Write a " Dear Dystonia " letter here

The last two weeks have simply been surprising. I have been overwhelmed by the events of the media coverage about dystonia. It all has been too much at one time. Last week felt like I never had undergone DBS. Dystonia somehow can overcome the programming effects.
I thought it might be a good idea if I began a new thread that focused on " Dear Dystonia "- a letter to dystonia, the disorder, the complications, the emotions that are involved...Dystonia has simply fatigued me and has led me to question alot of things.
Share your own DEAR Dystonia letter here.
beka
This thread is not being written for self-pity reasons, but have read that sometimes writing a lost loved one, disease etc. can help COPE!

Tags: assumptions, beka, clarification, copyrighted, dbs, dystonia, emotions, fatigue, idea, letter

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Permalink Reply by MichelleSchwinger on April 14, 2009 at 12:59pm: Dear Dystonia,
I am so sick of you. Really honestly ridiculously sick of you. You have honestly made me wonder if I ever want children and it disgusts me. How the heck would I get through a pregnancy and raising a small child with your presence??? I'd barely last 3 days without my drugs. Could you at least do me the favor of stopping the headaches?

On the other hand, I have learned to slow down. I have become less vain. I've learned how incredibly awesome my husband is. I've met some nice people. I had no idea how much you would change my life since your first signs 4 years ago. I fear the unpredictable nature you have, as well as your ability to sideline me from doing some really awesome things. I feel like you control my life more than I do. I never thought I'd let a doctor put needles in my head, but I'd do almost anything, and haven't heard of anything yet I wouldn't do to rid you from my life. From OUR lives-- my husband, family and friends aren't fans of you either.

However, thanks for giving me the ability to educate people, learn things, and prioritize. I wouldn't cry if you went away before dinner, but you haven't been a total negative in my life. Every day I pray for a cure.

Loathe you,
M; ▶ Reply to This

Permalink Reply by Jnufish on April 14, 2009 at 3:38pm: Dear Dystonia,
GO AWAY!! Take all your crap with you. I have had it up to here with your spasms, pain, headaches, and lack of balance. You can take the shots and all the meds with you. I will not miss waking up with pain everyday, the tremors that sometimes control my head or the jaw spasms that force my mouth open. I won't miss the stares or the looks of pity or concern. I will work a full day joyfully and without meds. I will go fishing instead of to the doctor. I will not have to explain anything to my yoga teacher and will enjoy a full 1-1/2 hour class. My mother, husband and sons will no longer be worried I am over doing or be careful when they hug me. Its this last part I hate the most, people being careful when they hug me.
Sincerely, Michelle; ▶ Reply to This

Permalink Reply by Trudy on April 14, 2009 at 5:26pm: My Dearest Dystonia,

I haven't known you long but I can honestly say your presence in my life has nearly overshadowed the life I thought I was just beginning to live. I refuse to cry "uncle." I refuse to allow you to think for one moment that you have beaten me.

You're a smug SOB but you have greatly underestimated this foe. Come on, I'll take you on... name the sport; baseball, basketball, running... Better yet, let’s play one on one with the game of life. You may have stolen the swiftness of my feet, the agility of my body and my quick reflexes to out maneuver any competitor but you will not defeat me. The greatness of a competitor is not only measured by the deftness of one's physical skills but even more so by the adaptive nature of one's mind.

I resent that you with your stealth like nature so effectively slithered into my life rendering me painfully twisted and helpless. How dare you contort me to such an unrecognizable state that even my sister, someone who has peered into the deepest recesses of my being, even she questioned who she was quickly whisking off to the emergency room. It's not fair. But you don't care about fairness do you? You are concerned only with winning. Beating. Pummeling to the point of submission. And again I decry, I will not, no I will never cry "uncle."

Like so many others before me; the sages I seek out for comfort and for knowledge....like them, I too must humbly bow my head in thanks for the unrequested yet much appreciated blessings you brought when you, without invitation, charged in taking up residence in my quite full life; thank you very much. Yes, I will be forever grateful for the experience of ultimate surrender. Surrender is the most freeing of gifts I have ever unwrapped and embraced. Silly you, in your arrogant stupidity you mistook surrender as giving up. HA! Giving up is giving in, losing. Surrender is turning over in strength and humility -- empowering and unlike you, I am not concerned with winning. I may not like it but I will with civility co-habitate with you. As with any gracious host I will go about the important business of living and loving fearlessly with an occasional patronizing nod of acknowledgment to you; my rather cad of a guest. Unlike other guests who 'pop in' unannounced; I will not require you to pick up after yourself, strip the sheets from the bed or even wash dishes. Since you do possess an ability to move about hidden under the cloak of awareness, what I will require of you however; is to infiltrate the medical and research professions using the same strength you employ on so many causing great discomfort…just once provide the soothing comfort with a cure.

I hope you enjoyed the mint on your pillow.
Signed you maid,
Trudy; ▶ Reply to This

Permalink Reply by RevWagner on April 15, 2009 at 4:57pm: Dear Dystonia,
We have been closer than friends for almost six years. You now control many of the aspects of my life. I resented you when you caused me to be no longer able to drive. I was angry when you took away my ablity to work a job. I was saddend to see the fear on the faces of my little kids when I begain eventing. You have become just as much apart of my life as life itself. You have caught me at weak times wondering if life itself was worth living.
My eight year old daughter asked me last week if I would be able to give her away at her wedding in like 40 years:) I told her that it would be ok. I wish I trully felt it was ok. Every year I am less able to live life.
I have a friend that sticks closer than a brother, (Prov. 18:24) and He has decided that we must walk the path of life together. The great thing is that He has promised to walk with us to. (Heb 13:5) I have met some other people with dystonia and their lives have also been an insperation for me. I wish that I did not have dystonia, BUT if it had not been for dystonia I:
Would not have learned what true faith in God is.
Would not have grown so close to my wife.
Would not have written a Sunday School Cirriculm.
Would not have written four books to help others with chronic illness.
Would not have introduced to Beka, and been inspired by her heart for awareness.
Would not have joined this board and been inpired, and hopefully inspired others.
Although I would rather that we had not met dystonia; I can not help but thank God for loving me so much to let us met. On the days I can not walk, talk, or move because of dystonia; I can be thankful for the family and friends that God has given me. I am so blessed to have dystonia, because I am so blessed by people who love me so much. So until the next attack I bid you good day my dear old friend. RevWagner; ▶ Reply to This

Permalink Reply by BDrake on April 16, 2009 at 9:56am: Dear Dystonia:

I don't know where I want to start. I guess I'll start with all you've taken from me. You decided to come into my life right when I was finally getting on with my life. I'd only been out of a bad marriage for 2yrs when you came knocking on my door. I'd finally been able to get a good job allowing me to take care of myself and children, it gave me such a feeling of self-worth and respect. I was good at what I did and always met and conq. any challenges that came my way. I'd been at this job for a short 3yrs and My husband and I had just bought our very first home and with-in a month....there you were. I was the mother of 3 children (6-4-and 1) and newly married for the second time. I was just starting life over and YOU just had to sneek in and take control of my life...my NEW life... just when I was starting to live it. You've made me have to rethink my whole idea on how to approach life. Everything that was instilled in my youth no longer applies with you around. There's no more being the best at what I do...no more taking care of my responsibilities without help from others. I'm no longer able to stand on my own two feet; instead I'm leaning on everyone else's shoulders.

I will admit you don't show your face everyday anymore, infact lately there have been a few times you've been gone for quite sometime. Why do you insist on playing games with me. Your the worst relationship I've ever been in as far as playing games. Be straight with me..either your here or your not!!! And why must you move around so? Can't you pick a place and stay there? As far as you leaving...I wish you would stay gone! When your gone I get used to being able to do the things I did before you. My family gets used to havig the old mom/wife back then BOOM when we least expect it there you are. I hate how you make me feel as though I use you as a crutch, and because of that I do more than I should just to prove I don't! I hate how because of you I'm so pre-occupied with other people's opinons of me! I hate how I just can't seem to learn to live life with you. Just when I think we're getting along something happens because of you, because of me...maybe we're both to blame...that stirs up the fight again. Why oh why did you come around. That's what bothers me most. Why are you here?!?!? What did I do to cause you to come around? No answers.

Other's have written telling of the lessons they've learned. I cannot say the same. I seem to learn the lessons you teach for only a little while. Long enough to get by...then you remind me again (harsly I must say) that slow and easy, wins this race. You make me feel like a teenager again, telling you what you want to hear to your face but when your back is turned, I do what I want to do. I won't appologize for this though. After all, I am no longer a teenager but an adult and should't have to answer to you!!!! But what about the times I can't figure out what your trying to teach me. What about the times you bend, twist, shake and contort me. What about the times my limbs are swollen, red, cold and painful and I can't figure out why? Why!? Why!? Why!? Why won't you answer me! Why is it I and my family and friends have to listen to you, mold and shape our lives around you, but you and your friends (dr's) won't listen to me? to us?

As I said before though you and I our relationship goes in cycles it's a love hate relationship of sorts. Maybe when we're not fighting I'll be more greatful...but right now...I'm hurt, angry, frustrated....

Til then...
Becky

P.S. Still waiting on you to write back answering all my questions?; ▶ Reply to This

Permalink Reply by Thorns on April 16, 2009 at 12:21pm: Dear Dystonia,
Although there is nothing dear about you, I will call you my monster within, always there to remind me I'm not alone, pulling me this way and causing havic at every turn, always there, ALWAYS.
Always trying to fool me into believing maybe today won't be too bad or maybe you will give me a break, but not a chance, you give me the sutle pull and my shoulder is up around my ear and because it's not the usual hard pulling I don't notice because I've been fooled into believing this pulling isn't so bad.
Always going to bed at night trying to find the sweet spot and just setting in when you give me a pull just to let me know you have'nt gone anywhere.
Always with the pain, OH the pain you see it isn't good enough to just pull but you have to leave a little something in between pulls just be to the monster you are.
Always there from waking to bedtime and I don't dare wake into the night because you will let me know you are still with me, ALWAYS.
Always whether walking, sitting, laying, playing, laughing and even crying you are there, ALWAYS.
Always being the pretender like when I have my botox and giving the big muscle's a break but always pulling the one's not given the injections, the secret one's hidden deep out of range, ALWAYS.
You have brought nothing good to my life, I've always had a good family, good freinds and a good life which I will always have with you in my life, ALWAYS.
Thorns; ▶ Reply to This

Permalink Reply by Jeanie on April 16, 2009 at 9:31pm: Darn Dystonia,
You are the toughest battle i have ever fought to date. You are mean,vicious, a thief and never give me or my muscles a break. My body's muscles are NOT up for sale,lease or auction. They belong to me, yet you act & behave as if you own them. Just when i think you have twisted,jerked,pulled,contacted,rippled and danced on every musle available..you surprise me and find a new one. You are a stalker,laying in wait to attack,a thief who comes again and again to see what else you can take. How dare you !!
Indeed a constant companion,always showing your mark on my forehead with an akward shaped 'V'. No it doesn't stand for victim.I prefer 'Victory'. Everytime i smile,laugh,take pleasure in what i have accomplished in life or take pleasure in what beautiful things life has shown me.. i have won for that moment in time.
I may not not be making big leaps and bounds,but i am moving forward.At times i am not moving due to your controlling nature,but i know it will ease up.You are soo frustrating because there is no stardard protocal on treatment.
I still have hopes & dreams for future events and adventures.You will not take that away from me.I have made adjustments for you in my life,take my meds.. but i don't think there'll be a cure in my lifetime. So do what you must, but i will continue to do what i must do to live. Jeanie; ▶ Reply to This

Permalink Reply by TwisterG on April 17, 2009 at 12:17am: Bekka,

Such an interesting approach! I think we all feel this way at times. Simply overwhelmed by life and then for us here add dystonia ON TOP of that! Let it out!

This forum helps us. It surely helps ME even though I rarely post here. Oh I write, yes I do! My writing is very theraputic I just never get around to sharing it. I do share the details that might matter with my neuro. The mental issues we all face are different for each one of us, we are each unique. Those are harder to put into words.

We are listening to you! You're taking a lot of public crap the rest of us don't have to face. It's 1000x the humiliation we might have to experience in our own world. God bless you!

Just know I'm cheering and praying for you. I hope it helps.

G.; ▶ Reply to This

Permalink Reply by MichelleSchwinger on April 17, 2009 at 12:35am: Wow, what a topic Beka! You've all said the words I didn't know how to say!; ▶ Reply to This

Permalink Reply by beka on April 18, 2009 at 3:28am: Simply go to the www.care4dystonia.org site... you can learn alot of me under the Milestones section...
beka; ▶ Reply to This

Permalink Reply by beka on April 18, 2009 at 3:29am: Thanks for the support... Hugs to everyone...
I just wish I could make dystonia go away for everyone.
beka; ▶ Reply to This

Permalink Reply by Deanna on April 18, 2009 at 9:30pm: I also love to write. I have kept a journal since I was 8 years old. The problem is, the past years my hand writing has gotten so bad I can't even read my own writing. Now when I write, I find myself limited or unable to at all for the cramps in my hands. It makes me angry! The thing that kept me together all my life, though some would question that (ha-ha) is what Dystonia is taking from me too.

Deanna; ▶ Reply to This