It feels as if with every step I take, a little bit more of my skin falls in my wake exposing my bones and my pain and the sadness that burns to my core. There is a deep loneliness that gnaws at the bones and the guts and the pain.
A few days ago a woman enviously told me how lucky I was to be able to stay at home. I nearly leapt three feet off the floor. I would have if my muscles weren’t burning from the exhaustion of carrying my body these days. Lucky?! I am trapped inside four exquisitely beautiful walls where I’ve spent too many days to count sobbing on the cold hardwood living room floor pleading with God to make my life like it used to be. I have two graduate degrees in business and I spend my days napping, folding laundry, straightening the home, loading and unloading the dishwasher and re washing the already clean clothing because I am bored to death. Home??!?!! I belong not home. I belong surrounded by my tribe changing the world, but I am shacked by an unfortunate set of genetic circumstances that leave me shackled to intravenous feeds and plummeting blood sugars.
I tell her that nothing is really as it seems. I cannot begin to understand the life she leads because I do not walk in her shoes. She looks blankly back at me. We mutually and silently respected the perspective of the other.
Onward…today I drove 2.5 hours north… a straight shot to Dartmouth Hitchcock Medical Center for a follow up visit from my last hospitalization and a check-in on my intravenous feedings are going.
I lost eight pounds since my last visit. That’s not great. My frame is small and weakening, but my mind is strong as hell. After reviewing better than expected lab results and discussing the emotional impact of living with chronic illness, we (more him than me) decided that we’ll start with at least six more months of IV feeding to continue to give my already not working gut a rest. There is no cure for gastroparesis. There is no cure for Type 1 diabetes. There is no cure for cystic fibrosis. I live with these inhabitants in my genes.
We’ll try to introduce solids regularly in six months. It could take years. It’s a hard pill to swallow but I am here on this earth with this set of diseases for a reason. I must embrace the gift. I must live all of my moments with my skin off and embrace the pain and loneliness and bursting joy and deep despair.
Driving the 2.5 hours home I was exhausted. My mind began to wander to the audiobook I was listening to… and I came to understand in a very profound way that I am simply a vehicle for a message that will provide strength to the men and women out there who fight for each of their days… each of their memories… each of their breaths and that gift is the greatest gift I can be given.