How Friedreich’s ataxia fits into my summer goals
Transitioning to a wheelchair is a top priority for this columnist
May is always a hectic month for my family. With school functions and class parties, youth sports, birthdays, Mother’s Day, and the approach of summer, life moves quickly this time of year.
While part of me can hardly believe that the school year is already coming to a close for my children, who are 7 and 10, I feel like we’ve endured so much since school began last August. Therefore, I’m pausing to reflect on all this year has brought to our family, lessons learned, goals for the summer, and thoughts on the next school year.
There were so many happy milestones, such as my son turning 10, a trip to Disneyland, a road trip to New Mexico, snow days, baseball and basketball championships, undefeated soccer seasons, and more. There were also moments of joy and accomplishment, memories made, and laughs shared as we grew closer as a family.
We also endured a lot of heartbreak with the passing of my grandfather and mother-in-law. We had to deal with a life-altering job loss and a subsequent job hunt, an unexpected pool reconstruction, and more. On top of that, I am experiencing changes in my mobility and independence. I’m transitioning from being dependent on a walker to being dependent on a wheelchair as my abilities deteriorate due to my progressive disease, Friedreich’s ataxia (FA).
All this is to say that my family and I have endured many highs and lows this school year. Therefore, my main goal for the summer is to decompress, relax, and recenter. I plan to enjoy a slower pace and focus on wholesome family fun.
Those goals may seem rather vague, but I have a plan to help accomplish them. First, I will prioritize rest for myself and my family. While I don’t plan to enforce a strict bedtime, I do intend to get a slow start in the mornings so that we can get the rest we need. I also plan on continuing my daily exercise routine and biweekly chiropractor visits, spending a lot of time outdoors, and playing board games with my family.
How will that help with the transition to a wheelchair?
I hope that with a slower pace of life, I will have more time to think about proactive, economical, and lasting safety solutions, rather than the last-minute, reactive, Band-Aid solutions we’ve been implementing as life continually demands priority over my FA journey.
It has been all too easy to put the transition on a shelf, waiting to unpack it at another time, but I know from experience that unpleasant things in life don’t usually resolve that way. Unfortunately, FA is not an “out of sight, out of mind” kind of problem.
Therefore, I plan to use this summer to face FA head-on. While this transition is one I’ve been dreading since my diagnosis in 2013, it doesn’t have to be entirely negative. If I remember that my focus is to remain healthy, safe, and involved in life with my family, there’s no reason to think that I can’t do that from a wheelchair.
“The Lord is my shepherd; I have all that I need. He lets me rest in green meadows; he leads me beside peaceful streams. He renews my strength. He guides me along right paths, bringing honor to his name.” — Psalm 23: 1-3
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.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.