Why light is important in my life with SMA
Light, both literal and figurative, is key to hope for me
Many things help me live with SMA, but light plays a special role in my life. There is actual physical light, such as from the sun, and then there’s the light of hope. I’ve written a lot about the latter, and it’s so special that there’s more for me to say about it.
Years ago, I watched a show about someone with SMA who lives in Alaska. If you live in areas that don’t see the sun for part of the year, don’t feel left out as I talk about how sunshine helps me. I’ll talk about the light of hope below.
Sunlight and technology
Sunlight can be mentally nourishing. It doesn’t matter if it’s too cold for me to go outside. Just staring out the window can clear my thoughts.
After the winter solstice, I have a habit most evenings of going to my mom’s living room on the other side of the house we share. I stare out the big window as the sun goes down. I like to watch it stay light a little later each day.
This means a lot to me, as later sunsets signal that the warmer weather I look forward to is getting closer.
In my previous column, I explained how much I enjoy driving my wheelchair around the house. When the weather is warm enough, I also enjoy driving through the neighborhood. Going out in the warm air usually relaxes me, as does seeing all the green trees I pass on my route.
By the time I cruise the surrounding neighborhoods and return home, I’ve driven 1.5 miles. (The display on my wheelchair allows me to track my distance.) This drive is fun for me and for the nurses who walk with me.
I’m physically unable to raise or lower the blinds in my room. Someone has to do it for me. I have a good-sized window in my room, but the blinds are usually down, which is why I go to my mom’s living room. Her curtains are always open until dark.
However, I can’t always get to the living room on time to watch the sunset if I’m in the middle of receiving medical care from my nurses.
I’m very pleased that I won’t have this problem when I move into my new house. I will have two windows with shades that I can raise and lower using an app on my phone. I’ll be able to watch the sunset from my own room.
Both sunlight and technology bring me hope.
The light of hope and generosity
I view anything good that happens to me as the light of hope. The givers in my life are so giving. Their arms are stretched wide, ready to devote their time and give me the resources I need.
My current TD I-13 augmentative and alternative communication device is old and having technological issues. I use it to communicate because my actual voice can be unclear. Although some people are used to my real voice, the TD I-13’s computer voice helps me talk with those who aren’t.
Recently, I’ve been checking to see if my state’s Vocational Rehabilitation Services Program (VR) will buy me a new TD I-13, as well as a new desktop computer. VR is federally funded, with funds distributed to states, the District of Columbia, and several U.S. territories. The program helps people with disabilities advance their careers and engage in competitive employment.
It’s been a while since I’ve asked VR to pay for anything, but the program has always had my back. It had a big hand in getting me through college by paying for many of the school supplies and resources I needed to succeed academically.
That was more than 15 years ago. I’m thankful to see that the VR program hasn’t lost its generous spirit. Instead of giving me a tough time, staff members have been very cooperative and helped me fill out the necessary forms for the program to pay for my TD I-13 device and desktop computer. This is such a bright example of generosity.
Writing this column has helped me realize that I should never underestimate the importance of light in my life. Sunshine lifts my spirits, but the light of hope boosts them even more. Hope and generosity strengthen my faith and give me wings to soar!
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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