Day +100.
Today was supposed to be a milestone in my BMT recovery process. It was supposed to be the day when all of my restrictions were lifted and I would be able to fully enter into society again as a “normal” person. I’d be able to eat what I want from wherever I wanted, wear contacts, take public transit freely, start working out at a gym again, and even have a drink at a bar. Unfortunately, this isn’t the reality today. Instead, I’m still restricted, fatigued, waiting, hoping for some sign of improvement or stability. Something that may take another 8 months to occur, if ever.
If you know much about me, you know one of my character strengths is that I’m a doer, a man of action. When there’s a need for something, I provide or get it done. This trait originates from, frankly, my lack of patience. I get anxious if I have to wait too long for something. I get antsy at the thought of dragging something out without taking some kind of action. I’m quick to make an efficient plan and I execute it promptly. So all of this waiting around to see what happens with my marrow business hasn’t been easy for me at all. I’m really being pushed to my limits, really being tested for all I’m worth.
To help me cope with these feelings of frustration, anger, and depression, I recently turned to channeling my energy towards embracing this unknown and uncertain time. I picked up Pema Chodron’s When Things Fall Apart: Heart Advice for Difficult Times because, well, I’m going through a difficult time, and there are some pretty good bits of wisdom that I’ve been chewing on lately.
In dealing with my fears of the unknown future, of losing sharp mental faculties and ability for critical thinking, of losing physical strength and stamina for everyday activities, or being merely human, this passage really smacked me in the face and opened my mind to think bigger:
The trick is to keep exploring and not bail out, even when we find out that something is not what we thought. That’s what we’re going to discover again and again and again. Nothing is what we thought. I can say that with great confidence. Emptiness is not what we thought. Neither is mindfulness or fear. Compassion — not what we thought.
Reading this made me think about how I was approaching the BMT and recovery. I had expected the transplant to go smoothly and the recovery to be relatively simple — both of which were true but mainly because the transplant didn’t work. This wasn’t what I expected and I was upset about it (naturally).
In my frustration, I was losing parts of my curious and adaptive self that were good at handling stressful situations; understandably so because, well, my life is on the line here. I was losing sight of the bigger picture and letting myself get wrapped up and consumed with the negative emotions whirring around in my body. [Spoiler alert: not conducive to physical recovery despite lack of substantial scientific proof.]
I’m shifting my focus to accepting the things that are out of my control and trusting that the outcome, whatever it may be, will be what is supposed to happen, what fundamental Christians call “trusting in God’s will.”
Another passage from Chodron’s book:
Life is a good teacher and a good friend. Things are always in transition, if we could only realize it. Nothing ever sums itself up in the way that we like to dream about. The off-center, in-between state is an ideal situation, a situation in which we don’t get caught and we can open our hearts and minds beyond limit. It’s a very tender, nonaggressive, open-ended state of affairs.
There’s a scientific concept about equilibrium in chemistry where in a closed system, though changes can occur, there is no net change within the system, thus the system is in an equilibrium state. But, the universe is an open system; therefore, equilibrium can never be achieved and change is constantly occurring. This is true about life. It is always in flux, always in motion, and we have to roll with the punches as they happen.
I’ll admit I lost a lot of this pliable flexibility when all of this started and became fairly selfish in an attempt to try to take control over a spiraling, chaotic, and scary situation. I had stopped rolling with the punches because the punches were too erratic and too painful. I had stopped being open to the possibilities of life and started demanding and expecting for events to occur in my way at my time. Clearly this has been an effective way of living stress-free. 
Moving forward, I’ve decided to let go of what will be, something I thought I could control with my knowledge and understanding of science. I’ve decided to embrace the fear and lean hard into the uncertainty of my future. I may never be able to multi-task five things at once again or run a 5k without getting winded. I may never be able to do quick mental math or read for hours on end. These are the harsh realities of my life. But I’m preparing myself to accept what will come and I’m hoping for the best outcome.
Kicking my feet up fireside.
The wine cave at Barnett. It was at least 20 degrees cooler in here than outdoors.
You can’t see it from this picture, but they were doing some heavy construction right in front of us. Oh, the wonders of photo editing. #Instagramperfect
The Bald Heme-iola 