31 Days of SMA: Valuable Lessons From a Self-advocate

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Photo courtesy of Stephen Mikita

Day 23 of 31

This is Stephen Mikita’s (@stevemikita) story:

In 1968, I was 12 years old and had severe scoliosis. My doctors told me that my spine resembled the letter S, and I underwent spinal fusion. To say that the recovery in the ensuing weeks and months was both painful and emotionally trying would be an understatement.

But I learned valuable lessons about being an effective self-advocate. Although I eventually became an attorney, I learned more about advocacy from my mother than I ever learned during my 39 years as an assistant attorney general.

Each day my treating orthopedic surgeon and his army of residents would walk into my room and ask how I was doing. Initially, I remember my mother would lead the conversation and elaborate on my simple responses.

One day, however, that all changed. The hospital was 125 miles away from our home, and my mother had to make some calls and could not be in my room when my physician would come. She made sure that I communicated with him in her absence. She prepared me for my first opening statement!

To prepare, I needed to ask myself the following questions:

  1. What was causing me pain, and where was the pain located?
  2. How was I sleeping, and if I wasn’t sleeping well, what did I need to enable me to have better sleep?
  3. If my cast was causing pressure points or discomfort, what would alleviate those concerns?
  4. If I was having trouble moving my bowels, what could they do to help me be more regular?
  5. Did I have any concerns with physical or respiratory therapy?
  6. Did I have any special requests for food or beverages?

Mother reminded me that I was not the only patient and that I had to articulate my needs and concerns succinctly and persuasively. She said, “Keep it brief. They don’t have a lot of time to spend with you and I’m not always going to be there to help you.”

These lessons have remained with me for more than 50 years. Those of us with SMA spend a lot of time communicating and engaging with health professionals. Believe in yourself and in your ability to explain to others what you need and what will make you feel safe and understood.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.

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