Today, lying in bed with a sore throat and a sinus cold, catching up on blogs and articles about autoimmunity, I read a post by Sarah Wilson of “I Quit Sugar” fame. This led me to Meghan O’Rourke’s essay “What Is Wrong With Me?”, which hit a very strong chord.
After struggling for years with undiagnosed autoimmune Hashimoto’s, and then continued struggles with it’s symptoms (and the symptoms of who knows what else), O’Rourke describes the inexplicable sensations of autoimmune disease. She manages to put into words the shear helplessness one feels, the “all in your head” looks in other people’s eyes, and the so bizarre and disconcerting feeling of being an imposter in one’s own body.
Words. Words that describe how I feel one day, then not the next. What a feeling of revelation! Yes, a way for other people to understand!
One of her doctor’s tells her that perhaps she will never feel any better than 80% of how she felt before her illness. Another doctor adds that maybe she never will get “better”. My mother said something very similar to me a few weeks ago. That I am in mourning of my previous “self”, and that I will need to eventually come to terms with the fact that what used to be 70 or 80% is now my 100%. I am still “me”, but I now operate under different circumstances. And that is O.K. It will just take some adjustment. So reading this was largely comforting to me.
And yet it also brought the sound of a door quietly shutting. Shutting, perhaps forever, on my “old self”.
When I’m functioning at a lower percentage of my old self, I feel like that old self has been completely lost, and I deeply lament her disappearance. When I am functioning closer to “normal”, I regain hope, and start to dream the old dreams. So why shouldn’t I dream those same dreams as my “new self”?
Mainly because I am terrified that I will never be able to partake in those dreams, never be able to climb that hill or swim in that ocean without dropping from hyperventilation. That I will never be able to take on that job or project because I can’t complete it in the same time a “healthy” person could. I may never be able to do a food tour of Italy because I get severe itchy hives and terrible eczema and bloating if I eat a single iota of grains or dairy or egg… How can I have adventurous and spontaneous thoughts of cycling through South America when I wouldn’t have dared even think about that before I got sick?!
Well. I am starting to think that if I don’t dream like I used to, I will never start doing what I used to dream – even just 80% of it.
If I can only cycle a single block in a day, why should that stop me from cycling that one block? If I can’t eat pizza in Napoli, why shouldn’t I sample wine and eat a bucket of olives in Tuscany? If I can’t happily commit to moving up in my current job, why shouldn’t I go back to school and make a job for myself doing something I am passionate about? Why can’t I share my experiences with others who are also functioning at 80% of their “old selves”?
Perhaps this illness is my opportunity to slow down and actually enjoy my life – whatever there will be of it. Perhaps my body is screaming at me to savour the things that are truly important – love of myself, love of the people in my life, love of music and love of the natural world around me. I am so infinitesimal, that perhaps 80% of anything is worth so much more than 100% of everything, or nothing.
I am sick in bed today, so I will follow my dreams again tomorrow.