With Friedreich’s ataxia, a small thing can become a big deal
Replacing my key fob went from a short task to a time-consuming hassle
It was 6 a.m. I was still in bed when my van alarm started going off. Such alarms make me tense, particularly first thing in the morning. My husband, Dave, was up and ran outside to turn it off.
In my mind’s eye, I saw him running outside with his arms up in the air, stressed out. In most situations, including this one, Dave is a calm person. It’s a funny way to picture it, though: a panicky man sprinting out of the house while beep, beep, wah, wah is blaring away. On top of that, the ramp I use to get in and out of my van was going up and down.
I have the rare disease Friedreich’s ataxia (FA). Among its many symptoms are poor coordination and diminishing leg strength. Both symptoms cause me to use a wheelchair, drive a van with a ramp, and drive with hand controls. “Independent local driver” is one way I define myself, moderated by the knowledge that FA’s degenerative nature will likely cause me to lose this ability, too.
Dave turned off the alarm. I heard the calm from the safety of my bed and felt instant stress relief. He started to explain what happened when it suddenly started again. As Dave went outside to turn the alarm off again, he said he couldn’t find my keys and had to turn the alarm off from inside the van.
It dawned on me that I’d left my keys in my coat pocket and forgot to take them out before I put my coat in the laundry basket. The key fob was going through the washing machine. Who would think that the key fob could activate my car from inside the washing machine in our basement?
I’d done this before. I know, I know: foolish me. Since getting a new key fob is kind of expensive and we only needed one, we never replaced the one that I’d wrecked before. So this key fob was my only one.
The only way for me to get into my van by myself is by using my key fob. It’s how I lower and raise the ramp. I realized my transportation independence would be gone for a day or two.
Oh well, plenty to do at home, and I could reschedule myself for a couple of days. There wasn’t any big tragedy; in fact, it was funny.
One company that replaced key fobs said it could handle the job almost immediately. But the company couldn’t do it and had to order a new one. It would take about four to five days to arrive. Again, no tragedy, but I was frustrated by more rescheduling.
Five days went by. We called the company: No, the key fob wasn’t there; yes, it was on its way. This exchange happened about four more times. In the meantime, I’d gone about two weeks without a vehicle.
Getting a ride from somebody, or public transportation given my wheelchair and service dog, is complicated. For this reason, I was avoiding a trip, finding it easier to reschedule.
As we waited, I bumped into my neighbor who told me about a local place that replaces key fobs. We called it, and it replaced the fob right away. I happily drove to the gym. I didn’t even need to talk myself into it.
Just one example
This story illustrates how something that seems small can turn big when you have FA. Six rescheduled appointments later, the inability to run local errands or go to the gym on my own left me stressed and frustrated. If I didn’t use a wheelchair, I could’ve hopped into my car and used it, key fob or no key fob.
If none of these factors had been true, it would’ve just been a funny story about my absent-mindedness, not a big stressor.
I’ve found that one way I manage day-to-day life with FA is by paying attention to the details. While absent-mindedness is a family trait, it’s not a luxury I feel I can afford when I’m trying to alleviate stress and frustration.
Right now I’m being vigilant about my keys, making sure they go in that tray by the front door every time I come home. And the further away I get from the frustration, the more this story makes me laugh.
Oh, and now I have a spare fob on the way.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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