FA makes a good hair day harder, but I revel in them

Last week, I took a slow-motion fall. While transferring from bed to my wheelchair, I tried to reach for something — so I could be quicker — and landed on the floor. I am no longer able to transfer from the floor to my wheelchair. Wendy, my service dog, can help steady me, but she can’t pull me up off the floor. I was home alone and needed someone to help me get up.

I have Friedreich’s ataxia (FA), which has many symptoms. Relevant to my fall are an inability to walk, the use of a wheelchair, and poor strength and coordination.

I was stuck. Although I couldn’t reach my phone, I was wearing earphones and could place a call using Siri. For this reason, I always have my earphones or my Apple Watch on when I’m alone. I called my husband, Dave. He’s a teacher, so it can be challenging to reach him when he’s in the classroom. Fortunately, he was able to step away from work and help me within 25 minutes.

As I waited, Wendy helped me retrieve my phone so I could listen to podcasts. That was my healthy distraction. My unhealthy preoccupation was that I had a hair appointment, and I needed to leave the house in an hour and a half. Dave came home, plopped me in my wheelchair, encouraged me to do things safely and not quickly, and then returned to work.

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Seeking a good hair day

Of course, I know my physical well-being is more important than my hair, but being well-groomed makes me feel better emotionally. It is one thing I can control in my world, given that FA is unpredictable. I am not alone in prioritizing my hair; a Psychology Today article extols the virtues many find in a good hair day.

For me, and I think this is true for many, I have to book my hair appointments months in advance. My hairstylist is booked solid, so if I cancel at the last minute, I am unlikely to get another appointment right away. If I’m lucky, they can squeeze me in to color my hair. I leave the salon with a wet head, because they don’t have time to style it. If I’m unlucky, I have to live with my wild hair for another five weeks. The worst-case scenario is very doable.

I guess that if you don’t live with or know someone who has FA, you might think an hour and a half is ample time to get ready. I can carry out all my activities of daily living (ADLs) independently, unless I lose focus and end up on the floor, but it still takes a while. For instance, tasks like showering, getting dressed, and drying my hair can take three hours.

I use a variety of adaptive equipment, especially in the shower, to complete my ADLs. More important than my hair? Completing my ADLs as independently as I can for as long as I can!

FA is unpredictable. A fall or unexpected fatigue can disrupt my plans. For me, the ability to adapt is crucial.

I was uncomfortable sitting on the floor, but I reminded myself I was unharmed, and missing a hair appointment wasn’t the end of the world. By embracing a routine tailored to my needs and desires, I can navigate my FA journey with greater confidence and resilience, ultimately enhancing my overall well-being.

After Dave helped me back into my wheelchair, I modified my ADLs to fit the time I had, allowing me to arrive at my appointment on time. If Dave hadn’t made it home when he did, I would have had to cancel my appointment.

Living with FA can lead to anxiety and depression. Maintaining a routine helps us manage these emotional challenges by providing a sense of normalcy and purpose. Regular activities, such as hobbies, social interactions, and mindful practices like meditation, can be integrated into the routine, fostering mental clarity and emotional resilience. Having a hairstyle that makes me feel good is part of my routine, at least for now.

My hair isn’t the most crucial part of my self-care, but it’s something I genuinely enjoy. I appreciate the experience of being at the salon, and I like having relatively tamed tresses. I plan to keep going as long as I am able.

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.