First, a thank-you
As I begin my second month as a columnist at Muscular Dystrophy News Today, I’m excited to be hearing from you about the columns. I’m on Twitter (@ralphyaniz) and always want to delve deeper. I also love some of the ideas I’m getting. As I mentioned in my first column, we are all so unique that even individuals dealing with the same diagnosis have different experiences. I look forward to hearing from you and building an important conversation.
What is living with creativity?
One of the best subjects to share information about is how we each live creatively. I’ve learned so much from others. Living with any disability makes us experts at survival. We are expert planners, visualizers, and executors. Whether we use a wheelchair, walker, cane, something else, or nothing at all, we learn how to get around.
Living with creativity means that we figure out how to achieve things that are easy for most people. It means learning to get from point A to point B, along with ways to grab success that only you can come up with by trial and error.
We are the best because we have to be
We thrive because we have to. The choice was never a real choice for me. In listening to my body, I knew right away that the decision of sitting at home and not staying mobile would lead to stagnation. And I truly believed it would be physical and mental. My column a few weeks ago about goal-setting discusses this ability to push limitations in an appropriate way.
As a counselor and life coach for many years, I worked with individuals to make real changes in their lives. We can change how we think, which leads to real changes in feelings. And we have greater power over our positive behaviors than we realize.
What always helps the learning process is giving some real-life examples.
What creative living looks like
When I started having some muscle loss in my legs, I preferred a chair that had armrests. This made it easier to use the leg power I had and to push myself up with my arms and shoulders. Sitting on high chairs, such as bar stools, was uncomfortable. When I entered a public place, I’d look for a solid chair with solid armrests. It was simple at that time, and I was strong enough so that even without armrests, I could push myself up from seat level with my hands.
The creativity came later. After some years of continued muscle loss, I found that using armrests and pushing myself out of a chair wasn’t going to work. I didn’t have enough strength anymore, and it caused real shoulder pain. As my legs weakened, more power had to come from my upper body, which also had lost some strength.
This is the point at which my body couldn’t automatically compensate. I began to think, to experiment, and to be creative. I may need to adapt more in the future, but here are some of the things I came up with that work for me:
- For public places, I look online to find a view of the room layout. This gives me a chance to see whether there are different types of seating options.
- I always choose higher seating if available. I am definitely less comfortable and would like to sit in lower seats, but I avoid that pain of getting up.
- If there are only lower seats, I’ve learned that the best for me now is a seat without armrests that is wide and solid. Some seats are so small I can’t find space for my hands to allow me to push up.
- Couches or benches are also fine, the higher the better, and as long as there is room for me to turn to my left and push myself out.
- Booths work as long as I can sit with my left (stronger) arm inside so that I can exit the booth by planting my right (stronger) leg and pushing up with my left arm.
The key is to experiment and try new things at home in your own space. I know my space well, and I can live and get around without my cane. But we must be creative.
Let’s share ideas
I am the biggest advocate for working together and helping each other. I’d love to see the ongoing sharing of ideas and situations. We can help others. I do a lot of traveling, and in future columns, I’ll share some of what I have learned along with my techniques. Please share your thoughts, and as always, you’ll find me on Twitter.
Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.