After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Life in the Illuminated Aftermath

Life in the Illuminated Aftermath

After sharing my news of recently solving my almost 18 year medical mystery, and receiving an outpouring of support and encouragement, I came to fully comprehend what it feels like to have light illuminate an 18-year darkened room. It is quite the adjustment, to say the least. It’s overwhelming in every sense; eerily quiet, and yet with so much to take in you are just waiting for the proverbial next shoe to drop. I keep feeling like I’m in the surreal quiet during the eye of a hurricane; you see the aftermath of the first pass, and now you wait for the second part of the storm to come.

As I am slowly taking in my surroundings with new senses, I remind myself that nothing has really changed. It’s just seeing things with other senses. In the mantra, I find my bearings. Again, I never thought this would be how it would feel. That if I had one wish to fulfill, it would be to hide under the covers in my mother’s bed and eat ice-cream and be told it will somehow all be okay. (Camelot just looked up and told me he wants buttercream instead of ice-cream for provisions… He really is a bakery dog.)

Yet, running from a problem is not my style. So I modify my mantra and realize that, most importantly, I’m still me. I’m still quick to smile, quick to give a smart-ass reply, and I am still hungry to learn about almost any subject. I care, as always, about what is going on in my friend’s lives, and they do the same.

The diagnosis doesn’t change that, even if it is momentarily overwhelming my senses.

Day to day life hasn’t changed. Camelot still demands that we enjoy each day and take our daily “play time”. My previous commitments haven’t magically been fulfilled. There is still research to be done on what can be done to ensure, if anything, to keep me from getting worse.

There is one key exception. I don’t second guess my need to rest, and I don’t feel any guilt listening to my gut instinct. It might sound counter-intuitive, feeling guilty when listening to your gut, but there has been so much white noise in my mind for so many years, so many doctors blaming my lack of progress on lack of will; now knowing that I have a diagnosis to counter their arguments is…ginormous.

Part of the difficulty in getting the diagnosis is that my body is in “too good of health” and that I could “do too much” within all of my limitations. Several doctors have questioned why I was fighting for more. (I’m not going to even begin my litany of replies that I retorted in my head.) But there is truth, and pure relief, that I now know I have done right by my body.

Knowing this emboldens me to go back to the now illuminated room, slowly take inventory of each piece, research as I go. It gives me calm, even for a moment, as I remind myself that I need to keep living my life and going forward.

Which leads to the most beautiful nugget gleaned in the wake of the illumination of my diagnosis—I have a life; I haven’t waisted a moment of my journey in this world. I wouldn’t have lived any of this differently.

And that, is a true gift to know.

Lost Records

Lost Records

Mystery: Solved

Mystery: Solved