How a friend helped me find gratitude in an unexpected place
Something you may not know about me is that I have two homes. My first abode is a one-story home that was built to fit my needs almost 20 years ago. It’s in a quiet neighborhood with broken-down streets that make going out for a walk difficult in my wheelchair. But there’s privacy and peace, and I’m grateful to have a fully accessible house to inhabit. My second home, however, is Boston Children’s Hospital.
It’s an ongoing joke I have with people given the amount of time I spend there. I pass through the doors of the interventional radiology department and am greeted by nurses and doctors calling me by my first name. I bump into providers in the hospital lobby all the time. And I know the place like the back of my hand.
My visits to the hospital have become more frequent these days due to the need for NJ feeding tube changes. Though the procedures are difficult and unpredictable, I feel that I’ve been able to function on autopilot in recent months. And pulling up to the hospital, I can’t help but think, “Honey, I’m home!”
I had to laugh the other day heading to my appointment. There was a time, not too long ago, when my mom and I would always get lost trying to find the interventional radiology department. Now, I could find it with my eyes closed. If people’s toes weren’t at risk of being run over, I’d be tempted to try it.
By the time I was settled on the surgical table with all my pillows, blankets, and straps to hold me in place, I felt cozy. And without consciously thinking about it, I suddenly got this overwhelming sense of feeling at home. That shook me to my senses. Calling the hospital my second home has always been a joke to me. After all, do any of us really want it to be our home?
I left the hospital that day angry at my subconscious for thinking that way. But in the next instance, I almost felt sorry for myself, which is something I don’t typically experience. My feelings were all twisted and tangled that day, so I decided to sleep on it.
When I woke up the next morning, I felt sad and pathetic. Sometimes it’s hard grappling with how much SMA demands from my life. Living with this disease, there’s a delicate balance between living as a person and living as a patient. And I realized that my subconscious felt more at home in the hospital because I’ve had to be hyperfocused on my health lately.
Feeling down about this, I shared my feelings with a friend that morning. He said, “Maybe you felt at home because you have an incredible team of doctors and nurses that you can feel comfortable with and trust.”
It took a minute for those words to actually sink in. I hadn’t thought of it that way, but could understand his reasoning. He raised a great point. I do have an incredible team of doctors and nurses. And sometimes I forget to acknowledge that because I’m so wrapped up in all the stress, anxiety, pain, and intensity that comes with being in the hospital, whether as an inpatient or an outpatient.
My friend’s words have been on repeat in my brain ever since. It’s funny how our minds are quick to label emotions and experiences as good or bad without giving them a second thought. But hearing a different perspective was all I needed to gain some clarity.
Going to the hospital all the time is not what I want, nor do I wish to call it my second home. But I do feel safe there. I do have the best team that has helped me manage life with SMA well. And learning to recognize the positive aspects of these difficult situations through friendly advice has helped me find gratitude in unexpected places.
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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