With Friedreich’s Ataxia, Life Is Like a Roller Coaster
I thoroughly enjoy the unexpected twists and turns and the adrenaline rush of roller-coaster rides. I’ve loved roller coasters since I was old and tall enough to ride them.
My first experience on one, however, before I was tall enough to technically be allowed to ride it, terrified me. It took me a few years to get on another one.
While on a family trip to Knott’s Berry Farm in Southern California, my dad and brothers convinced me that the “big kids only” roller coaster was worth cheating the system to allow me to ride. I didn’t meet the ride’s minimum height requirement, so as we approached the operator, my dad stood behind me and let me stand on his toes to boost my height.
It worked — the employee waved us in. And then the 10 years of my short life seemed to flash before my eyes as the ride slowly backed its way up to a starting position. I loved getting past the gate keeper. I hated the ride.
Lately, I’ve been repeating the adage “life is a roller coaster” quite frequently. I have no idea if this shows my age. At any rate, it prompted me to reflect on that first roller-coaster ride, and life in general. Life has it all: dramatic curves, slow climbs, and lightning-speed drops.
This is especially true when living with Friedreich’s ataxia (FA). Although you can study the scary, big ride from the ground and prepare yourself for the adventure ahead, the drama sneaks up on you once you’re on it.
I’ve found it helpful to study my disease and explore how it likely will affect my abilities, quality of life, and ultimately, life span. Although I don’t often let those possibilities influence my day-to-day activities, they are always in the back of my mind.
When moving about my home or workplace, I can anticipate certain things, but there are still plenty of other things to consider. The biggest mistake I catch myself making is trying to cheat the system, just like I did on that first roller-coaster ride.
When rushing around in the mornings, for example, I’ll often try to carry too many things at once while I’m making coffee. At night, I’ll think about turning out the lights behind me in hopes that I can make it 12 feet in the dark to the next light switch without falling. In both cases, my motive is to save time.
In those brief moments when I ponder whether to take a chance and walk in the dark, the same emotions rush through my body as when I stood in line for that roller coaster. I feel the excitement as if I were standing on my dad’s toes again, and I’m convinced I can handle the challenge. But as soon as it’s pitch black, I’ll pause to allow my eyes to adjust, and adrenaline will flow through my body due to the dangerous situation I’ve put myself in. At that moment, I become aware of the risk, and I’ll remind myself that cheating the system is a terrible idea.
My disease will worsen all by itself, and there is no good excuse for me to hurry that progression along, no matter how much time it might save me.
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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Comments
Teresa Hill
Hi Sean,
I really enjoyed this article. I'm with you, I hate roller coasters and will never ride another. It came about in 2000 while at Magic Mountain Park, Santa Clarita/Newhall. I know you've been here. A particular ride up a long & steep incline which gained considerable speed as it neared the top made me think the car was going to sail right off the tracks & keep on keeping on for who knows how long & where I'd end up! From this area I went next door into the Water Park. We climbed a million stairs to reach the top of a high tower, which can be seen from I5! Rich chose his path down - too scary for me. I chose an easy winding enclosed water slide which allowed me to lay on my back. Nice & relaxing, no problem. I did not know it would be pitch black & no indication of ups & downs, right from left turns. I really thought I was going to die inside this enclosed tomb of water. I finally came out the other end, still on my back but I was screaming MAD! My body did not function properly, I could not stand, everything inside my head was upside down & sideways. Rich came to help me up & I could care less if onlookers heard my cries of torture!! Lesson learned - some thrills are not worth the cost. A valuable lesson your Grandma taught her children: when you are going to do something, do it right so you don't have a repeat. I don't think she had amusement parks in mind, but hey, it worked. (yes, it is a lesson applied to housekeeping chores, etc., ha ha)
Sean Baumstark
Hi Aunt Teresa :)
Thank you for reading and sharing sotries with such vivid imagery - I can picture everything, and can hear your voice so clearly! Forgive me for the chuckle that I had as I read about your "tomb of water."