Thinking Back on When I Shared My Use With Assistive Devices
There is this new trend of Reels (short video clips) and Tik Toks. Shout out to Brooke who makes the most entertaining and resonating MS Tik Toks for our viewing pleasure! For example, this Instagram reel, Conversations with MS. I enjoy scrolling through as a pastime while relaxing.
A song I could relate to
One evening, I happened upon a reel on YouTube with a young man showing his drumming skills to a popular song by R&B artist Diana Ross entitled, I'm Coming Out. I am a music lover so the video definitely had my attention. I like that song and, I mean, the drumming was phenomenal! But the lyrics:
"I'm coming out!
I want the world to know,
Got to let it show!"
Sang with such boldness and confidence, it suddenly had me in reflection mode.
The new me
This song could easily be the proclamation for a 'new me' idea. It could perhaps be used as a theme for a milestone birthday celebration (18th, 21th, 50th) or an anthem for openly declaring sexual orientation. The first verse goes on to say:
"There's a new me coming out!
And I just have to live,
And I want to give.
I'm completely positive,
I think this time around,
I am gonna do it
Like you never knew it.
Oh, I'll make it through."
And my reflection took me to my walk with multiple sclerosis (no pun intended). Specifically, when I had to come out with my cane. I definitely didn't have the boldness or confidence that Diana Ross projected in the song.
Sharing my MS and assisted devices
For some, MS is an invisible disease. This means others wouldn't see the internal sufferings such as neuropathy, sensory issues, fatigue, numbness, tingling, or incontinence problems. However, the day I was diagnosed at age 37, my neurologist gave me a script for a cane. My balance was horrid and I'd begun avoiding walking through open spaces and holding on to something for stability. I didn't even realize it and it was inconspicuous to others, but I learned what was going on on July 13, 2007.
Introducing my cane
I came out on July 14, 2007, when I went to work with the new pink cane I'd donned the previous afternoon from a local durable medical equipment (DME) supplier. I remember being a bit embarrassed, not too happy, and very self-conscious - certainly not like the tone of that song.
Introducing my walker
Several years later, I began being more vulnerable with my cane. I'd fall because my balance would worsen at times. I also suffered from foot drop where I'd trip because my ankles had weakened and it was difficult to walk heel to toe. The front of my foot would drag. My legs were difficult to move because they felt super heavy due to nerve damage.
This led to the need for more support to keep me moving on my feet and I came out with a walker. I recall being a bit embarrassed. More exasperated than embarrassed or unhappy, although still self-conscious - and, still, very much not like the positive tone of that song.
Introducing my wheelchair
Then the time came when walking at times, or for too long, was way too difficult and fatiguing and I came out, intermittently, using a wheelchair. And approximately 13 years post-diagnosis, it was a wheelchair, period. Now, I can't say I was embarrassed, unhappy necessarily, or self-conscious. Tired? Yes. Disappointed? Yes. Because admittedly, I'd prefer not to have MS or any of the perils and mobility challenges at all. But I do...
And I overcame the coming out of each assistive device stage without being insecure or downtrodden. And I am living, not merely existing. And like Ms. Ross sings in another verse:
"I've got to show the world,
All that I want to be,
And all my abilities.
There's so much more to me."
What I can say with confidence, in spite of all else, is that I am fearfully and wonderfully made!
Do you experience falls with MS?
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