Peering Through the Fog of Fear

I’ve been on hiatus from writing about my SMA. 

Truth be told, I’ve needed to break away from the constant reminder that SMA rules my life. When it wants to, SMA tosses banana peels into any gleaming trajectory I’m traveling. It kicks the sturdy platform from beneath my grounded self, leaving me wobbling around at a frantic pace. It shoves me underwater, and I hope I’ve gasped adequate breath to last until I bob above the surface of the waves at last, feeling crisp air fill my lungs and invigorate my body enough to keep paddling. SMA can be a total bully.

Throughout life with SMA, I’ve found that my health issues tend to ebb and flow. When a tidal wave rocks my world, I want nothing more than to escape it, to strip it of its power. Quiet wishes to take flight, to grow feathers, and to abandon all sense of gravity become louder in my mind. 

Then, there is the aspect of feeling defined by my disability. When I write about it, am I giving my SMA even more power than it deserves? 

We all have different opinions about how SMA fits into the puzzle of who we are. My SMA puzzle piece tries to grow and dominate, attempting to cast away all the other pieces until they fit only in a dingy trash can. I keep the size of this puzzle piece trimmed down to a petite stature. Sorry, SMA, you don’t get to overshadow the rightful place of all the other pieces.

I maintain a conscious effort of balancing my focus on SMA to a level that is right for me, and to a level that is best for the health of my mind and spirit.

Yet, I need to be able to face fears of my SMA. Much like I cannot sprint in real life, I cannot swiftly outrun my SMA.

This winter, I decided to no longer pursue Spinraza (nusinersen) treatment. It’s taken time for me to accept a different path, and I’ve tumbled across the entire spectrum of emotion, from euphoric liberation to exhaustive worry.

After my loading doses, I began to experience excruciating episodes of nerve pain in my back from the lumbar punctures. This was combined with an observation that my surge in strength didn’t seem to hold within my body — it felt as though I was backpedaling toward my pre-Spinraza baseline. I brushed it off as best I could and managed the nerve pain with reluctance. Something felt off, but I pointed my blameful finger at other culprits. I kept going.

“Brush it off, Katie,” said my brain. “Be grateful you have treatment!” said my heart.

I sometimes insist on pushing forward, even when my body is screaming at me that something is off.

Eventually, my pulmonary function tests confirmed my suspicious feelings. The initial boom in strength illustrated so beautifully on my post-loading dose results was now silenced. I had backpedaled, indeed. 

I sat tall and strong as I talked to my pulmonary provider about the new numbers, along with my concerns about continuing Spinraza.

As I made my way to the elevators, I felt the stormy winds rattling within my chest. I crossed the expansive clinic, and the skies within me darkened. Out in the parking garage, the drenching rains finally crashed down. I drove my wheelchair into our van, and I cried. I sat in a crumpled ball and let out long, inflamed sobs.

My partner, Andy, walked around to the passenger side, opened my door, and hugged me for an eternity. When the storm had passed and strands of sunlight beckoned the wet earth, I took a few deep breaths. Andy wiped away the mess of tears, snot, and mascara from the muddled canvas of my face — he has a true knack for leaving things brighter than he found them.

I gathered the perspectives of my healthcare providers and loved ones. I did some soul-searching. I made an informed decision that is best for me, and it’s all right. 

As long as I have the love and support of people around me, it’s always going to be all right. On this journey with SMA, love and kindness make all the difference.

Who knows what tomorrow brings. This is my story with SMA, and I need to write about it. I don’t know what if feels like to be you with SMA, but I know what it feels like to be me with SMA.

Sometimes, I will need to peer through the fog that rolls in, accepting the fear that it brings. Dense and stifling as it may be, I will stay true to who I am. When I begin to worry I’ve lost my sense of direction, I grasp the hands of those I love, and the fog always lifts.

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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.