Personal time and space when living with a rare disease such as spinal muscular atrophy (SMA) can be, frankly, nonexistent. The average person uses time alone to unwind, refresh, and perform personal tasks you’d prefer to do in private, rather than having someone shadow your every move. Naturally, we are created to be social beings, however, there are certain circumstances that require solitude. 

Meanwhile, the lifestyle of someone with SMA typically requires 24-hour care, or close to that. So, time apart from our caregivers is rare. Our assistants are there to perform what our hands and feet cannot do. And, for most of us, that’s the majority of physical tasks. 

I’m extremely grateful that I receive the care I have. Additionally, I’m also fortunate to have friends and family that are always willing to lend a hand. With that being said, it doesn’t mean that I don’t feel suffocated at times.

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One of the things I dream about most is showering solo. Having no one starring (not that they do, purposely), or feeling the need to speed the process to avoid physical stress on my caregiver. You can dictate your needs to your aide, but there’s this unremitting stress of worrying if they’re getting worn down. Figuring out how to balance what’s too much to ask, and what’s not enough, can make your head spin. Meanwhile,  showering is one of those tasks I struggle with the most. 

Usually, bathing is viewed by a woman as a time of escape for relaxation. However, for those with SMA, the event can be arduous and time-consuming. 

Nonetheless, being a woman suffering from SMA makes the challenge of finding privacy even greater. Unfortunately, we have our monthly cycle. This is something, after many years, I still feel uncomfortable having an aide help me with. I understand most aides are trained with assisting with such a task and think nothing of it. However, it’s a monthly, private issue I dread dealing with. It’s a vulnerable time and emotions are heightened. The ideal desire would be to crawl up in a ball by yourself, but even that requires assistance.

Honestly, expressing these feelings is even making me uncomfortable. But, I desire others who face similar frustrations, to know they’re not alone. 

Monetary and financial situations are difficult to manage independently, as well. Part of the care routine is handling our credit cards, cash, and having knowledge of our assets. Thankfully, we are living in a generation today, where organizing finances can be done online more readily.

However, going out for errands and activities requires handling what should be considered, private information. And, depending on the individual’s situation, there might be several hands in the pot. Figuring out who you can trust, can take time, and be tricky. I experienced a situation where I hired a caregiver who I thought I could depend on. I thought we developed a friendship. Sadly, they were writing down my debit card information and using it for their leisure expenses. Thankfully, my bank recognized the fraudulent transactions and notified me.

Other personal possessions were stolen as well, such as clothes and pantry items. I don’t express this to suggest the idea all caregivers behave this way;  there are many wonderful aides. But there are individuals with rare diseases who may not have family or friends to help support them and be more accessible. 

These are concerns always at the forefront of my mind. My parents won’t always be here, and they handle most of my personal belongings. I’m trying to become more creative in regards to how I can provide more independence for myself. 

That being said, I’m aware these are situations without definitive solutions. But, I found it important to share them, because it offers some insight on the type of lifestyle one with SMA endures. There are many hands on, and little room for personal space. And, finding creative ways to manage it cautiously, is essential to avoid burnout for all parties.