Bending my knees and rubbing my hands together I stare out onto the ice as I await my turn to step out. I can visualize the perfect program in my brain. I see myself soaring pin-straight in the air, rotating fast and landing strong. My spins are quick and my expressions are perfectly timed to the rise and fall of the music. As my fellow competitor takes their bow, I step onto the ice taking a few quick steps to gain my footing. My name is announced and the rest of the world falls away. I born to do this. I skate with strength and confidence to my opening position, smile on my face, electricity pulsating through every fiber of my being. As I wait in my opening position my mind is firm on what is ahead of me. Strong in knowing that I can accomplish what is in front of me. I am strong.
There are mornings I wake up confused, pulled from a far away dream where I am still this girl. Still strong, confident and assured. Athletic. Stable in my footing and stable with my self esteem. Then the fog clears and I remember where I am. I am 20 years into the grind of this disease. I am 40 years old and slowing down like a clock that someone forgot to wind. When I'm perfectly still people look at me and think I am fine. "But you look good!" well meaning friends and acquaintances exclaim. Then my body screams, protests and breaks down as I try to walk. Force it into a gear that it doesn't want to go into.
After living with this disease for more than half of my life, I found and lost hope so very many times. I have learned that some people will try to take advantage of you when you are down. That some people can't reconcile the new you with the one they use to know - the sick you with the healthy athletic version they loved. That for many, it's easier if they drop away. That this disease will strip you bare. It will take away just about everything near and dear to you. It will take away your lively hood, your hobbies, your health, your patience, your capacity for joy, your independence, your hopes, your dreams, your identity, your lifespan, your belief in pretty much everything. It will bend you and then it will break you. It will reveal to you just how badly you want to live. The things you truly care for and are willing to fight for. The reasons you crawl through hell day after day. Otherwise, you would stop. You are stripped to bone, the flesh is gone. It is at this point you decide to lie down or like a phoenix rise.
I'm choosing to rise. It's a slow rise. So slow, but I'm refusing to allow this disease to box me up in a coffin, a walking corpse for the remainder of my time here on earth. I'll look for the littlest of victories each day. One small victory. I'm going to take back the control of my health, my healthcare. I'm refusing to accept that what is being done now is the best that it can get for me. I refuse to allow people to talk down to me when I use my placard parking. I'm here for me. This life, it's been a very rough 20 years. That's not to say that I haven't had joy in the past 20 years. I have, in spades at times. I simply cannot accept the current course I'm on. I was so ashamed of my disease for so many years. So mad at myself that I couldn't heal myself. That I couldn't do enough physical therapy, eliminate enough from my diet, have enough mental fortitude to make this go away. I know that's ridiculous. That's the same as saying why couldn't I do the same to make cancer, or my congenital heart failure fix itself. It was my Type-A, have to fix it personality trying to, well, fix it. I can finally give myself grace. I couldn't make the miracle happen, that's ok. I can rebuild and give myself a second chance at all of this. I'm not dead yet.
The time will come again
And misery's no rest for wear gentleman
See that humankind is you
Like all the rest, down to
The scratches on the album you're singing to
Hold Your Head Up High ~ Darlingside
There are mornings I wake up confused, pulled from a far away dream where I am still this girl. Still strong, confident and assured. Athletic. Stable in my footing and stable with my self esteem. Then the fog clears and I remember where I am. I am 20 years into the grind of this disease. I am 40 years old and slowing down like a clock that someone forgot to wind. When I'm perfectly still people look at me and think I am fine. "But you look good!" well meaning friends and acquaintances exclaim. Then my body screams, protests and breaks down as I try to walk. Force it into a gear that it doesn't want to go into.
After living with this disease for more than half of my life, I found and lost hope so very many times. I have learned that some people will try to take advantage of you when you are down. That some people can't reconcile the new you with the one they use to know - the sick you with the healthy athletic version they loved. That for many, it's easier if they drop away. That this disease will strip you bare. It will take away just about everything near and dear to you. It will take away your lively hood, your hobbies, your health, your patience, your capacity for joy, your independence, your hopes, your dreams, your identity, your lifespan, your belief in pretty much everything. It will bend you and then it will break you. It will reveal to you just how badly you want to live. The things you truly care for and are willing to fight for. The reasons you crawl through hell day after day. Otherwise, you would stop. You are stripped to bone, the flesh is gone. It is at this point you decide to lie down or like a phoenix rise.
I'm choosing to rise. It's a slow rise. So slow, but I'm refusing to allow this disease to box me up in a coffin, a walking corpse for the remainder of my time here on earth. I'll look for the littlest of victories each day. One small victory. I'm going to take back the control of my health, my healthcare. I'm refusing to accept that what is being done now is the best that it can get for me. I refuse to allow people to talk down to me when I use my placard parking. I'm here for me. This life, it's been a very rough 20 years. That's not to say that I haven't had joy in the past 20 years. I have, in spades at times. I simply cannot accept the current course I'm on. I was so ashamed of my disease for so many years. So mad at myself that I couldn't heal myself. That I couldn't do enough physical therapy, eliminate enough from my diet, have enough mental fortitude to make this go away. I know that's ridiculous. That's the same as saying why couldn't I do the same to make cancer, or my congenital heart failure fix itself. It was my Type-A, have to fix it personality trying to, well, fix it. I can finally give myself grace. I couldn't make the miracle happen, that's ok. I can rebuild and give myself a second chance at all of this. I'm not dead yet.
The time will come again
And misery's no rest for wear gentleman
See that humankind is you
Like all the rest, down to
The scratches on the album you're singing to
Hold Your Head Up High ~ Darlingside
