I write this from a car packed full of dogs and family somewhere in the middle of Arizona. The coffee is flowing and my brain won't shut up so why not write it out? I have received a ton of emails lately and I have been unable to follow my true passion and respond in an undivided attention sort of way. My attention has been elsewhere-I am balancing a very fine line between suffering with a progressing brain disorder and my desperate attempt to pretend my brain isn't sick and wanting to live like a normal 25 year old.
I've been failing. And that's ok I think. Focusing on things outside of my illness has been crucial to my success as a mother and work, not that everything is perfect on both fronts but my God, I'm trying. I think I can I think I can....
Until I can't.
The biggest battle in facing with dystonia right now is of all things, love. Something my heart so craves, something my daughter deserves from a real father figure, something I don't believe I will ever find. I spend so much time telling people God has a beautiful plan for their life, that He's writing their love story, and yet I am unable to believe the same will happen for me. Why? Why? Why?
I am embarrassed by my disorder and the complexities it brings. This "invisible" disorder has left me so exhausted. The idea of explaining to a new person how my life works is exhausting. The idea of going out and socializing after a week of work and being 100% devoted to my daughter is unbearable. Night after night after night I stay in, so craving a best friend and partner to just BE with me, be with me through the pain and the tears and the frustrations and loving me despite all of it.
So what do you do when you're a 25 single mother with a progressive brain disorder but desire a husband and a family and love and travel like any other young woman my age? Does anyone have an answer to this question? I spent most of this last week crying watching my sister and her now fiancé (yay!) just BE. The attentiveness, the respect, the playful banter, seeing them both be able to be themselves...oh my. It was something to watch. Something special and something I have only experienced once and it was magical. It was home. It had to end but watching my sisters love reminds me that it's out there.
Does this exist for everyone? Am I not meant to go down that path? Will I ever meet my best friend to share this crazy life with? Someone who will love my daughter and want to be apart of our lives?
My heart is so heavy it's hard to breathe. I have no idea what I'm doing with my career, navigating the messy blunders and highs and lows of single motherhood, trying to maintain my health to the best of my ability...I think a quarter life crisis is a normal part of life but it's brutal when the unknown is all around me. I spend most of the time being absolutely terrified of my life. How stupid is that?
These feelings will pass and I know other young women suffering with dystonia feel the same way I do but oh man, my heart hurts. I take so much comfort in my dystonia community, knowing I am not alone in my feelings, and I thank this community for that.
Finding a purpose for my very complicated life is a daunting task but I have to do it to keep going until I can't go anymore. Because the truth is I could be immune to my treatments tomorrow, or next week, or 15 years from now...only God knows.
If any other young women or men with dystonia feel the same way I do, take solace in the fact that we can all feel alone together. My all time favorite reminder:
Just because God works remarkable good out of unspeakable tragedies doesn't mean He orchestrated the tragedy.
I am trying to find the remarkable good, on his terms and not mine. My purpose may be bigger than my dream of getting married and having more kids. For the first time in a long time I have no answers and no clear direction. Can we all be lost together? Find the good in our broken bodies? Is that a remarkable good? I would like to think so.
If anyone out there needs help, reach out to me. I'm always here. A little broken, a little confused, but here. Still fighting for my life-not in a life or death sense-but for my quality of life. I urge every sufferer to keep fighting.
C.S. Lewis said, "It's not the load that breaks you down. It's the way you carry it."
Carry it with as much grace as possible. Let yourself have bad days and good days and broken days and cry and laugh and be frustrated but don't dwell in it. Don't let it define you. I'm not there yet but I'm a work in progress. I love this community. Don't hesitate to reach out. I'm here.
Nicoledean2@gmail.com
I am embarrassed by my disorder and the complexities it brings. This "invisible" disorder has left me so exhausted. The idea of explaining to a new person how my life works is exhausting. The idea of going out and socializing after a week of work and being 100% devoted to my daughter is unbearable. Night after night after night I stay in, so craving a best friend and partner to just BE with me, be with me through the pain and the tears and the frustrations and loving me despite all of it.
So what do you do when you're a 25 single mother with a progressive brain disorder but desire a husband and a family and love and travel like any other young woman my age? Does anyone have an answer to this question? I spent most of this last week crying watching my sister and her now fiancé (yay!) just BE. The attentiveness, the respect, the playful banter, seeing them both be able to be themselves...oh my. It was something to watch. Something special and something I have only experienced once and it was magical. It was home. It had to end but watching my sisters love reminds me that it's out there.
Does this exist for everyone? Am I not meant to go down that path? Will I ever meet my best friend to share this crazy life with? Someone who will love my daughter and want to be apart of our lives?
My heart is so heavy it's hard to breathe. I have no idea what I'm doing with my career, navigating the messy blunders and highs and lows of single motherhood, trying to maintain my health to the best of my ability...I think a quarter life crisis is a normal part of life but it's brutal when the unknown is all around me. I spend most of the time being absolutely terrified of my life. How stupid is that?
These feelings will pass and I know other young women suffering with dystonia feel the same way I do but oh man, my heart hurts. I take so much comfort in my dystonia community, knowing I am not alone in my feelings, and I thank this community for that.
Finding a purpose for my very complicated life is a daunting task but I have to do it to keep going until I can't go anymore. Because the truth is I could be immune to my treatments tomorrow, or next week, or 15 years from now...only God knows.
If any other young women or men with dystonia feel the same way I do, take solace in the fact that we can all feel alone together. My all time favorite reminder:
Just because God works remarkable good out of unspeakable tragedies doesn't mean He orchestrated the tragedy.
I am trying to find the remarkable good, on his terms and not mine. My purpose may be bigger than my dream of getting married and having more kids. For the first time in a long time I have no answers and no clear direction. Can we all be lost together? Find the good in our broken bodies? Is that a remarkable good? I would like to think so.
If anyone out there needs help, reach out to me. I'm always here. A little broken, a little confused, but here. Still fighting for my life-not in a life or death sense-but for my quality of life. I urge every sufferer to keep fighting.
C.S. Lewis said, "It's not the load that breaks you down. It's the way you carry it."
Carry it with as much grace as possible. Let yourself have bad days and good days and broken days and cry and laugh and be frustrated but don't dwell in it. Don't let it define you. I'm not there yet but I'm a work in progress. I love this community. Don't hesitate to reach out. I'm here.
Nicoledean2@gmail.com
