In my situation, getting married depleted every benefit I had to support myself. These included in-home care and Social Security benefits. I was collecting approximately $674 in SSI a month, and receiving full-time patient care assistant (PCA) benefits. This helped me live more independently and to afford supplements and other products I needed that insurance didn’t cover. When I married, these benefits did not roll over into my marriage and made my eventual divorce process extremely stressful. 

Living with a rare disease such as spinal muscular atrophy (SMA) makes it difficult to transition into adulthood. Many of the benefits received during childhood aren’t readily available anymore. This of course depends upon the individual’s circumstances. 

Divorce was never expected, or even a thought in my mind. I was aware that this new beginning would impact me emotionally and mentally. But I never imagined the additional and unnecessary stresses that took place. 

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After living away for almost 7 years, I moved back with my parents at age 30. There were a lot of readjustments for all of us. And, although I was struggling with thoughts of shame and failure, I was extremely grateful I had parents who took me back without hesitation. However, I was older, and my body had some new, physical changes my parents had to become accustomed to in order to help care for me. Physically, it was taxing on my parents’ bodies. 

But that was just the beginning of adjustments we had to make. We had no idea what we were up against. We weren’t prepared for the number of months it took to free us from the innumerable dead ends we encountered to reach some sense of normalcy. The divorce, and lack of support to lean on from the government, turned me, and my family’s life upside down. 

The fact that I was over the age of 25, meant I was no longer eligible for my parents’ insurance. We had to start the care from scratch. However, the waiting list for state insurance and in-home care was 6 months to a year. We couldn’t believe what we were being told. For the condition I have, waiting for treatment risks survival. Because without care, I could not survive. I’m fully dependent on someone for food, showering, dressing, grooming, etc. 

I was filled with so much guilt, worry, and anxiety watching my parents struggle for months trying to get me the care I needed. They were both working 8-hour day jobs which, on several occasions, they almost lost because of the amount of time they had to take off to care for me. Thankfully, we learned of the family leave act, which allowed my dad to be home with me (without pay) for a specific amount of time. He was protected from losing his job.

Meanwhile, I was struggling with malnutrition, weight loss, and depression from the divorce. This demanded my parents’ time as well for the several doctor’s appointments I needed to attend. It felt like I jumped into a never-ending nightmare. 

After appealing once for state-supported care, we tried it again. But this time, I made the effort to call the care company weekly to express the desperation I had for care. I remember speaking to one woman who lacked any empathy for my situation. At this point, I was burnt out. I began crying and pleading with this woman. I told her if I’m left in bed, I have no way of getting out. Everything I need to live humanely depended on someone else. Somehow, by the grace of God, those words encouraged the woman to expedite my paperwork. For what would have taken 6 months to a year, I ended up receiving within 4 months of being home. 

Not having anything to lean on for support during my divorce, left me in limbo. Every benefit I once had, was obsolete in the system. Why is it necessary to keep proving that I have a rare disease that requires round-the-clock care? I often wonder where I would’ve gone if I wasn’t fortunate enough to still have my parents. Would I’ve become a ward of the state at age 30? Possibly. It also wasn’t fair watching my family jeopardize their sources of income and put their careers on the line to see my needs are met. 

Nevertheless, I am thankful there are provisions out there to help. It shows there are people who care. However, my biggest frustration is having to jump through hoops to receive what is already established needs, and lawfully able to obtain for my condition. It should have been an easier process considering these benefits were provided for me once before. However, I had to go through unnecessary measures to prove I was still in the same, physical situation. And, clinically, it’s clear my disease is progressive. 

That said, I’m grateful I spoke up. I’m thankful that God provided me with the strength to rise up against the opposition. I wish I knew all the answers to seal the broken pieces in the system. But, hopefully, with more informative stories being shared, similar to mine, it will result in progressive solutions for the future.