It appears that the immunoglobulin infusions had no effect on my health. The Infectious Disease doctor I see told me that- if I was to experience improvement- it would be in the first two weeks. It has now been nearly three weeks. Perhaps I will see some changes soon, but it is not looking that way. My pain and fatigue are at their usual level- hugely limiting and often unbearable (what does that word really mean?). While the failure of the IgG is demoralizing, it is only another disappointment in a long saga of ineffective treatment plans. I will cross it off on the list of things tried and things failed. This illness has made quite a comfortable home in my body, and appears to be holding steadfast.
Last night as I was falling asleep I found myself saying a prayer that I used to say every night when I was a child. In fact, I thought that if I didn’t say it, something bad would happen, and it would be my fault. It goes like this: God, thank you for today. Please keep my whole family: alive, safe, healthy, and happy tonight. Thank you and I love you and goodnight. I reasoned that A.S.H.H. was in order of importance, and hoped that God understood prioritizing. When I was a kid I had this strange idea about mysticism and negotiation when it came to God. Like, I used to make up these rules, such as, if I make it to the top of the stairs in 3 seconds or less then it means that my sister will feel better soon and we will have a snow-day. And then I’d proceed to race to the top of the staircase, my heart pounding in intensity, certain that if I tripped, my future would be sealed. What drama! What ego! What precious innocence.
I know, now, that mostly things just happen. Our lives take gigantic turns as easily as a flower blooms and dies. And after the initial terror of adjusting to this concept, there comes tremendous comfort. I know, too, that I have a choice in how I think and feel, in the midst of any circumstance. This is my true tool of negotiation.
These days, I pray less and less for recovery. I’ve done so very much of that in the last eleven months. Instead, I pray for insight, routine, and some window of understanding as to how all this suffering might be helpful in someway. I don’t believe that prayers are questions or pleas that we submit to some giant orchestra-director in the sky, like a kindergarten note with: circle yes or no at the bottom. For me, prayer is its own purpose. When I pray I am expressing my heart’s intention to the universe as an act of hope. Hope, faith, and intention have inherent power. I pray because I am choosing to continue living and I believe in the holiness of all life; prayer is reverence for life. This is a bit related to why I have a dandelion tattoo- an impermanent moment happening on my forearm. A child-like fascination with the sacredness of every tiny, ordinary life, and the power of Intention.
I am thinking today of my 25th birthday. I was living in Leon, Nicaragua and working as a backpacking guide for a non-profit. (In fact, if you’re curious to see who I was in my former life– pre-July 16, 2012- look here at my former blog). Anyway, you know the tradition of making a wish on your birthday? Well, I was feeling pretty content, confident (cocky?) and complete in my life at the time. So, in lieu of a birthday wish for myself, I decided to write out a wish for each of the people I care about, articulating the particular things I wished for them in the coming year. Perhaps I knew somewhere instinctually that I was on the tail end of my free and autonomous lifestyle- that the wishes I had for my own life were soon to be put on hold for a good long while. Or (childhood hocus-pocus & ego-tripping alert) maybe if I had asked for something, I wouldn’t have fallen into this dreadful turn of events and become trapped in this illness. If if if if if. Pointless thinking.
I’ve begun brainstorming what I might do if my health never improves. This is the other kind of “if” thinking. If I become homebound, what else might I become? What can I do. I am playing with thoughts of working from home, online courses and degrees, trying freelance writing, etc. The thing is, I have to find a way to continue to CARE. And that is easy somedays and not so easy other days. Physical pain has the profound potential to wear a person down over time. I have tremendous admiration for those who have been ill for years and decades and continue to care.
I recently read this:
I’m trying to live by heart, because it’s the one human organ in which I’ve never lost faith. When brains break they usually seem to stay broken. When hearts break, though, a surprisingly frequent result is a torrent of newfound compassion. I’m so impressed by this; that in my heart I don’t feel angst or despair at all. I feel a need to stand by my heart’s assessment, often against the endless evidence spewed at me by my head.