For a couple of years now, I’ve been working to achieve a positive wave of change in my life. My ultimate goals are to provide for myself financially and move into my own home. In other words, live more on my own terms rather than being hostage to everyone else’s lives and schedules. I’ve made progress by acquiring two jobs here at BioNews Services, but that’s only the first step toward my goals.
I’m unhappy with my current way of life, but I have learned to become content. I wrote in a previous column, “The Tyranny of More,” that contentment can’t be based on circumstances. If I allow my contentment to hinge on moving into my own home, for example, what happens once I have done it? I’ll undoubtedly latch onto something else. “Now I just need a wife to be content.” One must learn to be content as is. However, a new challenge faces me — a change in tradition and care.
My grandmother, who has been one of my primary caregivers for my entire life, is approaching the end of her ability to meet my physical needs, particularly in helping with transfers. At this point, her lifting me can, and has, hurt one or both of us. While I knew that grandma obviously couldn’t care for me forever, this development was sudden and I was unprepared.
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Our immediate approach is to have my grandfather assist with the lifting. His lack of experience has resulted in a hiccup or two, but his help has definitely been necessary. Our long-term plan is to acquire a ceiling lift, which is a sling that hangs from a track mounted on the ceiling. My previous experience with a lift in high school wasn’t great, so I’m not excited about going back to one now. Using it isn’t a one-person job, because one person needs to operate the lift while the other supports my neck and back. It is also a time-consuming process. I mean, who wants taking a leak to be a 30-minute endeavor?
My grandma is optimistic about the lift, but I remain skeptical. Maybe it is an inevitable addition to my care, but I hope not. I would prefer to find caregivers who can lift me, then use the lift only when in a pinch. I do think acquiring a lift is a good idea, but I just don’t want it to be my primary transfer method.
At a time of struggle to maintain contentment with my current situation, the last thing I wanted was a setback. The feeling of helplessness is not unfamiliar to me, but it’s taking a larger toll than usual right now. I wish I could somehow fix all of this, but I can’t. I simply have to overcome this hurdle and become refined by fire once again.
Have any advice to share with me to make my ceiling lift purchase and adjustment easier? Help me out in the SMA News Today forums.
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.