…I couldn’t walk.

Okay, maybe I could do what might barely be considered by some to be ‘walking’…but only with significant effort. With the help of crutches. And not without experiencing excruciating pain.

This time last year…

My body, especially my legs, were wracked with a sudden onset of psoriatic arthritis. Inflamation in what felt like every muscle, tendon…hell, every nerve ending in my legs and feet. Pain everywhere.

This time last year…

…I feared the bathroom. Not because the room itself was inherently scary, but rather, what it represented scared me. The effort, pain and challenge of getting to the bathroom….sitting down (rather than falling) and then, getting back up again, was always an exercise in pain, suffering and humiliation (nothing like sitting in the john for 40 minutes because you can’t get up and really don’t want to have to call out to your kids for help standing up..or for them to see the tears on your face because you’ve spent much of that 40 minutes crying).

This time last year…

..’Hope’ was a thin, fragile thread that I alternately clung to…and occasionally lost grip of.

There was a piece today on NPR about folks with Multiple Sclerosis. In listening to their stories (and the one of another person who has become disabled due to illness) I so totally empathized with their plight. Feeling your ability to move slowly fade….feeling sorry for yourself…and even…feeling like you are, somehow to blame for your illness.

I’ve been there.

Really.

It feels like words don’t do justice to the kind of mindspace one gets to when your world changes so drastically for the negative. Pain. Fear. Loneliness. ’Lather, rinse, repeat’.

Lying there stuck living in a room in my house…camped out in a recliner…unable to even get something from across the room….the things that helped keep that little thread of hope alive were my family, my boss & team at work, and my friends. My family both tended to my needs that I couldn’t do for myself…My boss, because he was incredibly understanding and supportive (allowing me to work from home for a significant period), my team at work as they supported me too and made sure everything ran well when I was unable to come into the office…and my friends…well, If ever I questioned the value of the internet/’social networking’/etc….and it’s ability to connect to people far away….well, this last year taught me that it has the power to help keep you sane when your body is falling apart. That is, if you have friends to reach out to…or just read the day to day goings-on of them and their life ‘on the outside’. And I, apparently, am blessed with many of them.

So…as you can probably tell…last year was….rough.

This time THIS year…

…due to the miracle of modern medicine, I am better. After starting on one Arthritis medicine last February, in July the docs started me on a second medication, Methotrexate, and after a few months on both meds, things started getting noticibly better…. I had progressed from crutches to a cane at that point and then found I needed my cane less and less as time went on under the new meds (haven’t used it in 4 months now). Things that used to hurt, hurt less…and less…and then, one day I noticed that I could do those things with no pain at all.

Yes, this time THIS year I am feeling a damn sight better. So much so that I have started doing things that I haven’t done in over a year:

I’ve gone for walks.

I have started woodworking again (now that I can actually stand for more than 10 mintues at a time).

And most recently I started working on the long-overdue JukeBus renovation project (http://www.chefjuke.com/GALLERY/JUKEBUS/index.html). Getting ready to put a new floor into the bus, then build some seats, and paint, and….

This time THIS year…

I have come to a place where I am living the dream. Nothing so major as I am sure other folks dream of. Just a little dream born of a kind of hope that, a year ago, I could barely hang on to….the hope I could someday do something as simple as walk across a room again, without crutches…without a cane…without pain.
As I wrote this I stopped a few times to get up and, before I sat down again, well, I danced a little jig. Nothing particularly difficult or, for that matter, pleasant to look at. But being able to move both my legs…to sort of hop up and down….to dance (if you can call it that)….feels only slightly short of a miracle to me now.

In fact…almost every day I find something feels that way.

A miracle.

Maybe not a full blown “raising Lazarus from the dead”, ”I got cured of cancer” or “finding-a-baby-alive-at-the-bottom-of-a-collapsed-building” miracle, but for me, a miracle nonetheless.

There still is that tinge of fear way back in the small of my brain that says “it could come back….the meds could fail…the arthritis could come back”….. but I much prefer paying attention to that shiny ray of hope that is surrounding me now…the one that says…’Well at least you have today….and today is pretty damn good. Enjoy it while you can and we’ll deal with tomorrow when it comes.’

And for today, that is good enough for me.

Love you guys.

-Pat