There is nothing easy about living with chronic illness. It’s like being in an abusive relationship that you can never leave. You are held back from accomplishments by your own body and slowly the pain and struggle turns you into to someone you don’t even recognize.
One of the things I have learned about living with chronic pain is that it is absolutely necessary to find out what it is you can do with your life, instead of constantly mourning what you cannot do.
Don’t get me wrong. Take as much time as you need to wallow in despair. Your life as you knew it is over, the person you were is dead. There is no getting back to her. Period. Be sad, be angry. Take time out from watching every healthy person around you live a normal life. Feel jealous. Find fellow spoonies who can fully understand you. Once you have cycled through the grief process figure something out to do.
I, for example, took up silversmithing. I cannot practice law with a constant headache, nor can I live the “low stress” life mandated by my doctors while trying to maintain a legal career with a significant disability. Law and stress go together like breathing and life. You simply can’t have one without the other. So I said goodbye to it. I cried, I mourned, and I watched jealously from the sidelines as my lawyer friends won cases and got promotions and built the careers I had worked so hard to join them in.
Now I make art. I make it when I feel well enough to make it. I sell it in the gallery I work in 5-6 hours a week. It is all I can do, but it’s not nothing. I am talented and capable and I make truly beautiful things. I am an artist, not an ex-lawyer. A creator, not a victim.
I have a positive identity that fits with the person I have become.
So go to art school, take music lessons, learn to sew, dance if you can stand it, teach yoga, write letters to the editor about disability issues facing our country, open an online store and start drop-shipping, do anything you can to grab a hold of your possibilities amidst all of these restrictions.
There is an art to being a spoonie. It’s not just about finding ways to engage socially or deal with medical frustrations, it’s also about carving out space for yourself within the confines of your condition. It’s about finding ways to create and inspire and succeed instead of only finding ways to deal with loss and failure.
We are broken. Our bodies beat us up everyday for the dumbest of reasons; It might rain later, we slept in half an hour longer than usual, it’s a Tuesday, we ate an olive. We can’t pack a bag and leave ourselves so we have to find a way to thrive in a hostile environment.
It takes patience, it takes wisdom, and it takes courage but it is so worth it. Each time I make a ring I have physical proof that I still bring something meaningful to this world. Every time I feed my family I am aware of my contribution. Each post on this blog shows me I still have relevant things to say.
So join me, find your new passion, and lets begin building something out of this fallen house of cards.