I just came across this poem on RA Warrior’s facebook page and had to share. It is beautiful and describes RA and many other diseases in a way that I have never been able to. I hope you enjoy it as much as I did.
I bend but I do not break.
I crack but I am not in pieces.
I may be bruised but I am not damaged.
I am shaken but I am not shattered.
I can be wounded but I cannot be destroyed.
I can be hurt, but I will heal.
I may cry tears but tears will not dissolve me.
I can stumble but I will rise.
I may sit down in acceptance but I will stand up in action.
I can be hurt but I will heal.
I may be… very discouraged but I will become very determined.
I am not broken.
I’ve been bent, but life has bent me.
I am bending, but I am choosing to bend.
As I am bending, I am strengthening and mending.
I am still alive and standing.
Death is final, but life is everything that has bent me but does not break me.
As some of you know, I’ve sat on the Arthritis Foundation Leadership Council Board here in Chicago for a few years now. In that time, I’ve met a lot of really wonderful people who share a common passion… To spread awareness of and eventually find a cure for Arthritis; in all of its nasty forms. Speaking of which, there are currently more than 100 different forms of Arthritis recognized by Rheumatologists throughout the world.
Among some of the inspirational people I’ve met along the way is Courtney Smith, the producer of the award winning documentary Beauty Does Lie: The Untold Stories of Autoimmune Diseases. Courtney was diagnosed with Myasthenia Gravis (MG) at the tender young age of 22. MG is a neuromuscular disease that produces antibodies which block muscle cells from receiving messages from Courtney’s nerves. At times, she is physically paralysed and her body is unable to move or respond because of this blocked communication between the muscles and nerves. Fatigue and muscle weakness are an everyday reality of Courtney’s life. But even after a series of life threatening trials and tribulations, all who know Courtney, know that she remains to live an incredibly happy, upbeat life.
I have recently had the pleasure of being asked to team up with Courtney to co-author her memoirs. I have to say I am beyond smitten with the opportunity. We plan on weaving Courtney’s tragic story into one that will make readers laugh, cry and ultimately be inspired by her incredible, almost unbelievable life story. I will keep you posted as I dive into this exciting project with Courtney. Wish us both luck and send some extra spoons our way. I have a feeling we’re going to need them.
It’s hard for people who know me to believe I’m chronically ill. Yep, I said it… I’m chronically ill. I live every one of my days with a disease and I will continue doing so every day for the rest of my life, unless by some miracle, a cure is found. Just like normal people; I go to work, I learn new things, I cook, I clean, I go to the gym and I spend time with my loved ones. If I must say so myself… I do a damn good job hiding who I really am. I am a sick girl.
To be honest, there are moments when I even forget I’m sick. There are actually split seconds when I’m overwhelmed with some emotion other than pain — and for an instant, I actually feel like a normal person again. During these brief moments, I feel like the person I was six years ago before this disease took over every inch of my body. Those were the good old days. I was naive and unappreciative of all the things normal people do… I didn’t realize that one day soon I’d miss being able to button my clothing, open jars, brush my teeth and blow dry my hair effortlessly. I didn’t know that one day I might wake up not being able to move, let alone get out of bed. And I sure as hell didn’t know it was possible to be this tired all the time. Even after all the sleep I’ve been getting.
It’s tough. It’s tough knowing that at 29 years old, I can’t do everything I want to anymore. I have to set limits for myself. I have to choose my battles and prioritize the things I want to do. I’ve always just “done it all” without thinking twice. Not anymore.
It’s especially tough being a sick girl who doesn’t look sick. Or maybe I should rephrase that. It’s good that I don’t look sick because I don’t want anyone’s pity. But it would be nice to get a seat on the subway once in a while like when my hips are burning and aching. It’d be nice to take the elevator with all the moms and strollers at the mall because I can barely lift my legs enough to walk. But it’s somewhat impossible to do these things without getting an occasional stink face from some judgemental frump. You know the look… It goes something like “what’s that 20-something girl doing sitting down? She should give up her seat to the older man”. I could just scream at those people who dish out their disapproving looks, “I’m a SICK GIRL”, I’d tell them. But instead, I just shrug, stand up and let the healthy 50-year-old man sit down in my place. Does this mean I’m hiding? Or do I simply not want to deal with the hassle of explaining my situation?
Despite all the angst and frustration that stems from living with a chronic illness, I try my hardest to stay as upbeat as possible. And at the end of the day, it truly is amazing what forcing yourself to smile can do for your day. So… Maybe it’s not hiding after all. Maybe pretending I’m not a sick girl is just my way of coping. How do you cope with being chronically ill?