The early days of this disease were not easy. They were less painful and limiting, but no less scary. Knowing how to suddenly deal with pain and limitations and the unknown of what could come were unsettling at best.
But knowing what I should do about it? That was the easy part.
I knew to fight.
I knew to fight through pain, I knew to fight doctors until someone did the right thing, I knew to research and arm myself. I knew to fight to keep my life.
I had to do things differently to keep it. I had to do physical therapy and try experimental options and grasp at every straw. I took correspondence courses when I couldn't sit in three hour seminars at college, but I still graduated. I sang at church, but went to the lobby to lay on the couches during the homilies so I could have the energy to go in and finish cantoring the rest of the Mass. But I still sang. I adjusted everything in my life so that life – in essence – could stay the same.
I knew how to fight.
I did my research and knew what could come, so instead of giving into the pain I fought to stay mobile. I moved when it hurt. I forced myself to lay flat when my bones would barely straighten. I would lay on my stomach for 40 minutes every night when I first got into bed to try to keep a straight spine. Even when I wanted to scream.
I knew it was important.
So I fought.
Even when I had to give things up, I was giving them up in order to fight. I gave up my job so I could stay out of the hospital. I gave up dreams so I could keep from getting sicker. Every move I made to have less of life's activities was me fighting to keep my life. Fighting to keep social with my friends and keep my environment steady so my sanity was steady.
Now... the more I fight, the sicker I get. The more I try, the less I am able. The more I do what I know, the more that slips through my fingers. I did all that fighting and yet now find myself mostly confined to my bed. And not in that straightened position I fought so hard to maintain. I've just had to have the conversation with my friends – whose kids get sick and co-workers cough and schools are filled with cases of croup – that my door has to stay shut to them until the season of health comes back around. I fought to stay active in their lives, and now have to physically keep them out of mine.
To keep my body safe, to fight to not be sicker after a year-and-a-half straight of Cushing's and constant infections, I have to give up the things I was fighting for.
Why am I telling you all of this?
Because I'm learning as I go to let it go.
To live in this different version of life. To rest and not fight, because fighting no longer seems to always be the answer.
I see the winter coming, and I literally feel in my bones that it is going to challenge me at every turn. And while I'm learning how to survive without always fighting to survive, you – bless your hearts – are all along for the ride.
So I thought I should tell you that you might want to either fasten your seatbelts or put on your training wheels, because I have no idea how I'm going to handle navigating the road ahead.
To be on the safe side, I'm doing both. :)
