I Am Here, and That Is Enough
As I prepare to write my first column in over a month, a nasojejunal tube is pumping food into my small intestine, reminding me I’m not out of the woods yet with my health. My energy level feels nonexistent, and I fear that it may be my new normal. And I can’t seem to focus on my writing due to the distraction that was February. That month, dedicated to love and, in my family’s case, many birthday celebrations, slipped through my fingers before I could regain the grip strength to clutch it.
It was a month that changed me forever.
The reason for my absence around here is that I was hospitalized for one month in the Intermediate Care Program at Boston Children’s Hospital, a step down from intensive care. My stay lasted 27 days, to be exact. It was a scheduled admission, one I had plenty of time to prepare for. I think, in some way, my preparedness had coaxed me into believing I’d have a good handle on this admission. But no one could have prepared me for what was to come in the following four weeks.
For the previous few months, I had been fighting many health battles, living through the ugly side of this disease. By the time I arrived at the hospital, my health status had turned grim.
For the first two weeks, life was bleak. I couldn’t breathe on my own and relied on a BiPAP machine day and night. I had conversations about mortality and my options that no 31-year-old should have to experience. My prognosis was uncertain. Life was grim inside the four walls of my hospital room.
Having gone through something so traumatic, I’m not quite ready to process my thoughts and emotions and share them with the world. I’m not quite ready to relive my experiences. When people ask me what happened, I find myself tempted to give a short, concise answer and disregard its ambiguity.
“SMA happened,” I usually say to myself, wishing it’d be an appropriate response to others.
Those moments from my hospitalization still haunt me today. I’m still in the depths of processing it all, so my thoughts may be convoluted by what my weary heart is feeling. But I think that hospital stay was the first time in my life I truly resented spinal muscular atrophy. I’ve been angry. I’ve had bad days. I’ve grappled with God on why this disease has to be so debilitating sometimes. But I’ve never truly hated SMA and wished for a “normal” life more than I did those few weeks I was hospitalized.
Nevertheless, I am here. And through faith, love, and the miracle workers at Boston Children’s, I am able to continue my healing journey from home.
Yesterday, I went for a walk with my dogs for the first time in months. It felt so good to feel the wind again, to feel the freedom of being in my wheelchair and not bedridden.
Right now, there are still so many unknowns about my health, how well I will recover, and my body’s timeline to heal. I’m trying my best not to let my mind wander into that place. Instead, I’m focusing on what my body needs in the present moment and celebrating the remarkable progress I’ve made.
So on this day, I breathe in the fresh air — something I’ve taken for granted all my life. And I look around and think to myself:
I am here, and that is enough.
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.