What do you know now that you wish you knew when you were first diagnosed?
It was a different world back in 1983 when I was diagnosed. Computers weren’t common household items and the World Wide Web wasn’t publicly available. There were no online support groups for people with SMA. With the exception of the Muscular Dystrophy Association, there weren’t any organizations or newsletters. I felt alone, marooned on an island with no one like me to talk to or to listen to.
I was filled with anxiety about how my life would be affected by SMA. I lived with the constant fear that I could lose my ability to walk at any time. I also thought that if I lost my ability to walk, life would be over for me.
I wish I knew how strong I was, and that I didn’t need to worry as much. I wish I knew that I would accomplish my goals of becoming a mother and a teacher, and that I would be married to a wonderful man that encourages and supports me.
As the years rolled on, my mobility became more limited. Today, I use a scooter outside the home and a walker inside. I wish I knew that life can still be fulfilling no matter what level of mobility I have.
How has SMA impacted your close relationships and obligations?
When I first got married to my husband, Jorge, I was much stronger than I am now. I had difficulty climbing stairs and I fell frequently, but I was able to work full-time and do all the cooking and cleaning without much help.
I will be married 20 years this September. During this time, I have survived a broken foot, a fractured tibia, a sprained ACL, a torn meniscus, a fractured patella, and surgery on a fractured hip. I went from doing it all to needing a little help doing some things (like cooking and laundry) and not being able to do other things at all (like mopping, vacuuming, and scrubbing the shower).
As I found myself depending on my husband more and more, I felt guilty. I felt like I wasn’t pulling my weight, especially after I retired and he continued to work full-time. These feelings had nothing to do with him. He has always been happy to help out, but I felt like I was losing my sense of self each time I had to adjust to my new “normal.”
I had to learn that it was OK to do less. I also had to learn how to release control. I’m still learning that there’s more than one way to do something and my way isn’t the only way.
I enjoy doing the things that we do together, like cooking a meal while listening to music. He gathers the ingredients and sets them on the counter, and I prepare the meal. He helps out with the laundry, I fold, and he puts it away. We are a team. Our chores have become a bonding experience rather than a hardship. I handle the bill-paying and finances to give him one less thing to do.
He calls me the “project manager” because I come up with the plans and he helps me carry them out. We definitely have become a well-oiled machine. We have had many adjustments throughout the years and I know that more may come, but I think we will be OK with them.
What does spinal muscular atrophy mean to you?
The first time I heard the words “spinal muscular atrophy,” I was elated. It meant that I wasn’t crazy or lazy. There was a name for what I complained about for the first 20 years of my life. For me, it meant vindication.
The meaning quickly changed to an incurable, untreatable, progressive life sentence of struggle. SMA has been an invisible enemy living inside of me that created battles out of ordinary tasks.
As I navigated through life, SMA’s meaning has changed. Today, it creates strength out of weakness and determination out of despair. In my life, it has been a motivator that pushed me to accomplish goals and acquire dreams in spite of its wrath.
My Perspective articles discuss SMA from a specific point of view. We understand that everyone with SMA or caring for someone with the condition has a different experience. We aim to share as many of those viewpoints as we can. We’d love to hear from you. Please submit your proposal for editorial consideration to email@example.com. My Perspective articles don’t reflect the opinions of MyHealthTeams staff, medical experts, partners, advertisers, or sponsors.