Friday, March 11, 2016

The Remarkable Good in Unspeakable Tragedies

I'm back!! Okay, technically I didn't really go anywhere but I have taken a huge step back from advocating for my own self-preservation. Working full time and raising my now 2 year old as a single mom has been a juggling act. Honesty, I'm tired.
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 fiancĂ© (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

14 comments:

  1. Hi Nicole,

    I'm Carmen I'm currently stationed in California and have been experiencing dystonic movements for almost a year. I just want to extend a smile to you. I am interested in joining the group so I can get more insight into this disorder because I have yet to be diagnosed with a type of dystonia or similar neurological disorder.

    I pray the best for you and your daughter.

    ladygiggles.12@gmail.com

    ReplyDelete
  2. Hi Nicole! I am writing because I want to share with you that my sister has found incredible relief from cervical dystonia in terms of pain and movement. Her journey began in 2014 and became very severe in several months time. I prayed desperately for relief for her and it came. Please, let me share it with you. It is not surgery and anyone can try it. You would know in 6 days that it was working. Minimal cost too. Please, contact me at 620 453 1629. I am a wife and a mother of 4 and I live in Hugoton, Kansas. Just so you know a little about me.

    ReplyDelete
  3. Hello my name is Angie I was diagnosed in 2014...altho I had it long before then. My mother has cervical dystonia. I had had some symptoms as a child. The tremors in my hands we're as long as I can remember. Everyone use to ask my response was always idk my mom does.. Anyway initially I was diagnosed with cervical dystonia. As of now they told me to just call dystonia. Currently I have Hemi dystonia but who knows what next year will bring. Recently I woke up to go the restroom I couldn't move my legs. Going to the hospital no one knew anything about anything in the area that I'm in. They transferred me out to a bigger Hospital. Sadly I'm happy to report I'm on a walker at 40 years old. I currently have at home nurses and Physicians coming in my house. I just wanted to make you aware that you can get disability for dystonia of any type. It may take a couple tries but it does fall under disability

    ReplyDelete
  4. This comment has been removed by the author.

    ReplyDelete
  5. ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM DYSTONIA.
    Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from dystonia. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her dystonia and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from dystonia. and now she very mush okay without any side effects whatsoever, If you have dystonia, you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.

    ReplyDelete
  6. Dear FRIENDS,
    now i have a beautiful smiling face and so are which you all, after reading my testimony. My name is kate, I am 31 years old,
    And live with my boyfriend in Belgium, but I am UK. I was diagnosed in 2012 with cervical dystonia/spasmodic torticollis. Doctors told me this condition was forever. I know how you feel and what you are going through, I don't have a baby though. I just want to tell you that I am cured now,with the help of doctor williams herbal medication, the last time I can remember having cervical dystonia was in the summer of 2016. It was a long and difficult process but I am so thankful to dr williams I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to be in contact with dr williams and share your own testimony and thoughts feel free to e-mail him on; drwilliams098675@gmail.com for advice and for his product.

    Reply

    ReplyDelete
  7. Thanks to Dr Williams I am so mush happy today, I have been suffering from cervical dystonia for the past 8 years now, and i have spent a lot on western drugs which has all proved abortive, i have tried all means in life to become dystonia free , but there was no answer until i decided to try herbal solution and i found Dr Williams online and i contacted him and after I took his medication as instructed, i am now completely free from dystonia within one month of usage, i am so much happy, thanks to Dr Williams for helping me get my life back again without any form of crisis, i promise to tell your name and good deeds to the whole world,if you have dystonia you can always go through his website on dystoniacure.blogspot.com for more information ..

    ReplyDelete
    Replies
    1. Thanks for your good recommendation to Dr Williams,am now also free from cervical dystonia after one month of using his medicine.

      Delete
  8. It was during my research on HIV/Herpes that I stumbled upon the Hiv/Herpes information; information which is quite easy to find when doing a search for STD on google. I was into conspiracy at the time thought of HIV/Herpes Cured' being a conspiracy was something Ignorance though,I found pretty interesting about herbal medicine. I asked questions about the Herbal cure's on official HIV/Herpes websites and I was banned for doing so by moderators who told me that I was parroting Hiv/Herpes propaganda. This reinforced my belief that there is a cure for Hiv/Herpes Then i found a lady from germany name Achima Abelard Dr Itua Cure her Hiv so I send him a mail about my situation then talk more about it and send me his herbal medicine I drank for two weeks.And today I'm Cured no Hiv/Herpes in my life,I searched for Hiv/Herpes groups to attempt to make contact with people in order to learn more about Hiv/Herpes Herbal Cure's I believed at this time that you with the same disease this information is helpful to you and I wanted to do the best I could to spread this information in the hopes of helping other people.That Dr Itua Herbal Medicine makes me believes there is a hope for people suffering from,Parkinson's disease,Schizophrenia,Cancer,Scoliosis,Fibromyalgia,Fluoroquinolone Toxicity Syndrome Fibrodysplasia Ossificans Progressiva.Infertility, ,Epilepsy ,Diabetes ,Coeliac disease,,Arthritis,Amyotrophic Lateral Sclerosis,Alzheimer's disease,Adrenocortical carcinoma.Asthma,Allergic diseases.Hiv_ Aids,Herpes,Inflammatory bowel disease ,Copd,Diabetes,Hepatitis,I read about him online how he cure Tasha and Tara,Conley,Mckinney and many more suffrin from all kind of disease so i contacted him . He's a herbal doctor with a unique heart of God, Contact Emal..drituaherbalcenter@gmail.com Phone or whatsapp..+2348149277967.

    ReplyDelete
  9. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
    My daughter suffered from dystonia for more than 7 years which we started experiencing in her when she turned 4 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of neck discomfort . She usually tells me she haves jerky head movements . This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have dystonia , do not hesitate to contact him on drwilliams098675@gmail.com for advice and for his product. I hope this also helps someone out there.

    ReplyDelete
  10. Dear FRIENDS,
    now i have a beautiful smiling face and so are which you all, after reading my testimony. My name is kate, I am 31 years old,
    And i live with my husband in Belgium, but I am from UK. I was diagnosed in 2012 with cervical dystonia. Doctors told me this condition was forever. I know how you feel and what you are going through, I just want to tell you that I am cured now,with the help of doctor williams herbal medication, the last time I can remember having cervical dystonia was in the summer of 2016. It was a long and difficult process but I am so thankful to dr williams I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to get in contact with dr williams and share your own testimony and thoughts feel free to e-mail him on; drwilliams098675@gmail.com for advice and for his product.

    ReplyDelete
  11. If you have Herpes in your whole body such as fever blisters, hsv, or roofing shingles you know what it is like to stay with the pain and discomfort that herpes delivers. I don't need to tell you how awesome it would be to find something that works so well that you no longer need to fear about stress or outbreak,Dr Itua herbal medicine cure my herpes in two weeks of taking it.is genuine and natural herbal medicine it has no side effect, The reason I'm writing this is that I promised Dr Itua I will share his herbal work to the world to see Herpes is no more a big deal.also Dr Itua can as well cure the following diseases...HIV,Hsv 1/2,Hepatitis B,Cancer, Diabetes, Men/Woman Infertility, Scoliosis,Fibromyalgia,Fluoroquinolone Toxicity
    Syndrome Fibrodysplasia Ossificans Progressiva.Fatal Familial Insomnia Facator V Leiden Mutation , Lottery Spell,Copd, Shingles,Fibroid, Fibromyalgia, Liver/Kidney Inflamotry, Epilepsy,Hpv,Weak Erection,Wart Remover,Cold Sore, Coeliac disease,Creutzfeldt–Jakob disease,Cerebral Amyloid Angiopathy, Ataxia,Arthritis,Amyotrophic Lateral Sclerosis,Alzheimer's disease,Adrenocortical carcinoma.Asthma,Allergic Asthma. Here His Contact...drituaherbalcenter@gmail.com/Whatsapp Phone.+2348149277976. I paid for his herbal medicine and sent it to me through Courier Service which I pick it urgently and used.

    ReplyDelete
  12. I am Shelley from Los Angeles,California, I want to testify on how i got cured from cervical dystonia, I have suffered from cervical dystonia since the year 2011 with so mush pain,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the constant muscle contractions and pain , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including dystonia, at first i doubted if it we be able to cure me, but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from dystonia just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from dystonia you can contact him through his email on drwilliams098675@gmail.com for help.

    ReplyDelete
  13. I recently have some difficult conversations and I did what a lot of people do when they want to know how to do something. I googled it. I came across Dr Williams herbal medicine on blog-site so many people suffering from different kind of disease including dystonia thanking him about his good work. I also have dystonia. I wasn’t running all over God’s creation with every man I could find but here I am. I have felt bad about myself for so many years now because of my dystonia status. I obviously still have some self-accepting to do but I want to thank Dr Williams for everything he have done for me,after taking Dr Williams medicine i was completely free from cervical dystonia within one month of usage, I think what you are doing is so admirable. you have helped me a lot! I want to definitely reach out to you and thank you for your amazing work. You are a good person, and an extremely talented man. You have helped millions with your herbs, and have really inspired me,and i pray you still continue doing the good work.you can also email him on drwilliams098675@gmail.com for help

    ReplyDelete