Never Give Up Knocking on Doors and Searching for Your Advocates

It can be annoying when you receive devastating news, and someone naively says, “When one door closes, another one opens!” As someone who has received plenty of bad news, there is some truth to this statement, no matter how cliché it sounds.

In the ’90s, I received the devastating news that I would need scoliosis surgery to straighten my spine, which was considered life-threatening for people with my diagnosis. At just 10 years old, my mom came into my bedroom to tell me I needed major surgery. We both cried for a while. Most of the doctors in my area were unwilling to perform the operation on me. They were too nervous to put me under anesthesia for any reason, much less a risky operation. Doctors were closing their office doors in front of me.

Not to sound corny, but when these doors shut, others really did open. In my last column, I talked about how a medical team at a very special hospital treated me from when I was a baby until I was 4 years old. Their arms were wide open, willing to try anything, when other hospitals didn’t know how to treat SMA type 1. The hospital, as well as the whole community, had a huge heart.

We eventually had to move from this community to another state so I could transition into home care. A few years later, when I needed to have major surgery and hardly anybody wanted to do it, guess who stepped up to the plate again? The original community that treated me when I was younger!

My first pulmonologist was still there to guide me through the surgery. So, when I reflect back on that summer, I usually don’t think about all the side effects and complications that I experienced in the weeks after the surgery. I just remember how lovely it felt to have been welcomed back into that community for a month, and how kind people were.

When we traveled back home a month after the surgery to continue home care in another state, we found more generous people, particularly when state budget cuts threatened my services. Sometimes the unlikeliest of people will open the door for you.

Given the current political climate, it may be hard to think of a legislator as kind and giving. Believe me, over the years, I had to knock on a lot of doors to find the ones that were.

During the times when I’ve been scared to death that my nursing services would be cut, I remember which state policymakers’ doors remained shut to me. Their secretaries would come out and say, “The senator is too busy to see you.” When they did open the door, sometimes they painted such a bleak picture that if I could have covered my face in frustration, I would have.

Don’t let any of that discourage you. Advocacy, as with anything in life, is about never giving up. Keep knocking on doors. During the pandemic, knocking on doors means calling, emailing, and meeting virtually.

One policymaker who stands out is a senator. He is a close ally and genuine friend of mine. My mom and I met him during a town hall meeting in 2011 while he was serving as my state’s speaker of the house. He didn’t just open the door for us — he completely blew the doors off by greeting us on the street, saying, “Hi, Ari and Stephanie!”

I will discuss him and our 10-year friendship in another column very soon. For now, just know that this senator can be anyone in your life.

You, too, can find that advocate who will save your services multiple times like he has done for me.

You, too, can find someone that will always be there to rescue you, even if they’ve moved away.

Even from Washington, D.C., this senator was instrumental in making sure I quickly got both doses of a COVID-19 vaccine. This was a huge accomplishment, because my state had placed those with chronic illnesses in Group 4.

Your advocate or group of advocates can be people you never thought of. They don’t have to be a politician. Even if it takes years, never stop searching for people that can make a difference in your life. COVID-19 can’t stop you, because with a computer or a phone, you can contact anyone. Let’s keep knocking on those virtual doors together!

Which advocates have made a difference in your life? Let me know in the comments below.

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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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.