I find myself drifting like dandelion fluff on the breeze. I've lost so much of myself to this stupid disease. I've lost the ability to make my body listen to me. I've had to give up passions and pursuits that once meant so much to me. Some of these I know would have naturally fallen off now that I'm a mother of two. When you have children you lose the ability and time (and quite frankly the desire, at least in my case) to focus on selfish pursuits.
That said, I'm at a loss as to how to define myself in terms larger than "mommy", "wife", "RSD". Don't get me wrong. I adore being a mommy, and I am blessed to be happily married - but I feel that there are many people out there that have the same tags. I loathe to use the RSD as any sort of marker to identify myself. I hate those three initials (although I hate CRPS even more - good lord let's confuse my brain even more!). I was posed the question when I was sitting quietly at a counter of our local breakfast diner eating my meal the other morning "what's your dream. What's your passion?" I'm embarrassed to say that I was stumped. I mean, flat out at a loss for words. I use to have dreams, a lot of them. Many of those dreams came true, so I came up with bigger and more wild dreams to chase down. Same thing goes for passions. Things were going crazily good and life was spinning merrily along on my dreams brigade- to the point that it spun out of control and crashed. RSD knocked me flat on my back, took the wind right out of my lungs and left me gasping for air. My husband found me there, lying broken and battered but still wanted to make a life with me. Sometimes I wonder about his judgement and decision making skills. I still have dreams, but they aren't for me. I dream that my children don't have what ever it is inside my body that went wrong. I dream that they will be unharmed. I have big dreams for my children. I have dreams and hope for my husband too. But for me...I couldn't think of one. That makes me sad.
How do you begin to learn to dream again? How do you learn to let yourself have hope to feel that excitement about the future rather than dread, fear and trepidation? I'm trying to take baby steps. I dream that I'll master skills on my camera well enough that I can do lovely family photos for our family. I have dreams that I can help a dear friend with her service dog business by trying to fire up my brain cells and help them with some fund raising. I have secret hopes that it will be profitable for them. Finally, I'm harboring a dream that maybe things will get better. Across the board, things will get better. The fog will lift, the sun will come out and this life will not be so scary anymore.
I've learned a lot since my diagnosis almost a decade ago, and living with this for more than that. Most importantly I know that I am stronger than RSD. Every day it tries to kill a piece of me - a piece of my body or a piece of my soul - but that I can't give in. I must stay strong. I must remember why I'm here. I must remember why I'm still navigating this maze. I've got two little ones, two fur babies and a husband that think I'm very needed. That's enough to keep me stumbling along in the dark, picking up the pieces, attempting to smooth out the jagged edges and find the new me.
Such is the way of the world
Can never know
Just where to put all your faith
And how will it grow
Rise, Eddie Vedder
That said, I'm at a loss as to how to define myself in terms larger than "mommy", "wife", "RSD". Don't get me wrong. I adore being a mommy, and I am blessed to be happily married - but I feel that there are many people out there that have the same tags. I loathe to use the RSD as any sort of marker to identify myself. I hate those three initials (although I hate CRPS even more - good lord let's confuse my brain even more!). I was posed the question when I was sitting quietly at a counter of our local breakfast diner eating my meal the other morning "what's your dream. What's your passion?" I'm embarrassed to say that I was stumped. I mean, flat out at a loss for words. I use to have dreams, a lot of them. Many of those dreams came true, so I came up with bigger and more wild dreams to chase down. Same thing goes for passions. Things were going crazily good and life was spinning merrily along on my dreams brigade- to the point that it spun out of control and crashed. RSD knocked me flat on my back, took the wind right out of my lungs and left me gasping for air. My husband found me there, lying broken and battered but still wanted to make a life with me. Sometimes I wonder about his judgement and decision making skills. I still have dreams, but they aren't for me. I dream that my children don't have what ever it is inside my body that went wrong. I dream that they will be unharmed. I have big dreams for my children. I have dreams and hope for my husband too. But for me...I couldn't think of one. That makes me sad.
How do you begin to learn to dream again? How do you learn to let yourself have hope to feel that excitement about the future rather than dread, fear and trepidation? I'm trying to take baby steps. I dream that I'll master skills on my camera well enough that I can do lovely family photos for our family. I have dreams that I can help a dear friend with her service dog business by trying to fire up my brain cells and help them with some fund raising. I have secret hopes that it will be profitable for them. Finally, I'm harboring a dream that maybe things will get better. Across the board, things will get better. The fog will lift, the sun will come out and this life will not be so scary anymore.
I've learned a lot since my diagnosis almost a decade ago, and living with this for more than that. Most importantly I know that I am stronger than RSD. Every day it tries to kill a piece of me - a piece of my body or a piece of my soul - but that I can't give in. I must stay strong. I must remember why I'm here. I must remember why I'm still navigating this maze. I've got two little ones, two fur babies and a husband that think I'm very needed. That's enough to keep me stumbling along in the dark, picking up the pieces, attempting to smooth out the jagged edges and find the new me.
Such is the way of the world
Can never know
Just where to put all your faith
And how will it grow
Rise, Eddie Vedder
