I was thirty-nine years old when my body and my mind failed me for the first time. I’d been married for nearly ten years, I was raising two adolescent stepchildren, a preschooler, and a toddler. I had a part-time job, in-laws who were elderly and in nursing care, and my husband was in the midst of a career crisis.
It started with a migraine on a sunny afternoon as I drank a cup of coffee and watched my children play in a sprinkler park. The spots in front of my eyes grew so bad I couldn’t see to drive the car so I had to call my husband to come get us. I remember my five year-old in the backseat taking care of her one year-old brother while I kept reassuring her mommy would be ok, as I prayed I wouldn’t start vomiting in front of them.
After that I had an intense headache for a month. Four solid weeks. Then the rashes started. First on my forehead, then on other parts of my body, fading and reappearing at random. Next it was the aches. By early afternoon each day at work I would find myself with a headache, body aches like I had the flu, and an exhaustion that was bone deep.
Over the next several months I cycled through a variety of symptoms — vertigo so severe I couldn’t get out of bed, forgetfulness that left me humiliated when I missed meetings, appointments, celebrations, and assignments. The pain in my muscles and bones continued, and I reached a point where I felt like I was ninety years-old and wasn’t sure if I was going to be able to get out of bed each morning.
Eventually it became clear I had Fibromyalgia, and I developed a combination of diet, exercise, and medication that put me back on track. I realized caffeine gives me headaches, florescent lights make my bones ache, and breaking a sweat daily is necessary if I’m going to be relatively pain-free.
The physical symptoms I faced — and still do to a much lesser degree — were discouraging, but what’s been the most difficult thing is the mental part of the condition. “Fibro fog” as it’s called is real, and it’s the one aspect I’ve never been entirely able to come to terms with. There is something about your brain failing you that is uniquely disturbing. Until my breakdown at thirty-nine, I had always been the memory of the family. I knew which kids needed to be where when, I could spout off phone numbers and addresses from memory, and my husband relied on me to know when his siblings’ birthdays were.
But after the onset of Fibromyalgia, my mind became something I couldn’t control, something that acted like my enemy for seemingly no reason. I’ve likened my memory issues to a glass that’s filled to the brim. Sometimes all it takes is one more drop to make it all spill over the edge, and whatever splashes out is lost.
My memory isn’t a constant problem, I go along most days just fine, driving teens where they need to go, answering emails, and paying bills. But intermittently, when there are things that are out of the ordinary — appointments that were made last minute, events that happen in the midst of a week when the kids are off school or my car is in the shop — my mind fails me. Water splashes out, things get lost, and I’m horrified my brain could simply lose something that way. Once it was that I’d promised to walk the neighbors’ dog while they were out of town for the day. That poor dog sat in the house for twelve hours with no relief. I’m still sick when I think about it.
Another time I forgot to take my five year-old to his friend’s birthday party. By the time the mother called asking where he was we’d driven an hour away to watch a college soccer game with out-of-town guests. To this day I don’t think that mother has forgiven me, and my son was never invited to her son’s birthdays again.
I’ve forgotten countless doctor’s appointments, coffee dates, luncheons, and school events. And every single time I feel a sense of fear and betrayal that is visceral. When my memory allows me to simply eliminate things that way, it’s almost as if there is something foreign living in my head, directing which items I get to keep and which will be thrown out. Except they don’t really go in the garbage, because I nearly always remember eventually — after it’s too late.
We all forget things from time to time, but prior to Fibromyalgia I’d never simply had events and commitments vanish with no warning. The sensation of having something you care about stolen out of your head is disconcerting and embarrassing, and most of all, frightening. Because if your body is failing, you can comprehend it, and you can use your functioning mind to determine how best to deal with it, but when your mind goes…there is no recourse, no alternative, no cure.
Over time, I’ve learned to compensate for my memory issues, and often I go for months without a problem. But then something will slip, and there I’ll be again, embarrassed, frustrated, that sick feeling in the pit of my stomach reminding me I’m not in control, and I never will be because what’s wrong with me doesn’t simply go away.
According to the National Fibromyalgia Association, there are over ten million people in the US with this disorder. Over 75% of those are women. Cognitive disfunction is one of the hallmark symptoms.
Today I forgot to do something, and all I can do is apologize to those involved. It’s not enough. But I’ve learned over more than a decade it’s all I can do. Tomorrow I won’t feel quite so horrible about it, and in a week it will become one more thing on the extensive list that, unlike the appointments and lunch dates, I can’t forget and will try not to dwell on. But as I age, and the normal issues of memory loss compound what I’m already fighting, I can’t help but think — if only I’d known what a miraculous thing my mind was before an overactive nervous system began melting its circuitry. If only I’d understood that one day I’d wake up and feel like I’d aged forty years in mere weeks. If only there were a way to insure my mind won’t forsake me all together.
If only I could have remembered to walk that dog. If only.