Not trying to sound very bitter though I probably will--so advanced warning. Just keep in mind that I've been getting sicker and sicker since I was 14 years old. At this point, I've spent the more of my life with a chronic, progressive and incurable disease than being in good health.

Hope and faith are sticky issues when you're actually having every little bit of what once you thought of as yourself disappear--sometimes quickly, sometimes slowly. When you spend your days where waking up is a trial of strength, both mental and physical. Where the first step that you take in the morning is an absolute guarantee of pain and that even though you're awake, you're not going to have any real presence of mind for at least 2-3 hours and in the meantime, it's like viewing the world in some jarbled, condensed fog. You're guaranteed that something is bound to go wrong with you throughout the course of a single day--whether it be nausea because your nerves in your inner ear are being corroded away or your head hurts and are dehydrated because you've been suffering from a 100 degree temp for the past 6 months. Just going grocery shopping can become a horrific ordeal because your hip that's been getting progressively worse from degenerative arthritis decides to slip out and by the time you reach home, you're so tired that it was as if you climbed Mt. Everett instead of just visiting the local supermarket. And the sorrows...there are alot of them for the chronically ill. If I had my choice, I wouldn't be irritable, tired and grumpy at the end of the day as I force myself to use every little last bit of me to just pick up after my daughter. I'd be making cookies or cupcakes with my kids and taking them to parks because I'd have the energy to actually do these things. I certainly wouldn't be sitting on my arse for the good portion of my life because I'm feeling too exhausted, too sick, to even move.

In the end, religious faith tends to fly out the window. You come to realize that there isn't going to be any God swooping in to cure you of your ails. The one thing that keeps you from just curling up and dying, however, is still hope. Hope is all you have anymore. When one has spent a life of sickness, you get realistic enough to understand that you can't just hope that you wake up one day and that the disease was all just a bad nightmare. Hope turns to science because that's the one place where there are definite possibilities. If hoping and believing that science will come up with a cure for you is simply just a pseudo-scientific religion, then what would you prefer? That us sick people all lose hope? That we simply curl up and die because we have nothing to place our hopes in?

Trying walking in our shoes.

Stephanie



In every man there is something wherein I may learn of him, and in that I am his pupil.--Ralph Waldo Emerson