004, I got on my bike to cycle to the top of North Vancouver because my brother had indicated he wanted to go for a hike in Lynn Valley with his golden retriever, my furry nephew, Ollie.

Halfway up Lynn Valley Road, I felt something was wrong. I couldn’t catch my breath. I had to stop and walk the bike. I had done the trip just the day before with no problem. I felt angry and frustrated and would occasionally get back on the bike and pump hard, to get up those last few hundred yards.

By the time I got to my brother’s house, I felt as though my lungs had collapsed. I could not catch my breath. I had never felt so distressed before in my life. I lay down on his couch and tried to remain still and calm. Ultimately, my brother insisted on the hike. I don’t have a clear memory of going on that hike, nor do I have a clear memory of how I got home.

I went to see my family doctor as soon as possible after that. Unfortunately for me, my family doctor or many years had just taken a job at a children’s hospital in China and sold her medical practice to a Russian Immigrant doctor, for one dollar. It also turned out, that doctor was seven months pregnant and was soon leaving on maternity.

I told her my symptoms and she immediately decided it must be “depression”. She wrote me a prescription for some anti-depressants and told me I’ll be fine in her broken English.

I was not fine.

The next time I tried to get in to see her because the anti-depressants she had given me were just making things worse, she had already gone on leave and one of a revolving door of doctors changed me from whatever had been prescribed to a more potent anti-depressant, Effexor.

Within a few weeks, my weight had balloon thirty pounds and I was barely able to leave my apartment without suffering a crushing fatigue. I would never return to my gym, 24 Hour Fitness, though I dutifully paid the monthly fees for another two years. I had to muster all my strength just to go grocery shopping once every so many weeks.

No more daily walks. The last time I tried to do a walk with my brother and Ollie the golden retriever, I was able to throw three or four stones into the water for the dog before I collapsed on the ground in utter exhaustion. No more walks with brother and dog.

I still worked occasionally, but it took everything I had to make it to an audition. A day of background was a torment. The rest of time, I suffered in silence.

It was only when I moved from my horrible apartment on Chestnut Street in Kitsilano to the brand new Performing Arts Lodge in Coal Harbour that I felt anything like a reprieve. For a brief period, I felt renewed energy though I don’t know why, and the old cycle of exhaustion began to take me over a few short months later. I tried to hide my sickness from others because I was ashamed of it. The very few I mentioned anything about it typically rolled their eyes and insisted it was psychosomatic, likely because I must be inherently lazy (jokingly, of course).

The exertion of doing anything manifested in waves of sweat, flop sweats the kind Albert Brooks’ character in Broadcast News experienced when he took over the anchor desk for an evening broadcast. My weight continued to bloom. I tried in my way to continue to be as useful to my community as possible and to be fully present for auditions and any days of work I might book, either as an actor or as a background performer. Money was always tight, living hand to mouth year after year.

I left the Russian doctor when she decided after returning from her maternity that she preferred being a mother to being a doctor and sold her practice to one of the many walk-in clinics that were opening up in Vancouver to make up for the shortage in family doctors.

But I heard about a doctor in North Vancouver who seemed to understand these strange cases of fatigue. I started seeing her and started down the road of endless bloodtests with no clear results.

It wasn’t until 2007 that I even learned about something called Chronic Fatigue Syndrome. I found out the name of an expert in Vancouver and asked for a referral. Unfortunately for me, the expert was a bit of a flake (now retired, fortunately for all the other sufferers).

The thing I had learned in the meantime was that Chronic Fatigue was a broad label for a set of symptoms that couldn’t be proven by any known medical tests. There were no treatments and there certainly weren’t any cures.

I learned about how to explain the sickness to others, using the metaphor of “spoons”. A healthy person has a hundred spoons to do the things they need to do each day. Someone with CFS has only ten spoons, so they must choose what things they will devote their energies toward.

The disease acquired a new name, Systemic Exertion Intolerance Disease, which had a more defined list of symptoms which I felt better reflected my experience, non-refreshing sleep, constant fatigue but exacerbated by any kind of exertion, whether mental, emotional or physical. The malaise that came after exertion, the post-exertional malaise, became something dreaded and to be avoided. But anything would trigger it. Even a trip four blocks to the grocery store. I would get home drenched in sweat and breathing hard, like a ninety-five year old who had attempted to climb several sets of stairs instead of using an elevator.

At one time, I attempted to wean myself off Effexor since I was quite convinced the original diagnosis of depression was simply wrong, but that was when I discovered how Effexor changes a person’s brain chemistry. The depression that Effexor was supposed to treat became a side-effect now of whatever was afflicting me, and it came with a potentially lethal mental state.

Those who may have doubted me initially are no longer skeptical. Why commit to a ruse for over a decade just to get out of doing anything?

But now it has gotten to the point where I no longer feel I can confidently audition for new roles. I can no longer act which is my life’s passion and the only thing I have wanted to do for the past going on twenty years. I gave up my previous life as a lawyer to pursue this dream. This has not been an easy decision to make.

There are currently no real medical studies into the causes or treatments for what is either called Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease. I going going to try to make an application for Disability Benefits but I am told it is going to be a long and horrible fight for recognition because there are no medical tests which prove the diagnosis. The automatic suspicion is that I am a shirker, a layabout hoping to have an easy life atthe public’s expense. And no doubt many would suspect my motives. But they obviously don’t know me.

It is not an easy place to be. I look healthy. Too healthy, in fact. My weight continued to bloom so that I am now more than eighty pounds heavier than before this illness hit me. My trained voice booms just as loudly as ever. If you don’t look closely, I look perfectly healthy. It’s only closeup that you might see I am bathed in sweat and that I may appear to have trouble standing or breathing. And I can do some activities in short bursts when necessary. It was how I was able to perform the work when I booked roles. The toll it took on me, I was able to delay until after the work was done and the adrenalin no longer flowed through my veins.

I sleep anywhere from ten for fourteen or more hours each night. Getting to sleep in the first place is always a challenge. I try to put off household chores as long as possible. I try to get by with a little grocery shopping as possible. I don’t go to public events. I try to avoid taking transit because the sounds, the light, the crush of people all trigger the malaise. I find it nearly impossible to go and visit others and I am grateful that others do not seek to visit me because I would be confronted with the prospect of cleaning the horror that is my messy apartment. I can’t go for a walk because the moment I am out the door, my clothes are soaked in sweat, and I am already looking for someplace to sit down. I do not enjoy the sunshine because too much light triggers me.

The one thing I try my hardest not to lose is my mental acuity. I constantly sign up for Massive Open Online Courses (MOOCs) to keep my brain active. I try to write constantly so that my body is accustomed to the exertion associated with the activity and doesn’t trigger just because I sat down and wrote a piece like this.

I understand there are others out there who are like me, but we are few and far between. Understandably, the few organizations I have found out there that address the issue of Chronic Fatigue are not well maintained. Who has the energy? And those who do not suffer these symptoms would be hard pressed to be easily convinced to help out.

The drug industry isn’t interested because there’s nothing that has been approved for use that has shown to have any promise. The disease isn’t fatal directly so it isn’t sexy enough for any public plea for funds. There only two celebrity sufferers that I am aware of, the woman who wrote the book “Seabiscuit” and the famous extreme sports Olympic activity photographer who is so ill with it, he has been bedridden for the past three years and his famous medical researcher father is himself unable to obtain funds to do a proper study to get a handle on this. The best he can do is study extreme cases and hope to identify some biomarkers which might be used to diagnose less severe cases like my own.

I am writing about this now openly to raise an awareness of this illness, this invisible illness that as many as a million people or more may suffer from in the United States alone. We suffer in silence because we do not waste away. We hide away. Out of sight, out of mind.

When I was first diagnosing this illness, I learned a most appropriate joke that goes something like this … The doctors says “I’ve got good news and bad news for you. You are suffering from Chronic Fatigue Syndrome. The good news is that it won’t kill you. The bad news is that it won’t kill you.”