I’ve collected a variety of scars throughout my life. Many people with SMA have comparable ones from similar surgeries. Even if you don’t have SMA, I’m guessing you also have at least one or two scars of your own.
Each of my scars tells its own story of a difficult experience I overcame. Healing from the procedures that created them wasn’t always fun, but it was necessary.
The largest of my scars is from spinal fusion surgery I had as a child to correct severe scoliosis. The manner in which my body was bending on itself before surgery was slowly crushing one of my lungs. The complex operation presented me with only a 50% chance of survival, but it was the only way to save my endangered lung and ensure that all of my organs could function properly.
Afterward, my newly straightened body was in more pain than I know how to describe. The slightest movements instantly brought tears to my eyes despite medication to ease the pain. Although it hurt tremendously, I needed to stay active. Enduring temporary pain helped to speed up the healing process.
Today, that pain is only a memory, the dissolvable stitches are long gone, and the bright red incision has faded to a raised white line. While every day my mom sees the scar that runs the length of my spine as she cares for me, I rarely do. It is behind me, but I do not forget that it is there. It is a frequent reminder of how strong I am.
More of these types of reminders can be found in three other prominent scars. All were acquired during a long hospitalization at the age of 13. Two are small surgical openings for my feeding tube and tracheostomy tube.
The other is a scar that cuts down the middle of my stomach. This one was caused by a complication with placing the feeding tube. My surgeon intended to do the procedure laparoscopically, but my twisted organs made it impossible. He had to fully open my stomach to correctly place the feeding tube.
I remember only certain details of recovering from these life-saving operations. Because of how sick I was, my mind was often blanketed in a fog while the rest of my body focused on using the little bit of energy it had to heal.
Now, my feeding tube continues to provide me with vital nutrients, and my trach allows me to receive an adequate amount of oxygen. While they are fully healed, both need to be cleaned and cared for daily by my family or home healthcare nurses.
At times, I’d prefer not to think about that hospital stay. It was exhausting and scary. But those scars remind me of more than just the unpleasant parts. They also remind me that I survived something that most medical professionals said I never would fully recover from. Not only did I survive – I thrived.
I know there might be days when you look at your scars and cringe. You might even be cringing because of invisible emotional scars caused by things like fear or bad memories. Those can take just as much time and care to heal as the physical ones. I get it. I’ve been there.
But don’t forget that your scars tell an important story. They say that you overcame something difficult. They say that you are a survivor. They say that you are really darn strong. And that is always worth remembering.
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.
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