They say, what doesn’t kill you, makes you stronger. That’s a hard pill for many of us to swallow! Especially those of us with arachnoiditis or other incurable neurological diseases – among so many other difficult life sucking diseases!
Arachnoiditis has taken my life, as I knew it from me! Many, many other diseases and illnesses have done the same for so many others, I understand that now. It’s hard to see it, you just CANNOT understand it, unless you are in it! Even I’m guilty! I didn’t get people who were always talking about their illnesses. I didn’t get people and how they could just be negative all the time and it was just one thing after another. I thought “man, how can they be like this constantly!” I didn’t want to hear about it all the time, and I understand that about people too!
But, unfortunately, now I understand it! It is our life! Everything we think about wanting to do revolves around our illnesses and how we can accommodate ourselves to make our pain or illness less punishing to us. When I go somewhere now, I have to think about what kind of seating there is and how long I’m going to be there. Because I’ll be damned, if it’s not the right kind of chair or too long, pain is coming to punish me. It comes daily anyhow, but to reduce it, to calm the beast, is the goal. I cannot imagine how difficulty this is for people who were not homebodies before, as I have been!
I was just looking at a photo on my refrigerator a few moments ago. It is a picture of my Grandpa on his last Christmas! We always spent Christmas at home and went up after to visit my Grandparents, but we knew…. this would be his last. So, we spent the holiday with them, trudged all our gifts 6 hours away to their tiny little farmhouse, so we could all be together on this blessed occasion for his last time!
He had cancer, it killed him! He was diagnosed with esophageal cancer in October of 1993 and when the surgeon came out, he told us he had 2 years max to live, I remember the room going black and a part of me dying inside. He lasted less than a year, a miserable, chemotherapy and pain filled year!
But, in that picture, knowing he was dying, he has the biggest smile on his face! The face of excitement over getting a VCR as a Christmas gift! I looked at that picture and I thought, how can I find that happiness on a more regular basis? His faith in God was so strong, he was content in knowing that whatever happened it was God’s plan! I find myself there sometimes too, but then I think, how can putting people in so much pain be his plan? Losing Grandpa did not make me stronger, it made me feel weak!
Arachnoiditis will never make me stronger, it will only continue to make me weaker. It is a progressive disease and the more I do, the faster it will get worse. My husband & I have chosen to do what we can (or for me – NOT DO many, many things I used to do), so that hopefully the progression will be slowed or minimal at best! I cannot bear the thought of losing control over my excretory systems or being paralyzed. It isn’t scarier than heck! So, I mostly, at this point, have fairly positive days! Some days, I am pissed at what has happened, what I cannot do, that this cannot be fixed!
What killed Grandpa and how he found a place to be happy is what I seek! For what has not killed me, has made me weak!