Reality check through a fog
I’m on the official countdown now until I see Dan and Paolo. In a little less than 30 hours Steven and I will be sitting talking with them, finding out the particulars of the surgery, finding if he’ll take me as a patient. I just had to write a little tonight because the feelings you have before something like this are never easy to remember after the fact. Usually, clarity comes in once you have clarity and answers the misty fog that previously encompassed you is hard to remember. I have this feeling that it won’t be exactly like I expect – and that looking back, it will make perfect sense and seem as if the meeting when exactly as it should and exactly as I should have expected. I was looking through some writing from our trip to Maryland back in January and it was just like that. My only worry is that I am putting too much hope in this meeting, and that my expectations are too high. I pray it isn’t so, but anything that would devastate me would definitely rock the boat of my psyche right now.
There are so many things I wonder. I wonder if Paolo will take my case, I wonder if he can grow a large enough segment of my airways to eradicate the effects of the collapse, I wonder if the surgery I had in September will somehow mess up my chances for this. I wonder how we will get to Sweden, I wonder where we’ll stay where there, I wonder how soon this will happen, or how long I’ll have to wait. I wonder if I can make it that long. I wonder who will keep my service dog, I wonder if we’ll have access to the funds we need to pay for all of this. I wonder what they’ll do with my trachea, the one they’d be taking out, can they carry out research on it and find out what caused this terrible problem? Can my geneticist be in on that research? Will I be able to help others if I go through with the surgery? I wonder how Steven will manage this. Alone in a foreign country, his wife in the hospital for numerous weeks. No friends to visit, no family around, not even our beloved Sia. How lonely that will be.I wonder if all of it the transplant. Steven and I had to have the uncomfortable conversation tonight about what he would do with my body if I die Sweden. Could we afford to bring me home? These are the questions that play in my mind, that plague my mind at all hours of the day and night.
Sometimes I get moments of clarity where realize the true gravity of my health situation and how fragile, and precarious life i has become. I had one of those moments today and my eyes were opened to the stark reality that I could die, and that really, death is only a few moments away from me at any given time. I’m not particularly frightened of the thought, though asphyxiation was never high on my list of ways I’d like to die. I wonder with the moment is like when your consciousness leaves this earth and moves to another place. I wonder what you do and don’t feel, physically and emotionally. I imagine it is a peaceful event emotionally, though I always wonder about the physical pain. Billions of people before me have experienced this and it certainly nothing new. But I don’t know how many people are in a situation where these unanswered questions are always so visible. I really don’t worry about me, but I do worry about Steven, a lot. We’ve been through so much together, to be together, to have a life together. I don’t think he’ll easily face a life on his own.
Today has been a hard day. It was clear to me that I am never quite good enough for certain people in my life (no, not Steven). I’ve realized how many times I’ve been dropped by family and close friends because I didn’t meet their expectations which again says to me, I’m still not good enough. I feel like a leper, outcast, spurned by those who tell me they love me. What does it take to get people to stay around? How do you cope with being abandoned multiple times? How do you manage to have any belief in yourself when you’re told that genetic health conditions are your fault? I didn’t get to vote on whether or not I got this disease. I didn’t get asked whether or not I’d like it. I didn’t get asked if I’d be willing to have our lives shaped around. But instead, it was forced upon me, something I’ve had to fight and deal with this since I was a small child. Something that would cause me health problems and pain that people would dismiss. I was ignored and left to fend for myself, and then abandoned by my family.
But then I wonder what it would be like to breathe unfettered. It’s daunting to think of going through transplant surgery only to come back to constant headache pain, dislocations, subluxations, and constant pain in my limbs, back, joints. I wonder if solving the breathing problem will help these other issues at all, or if they will be things I will contend with for years to come. I wonder if I’d be free of carrying oxygen, free of my respirator. I wonder if I’ll be able to ride my bike, camp, or go to Prince Edward Island like we’ve always dreamed of. I wonder if we’ll keep the people in our lives right now, or if this will become too much for them as well. “A friend is made for the time of adversity.” I guess that puts our list of friends is rather short. But it makes me realize the importance of having people in your life that are true friends, through good times and bad, through fun, pain, despair, levity. A few true are worth thousands of those who love to be around in fair weather but who run at the first sign of a dark cloud.
I’m probably rambling on now about philosophical gibberish, but these things are incredibly important to me as I face the challenges ahead. Monday is not the end of a road ( unless Paolo refuses my case altogether), but the beginning of a long and uncertain journey. I hope and pray that somehow I’ll be able to help others as I go through this and come out on the other side. Though the limitations that have been forced upon me because of my health are extreme, I still have dreams of helping make the world a better place. And that’s with th at hope in my heart that I count down to Monday morning.