Some Thoughts about ALS, BFS, and Darcy Wakefield

About three years ago I developed this total irrational fear that I was developing ALS. It wasn't totally out of the blue; a grad school friend/acquaintance of mine, Darcy Wakefield, had died that year at age 35 from ALS. Her death really threw me. She was super-athletic and just kind of low-key and cool and quietly accomplished, the last person you'd expect to have to suffer such a terrible and rare disease. Her son was 2 or 3 when she passed away, and she'd been paralyzed nearly since his birth.

That summer was incredibly hot in LA, and I fainted one night outside a Mexican restaurant and had to be taken to the ER and evaluated for a seizure disorder (it turned out to be just dehydration). I then started having terrible panic episodes, and was positive that I had ALS. I was terrified all the time. My muscles were twitching and I had periods of numbness in my leg where I had trouble walking and climbing stairs. I sought comfort on the AboutBFS online forum (BSF stands for 'benign fasciculation syndrome,' which is, as the name suggests, a benign syndrome in which your muscles contract and twitch--but because of the similar symptomology to ALS, at least in the beginning of the disease, BFS sufferers are all really paranoid about ALS (on the site, they won't even write it out and refer to it as AL* or A*S or 'the disease'). Mind you, there's no real evidence that BFS leads to or is a risk factor for ALS. There is some minor overlap of symptoms, but most of what people with BFS suffer is different in nature than early onset of ALS. It just feels dire.

Anyway, after a few months, my twitching and numbness resided and my doctor figured I might have done some nerve damage exercising which caused the bodily uproar. With rest, and, I admit, a pretty good arsenal of anti-anxiety medication, I recovered and was fine.

For the past couple weeks recently, I've had a return of my twitching, except this time in my eardrums. Tonight I went back and visited AboutBFS and it was pretty much the same old postings, frightened people relatively new to the site delineating their symptoms and asking if it sounded like AL* while old-timers comforted them and said no, it didn't, that ALS was this or that while they had classic BFS symptoms. It is repeated so often it's ritualistic. I wanted to post a comforting email about how once I had managed to control my obsession about having ALS, I got better as my body calmed down and healed.

Since then, I've looked into the statistics of ALS, which has an incidence rate of 2-5 per 100,000 in the US. That's extraordinarily low. Even though the odds are very stacked in their favor, BFS'ers might want to look the disease in the eye (as Darcy did) and just confront what may or may not happen to them and make their choices from there.

I wish that I were more involved with ALS support, like donations or walks, etc. But I admit that I'm not. I do check in from time to time with the BSF folks because I really feel like they are my peeps--American Panic at its most vulnerable and often eloquent. I always try to help them because, despite my sometimes-continued craziness, I think I'm a lot better.

Anyway, without wanting to be maudlin or exploitative of Darcy's death, I do just want to say that I still think about her even though I really only glancingly knew her back in the mid-90's. I know that I probably will not suffer from a motor neurone disease, but being sick that summer made me realize that you can or should never discount what could happen to you. We're not that special. Bad things will, eventually happen to you as they will to everyone. So keep that in mind and live your life.

http://www.amazon.com/I-Remember-Running-Everything-Wanted/dp/1569243530