What Can You Do When Your Mind Fails You?

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 […]

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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.

Via Depositphotos

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. 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, and a forgetfulness that left me humiliated when I missed meetings, appointments, celebrations, and assignments. Eventually it became clear I had Fibromyalgia, but while the physical symptoms I faced   were discouraging, what’s been the most difficult is the mental aspect.

“Fibro fog” as it’s called is real. According to the National Fibromyalgia Association, there are over ten million people in the US with Fibromyalgia. Over 75% of those are women, and cognitive disfunction is one of the hallmark symptoms. 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. But after the onset of Fibromyalgia, my mind became something I couldn’t control, something that acted like my enemy.

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. I’ve forgotten birthday parties, Dr’s appointments, coffee dates, and once, I forgot 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.

We all forget things from time to time of course, but prior to Fibromyalgia I’d never had events and commitments vanish with no warning. The sensation of something you care about being stolen out of your head is disconcerting, 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.

So how do you handle something that’s waiting there in the background, threatening to zap away things you’d rather keep? First of all, you do what you can to learn about and control whatever triggers it. Then, when it happens in spite of your best efforts, you forgive yourself and remember no one is perfect.

Over the years I’ve discovered anytime I’m without a regular schedule I’m much more likely to start “dropping” things from my memory–summers and school holidays are black holes of missed appointments and forgotten obligations. Having out-of-town guests and unexpected work projects also trigger my forgetfulness, so I know to take extra measures to combat it during those moments. Everyone has to find what works best for them, but I routinely use alarms, notifications, and other electronic helpers. I also look at my calendar multiple times a day.

Probably the hardest part for me has been forgiving myself when I forget something even after I’ve tried to compensate. But this is the most essential aspect of having a chronic condition. None of us is perfect, but being super self-critical isn’t going to help. Over time I’ve learned the single best thing you can do if your mind fails you is to treat it with kindness and move on. Control what you can, accept what you can’t. And eventually it does get easier. Eventually you get really skilled at preventing the problem in the first place, and really generous with forgiving the problem afterwards. These days I apologize to those involved, then keep on moving, because I don’t have time for self-flagellation. Life’s too short, and besides, I’ve forgotten what it was I forgot.

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People look for retreats for themselves, in the country, by the coast, or in the hills . . . There is nowhere that a person can find a more peaceful and trouble-free retreat than in his own mind. . . . So constantly give yourself this retreat, and renew yourself.


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