As Disability, MS, and other similar Awareness Months draw to a close, I thought this would be an appropriate time to share a in a different way. Describing how MS really affects me can prove difficult, outside of a list of concrete symptoms. So how does one communicate this? How about poetry?
National Poetry Month begins on Monday, so it’s time for poeming and pondering.
“Scars” by Angela Knight
a Misbehaving System is what I call it.
You can call it what you wish.
Cells that should kill germs harm others instead, and what do they leave behind?
What do they take away?
Energy. Control. Ability. Freedom.
“It’s all in your head,” you say.
And I agree.
With scars in my head,
I sometimes wonder what’s left.
But then I hear an inner voice, one of assurance:
“Scars are not alone. When you look, you’ll find unexpected gifts:
The gift of Empathy to offer an ear to hear of invisible pain, filled with frustration and hard to see with the outer eye.
The gift of Peace beyond understanding, easier to feel when busy-ness is forced aside and stillness found.
The gift of Love you’ll feel as dear ones see through and beyond your scars, and the truest love, shown through one whose scars bring new life.”
More than Scars.
That’s what I call it.
You can call it what you wish.
What am I talking about? Well, “MS Awareness Week,” March 10-16 2019, officially marked that week, though it seems repetitive to me. Every day, week, month I face symptoms of what has become my continuing journey. (Even though I managed to post this one day after the week ended, my daily awareness level hasn’t changed. I just need to manage time more effectively.) This journey started for me in June 1997, and the scenery has changed along the way.
For any interested in reading about the said “scenery,” I invite you to a 2017 post, “So what exactly does MS look like?”. When an otherwise functional nervous system is dinged around by a confused autoimmune system, it can wreak a bit of havoc. Not fun, and mostly invisible to the outside observer. My husband also posted about this particular week at his own blog, Freelance Knight. (Thank you, T.R.!)
Though MS has painted paths of life I had not planned, I do know that faith and family continue to be key. Thankful for medical progress and assistance each day, I look forward to seeing how God plans to use what I do have, both joys and struggles. Thank you for joining me for a moment on this journey!
“Be Cool. We Are!” An intriguing theme for Indiana’s Disability Awareness Month. I do encourage you to take a look at this message, shared by individuals with varying struggles. Governor Holcomb kicked off the month with support, and I appreciate the words he shared. What does it mean to be “cool”? To be “comfortable in your own skin,” he suggests.
As we face disability, either through experience or observation, it inevitably causes us to feel uncomfortable. As I have gone from starting to use a cane fifteen years ago to gradually using other methods of physical support, I have gradually learned to be comfortable in my own skin, so to speak. I first felt that my cane flashed neon lights, then that a walker screamed of weakness. But as a person facing disability, I have certainly learned the importance of helping others like me feel less awkward. A smile and positive words can work wonders. My cane didn’t glow, my walker didn’t scream, and my wheelchair was just fine.
Some disabilities appear outwardly, others are less obvious. When they appear more obvious, I appreciate the Governor’s Council’s advice: “Be Cool. We Are.” Sounds like a good plan! And for those with disabilities that are more hidden (but just as real), this theme may give reason to contemplate… what hidden limitations are faced by those around me? Whatever they may be, I’ll try to be cool.
During our earlier years of marriage, T.R. and I enjoyed going to state parks, museums, or fun little spots that we happened upon. After five years of marriage, these walks involved pushing either a double stroller or two smaller strollers. And time moved on. When the former stroller riders were in kindergarten, my own walking abilities started to falter, and I began using a cane on occasion. Then always. Then after medications became less useful, when those two young ladies were in junior high and high school, I started using a walker in the home and at church, and a wheelchair when we traveled or attended school events. As you can imagine, the walks with my dear husband dwindled away in time.
The wheelchair does allow us to traverse the world together, as long as paths or streets are smooth and free of debris and potholes. Which means that very few area streets worked for walks, and many paths were simply not passable. We searched for a wheelchair that was more all-terrain, but we what seemed like a simple request was anything but. The wheels on a wheelchair are generally not meant for use at uneven or rocky paths, and why would we want such a thing? Well, we were determined to find such a thing.
We had seen “jogging strollers,” allowing a mother (or father) to transport a young one, so I swallowed my pride as I assisted my dear husband in the search for an adult version of this. As we called mobility-related places (wheelchair sales locations), we came up dry. But we live in the age of the Internet, we knew there had to be something. Somewhere. We tried different semantics, and the term that finally worked was “push chair.” The Axiom Endeavor , though pricey, appeared to be what we were looking for. Then came the next step. This was Autumn 2017, and after we communicated with the manufacturer about the specifics of this item, we started our research into cost and insurance. I won’t share all of the details here, but suffice it to say that several medical reports and letters assisted in the final outcome, and by late December the push was in our possession!
Winter in Indiana… not the time for an outdoor stroll. So the unnamed Axiom sat unused and alone until the weather broke, and I believe it was early May that the first outside jaunt took place. A “push chair” is just that – an extremely well-engineered lawn chair of sorts, with supports for over 250 pounds of weight (thankfully not all necessary), with three large, sturdy tires. It could be pushed by my loving husband so we could take a walk of several blocks around our street. And that, my friends, shows how this is, indeed, a “love story.” A grown man bent over backward to research and obtain this item, and now he is pushing his wife in it, with them having conversations with folks along the way. He takes care of it, adds air to the tires when necessary, assists her in getting in and out, and demonstrates both patience and chivalry as they take their walks.
I’m jumping ahead in the story, though. What could we call this contraption? We’re not parts of the Facebook Age for no reason, so we asked for suggestions, of course. After receiving several fun acronyms as ideas (no, Steve and Roger, it was not going to be S.M.O.O.C.H.), we started narrowing it down. Barbie’s “Harriot the Chariot” was in the
running, but then we both thought a nod to an 80’s television show would be perfect. “Knight Rider” it is. Friends jokingly suggested we adhere flames to the sides, but that is far from necessary. We’ll each wear a weather-appropriate hat, sunscreen when necessary, and a coat as needed, but we can go on walks together again.
And that was the biggest reason the Knight Rider resides now in our home. My “Knight in Faded Denim” still wishes to share walks with his wife, even though many things have changed. He still loves ME, and I certainly love him!