Learning to accept help from others in daily life is freeing, not debilitating
I was diagnosed with spinal muscular atrophy (SMA) at 18 months. I was pretty fortunate that my doctors said that I looked strong, and the quality of my life would be determined by every milestone I surpassed. However, they couldn’t foresee how I’d react to my own disability throughout life.
When I was young, all I wanted was to be what I considered “normal” or “typical.” I wanted to be like everyone else. With that said, I was blessed with two parents and other special people in my life who always told me I was beautiful, I could be anyone I wanted to be, and my disability never had to define me because I could define it. But my own voice said differently.
Consequently, I kept my distance from people with disabilities most of my life. In addition, I was incredibly stubborn. I wanted to accomplish everything on my own, whatever the task, even if it was painful, really challenging or almost impossible.
So, at what point did I go from self-denial to a place of self-acceptance? This may sound shocking, but it didn’t happen fully until my mid-to-late 30s. I faced horrible bouts of depression living in a state of self-denial until that point.
Things started changing in my late 20s, when my depression, stress and anxiety became so severe that I could barely get out of bed. I even had suicidal thoughts. It wasn’t the first time I felt this way, though, this time, I knew I needed intensive help. I reached out to the county mental health department and sought the guidance of a therapist who could hold me accountable and help reprogram my thinking.
It took me 10 years to fully accept myself. As you can see, things didn’t get fixed overnight, but I had a proper support system and people in place who helped empower, support and encourage me along the way. In the first five years of counseling, my therapist taught me how to ask for help and feel OK with receiving that help. This applied to physical and emotional help. He helped me understand that receiving kindness and love from others wasn’t a sign of weakness but a sign of strength.
In the last five years, my therapist and an influential teacher told me that my ego was keeping me stuck in that mode of self-denial. I took the courageous steps necessary to love myself and acknowledge the greatness of my life. Conquering the voice of the ego and facing my deepest fears propelled me into living a more fulfilling life. I was able to interact with people with disabilities and see them as inspirational. I was even able to see myself as inspirational.
At the same time, I realized that I could take more risks, which could help create liberation and independence. I had lived on my own before, and I was sure I could do it again. I’m currently living with my parents and receiving caregiving services. In the past year, I started really noticing my parents aging. I knew I needed to find a solution for all of us. That’s when I decided to speak with a social worker at Marianjoy Rehabilitation Hospital about supportive living facility locations.
At first, I was scared to look at this option. I knew I didn’t need a nursing home, and I didn’t know much about supportive living facilities. After a bit of trepidation, I made an appointment at one facility about 45 minutes from our house.
It was amazing! All of the necessary services are provided in the building and each person has their own apartment. Wow, that was exactly what I needed. The application process was pretty simple. You need to be a Medicaid recipient. Check. You need a state rehabilitation services evaluation. Check. Of course, there are also doctors’ notes and financial records that need to be provided. Check. Check.
I’m now on the waiting list. I’ll either be provided a studio or one-bedroom apartment. I was able to see a studio apartment. It was really spacious. There is 24/7 caregiving, laundry twice a week, three meals a day, and different medical doctors come at different times during the month. As a bonus, this facility also has extra amenities, such as a basketball court, bowling alley, greenhouse and access to the Fox River, which is beautiful.
Imagine having all the things that you need and having your own individual apartment and privacy. Doesn’t that sound amazing? I was told most states have these supportive living facilities for younger adults, but few people know about them. I’m envisioning a whole new life for myself. I’ll be able to have personal relationships, if I’d like them. I’m definitely going to start up oil painting again. I’ll be able to come and go as I please. Freedom bound! I can’t wait!
I hope you’ll take more risks and reach for your dreams. I promise it will be worth it.
Jacqueline Johnson, 38, was diagnosed with SMA at 18 months. She’s currently working as an online English teacher working with international students all over the world. She’s also a professional coach and aspires to be a motivational speaker. You can reach out to her at linkedin.com/in/jackiejohnson16.
Help for Depression
When you or a loved one experiences persistent anxiety, stress or depression associated with neuromuscular disease, a dedicated mental health professional can help. Since 1950, the Muscular Dystrophy Association has been helping individuals and families confront the daily challenges of living with neuromuscular disease, which makes your local MDA office and MDA Care Center invaluable resources to find support groups and more. Some MDA Care Centers have psychologists available. In other cases, your MDA Care Center physician or social worker can refer you to appropriate specialists. Contact your local MDA office to learn more (Type your ZIP code into the "Find MDA in Your Community” box.)
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Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 800-572-1717. If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.