Above all, trust in the slow work of God.
"We are quite naturally impatient in everything to reach the end without delay. We should like to skip the intermediate stages. We are impatient of being on the way to something unknown, something new.
And yet it is the law of all progress that it is made by passing through some stages of instability—and that it may take a very long time.
And so I think it is with you; your ideas mature gradually—let them grow, let them shape themselves, without undue haste. Don’t try to force them on, as though you could be today what time (that is to say, grace and circumstances acting on your own good will) will make of you tomorrow.
Only God could say what this new spirit gradually forming within you will be. Give Our Lord the benefit of believing that his hand is leading you, and accept the anxiety of feeling yourself in suspense and incomplete.
—Pierre Teilhard de Chardin
Written in 2018 while undergoing diagnostics for Autoimmune Dysautonomia.
I took this picture yesterday after completing 40 minutes of electric shocks to my major nerves (a wonderful test called an EMG), while awaiting the next phase - shocks with NEEDLES! (Little did I know that this was the easy emg. The sfemg that came later in 2019 involed needles, digging and shocks in the corner of my eye for an hour.)
This has been a non-dualistic journey...both a vacation with my daughter and a medical investigation into the mystery of invisible illness. While it is good news that the test came back negative, the unknown remains a very difficult space.
We must continue hunting for the diagnosis, which means more discomfort - more MRIs, a hip tap, potentially a muscle biopsy, and anything else they can think of to figure out what is wrong with me. In the midst of this diagnostic process, however, i find myself struggling with doubt. I believe this is human. It's a survival mechanism in the face of pain, discomfort and judgement; it is ultimately a manifestation of shame.
As I was falling asleep last night, exhausted and suffering with a migraine induced by the electric shocks, I found myself wondering..."Why am i hunting for what's wrong with me? Maybe I could just make the decision to be better, and that will do the trick? What if this is all in my head?"
I noticed my internal dialogue, and recognized it as the same voice that kept me going on the treadmill during my days with an eating disorder. The voice sounds like that of a drill seargent, telling me that I lack discipline and forcing me to keep going beyond my own capacity. This voice has been a useful survival skill over the years, but it no longer serves me. The voice of shame, doubt and criticism isn't confined to my own internal dialogue, however, as I deal with the judgements of doctors, friends, family and others. Undergoing the torture of diagnosis is bad enough...encountering doctors that don't understand is equally terrible...but the hardest part is staring into the abyss of the unknown and wishing that you could just decide to be better.
No one would choose this path willingly. And yet, in the face of the unknown, I must keep walking. It would be so much easier to believe that there's nothing wrong, but you can't make this up. In fact, we often joke in the rare disease community that if I were to fake it, I'd make up something much more believable! When faced with strange blood work and debilitating symptoms, the responsible thing to do is keep hunting. Why? Because I have an amazingly beautiful and wonderful daughter that needs me...because I have a lot of life to live...because I know exactly what it feels like to bury a man who pretended "nothing was wrong" for years until the colon cancer ravaged his body.
No, pretending isn't an option. So we hunt and treat simultaneously. As I walk this journey, I have also learned to keep living, because God has a plan for me - I see it every day!
To those that don't believe anything is wrong; that wish I wouldn't talk about it; that would prefer that I live beneath a facade of "I'm OK"; that choose not to take the time to understand; that cannot grasp the privalege of their own health... I will say this - feel free to part ways. It is the most empowering feeling in the world to be able to stand authentically in my truth and allow others to do the same.
It's also excruciating to lose someone I love. There is so much grief and loss that goes with chronic illness.
Update January 2020. I'm grateful to be in remission from the big bad bagel (that's what I call it) that knocked me down harder than the career ending and life changing concussion in 2011. A year of toe curling, anaphylaxis inducing ultra high dose prednisone and IVIG did the trick. Now im on the long walk back from the edge.
I welcome the path that God has before me.