Acquiring More Independence Is Exhausting, but Worth It

If someone asks me to speak in front of hundreds of people, I say “no problem.” Stick a needle in my neck for a Spinraza injection, and it’s no big deal. When it comes to traveling across the country for an SMA conference or a comic book convention, I’m ready to roll anytime. I can handle all of these things and more without any issues.

Yet, there is one thing that always brings with it an adequate amount of stress and anxiety: training a new caregiver.

Though Randy is my primary caregiver and is with me on weekdays, I’ve been trying to find someone to work Saturday mornings for almost two years. After a couple of my former assistants left to join the military and go to grad school, respectively, I had to try to fill their positions. To say that this search has been a fiasco would be an understatement. I’ve contacted caregiving agencies that seemed great but were always understaffed and could never fill my designated time slot. I’ve also hired people who either showed up a couple times and then left without explanation, or who never showed up at all.

I firmly believe that people with disabilities are capable of living healthy, independent lifestyles, and I put that mentality into practice every day. Still, the act of pursuing independence is often complicated and downright exhausting.

Last Thursday, I took time out of my workday to do things like contact my case manager from a caregiving agency I’m now working with, contact another person from the agency to give them my payment information, schedule physical therapy appointments for the next few months, and coordinate rides for going out with friends. Having independence is a wonderful thing, but it comes at a cost.

Beyond the search for a good agency, the paperwork, and the financial aspects of hiring a caregiver, actually training them adds another level of stress. Imagine for a moment that the first time you meet someone, you’re lying in bed undressed and they have to get you up and ready for the day. It goes something like this:

“Hey, nice to meet you! So yeah, if you could roll me on my back first, and then help me get my sling for my ceiling lift tucked underneath my back and hips. We’ll transfer me to my chair first, and then I’ll drive out to the bathroom to get showered.”

This scenario is definitely not awkward in the least.

Having SMA is one thing, but having SMA and an independent lifestyle requires many characteristics and skills. For me to achieve the independence that I desire, I have to be communicative, vulnerable, patient, resourceful, diligent, and willing to sacrifice my time and money. When it comes to hiring and managing caregivers, coordinating schedules for caregivers and medical appointments, and managing my finances and resources, being an adult with SMA is a full-time job.

When I recently saw the new film “The Upside,” I couldn’t help but laugh at how the main character is a quadriplegic with an infinite amount of wealth and resources. Phillip Lacasse’s ability to pay for around-the-clock care without any problem is a fantasy for most of us with SMA and other disabilities, as is his multi-million-dollar mansion. Heck, his physical therapist even makes home visits!

As I write this, I am beyond grateful for the resources I do have and for the independence I’ve acquired in recent years. Still, I’d be lying if I said that the things I have to do to live more independently and make things easier for my parents didn’t wear me out. The time I spend emailing people, contacting agencies and training caregivers, all while working a full-time job, is exhausting. Having this kind of independence is also expensive.

Is it worth it, though? Absolutely. In spite of the sacrifices I have to make to be independent, I have a great quality of life. I’m happier and in a much better place than I was before I had caregivers, and I look forward to seeing what’s in store for me in the future.

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