16 years of Disability ... so far

Welcome to PainPAL

My name is Wylie.  I've been disabled for just over 16 years now, and I'm still waiting on double knee replacements.  It's my age the doctors all say;  at 42, you're too young to have the surgery, and you need to wait as long as you can.

Well F*ck!  That sucks!  16 years of disability, plus what's ahead, that's a helluva LOT of Pain to be going through day in and day out.  If anyone ever asks, it's WORK in and of itself, to live with REAL, saw-slicing pain, day in and day out.  But that's LIFE ain't it?!

Actually, it's my life, my burden, my path .... and to persevere, with patience and dignity, courage and above all, by FAITH, is how I've kept going, kept moving, stayed active, and NOT GIVEN UP, during these YEARS of suffering.  Yes I experience deep depression too, but I've found answers for myself, that keep me going.  AND isn't that the KEY?? to keep going???

Of course when in PAIN, and then in order to minimize the pain, I tried passivity.  But being passive has put me through a test I could not have imagined.  Thankfully, I witnessed the courage of my Godfather, as he went through Muscular Dystrophy from start to death ... a disease that has no fix or cure ... a disease that degrades the muscles.  What amazing courage he showed through his life.

Now, it's my turn to live with a situation that really tests me each day.  Now, I need to find that strength within MY self.  And oh! the acceptance ain't the easy part either.  I think that took me some eight to 10 years, before I finally engaged with this new situation in a positive way.

Disability is a completely different, new and foreign identity, with daily struggle, body in pain, with a mind that wants what it once was able to do, to BE, and now, wanting out of the Pain too!  Yet, thankfully, through my FAITH, and regular spiritual practices like prayer, meditation and going to Mass, plus with the help of doctors, I'm able to manage my situation with some measure of balance.

It's SO easy to lose your way because of pain!  Because of the passivity, I'd isolate myself.  I did so for years before discovering that it wasn't that helpful, and that asking others for help was REALLY Positive, as was their company!  I was ok with being alone (though I'm actually a social butterfly when healthy); I had been an independent adult, working as a jewelry store manager, when I slipped on a throw rug and fell.  Seven-some surgeries later (with two more reconstructions) and my life is forever changed.

Thankfully though, I'm also an artist (jewelry designer, singer and songwriter).  Of course with the disability, I can't walk or concentrate for very long, but I still can think, still can design, still can write, still can Sing!  And that's the point of a disability:  Adapt, find out what you can and can't do, then Do What You Can.  Learning to let go of my able-self was really, REALLY TOUGH.  I think I still grieve sometimes.  I don't really bargain with God, but I do tell God that I could do more if I were able-bodied again.

And yes, there is some hope of the next surgeries working.  The last two (partial) replacements failed within three months each however.  And WOW! what a bummer that was!  Remember that old comic sketch of the deer standing with the bulls-eye on his side, and the caption: 'Bummer of a birthmark Hal' ... yeah, that's kinda what that's like.  Going through all the surgery, Physical Therapy, pain, Hope, work, unknown, uncertainty, and nope, not better.  It wears on your insides.

Those two surgeries took a lot out of me emotionally, and, each day I still have to feel the pain emanating from my knees.  It often knocks me off my game ... all the damn time!  It's kinda shocking really, when I try to act normal or walk when I should be using my wheelchair.  And as a man, in this society, that seems to have lost its' moral courage and moral compass, being disabled isn't something aspired to!  Quite the opposite.

Use the motorized scooter at the Safeway or Target, and you'll see what I mean.  Everyone looks at you as if you might have a communicable disease!  Really though, most people are kind-hearted, yet, you will NOT FEEL THAT when you're riding around.  That's why I usually wear my sunglasses;  those looks are unsettling, as if something is really wrong with me ... but I'm the one in PAIN!!!

Where has the COMPASSION gone?

That's one theme I'll discuss in depth in this PainPAL blog.  My hope is that in sharing my situation, you and others who read the blog, may gain something from the sharing.  If you have a question or comment, I'll do my best to answer.

I plan on writing every week, or every two weeks, depending on how I'm feeling.  Whether you are disabled or not, everyone goes through pain of some kind:  physical, mental, emotional, etc...  I'd like to believe that in some small way, I can reach people who're hurting, just to share, and, so you know you're NOT ALONE.  Truth is, we're never alone.

I learned that God is always with us ... it's just up to us to ASK!

That's what happened to me.  In a moment of horror, when all seemed dark, and I felt LOST for all eternity, I asked God, "Are you there?  If you are, please help me!"  And would you believe, there was a knock at the door just then.  When I opened the door, I looked in disbelief:  there wasn't anyone there!!  God's been a part of my life ever since.  And I know with certainty, no one is ever alone.  NO ONE.  We are connected in ways we'll never understand.  And that's AMAZING!  So, don't be afraid.

Open your heart and let's go on a journey of discovery together.

Till next time ....

my name is Wylie, and I'm your PainPAL