Inner strength and external support help me navigate life with SMA
Honoring the people who help me persevere in managing this disease
Living with spinal muscular atrophy (SMA), I’m often met with this question from others: “How do you do it?”
Upon learning how much goes into living a life full of health issues and weakness as well as SMA’s unpredictable nature, many often want to know how I manage it all. It’s a simple ask. However, I never know how to give an appropriate answer.
The truth is that I sometimes ask myself this same question as I’m falling asleep. When I should be drifting off into slumber, my mind begins racing instead: How did I get through this day? How did I fight through my chronic fatigue, endure that procedure, work through the pain, and make it to bed? How did I accomplish my goals at work or go out with friends while feeling so weak?
The short answer to these questions is that some days, I simply manage without thinking. My life struggles have cultivated an inner strength that transcends my physical limitations. I may not have the words to describe how, but I know that strength guides my way.
That said, my inner strength isn’t all I rely on when managing life with SMA. Fortunately, I have an incredible army of supporters to carry me through, even on my toughest days. These people have seen me at my weakest. They have been through every battle with me and selflessly helped me win every war. Whether it’s a family member, friend, doctor, nurse, or caregiver, these people are always willing to manage SMA alongside me.
When a crisis tests resources
Recently, I went to the dentist and learned I had a tooth abscess. Being extra cautious, my dentist recommended I go to the emergency department to ensure the infection hadn’t spread to my bloodstream. I’d gone a week without getting checked, and she feared the infection had gone unnoticed for too long.
I got to my car and started sobbing. I’d just had a hellish month fighting vertigo, migraines, steroid side effects, and other inconveniences brought on by SMA. Now, a painful tooth abscess was bringing me to the one place I feared the most.
Given my fragile health and my weakened ability to fight off illnesses, the emergency department has always been the one place I try to avoid. Thinking of how many germs settle there riddles me with anxiety. Nevertheless, sometimes I have to go there to get better.
Upon my dentist’s request, I emailed my doctors to inform them what was happening. Within minutes, my critical care specialist texted me. His team had reserved a room in the emergency department so I wouldn’t have to stay in the waiting room among other sick patients.
Soon after his text, I received an email from my gastroenterologist advising me on the best antibiotic to take. I have a history of gastrointestinal issues and getting violently ill with antibiotics. Fortunately, my doctor is well-versed in my health and knows what’s best for me.
Along with encouraging words from my doctors, messages from friends and family wishing me luck and sending prayers came flooding in. My army was showing up for me when I didn’t want to show up for myself.
On the long ride to the hospital, I felt defeated. I felt tired. I’d been fighting for my health for far too long and needed a moment to breathe. But I started thinking about the messages I’d received from my army of people who always had my best interests at heart. Though I wasn’t in the greatest state of mind to manage life with SMA, I had the most incredible support system willing to take over for me.
This recent trip to the emergency department exemplified that my strength to manage this disease comes from the support of those around me. The unwavering support of my family, friends, and medical team also bolsters my inner strength. They’re my anchor, especially during my most challenging moments. I’m lucky enough to never be alone while managing life with SMA.
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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