Life in the Fast Lane Leaves Me Struggling to Keep Up

The title of this column may be a tad deceiving — so allow me to clarify. My wheelchair only goes 6.2 miles per hour, and when you have an irrational fear of birds and are fleeing from a turkey that is chasing you, you realize that there’s nothing fast about it.

Instead, “Life in the Fast Lane” is a reference to how quickly my life seems to be moving these days. My busiest time of year is June through August. I plan an annual fundraiser for my nonprofit organization, which requires the majority of my time and attention all summer. Two of my closest friends are getting married over the next couple of months and have asked me to be in their weddings. This involves planning for bridal showers, bachelorette parties, rehearsals, and attending the weddings. Then, of course, keeping on top of my everyday responsibilities: work, doctor’s appointments, managing my diet, maintaining a social life — and without even trying, I’m hitting autopilot in the fast lane.

By nature, I thrive on being busy. I enjoy crossing things off my to-do list and going to bed at night feeling productive and accomplished. I’m wired to be doing something — even if it’s as simple as taking my dogs for a walk — because when I’m idle, I often dwell on unimportant matters.

However, busy isn’t a badge of honor when you’re living with SMA — it’s a warning sign to slow down. I learned this the hard way last year when I landed in the hospital over the Fourth of July. It wasn’t the hospitalization that took its toll on me, it was the recovery period. It was the busyness that filled my days, coaxed me into thinking that I could handle the heavy workload and social engagements, and deterred me from focusing on my well-being and, ultimately, my much-needed recovery.

Alas, I find myself in a similar predicament this year. While a hospitalization does not play a role this time around, other contributing factors are nagging at me to slow down. My third-shift nurses, who have been with me for six years, unexpectedly quit due to health reasons within three months of each other. Although my family was fortunate enough to receive coverage for a few days a week, for now, having someone new means I’m not getting much sleep.

Between the nurses learning how to get me comfortable and having to wake up several times a night to teach them different things (which way to move my arm, how to readjust my BiPAP mask, etc.), in my world sleep quickly goes from a necessity to a luxury. My body is tired. My stamina is low. My family is experiencing some health scares, which is adding to the stress of the culmination of many sleepless nights. In other words, I’ve been struggling to keep up in this so-called fast lane.

So, in an effort to slow down and reexamine my responsibilities, I realize that I must make a conscious effort to redirect my thoughts and recognize that the only responsibility I have is to take care of my body. I can push myself beyond my limits, but all that will accomplish is another day feeling weak and exhausted. And a body that has worked hard at keeping me alive and thriving for the last 28 years deserves more than that.

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Note: SMA News Today 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 other 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 SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.