The Faces Of F.A.

This goes against every fibre of my being to let people into my personal life from outside of my family, but if my story helps one kid, here we go.

My family life is more important than any job, but I find the timelines of my symptoms are easier to remember when I think about where I was in my policing career. I’ll start here.

It’s January 1, 2001, I am 29 years old, and I have finally managed to get my foot in the door of the Windsor Police Service as I am now hired as a Special Constable, after too many years of trying. I’ve been married just over a year, I am very happy with my fitness routine, and I feel amazing physically; life is great! In the summer of 2002, while playing in a Beer Softball League, I notice I am having trouble catching a fly ball in the outfield. While running, the ball is bouncing all over the place no matter how hard I try to focus my eyes. At this point I do not realize this is a starting sign of the loss of body awareness in space (proprioception) that comes with FA. I am thinking this is weird, but I brush it off and think ‘oh my lower back is stiff from lifting weights’. Then I go up to bat and hit a homerun. So maybe nothing’s wrong, I just suck in the outfield.

In December of 2002, I get hired as a cadet and a short time later, in January 2003, it’s off to balmy Aylmer Ontario for Police College as a Constable. I am 31 years old now, a bit old for college but I’m feeling strong, fit and quietly confident. It’s the second day at police college and younger colleagues are eager to get in a 6am fitness run. It’s snowing out, and 6am is a little too early for me to even be awake, let alone go for a run at that time of the day. What have I gotten myself into? I head out with these people anyway, and while running, I feel like my legs are moving at 60% effort and speed. Weird, wtf. The Police College has a decent weight room. Workouts are better than ever, and my two tall skinny co-workers and I have a good routine. My buddies are extremely skilled basketball players, one is even a former Canadian Olympic player, and it is no surprise they want to play 3 on 3 basketball in the gym at night against the Toronto Cops. Basketball is one sport I have no business playing but I think I can be somewhat useful on the court. Maybe pass the ball or at least get in somebody’s way. Right away something is wrong. While playing, I feel like I literally weigh 600 pounds and I’m having trouble moving my feet.

My time in Aylmer is coming to an end, and I score surprisingly well on the academic portion, and I can easily pass all the physical testing at police college. I ‘m not personally happy with the running portions and there was one embarrassing moment I wish to keep private, but my closer friends all witnessed it. Looking back, I think I knew something was wrong, but I was getting stronger in the gym, so it can’t be anything serious right?

I get back to Windsor in April 2003 and start my career as a police constable. The next few years are fairly stable physically. I’m having no issues with the job, I’m getting stronger in the gym, but baseball is becoming a problem. I’m still hitting homeruns but anything over a slow jog is a challenge. Why can’t I run but I’m getting stronger in the gym?

In December 2004, my wife and I welcome a baby daughter. Life is great. My daughter is cute and sleeps all night. My wife likes me most days, but the dog is a real pain in the butt. Sometime in 2006 another symptom starts popping up. My speech is slurring. Not every day but every now and
again. I remember thinking, “oh shift work, I’m just tired on day shift”. Another excuse. Can’t be anything serious right?

In October of 2006 we welcome a baby boy into our lives. The family is complete, and life is otherwise great. At this point, my wife is the only one who knows about my issues. I decide it is time to tell my doctor about my symptoms. I’m still very happy with my workouts, but running is not getting any easier. How serious could it be right? My doctor is sending me to a neurologist in Windsor, who quickly refers me to a London, Ontario
neurologist. The neurologist is very sharp and mentions something called Friedreich’s Ataxia. I am now asking “what is that?” I have never heard of it. I wish I could still say that. They set up a genetic blood test and within a few weeks, it comes back negative for Friedreich’s. The neurologist seems surprised and orders a bunch of tests; some very painful. Vertigo testing, vitamin E deficiency, gluten allergy test. The worst one is a muscle biopsy to test for a vitamin CoQ10 deficiency. This involves sticking a long thick needle into my thigh to take out a small sample of the muscle. I still have a small scar on my leg 18 years later. Even with all these tests, everything comes back negative or normal. The neurologists cannot believe all the tests are normal. No need to tell my family or my employer then, right? Still no answers but my workouts are better than ever. Maybe because I am so angry, combined with the feeling of being a little scared.

It’s 2007 now and the idea of joining the Emergency Services Unit (ESU) comes up at work. The ESU team start their shift off with a workout every day when possible. What a perfect job for me! My workouts are still getting better, and my legs are now my strongest body part. WTF, this is ironic. My running ability is going to bounce back before the ESU testing process, right? As soon as I start a running routine, that 600 lb monster shows up again. I can jog all day, but I can’t run full speed at all. As I’m running, I have to say to myself, “ok legs let’s go!” And nothing happens. I keep talking about work because everything at home is relatively normal. I can do everything with my kids and wife. It’s not like I need to run fast around them, right?

It’s nearing the end of 2007 when I get a phone call at home from a Staff Sergeant at work. This guy is old school, intimidating, well-respected, and a highly decorated Detective. I am thinking, “how does he even know my name?” He gets right to the point and offers me an undercover job in Surveillance. I have been hoping for a job in ESU, but they are offering me a guaranteed job that has a lot of perks. Even if I try out for ESU, there is no guarantee that I will get that spot, especially if I have to run a grueling mile and a half just to become eligible to apply.

I start my Surveillance job in January of 2008. It turns out to be a blessing. I love this job, and it gives me the opportunity to lay low while we figure out what is wrong with me. The Surveillance job is going great, but there are a few minor hiccups. My speech is getting difficult at times. I wonder if anyone notices. I’m becoming more frustrated with not knowing what is going on with me. With the help of my sister I see a neurologist in Detroit Michigan. Again, the idea of Friedreich’s Ataxia comes up quickly. So, the Detroit doctor orders the London lab to retest my blood for FA.

It’s October 30, 2008, about 2 weeks after my blood samples are taken, my answering machine is flashing telling us they have a “conclusive diagnosis for my disorder”. Since I know they are only testing for FA, it is clear, that this is my diagnosis. It is a phone call I will never forget. I feel numb and not surprised at all. Especially when we find out the London Lab made a mistake in 2006 and never actually did the genetic test but noted I was negative. I am so angry. How lucky am I, right? They miss running the test over 2 years ago, 2 years!!! What treatments did I miss out on because of this mistake? Oh wait, there are no treatments.

Now what do I do? I’m married with 2 small kids and a dog that acts like a jerk. I’ll do what I always do. Keep my mouth shut and go to work. My doctors are fine with me continuing in the Surveillance job, so I go to work.

It’s nearing the end of 2010, and I decide that it’s time to tell my family and my work about my condition because it’s getting harder to hide some of my symptoms, especially my speech. I’m not really worried about telling the bosses at work about my situation, but how the hell do I tell my family that I have a life shortening neurological condition, with no treatment? I don’t even know how to spell it, and to this day I still get it wrong half the time. What a nightmare! Having to try and explain Friedreich’s Ataxia to two small kids who shouldn’t have to deal with any of this. Or telling two older parents that I have difficult news knowing they won’t be able to look up information on their own because they have never used the internet or even heard of “Google.” My wife stands by me, as always, and helps me through this. I am now transferred to a desk job in the Firearms Unit where I hope to end my career. Enough police talk.

Luckily my symptoms are progressing slower than most people with FA. The doctors seem surprised when they see me walk in for appointments. About 8 years into the diagnosis, I am using a cane for walking. I have broken my ankles three times because of serious falls. I have small tears in both my knees, a large tear in my abdominal muscles, and my joints are a disaster from Friedreich’s and years of heavy weightlifting. Ten years of playing football and zero injuries. F-ck Friedreich’s Ataxia!!!!

My goal is to enjoy my family the best that I can, work hard to not be a physical burden, and show my kids that I will not quit.
People ask me sometimes, “Why do you go to work every day?” I tell them that I will keep going as long as I can be useful. I’ll be done when I say I’m done. F-ck FA.

I’m not big on quoting people at all but a certain guy from Jersey said, “When you can’t do what you do, you do what you can.”
I’ve been doing that since October 30, 2008.

Greg