My mental health plays a big role in how well I manage procedures
Physical strength is crucial, but I must also prepare mentally
Though I’ve had 20-something Spinraza (nusinersen) injections, my latest procedure proved most eye-opening for me.
For almost seven years, I’ve gotten lumbar punctures to deliver this tiny but mighty medicine directly into my lower spine. After a handful of injections, I understood the drill. I knew what to expect with every piercing of my back. However, crying as I was being transferred onto the procedural table and coming to a thought-provoking realization typically weren’t part of the routine.
I can vividly recall preparing for my first-ever lumbar puncture with my doctor and questioning whether my body could endure this kind of procedure. After all, my entire existence has centered around my physical abilities, thanks to SMA. I always focus on strength gained and lost, and strength I’ll need to overcome any hurdles. For any upcoming procedure, I’d take the preliminary tests, pass or fail based on my physical strength, and then decide accordingly how to proceed. My mental health was never part of the equation.
No one was to blame for this. My doctors made many right decisions about my health over the years, and continue to do so. I consider myself blessed to have such an incredible team. Even so, I still wonder: How much of a role does my mental health play in my procedures?
Paying attention to mental health
The day I received my latest Spinraza injection, I was wounded. My beloved grandfather had passed away days prior, and I was still in the thick of processing everything. I was exhausted and heartbroken — a terrible combination if you ask me. I didn’t have the energy I’d need to go to the hospital, undergo the procedure, and fight through recovery, but I went through with it anyway.
Tears welled in my eyes as I got onto the table. Fortunately, it was my mother who transferred me amid my mini meltdown, and in true motherly fashion, she reminded me to relax. The problem was, at that moment, I didn’t know how. I may have appeared ready and rested, but mentally, I was not.
More recently, I had a different procedure on the schedule. Sadly, another family member had just passed away, so once again, I was in the thick of grieving. Before leaving for the hospital, I had a panic attack. Though I’d undergone this procedure dozens of times before, I felt as though I didn’t have the willpower to go forward with it this time. Nevertheless, I pressed on — though I needed extra recovery time when it was over.
Of course, my physical health is crucial with any procedure that I have, and my gratitude for access to these lifesaving interventions never goes unexpressed. But I’m learning now that my mental health is half the battle. Procedures drain me tremendously, sometimes causing pain or other setbacks. So I need my mind to stay strong. I need to have the confidence and will to fight. I may lose my strength, and I may not always be in control of my medical journey. But one superpower I will always harness is the ability to nurture and prioritize my mind.
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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