A year ago today I pressed the publish button on my newly created, blissfully pink WordPress site, a simple motion that shook my very core with far greater velocity than Dystonia. I’d embraced a new self-view removing shame from my equation, embarking upon an exploration of alien territories within myself and new roadmaps to human understanding.
My blog marked the end of one odyssey and the beginning of another, perhaps even more transformative than the first. I set out with lofty goals – no less than unburdening my soul, sharing deeply felt insights and describing my strange disorder without it sounding like a virulent medical horror, starting with the post pinned to the top of this site. I ventured into foreign lands endlessly more foreboding than the manipulative villain lurking in my brain. I’ve tackled my deepest nightmares of how I might present to others, wildly misplaced self-phobias, misinformed perceptions of disability, even notions of sexuality.
In the span of a year, I’ve hurled myself into relationships I never could have imagined, discovering like-minded people who once manifested as unintelligible to me as Dystonia previously stood to many of you. Indeed, I’ve introduced some of my new friends on the pages of this site, individuals who’ve helped me see myself in a new light and shine like multiple suns on my brightly lit world. I stepped beyond the human threshold, which often paints a wholly uninformative picture, and with a lingering look found overwhelming commonality that speaks to our shared spirituality. Notwithstanding an abundance of horrid descriptives I’d love to banish from the dictionary, chronic illness and disability can be a curtain masking healthy and entirely “able” human souls.
As my own personal muse, I strive for optimism to guide my way. “Dystonia Muse” is as much a compilation of my finest aspirations and intentions – forever inspiring me to walk forward – as a hard and long-earned life lesson. Everyone has an internal muse, an ideal self we formulate through sweat, tears and tenderness and strive to hold, the person to whom we ever inch closer as we journey through our lives, the best of our hopes and desires, an amalgamation of our loftiest dreams fueling us to press onwards.
Venture beyond the surface differences that separate us, look inside yourself, brave your singular waters, seek profound truths, and you can begin your own personal expedition to discover the infinitely understandable human story and boundless reach of your heart.
Pamela Sloate – Decidedly “OUT” of the Dystonia closet!
Post Script: Here’s a warm thank you to new friends who’ve made a world of difference in my life: Marissa, Robyn, Rhiann, Peggy, Chris, Carrie, Lisa, Andrea, Rebecca, Shannan, Juliet, Patty, Jan, Denise, Allison, Sarah, Ed, Arthur, Divanicio, Lars, Franz, Robert, Gohei, Arash, Bruce, Pat B., Nick, Gary. I mustn’t forget Duncan and a handful of “Aussies” on Twitter – Jacinta, Tara, Francine, Jane, Ray, Archie, and Larry – who make “chirping” a delight!
Congratulations!! So proud for you hitting your milestone!
Hey Juliet, I’m thrilled we met and proud to have contributed to your journey. The real milestone is accepting ourselves for who we are. Sending warm wishes your way. -Pam-
Congratulations on the first year of your blog 🙂 x
To be honest, having only known you for a couple of months on here, after reading your blog, I thought you must have been doing it for longer.
Your writing is so accomplished, informative and at times humorous, makes it a pleasure to read.
Great and beautiful writing from a great and beautiful person. Long may you continue to write to inform and entertain.
Keep smiling always 🙂 Your smile will enlighten those who you may not even know and brighten their day.
Hi Nick, Thank you kindly sir, I’m truly touched by your words. Connecting with people through social media has been one of the unexpected benefits of this site and I look forward to our continued friendship. Life certainly is a journey and we never know where it will lead. xxx -Pam-
Wow, time flies! Happy Anniversary Pam!!!
Hey Richard, Time sure does fly. I so appreciate all your support. Not everyone takes the time to make such gestures. Friendship is a beautiful thing and yours means the world to me. -Pam-
Congratulations! I really liked your nice words and thanks for your consideration to me. I feel happy to have you as a friend and I think we are brave to show our face and our story. A great and loving hug!
Divanicio, It was a blessing to meet you and I’ll always remember how you were the first person to join my Facebook Group, Dystonia BloggerMania! Awareness is a team sport and we have a great group blogging our hearts out. Looking forward to all the unexpected things to come. -Pamela-
Congratulations on your first year in the Blogipelago and as Queen of New York. It has been a joy to meet you. Just watch out for Larry and his twittering! *cheekygrin*
Archie aka King Of Australia, This NYC lady can handle you Australian blokes (lol)! And I happen to be a woman who loves an accent! Thrilled to receive your comment, haven’t you made my Saturday! Jacinta will forever be in my good graces for introducing me to the lot of you. -Pamela-
Congratulations, Pamela! I always enjoy reading your thoughtful, sometimes humorous, often profound musings.
Post Script: How wonderful to have made so many new friends through your own reaching out…….
Susan, My blog has been a true adventure and has enabled me to make so many human connections. Who knows what’s in store, I look forward to the trip. -Pam-
Brava my friend – you are amazing. I remember the first time I stumbled upon your words here … love at first sight! I am so blessed to be connected to you here. You inspire and teach in soooo many ways. Love and Light to you Pam – keep shining~~ Love, Robyn
Robyn Dearest, It’s been a true blessing to meet you through our writing and we’ve stumbled upon a beautiful soul connection. Your words never cease to inspire me as you find your way through what must be an unbelievably difficult journey. Please know that I’m thinking of you in particular right now and hoping for the very best outcome you could possibly receive. You deserve all the sunshine life has to offer. Your beautiful poetry and photography are beacons of light for so many. Robyn, you certainly make my world a better place. xx -Pamela-
Thank you precious friend ~ so much love and huge HUGS Pam. Means so much ~ x Robyn
Robyn, You are a lovely human being in ever possible way and it’s been my absolute pleasure to connect with you. Sending love and hugs to you as well. xxoo -Pamela-
You’re the best thing that could come from this. I wish you didn’t have dystonia. But I don’t wish this on anything. You’re a brilliant flower.
Mike, Thank you, my friend. Always wonderful to see you here. Your support means the world to me and I’m thrilled to have met you on my blogging journey. Especially with Dystonia, we never know what’s to come. Let’s make the most of life’s adventures. xxx -Pamela-
I don’t know exactly how long I have been following your Muses Pamela, but I also thought it had been going longer. I realise now that I may have been following them from the start or at least almost the start. You are such a terrific writer and obviously put so much work into it that I for one am deeply impressed.
Murray, Thank you so much for that lovely comment, for all the comments, always a delight. It’s hard to believe I started my musings with trepidation, now sharing is as easy as pressing that button! This blog is my baby and I’m proud of how far she’s come, couldn’t have done it without support from friends like you! Best to you. -Pamela-
when I met you, because I was looking for information on the American FB pages, I am pleased to hear your happy and at the same time humorous writing at a very factual topic. Great information you have also distributed.
A big thank you for this great first year and congratulations on your blog.
It would be wonderful if I should continue to read so humorous about your life and, above all, about your experiences with our certainly not as positive disease in the future.
A big hug for you. You’ve earned it.
Greetings from Germany
PS: I write from the 2013 Congress of the German Dystonia Society.
als ich Dich kennen lernte, weil ich Informationen auf den amerikanischen FB-Seiten suchte, habe ich mich gefreut über Deine frohe und gleichzeitig humorvolle Schreibweise zu einem überaus sachlichen Thema. Tolle Informationen hast Du auch verteilt.
Ein großes Danke für dieses tolle erste Jahr und herzlichen Glückwunsch zu Deinem Blog.
Es wäre wunderbar, wenn ich in Zukunft weiter so humorvoll über Dein Leben und vor allen Dingen auch über Deine Erfahrungen mit unserer sicherlich nicht so positiven Krankheit lesen dürfte.
Eine große Umarmung für Dich. Du hast es verdient.
Liebe Grüße aus Deutschland
PS: Ich schreibe von dem Kongress 2013 der Deutschen Dystonie Gesellschaft.
Franz, Thank you for such a lovely comment. How appropriate that you’re writing to me from a dystonia conference. I so admire all your hard work to inform and support others. It’s been a joy to correspond with you and learn your point of view. I look forward to our continued friendship as we move forward with life. Sending you my warmest wishes. -Pamela-
Congratulations Pam, we can beat this and very well. Reaching out and unburdening is sooo therapeutic and there are loads out there who are positively inspired by you. Keep it up xoxo
Thank you Ryan, This blog has been my blessing. My writing is as therapeutic as it is transformative. In so many ways, I’m a completely different person than the one who started out on this journey and I’ve taken myself to so many surprising places. I could never have imagined putting my dystonia out there when I was younger. Indeed, I couldn’t have done this a few years ago. I derive tremendous hope from the human capacity for change. -Pamela-
Reblogged this on redzhis and commented:
“In the ladder of lives we are given to climb, each life counts for only a second of time. The only one thing to do in that brief little space is to make the world glad that we ran the race.” – E.W Wilcox
Ryan, Thank you so much for the reblog and that beautiful quote. You have a wonderful way with words and clearly see life’s glass as “half full,” perhaps even overflowing with water! I believe life is best experienced with our hearts and I try to find the good in people. -Pamela-
You give me hope. I just started my blog. I have Lyme disease and Fibromyalgia.
Kerry, I’m just back from a trip to your blog, which is fantastic. You’ve taken that first important step on a new journey and you never know where it will lead. My site addresses so much more than movement disorder and I’m delighted you were able to connect with something in my writing. That’s what blogging is all about. We all must hold hope, otherwise what’s the point of being here. -Pamela-
Congratulations I always enjoy reading your good ideas.
Thank you Donald, I can always count on you for a comment and cherish each and every one. I so value all of my readers and it’s been a pleasure to get to know you. Hope you’re having a wonderful summer. -Pamela-
Carrie, Aren’t you a dear! The past year has introduced me to the wonderful world of health activism and I consider myself fortunate to have met so many dedicated and caring souls with the worthiest intentions. Thank you for all your support as I’ve sought to spread awareness of Dystonia and dispel misperceptions of disability and chronic illness. -Pamela-
I’m extremely proud of all the steps that you’ve taken to make this possible! You’ve opened your heart & soul to so many of us that it has shown the skills that you have for speaking to others, helping those in times of terror who were unable to speak! Be gracious to take time to help someome who is in sure, determined but needs a lift! You’ve gone to benefits and raised lots of monies for those in need! I’m proud to call you a friend in the Dystonia Community!! Love, Denise
Hey Denise, Thank you for the lovely words. I’m so grateful we found each other through the Dystonia Advocacy Network and it was an utter pleasure to serve on Team NY with you this past Spring in DC. You do so much for the Dystonia community yourself – your advocacy, that wonderful Facebook group providing a forum for people to share their stories and connect. Be proud of your big, bold and beautiful heart. -Pam-
Congratulations on your anniversary!
With appreciation and admiration,
Janet, Thank you for your wishes, which mean more than I can say. As you well know, my parents have contributed so much to the Dystonia community and it’s my privilege and pleasure to be able to give back myself through this blog, my critical efforts as a Dystonia advocate, my social media activities to generate awareness and support others, and my involvement with my local support group. It’s been one short year of blogging but 40+ years of Dystonia, quite the wild ride and a personal revolution. I want to take this opportunity to express my utter appreciation for all your tireless work. Without organizations like the Dystonia Medical Research Foundation funding important research, supporting patients and building awareness – generating hope for so many of us – I don’t know where we’d be. Thank you from the bottom of my heart for all that you do. -Pamela-
Congratulations!! And thank you for sharing. I think at the heart of your posts is exactly that- so many people share the same -everything- to me the most identifiable was “shame”. But it is a plethora-of feelings, experiences, emotions, challenges- so somehow herding these together and finding a winsome way to express something so all-involving is an accomplishment to be mighty proud of. Thank you!
Hello, Lovely to hear from you again. You are absolutely on point about the breadth and diversity of the experience of Dystonia within each of us. And such turmoil. My thoughts and feelings definitely evolved over time, with a culmination of self-insight resulting in this site. Though it wasn’t easy to share in the very beginning, I’ve come further than I ever could have imagined and it’s my deepest hope that my writing resonates with others. Thank you for reading and expressing your support. -Pamela-
I have had cervical dystonia for 27 years. it took almost a year to get diagnosed, as back then Dr’s were not familiar with dystonia. it won’t kill you, just mess up your life enough to make sure you know want to escape it. I wish more people knew about this disease. I have had to explain it so many times, I would rather just hand someone a brochure. saves a long, complicated explanation.
Gail, So nice to hear from you. You’ve had Dystonia for quite a chunk of time and I can completely relate to your situation. Wishing more people knew about this disease is partially what motivated me to create this site. I’m thrilled to see the Dystonia blogs populating cyberspace and telling our collective story. Raising awareness makes coping easier for all of us. Wishing the best for you. -Pamela-