The Other Big "C" Word

Perhaps I'm more retrospective as I'm not your average healthy American.  But with each passing year I become more and more appreciative of the other big "C" word.  

This year, my thoughts turned to years way way past.  How as a child, I would lay awake all night long anticipating the coming of morning.  Vaguely I could here the grown ups having their celebrations farther down the hall and out in the living room.  The bedroom of my grandparents house that my brother and I were exiled to seemed cavernous but at the same time stood no chance of oppressing our enthusiastic anticipation of the coming morn.

The smell of cigarette smoke, this was an era when you were imprisoned if you didn't smoke, drifted into our room.  Grown up voices became a little louder as the evening got happier.  Soon, my brother and I eyes could no longer stand guard and we drifted off to sleep  to awake in the morning with a level of energy that can't be achieved on just a few hours sleep.

I've also found myself hoping that not only I, but my family and friends, hell everyone experienced the same anticipation.  Experienced all the family antics around the dinner table, sober, drunk or otherwise.  Hoping they were able to experience sitting in an island of quiet over by the planter watching the rest of the family laugh, hug, nap, sulk and pout.  Phone calls of festive greetings from family far away and friends nearby.

Sure there were years, like this one and some before, where everything wasn't perfect or even half way OK with one or the other of us.  But, still, the spirit of the day seemed to at least white wash those imperfections if not temporarily erase them.  What choice does one have?  Drag everyone down to drown in your woe is me?  Or, post pone the woe is me for a couple of days?

Today and tomorrow I make a decision.  Let the big "C" [Effing Evil Empire] kick my ass.  Make me miserable.  Pull everyone else down with me.  Or, embrace the other big "C" that is Christmas Day and every great feeling that goes with that big "C'.

I'm choosing the big "C" that is Christmas and screw you big "C" that is cancer...for the next couple days you are lower case "c".

Merry Christmas to all.

Talk to you later.

A New View From Two

Recently my progressive Neuropathy succeeded in landing me in  two wheel transportation mode.  Nope not a bicycle but a wheelchair.  I've not written because unlike cancer and everything that has come with it, being wheelchair bound as left me without even a breeze left in my sails.  Words that come to my mind are pointless, frustrating or "really paralysis!  Isn't cancer enough?"  There are days, hours and moods where I don't even recognize myself.

I seem to be slowly climbing out of the muck that is woe is me and selfishly thought it might help me if I share a few early wheelchair experiences in hopes it might help someone even newer at this "View From Two" than I am.  These are purely observations from my experience.  Simple things that wheelchair pros may deem too benign to even mention.  So, this post isn't a how too but rather a this is what happened to me.

Unless you were a young genius when you bought your house not a single thought of A.D.A. compliance crossed your mind nor did you look at the front porch and say to yourself "boy those stairs would be tough for a person in a wheelchair."  I look at the stairs in my home and I immediately think of...

If you have stairs you will need a ramp or a huge bank account.  Until my best friend came over and installed a ramp

we used a medical transport company to get to my appointments.  Quite handy, they would come get me down the stairs haul me off to my appointment and charge $150.00 a trip.  Not a penny of which was covered by insurance. That would have been over $2K just during radiation.  I can't afford that.

As you can see this ramp has a non-skid surface.  Remember, if you are in my situation, you can't feel anything below your waist.  Your feet are below your waist.  So, as you unknowingly have a foot trapped under your chair while going across a non skid surface your foot may end up looking like this;

While not painful, no feeling remember, they are bad enough to be concave wounds and wounds do open your world to infection.  Not good to fight an infection while you are fighting the Effing Evil Empire. Wear shoes.

Transferring from the wheelchair to various places can be a challenge.  It took almost a month for us to get the transfer from the chair to the pick up to be something less than a Laurel and Hardy comedy.  In the house though there are a few things the wheelchairer will need.

My insurance supplied a dinosaur of a wheelchair.  I quickly learned, as did my caregiver, that the wheelchair itself can damage you.  Especially the dinosaur versions as they have pinch 

points that will get you at the most irritating moments.

You'll also need some things to help you make transfers.  Especially two very important places, your toilet and shower.

A riser for your toilet

A shower bench

Unless you want to hassle with your chair and transfer every time you have to pee [if you have prostate cancer then peeing is a seemingly endless proposition] you'll need some portable urinals.  Don't get tricked by the glow in the dark urinals only the lid glows in the dark.  The lid you rip off and throw away first thing.

You might want to add some rails to help with your transfers.

A grabber for all the things out of reach which is everything

However, if you drop things and you will, you can teach your puppy to pick them up  and bring them to you.  Connor, pictured below, even brings in the mail.

Make sure you get a decent pair of gloves they will save your hands especially when braking on slopes.

What I don't have a pic of is patience and frustration.  If you wake up one morning and suddenly need a wheelchair everything, every move you took for granted is now a challenge and an adventure.  This goes for you caregiver too.  If your caregiver is your spouse she gets it doubly hard.  Don't think that she isn't frustrated, scared, and trying desperately for patience.  Make sure you tell her you appreciate everything she does and you must realize that she didn't plan on this phase of her marriage to be such a health nightmare.  Being a paraplegic is as tough on your caregiver as it is on you.  Try not to forget that.  Sadly sometimes I do.