Wednesday, April 20, 2016


Living with a physical disability often means hiring someone to be our "arms and legs." Depending on our abilities and level of care needs, are what determine just how much assistance we may need....
I am one of those individuals. In my situation, living with a neuromuscular disorder called Spinal Muscular Atrophy type 3, means progression of my muscle weakness.  That means as the years have clicked by, my level of care needs increase. My hands can still type this article, albeit slowly, but my arms can't be raised. I can sort of  try to move my right forearm to reach something on the table, by "walking" my fingers across the table surface. Can you picture that? :o) It is amazing how we can come up with ways to figure out how to do things in a different or new way, on our own, when your abilities are changing.
For me, it has been  a blessing, to know that my muscles were/are going to slowly stop cooperating over the course of my life. It is one of the reasons that this blog is called Walking, Way Overrated. I did walk and for me, that ability slowly crept away. It wasn't a huge loss, because I had been prepared for it.
Mind you, these days, I must confess, that in spite of knowing what may happen next, I am a bit nervous. As long as I had the basic the use of my hands and forearms, I could still create, cook, shop,  knit, sew, garden, sort of hug and things like that. As of this moment, fifty percent of that isn't possible anymore. But thanks to my dear husband, I get to direct his hard working hands to shop, prepare and cook, not mention the many other ways he helps me out.
As for being a visual artist,  I find myself trying to get all I can done.  (my recent passion has been working in polymer clay) Working steadily whenever I have the energy and health to.  My thinking being, work while you still can. Just incase, the day comes, my hands decide to not work with me anymore! My dominant hand is the right one, the left one's job is to drive my power chair :o) So far, so good. CLICK HERE if you want to check out my artistic side!
It's all in God's hands. Ha, my hands are happily in HIS Hands!  I trust His provision. It's just the one function that I didn't really plan on losing before He takes me to my Home in Heaven!
These changes lead to automatically problem solving, as  many of us go. There's always a way,  if not with our own limbs, especially with the assistance of friends, family and PCAs!
Craig didn't always use a wheelchair. When he faced pretty much sudden changes in his lower limbs, he ended up having to live in the hospital for about three months in rehabilitation. At that point, in total, he had already been in hospitals a total of about six months. Anxious to breathe the fresh air at his home on the lake, he asked to go home. Turned out, it was too soon. In spite of the fact that he had to remain a rehab out-patient for aa total of two years. When he talks about it now, he says that he definitely should have lived a bit longer in the hospital. But he did it on his own, with a bit of assistance from an outside homemaker program. He lived on his own, with no one to call on for help. He happily shares how called on God's help daily! Craig has many amazing stories, miracles really, of how he was clearly helped physically many many times by God's ministering angels. No, he doesn't worship angels, we know though that the Bible says they are ministering spirits sent to help God's people. I too have incredible stories about God's protection, provision, and just overall help in every day life.
A good lesson to learn from Craig is, if you are facing changes to your body like that.  As anxious as you may be to get out of the hospital setting, make sure you feel completely comfortable, fully equipped to live your new life, having all the physical supports you need.
Over the course of our lives, Craig and I, have admired so many who have embraced sudden life altering injuries and illnesses. Not meaning they were happy about the changes, but they worked through it all with the help of family, friends, programs like rehabilitation, occupational therapy, physical therapy, independent living classes, problem solving, learning new ways to live their changed life. And many of us would say, nothing would have been possible without Jesus Christ being our strength (Craig and I "amen" that!)
The many people we admire, are lives that were changed suddenly, from able bodied, to paralyzed from the neck or waist down, diagnosed with progressive Multiple Sclerosis, or Neuromuscular Disorders such as ALS, and other issues,  they may not have welcomed the life altering events with open arms. In fact, I don't know too many who would. In fact, there are countless stories of those who asked to be removed from life support or have something done to end their life on purpose.  (One huge reason why the recent discussions in Canada, about the legalization of euthanasia, deeply saddens me and many of my peers)  One friend we know was in a motorcycle accident, receiving a serious head injuring, leaving him paralized on one side of his body. He told me once that he was on life support and wanted to be unplugged to die, believing life wouldn't be worth living. This dear fellow continued to share with me how thankful he was that no one pulled the plug. His life was a blessing. In fact, he fell in love and has been happily married for years now. They live together, with the assistance of Personal Care Attendants like I do.
Life has taken on a whole new meaning to so many of us.
I remember a neighbour once that told me in his broken communication that he once was so depressed that he tried to take his own life with a shotgun. Left with a severe head injury, he would never be able to walk without a cane, or speak clearly and smoothly, nor would he be able to write and spell like he did as an adult. But, he told me that he was so thankful that God saved him from his really wrong choice. Yes, his case was unusual and self inflicted but, if you ever faced depression, it can swallow you up if you let it, leaving you unable to think clearly and wisely. Personally, Craig and I believe depression that intense, is a spiritual battle in most cases. I remember feeling it myself as a teen, but thankfully was too terrified of dying. My point is, our friend made it through a tragic, life altering event and was happy to be alive. He too spent time in rehabilitation learning new ways to carry out daily life.
My Heroine...
 Joni Eareckson Tada, broke her neck in a diving accident in 1967. As she faced quadriplegia, never walking or feeling from the chest down, this side of Heaven, she too asked a friend to cut her wrists. Believing the lie that her life was no longer worth living. Thankfully, her friend didn't carry out Joni's request and the entire life altering event, changed her entire life, body, soul and spirit. Her life has
been incredible. Click here to meet Joni and her husband Ken. It was her story that inspired me more than a few time through my own life. It was all she went through that caused her, to depend more and more on her Lord and Saviour Jesus Christ. Her life has been a testimony for millions of us. Yes, she is an exception to our everyday lives,  she is an artist, advocate, has an entire organization called JONI AND FRIENDS, sings, collects and manages sending refurbished mobility equipment to many in other countries (Wheels for The World), is married, travels the world, is a public figure, author of many many books, has a radio program....Click her to see JAF. But think about it, if we go through "bad" times, get through it with a whole new way of living, and it helps to encourage even one person, it is so worth that one life. In God's eyes, one person is worth everything. One person Matters.
Meaningful Work...
And all these lives, Joni's included, like mine too, are able to be lived out fully, joyfully, even through pain, on this earth, made possible by God. Blessing us with not just friends and family, but trustworthy, compassionate, reliable individuals, PCAs, willing and able to give us a hand so we can live Independently.  What a meaningful way to be employed. Our friends and family do it out of love, for no remuneration. But there have been many who have chosen out of love for helping others, to become PCAs, as a career. Doing what they love, and as a bonus getting paid to do it. These employees matter to me so much, I wish I could pay them even more. (I am restricted by provincial funds). Sure, I have encountered some over these last four decades or so who clearly do not "love" what they do, it's only a jobber a stepping stone to something they believe is "bigger," BUT, the majority I have been supported by, give others a hand because they want to. It matters to them, it matters myself and countless others like me, more than they will ever know. The fact that they happen to be paid for doing something that matters to them, is meaningful, what a great career. No, it will never yield the dollars of a lawyer, Registered Nurse, Doctor...Movie Star or Hockey Player...Thankfully, there are so many out there, who are humble, willing to be "behind the scenes" so to speak. To think when I get to hang out with a bunch of friends, say something like getting married, I was able to show up dressed beautifully (wearing the custom fitted dress made by my loving aunt), because one of my PCAs got me up that morning, helped me get all cleaned up, putting on my wedding dress, putting me in my wheelchair just the way I need to sit...meeting all of my physical needs so I could show up to the church on time. Sitting upright, comfortable and well cared for because someone who isn't into being in the spotlight - made that possible. And each day of my life, made possible by wonderful ladies, who chooses to work for me, knowing that without one of these girls, I would have to live in a hospital. Thank You God!

Just Wanted To Share This Video Link
I Just watched this great interview with Joni Eareckson Tada and Lucy Wedemeyer where they talk about caregiving, especially when the one being cared for is your spouse or family member. Click here to watch a meaningful video.

No comments: