Life Before Dystonia?

Individuals who encounter health issues later in life tend to reference “before” and “after,” a distinct turning point that irrevocably rocked their world. I can’t remember time before Dystonia. All my experiences have been informed by this condition. I’d welcome the opportunity to meet myself absent Dystonia, me minus the obsessive need to assert control in compensation for uncivilized muscles that refuse to be tamed. I don’t carry a mental list of activities I “miss,” just ones I imagine and my own unique take on the everyday.

17781067_sOne girl told me how much she missed skiing. Based on my singular experience, can’t say I’m sacrificing much. My foot, none to partial to enforced confinement, had its own opinion about staying in that boot. I found the view from the lift engaging until my brother slathered me with tales of fallen horror. Reaching the bottom waxed problematic but I swiftly mastered the art of falling and Dystonia helped my skis form an inverted “V” to slow the pace. Didn’t bother with a second run, the hot chocolate bar held more appeal. I’ll say this, I looked rather svelte in my snowsuit and things weren’t all bad considering the miracle of getting my feet into those boots and myself down the slope.

The sport of movement disorder is an alternate reality of the same world. We’re swept along on a moving sidewalk that doesn’t stop, tiny little “events” filling our days. Whatever the age of onset, I surmise the physical ease of a prior existence becomes blurry for anyone as the years pass, like an inability to remember life before becoming a parent or falling in love. I walked and wrote correctly for my first 8-1/2 years and spoke “more acceptably” for my first 20. These memories entirely evade me.

Chasing lost yesterdays is no way to build our todays. We must strive for the happiness that’s within our grasp and understand that no human being exists without limits. I find tremendous beauty in the hope, optimism, and insight of those who walk the cracks in the pavement and compose their lives into unique poems.


33 responses to “Life Before Dystonia?

  1. that’s beautiful, pam

    • Stephanie Dearest, Thank you for such a lovely compliment. I’m not so sure I ever would have been much of an athlete even without the Dystonia. You well remember what happened when we went canoeing – wish I could blame it on Dystonia, but that was just me! Love ya. -Pam-

  2. I remember life so well before dystonia – it wasn’t a great life but I could run away from nuns who wanted to hit me with various implements. I’ve been asked time and time again what I miss most about not being able to walk: The answer is a simple one – I miss the feel of cold grass under my bare feet.

    It’s more often than not, the simple things in life that matter.

    Best wishes.


    • Paddy, What you said is so true. It’s the simpler things in life that matter most, like a comment on a blog post! Life’s all about finding joy in simple pleasures. I hope you’re finding yours. -Pamela-

  3. Yes, beautiful piece, Pam.
    Although mine is localised Dystonia, so not as bad as some, what I do miss is, playing tennis and snooker
    Lots of Love 🙂 x

    • Nick, Good to see you, my friend. I’m assuming the snooker is something like pool! It’s amazing how we have these decisive dividing lines in our lives where poof, everything changes. We can only hope to explore new interests and make the best of what we’re given. Take care. -Pam-

  4. i completely remember your life BEFORE you ever had dystonia, Pam xo hugs xo

  5. I really enjoyed your reflections. I do not know what/how is living without hand dystonia. When I read your posts I realize you have a lot like me…

    • Hey Divanicio, Always a pleasure when you come visiting. We may have different forms of Dystonia but share so much in our overall experience. This is one crazy ride but what can we do. Keep on blogging and working your magic! -Pamela-

  6. As one with an adult onset dystonia, I, for one, do remember “life before dystonia.” To say that I am not jealous of these memories would be deceitful. But, life goes on, and all you you can do is to stay positive and adapt to reality. Not easy, but never, ever make your mantra “poor, poor, pitiful me.”

    • Ed, It really is amazing how the world can change in a flash. You carry an amazing attitude that is an example for so many. I’m one lucky gal to have found a friend like you. -Pam-

  7. Magnificent!

  8. Pam,

    before my cervikalen dystonia I have done many things, good and also bad, a lot of stress had, has thought, I would not be to be substituted on the work.
    Then with 43 the diagnosis CD. Man, this has me runtergezogen. After a while and good therapy till this day another way of thinking:

    Forwards look. Giving up is no option.
    What I can do with dystonia still everything. I do this, however, with joy.
    I want to live, thus I live.

    I have discovered things in the nature which I have not seen before.

    Thus I can enumerate, actually, further.

    From 43 years it is a new life. I have got involved in the new life and live well with it (with all his heights and depths).

    I see over and over again, Pam that you live also in such a way, as I.
    For the future all the best.

    Lots of love to NY



    vor meiner cervikalen Dystonie habe ich viele Dinge gemacht, gute und auch schlechte, hatte viel Stress, habe gedacht, ich wäre nicht zu ersetzen auf der Arbeit.
    Dann mit 43 die Diagnose CD. Mann, das hat mich runtergezogen. Nach einer Weile und guter Therapie bis heute eine andere Denkweise:

    Nach vorne schauen. Aufgeben ist keine Option.
    Was kann ich mit Dystonie noch alles machen. Das mache ich aber mit Freude.
    Ich will leben, also lebe ich.

    Ich habe Dinge entdeckt in der Natur, die ich vorher nicht gesehen habe.

    So kann ich eigentlich weiter aufzählen.

    Ab 43 Jahren ist es ein neues Leben. Auf das neue Leben habe ich mich eingelassen und lebe gut damit (mit all seinen Höhen und Tiefen).

    Ich sehe immer wieder, Pam, dass Du das auch so lebst, wie ich.
    Für die Zukunft alles Gute.

    Liebe Grüße nach NY


    • Franz, Lovely to hear from you my friend. Your comment is most insightful and right on the mark. We need take the circumstances we’re given and make the most of our lives. I try my best to undertake a positive attitude towards Dystonia because this is it, we don’t get a second chance. I’ve met some incredible people through my activism and it’s made me a better person. I’m thankful for friends like you. -Pamela-

  9. You are a brilliant writer. It’s so engaging and made me smile. I know they say “misery loves company” but I am newly diagnosed and it is a comfort to find someone who has such a bright outlook when I have been down a rough road. You have come out the other side and helped me see that I will too.

    I have been suffering with the pain all of my life (or as long as I can remember anyway) but no one believed me until I had neck surgery. The post surgical physical therapy was making me sick and I realized that “no pain, no gain” did not apply to me. It was still 8 months before I found a Neuro who diagnosed me. Suddenly I started to cry. “I knew what was wrong with you the moment you walked in.” he said. I had been telling the Drs to really look at me for so long, but they just didn’t see. I was in so much pain and trying to hide it because I didn’t want to “look like a wimp.” My “Life Before” was the crazy woman who had been told (since childhood) by family “you better really be sick” whenever I went to the Dr. I was terrified that there really wasn’t anything wrong and that I was subconsciously “doing this for attention.”

    My best friend tells me that he has aches and pains too. He thinks I can take a couple of aspirin and be alright… He tells me that he sees people everyday who are “more disabled” than I am. I asked my Psychologist about that many times because I fely guilty about it and he said that everyone can find someone who is in worse shape. I feel like I will lose my best friend if I don’t “get better” but there is nothing I can do. Your blog made me realize that while there was “life before” I was not “living.” I was terrified all the time because I didn’t know what was wrong with me. Now that I know, I can at least accept that it’s not “all in my head” because that was driving me crazy! Now I know that it’s not my fault.

    • Faye, I’m so glad you found my site and that it’s been of help in any way. Sounds like you’ve been on quite the journey but at least you now know what you’re facing, a first and very important step. Of course, nothing is your fault, this is the lot in life you were given. I’ve had Dystonia for so long, I can’t imagine any other life. There are good days, there are bad days, I make do the best I can and try to take a positive attitude, something I recommend highly. One thing I can tell you is that each case is unique. Different people respond differently to the various treatments. Stress, anxiety and heat all tend to make Dystonia worse. Mine also varies day to day. There are a number of support networks out there, you are not in this alone. Wishing you the best. Please stay in touch. -Pamela-

  10. angela harshbarger

    I was 37 when diagnosed with cervical dystonia. It is now generalized.
    I am forgetting what I used to be like. After 23 years, things change. I am sure they would have if I hadn’t got sick. I do have one thing to be truly thankful for and that is the return of my voice after 3 years of basically not having one. I have another condition that requires oxygen, and for some odd reason, when I started oxygen my voice came back. I know it was spasmodic dysphonia because I had spasms in my throat. The doctor’s say the oxygen should not have had an affect on my speech. It is a true miracle. If my voice leaves tomorrow, I have had over a year of being able to communicate.

    • Angela, It’s a true pleasure to see you here again and I’m thrilled to learn more of your story. Each of us travels a particular path, often a winding one. My speech is among my greatest frustrations so I can well understand how much it means to you to have your voice back. Love your attitude living in the present and appreciating life’s gifts. Sending you the warmest wishes. -Pamela-

  11. Hello Pam I’ve had dystonia for over forty years. I can’t image what it would be like living with out. I do not let dystonia or age get in the way. Keep up the good work.

    • Donald, Wonderful to hear from you. It’s extremely comforting to connect with people who share a similar experience. I find it difficult to imagine life without Dystonia though I’d certainly welcome a cure. Over the years we learn that this world is far from perfect and we must accept certain realities we’re helpless to change. Best to you. -Pamela-

  12. So beautifully expressed Pam ~ this line struck a cord: “We’re swept along on a moving sidewalk that doesn’t stop, tiny little “events” filling our days.”
    I remember hearing your podcast interview back when we first met… and learning you encountered dystonia so early on in life. I so admire your ability to walk those “cracks” in the sidewalk – and live life to the fullest despite the challenge. Skiing is way out for me too – meet you by the fire for hot-chocolate! much love to you dearest friend ~ x Robyn

    • Robyn, I’m just back from a visit to your blog, which is a gift to the world. Everyone who finds your site is a lucky soul, you have an incredible gift. I hold tremendous admiration for your ability to create such utter beauty amid all with which you struggle. Our communications and your support mean the world to me. I’ll happily greet you by the fire for a heart-to-heart dear friend. xx -Pamela-

  13. Dear Pam,

    I can relate to before and after……..I have often thought and felt the same……bad to do this, I believe!!!! Just being grateful for all the things i am capable of doing serves me much better..can’t live in the past……I just wanted to say thanks for your inspiring ways and how very much you assist others in dealing with health issues.

    Sent from my iPad

    • Iris, Thanks for taking the time once again to share your thoughts. While of course we need live in the here and now, it’s human nature to wander to the pastures behind us, particularly when life takes a sharp turn. The more I write, the more I realize how so much of dealing with our health issues is how we think about them and face our daily realities. Keep on moving forward and do your best to enjoy the journey. -Pam-

  14. It’s been 12 years, I hardly remember life before dystonia. I was 17, so it wasn’t like I’d lived a lot. Now it’s just an ingrained part of my life

    • Hello Krisko, Nice to see you here and I’m thrilled you’ve been following my blog. You say it so well, sometimes I can’t imagine not having Dystonia, it’s so much a part of who I am and how I experience the world. BTW, I took a visit to your site and all I can say is that I like a man with an opinion and you certainly have yours. Have a great weekend. -Pamela-

      • I find it much easier to write about non-personal things. I admire your ability to put yourself out there like you do. I can never put that down in writing.

        • There was a time when I never could have put my feelings out there. This blog has been a true journey for me. I started as one person and now I’m someone else. Life can be a surprising ride. Let’s try to enjoy it. -Pamela-

  15. I have been struggling with torticollis for more than forty years. and yes it has changed my life

    • Martin, How well I can relate to your situation, having lived with Dystonia for over 40 years myself. All I can say is hang in there and keep on moving forward. Sending you all my best. -Pamela-

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