With RSD, it often feels like the entire world is slanted against you. Mother Nature, the heavens, family, friends, the world, you name it, it feels as though everything is being thrown against you. RSD is akin to the Greek punishment to Sisyphus, eternally waking up to roll the giant rock uphill only to have it fall back down and start all over again, all the while feeling your bones ache, break and crush, feel as though lightning bolts are pulsing through your veins and seeing your skin turn bright blue and red. As the disease moves and grows, gains strength, it feels as though your life does the opposite.
While my disease has grown, gained hold of life in larger jumps each year...longer flares, worse symptoms, loss of of physical skills I use to have, longer recovery times, the rest of my life is shrinking. Loss of money, loss of friends, loss of confidence, loss of sense of self, loss of hope. Just like Sisyphus I try to push my way up, attempt to climb out of the pit of self despair and yet just like Sisyphus, I fall back to the ground each day. I have lost three careers to this disease. One I adored and was very successful at. Another that I was very successful at that was a wonderful career path. The last was good and a fine place to land. Each time, RSD in some way shape or form stole it all from me. How do you continue to reinvent yourself when your body is decaying and dying, a house on fire?
I have to believe that this isn't the end of me. While it can often feel as though it is; when the pain is so great, my heart hammering, my brain screaming and my limbs refusing to cooperate, I have to refuse to believe that this is the end of the line. That this is the sum of the life. I don't want this to be me. I don't want this exhausted, sad, broken vessel to be me. That's not to say that I don't experience joy, love, happiness and laughter because I do. It is simply that the scales are so heavily tipped against me. I want to figure out how to become a new me that isn't some horrible robot.
I had a SCS (spinal cord stimulator) implanted years ago to help with my pain. It's was suppose to be the answer. It was suppose to make things so much better. It has not. I was so thorough. I asked so many questions. I was so careful to challenge the surgeon as to all the possible downfalls and possible problems and I was told it would be clear sailing. Yet here I am. My battery pack is a mess, my wires cause me endless pain and I'm told that my frame is simply a-typical to what they implant and the wires are very much on the surface and the battery is too big for my frame. What am I suppose to do with that? They give me so much more pain.
I'm exhausted. The pain makes me not want to eat. I stumble. I can't get my body to listen to me a little bit more each day. Yet this can NOT be it. This is not what I am. This is not the sum of my parts. I'm staring down the barrel of the gun called the end of my thirties. I want my life to mean something. I want my life to be more than this. I damn sure don't want it to simply be defined by this disease. Currently that's what it is. Yes, by and large it does and has to dictate many things. But there has to be so much more that I can do within the parameters of the life that I have left. Other people with disease speak and inspire others about their diseases. They go on to do great works with their lives.
I love my husband and children. I love my dogs. Yes, I still use the plural form. I lost my beautiful GSD, 5 months ago and yet I can't bring myself to use the singular yet. I love photography and believe I have an eye for it. I love cooking and nutrition. What do I do with those things? How do I string those together? It doesn't help replace the successful careers that I've lost. It doesn't replace my physical state. Yet, it's something. It's a positive. It's something to put in the plus column. What I do with it, what I manage to stitch together from it is really up to me. I have no idea right now. I hope I find my way. I hope something comes to me. Most of all, I hope I can find my happy.
Sometimes the world seems against you
The journey may leave a scar
But scars can heal and reveal just
Where you are
The people you love will change you
The things you have learned will guide you
And nothing on earth can silence
The quiet voice still inside you
And when that voice starts to whisper
Moana you've come so far
Moana listen
Do you know who you are?
I Am Moana (Song Of The Ancestors)
While my disease has grown, gained hold of life in larger jumps each year...longer flares, worse symptoms, loss of of physical skills I use to have, longer recovery times, the rest of my life is shrinking. Loss of money, loss of friends, loss of confidence, loss of sense of self, loss of hope. Just like Sisyphus I try to push my way up, attempt to climb out of the pit of self despair and yet just like Sisyphus, I fall back to the ground each day. I have lost three careers to this disease. One I adored and was very successful at. Another that I was very successful at that was a wonderful career path. The last was good and a fine place to land. Each time, RSD in some way shape or form stole it all from me. How do you continue to reinvent yourself when your body is decaying and dying, a house on fire?
I have to believe that this isn't the end of me. While it can often feel as though it is; when the pain is so great, my heart hammering, my brain screaming and my limbs refusing to cooperate, I have to refuse to believe that this is the end of the line. That this is the sum of the life. I don't want this to be me. I don't want this exhausted, sad, broken vessel to be me. That's not to say that I don't experience joy, love, happiness and laughter because I do. It is simply that the scales are so heavily tipped against me. I want to figure out how to become a new me that isn't some horrible robot.
I had a SCS (spinal cord stimulator) implanted years ago to help with my pain. It's was suppose to be the answer. It was suppose to make things so much better. It has not. I was so thorough. I asked so many questions. I was so careful to challenge the surgeon as to all the possible downfalls and possible problems and I was told it would be clear sailing. Yet here I am. My battery pack is a mess, my wires cause me endless pain and I'm told that my frame is simply a-typical to what they implant and the wires are very much on the surface and the battery is too big for my frame. What am I suppose to do with that? They give me so much more pain.
I'm exhausted. The pain makes me not want to eat. I stumble. I can't get my body to listen to me a little bit more each day. Yet this can NOT be it. This is not what I am. This is not the sum of my parts. I'm staring down the barrel of the gun called the end of my thirties. I want my life to mean something. I want my life to be more than this. I damn sure don't want it to simply be defined by this disease. Currently that's what it is. Yes, by and large it does and has to dictate many things. But there has to be so much more that I can do within the parameters of the life that I have left. Other people with disease speak and inspire others about their diseases. They go on to do great works with their lives.
I love my husband and children. I love my dogs. Yes, I still use the plural form. I lost my beautiful GSD, 5 months ago and yet I can't bring myself to use the singular yet. I love photography and believe I have an eye for it. I love cooking and nutrition. What do I do with those things? How do I string those together? It doesn't help replace the successful careers that I've lost. It doesn't replace my physical state. Yet, it's something. It's a positive. It's something to put in the plus column. What I do with it, what I manage to stitch together from it is really up to me. I have no idea right now. I hope I find my way. I hope something comes to me. Most of all, I hope I can find my happy.
Sometimes the world seems against you
The journey may leave a scar
But scars can heal and reveal just
Where you are
The people you love will change you
The things you have learned will guide you
And nothing on earth can silence
The quiet voice still inside you
And when that voice starts to whisper
Moana you've come so far
Moana listen
Do you know who you are?
I Am Moana (Song Of The Ancestors)
