The transition to adult healthcare brings both fear and gratitude
After 20-plus years, I am leaving my team at the children's hospital
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“Where are the cartoons?” I jokingly asked my mom while “Sherri,” the daytime talk show, played on a television above me. She chuckled as I scanned the waiting room, taking it all in. There are moments in life when gratitude and fear coexist in the most complicated and overwhelming of ways. In a room full of adults living with neuromuscular diseases at Massachusetts General Hospital, I was living that reality.
At 35 years old, I have started to transition from the children’s hospital to the nearby adult hospital. Living with spinal muscular atrophy (SMA), this milestone has felt monumental, but also deeply unsettling. A part of me has felt hopeful about this new chapter of my life. Being treated by providers who work with adults, rather than children, will give me a better, more comprehensive overview of my care as I get older. I will get a fresh perspective on managing life with SMA.
However, the transition isn’t that simple. I’ve been cared for by the same medical team for over 20 years, and these people are more than just doctors and nurses to me. They are my safety net, the people who have seen me at my worst and fought for me in critical moments. They have, quite literally, saved my life on numerous occasions. Leaving those who know my body and all its intricacies feels beyond daunting.
Change is scary, but it’s a sign of progress
In the waiting room that day, fear crept in as I ruminated on the what-ifs of this transition. What if this new hospital doesn’t understand my needs the same way my old team did? What if they don’t act with the same urgency in critical moments? What if I don’t develop the same trust with my new doctors? After all, my life has depended on a certain group of people for decades. Unlike my pages of medical history, these kinds of relationships can’t simply be transferred on paper.
Alas, as much as fear has been trying to control this narrative, I will not lose sight of how much of a blessing it is to be in this situation. With a disease as complex as SMA, specialized care is limited. It’s the reason why I have remained at the children’s hospital well into adulthood.
But over the last several years, the SMA landscape has changed. Medical advancements have been made. Treatments are now commercially available. People with SMA are thriving, and, as a result, life expectancy is increasing. Adult providers are in greater demand than ever before.
This transition may feel all-consuming, but it also represents progress, survival, and a future that feels brighter than ever for SMA. It is a reflection of every person who refused to settle for the reality that this disease once was. It is a testament to the doctors, nurses, researchers, and scientists who have pushed the boundaries and advanced treatments and medical breakthroughs. It is tangible proof that we are changing the trajectory of SMA for the better.
Right now, I am holding space for all the mixed emotions I’m feeling about this new chapter of my life. Fortunately, the children’s hospital won’t kick me out until I’ve developed a full team of doctors, which will take some time, given my comprehensive care plan. I will enter each new appointment knowing that I’ve made it this far, and that my life has been shaped by extraordinary care.
The progress being made in the SMA community is real. How blessed am I to be living it?
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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