Navigating contrasting emotions during medical procedures
A columnist describes the strange dichotomy between joy and anxiety
“You just have to get through one more procedure,” I told myself as I pierced my tongue with my teeth while a needle stung my back.
Slow and steady, I tried to take deep breaths to calm my nerves and relieve the pain. But the monitor above me said my heart was racing at 140 beats per minute, suggesting my deep breaths weren’t enough to ease my anxiety.
Fortunately, in a little while, my back-to-back procedures would be over. I’d feel overjoyed and grateful, and my heart rate would go back to normal. But in that moment, I couldn’t ignore the stress and nervousness I always carry with me into these situations. How was it possible to feel such a wide spectrum of emotions all at once?
There’s a strange dichotomy between feeling joyful and anxious about having procedures done to improve your quality of life. Or, in my case, to keep me alive.
Somewhere amid all the doctor appointments and hospitalizations I’ve endured in the past couple of years, I realized that my body now relies on procedures to stay alive. And that thought almost sucked the air out of me. It was almost as if I didn’t have control over my life, or as though my life were at the mercy of someone else. But in the same breath, I felt such joy and gratitude knowing I had access to these lifesaving tools. I was — and still am — grateful to be living in an era when modern medicine has a solution to my problems.
Every 10 days, I have to exchange my nasojejunal tube. And every four months, my Spinraza (nusinersen) injection falls on the same day. Each procedure is difficult in its own way due to the complex nature of my anatomy. And each brings on many contrasting emotions. Trying to manage them feels perplexing, and this day was no different.
In one minute, I was fueled by fear of the unknown regarding the success of the procedures. I was worried about how well (or unwell) my body would withstand a day in the hospital. I was also concerned about complications.
Then, in the next minute, I felt guilty for feeling this way. I don’t take access to treatments or world-renowned doctors for granted. I don’t want to negate how overjoyed and grateful I am to be a patient and receive this kind of care. After all, my feeding tube keeps me alive, and not everyone has access to SMA treatments. So why did I allow myself to ruminate on the anxious thoughts in my mind?
I wish I had a magic wand to make my nerves disappear. But I’m learning it’s OK to acknowledge these feelings. I’m learning anxiety is just my brain’s way of saying my body desperately needs these procedures and won’t know what to do if something goes wrong. And right next to that anxiety will be joy propelling me forward into the unknown.
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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