Here is the link to to an article that got published today by The Mighty, which is a company that works with social media to talk about disablilities in a new light. I’m will include the actual unedited version below. Of course, check out the link if you can because you get to see a photo of my sister, which for some reason I can’t find to publish here) along with my scribbles.
An open letter from a Young Women with 11 disabilities: What I wished you knew
My name is Whitney Jory. I’m 26. I happen to have a total of 11 disabilities; all of them chronic. Wait. That word ‘chronic’. What does that even mean you might be thinking. ‘Chronic’ means that I will likely always have them. When I hear someone say to “feel better” I just want to shake them and remind them that this is how it is. Yes, I agree my Cervical Dystonia, a neurological movement disorder that causes constant spasms in my neck, shoulders, back, throat, face, chest, and a tremor throughout my body, and my severe Chronic, oops, there is that word again, Pain Syndrome could, and will, get better if I’m lucky. You see, I was born with Cervical Dystonia. You’d damn well better believe that I have been doing everything in my power to get better since I was first diagnosed at the age of 18.
There are so many things even my closest loved ones don’t know about what it’s like for me to have Cervical Dystonia, Chronic Pain and all my other disabilities. I wish they knew how hard I have to fight every single day for my life. My Chronic Pain went severely under treated for 6 years. Because of those experiences and the culmination of both physical and emotional pain, there have been so many instances where I just wanted to disappear. I wanted to go away and end my life. I’m extremely thankful that I’m an optimist and have so much strength because it helped me get through the darkest moments. When I start to think like this, I’m blessed enough to be able to call my extremely supportive boyfriend, John, at all hours of the night and talk it through. I’m not ashamed to admit that I’ve called my fair share of suicide hotlines. I’ve also make myself list 10 reasons why I love life in my journal. It makes me remember that my life is worth fighting for, even though I have to push against all odds.
I’m in severe and constant pain if I’m awake, even with medications. I’m usually not in pain while I’m asleep (why am I not asleep now?), although I’ve been through many sleepless nights where my pain prevented me from falling asleep or woke me up at all hours.
Social functions have become rather difficult. I’ve cried my way through many dinners in public simply because I don’t feel good. No place is off-limits when it comes to crying. I’m at the point where I don’t even need tissue. I’ve had a waiter actually call me a “cry baby” (what a jerk, I know). I turned this negative comment into a positive educational moment by telling him about my disabilities. He quickly apologized. I’ve been told by a friend that others get uncomfortable when I discuss my medical conditions. So, I go to social functions and feel invisible because no one can relate. I wish I could talk about by health without making others feel uncomfortable. I’ve had someone compare her thyroid condition to my 11 disabilities. 11! I’m not saying a thyroid condition isn’t serious, but come on?
I wish that I had more support from my family, friends, my community, the public, and the world. Most don’t even know what Cervical Dystonia is. My ultimate goal in life is to leave a world where the word “Dystonia” is a commonly understood one, not one mistaken for a country. I would love to see a cure for both Dystonia and Chronic Pain. My dream would be to be on The Ellen DeGeneres Show in order to tell her viewers about Dystonia. I don’t understand why some friends still don’t know what ‘Cervical Dystonia’ is. You know me, I gave you a card explaining it (with a link!!), I explained it during our conversation, and don’t you know what Google is?
Some things I wished my loved ones would do are surprise me with flowers (something pink and pretty like peonies) or a card when I’m having a pain spike or recovering from a procedure. Things my friends could do to show their support is to come over when I’m recovering, bring Thai (pumpkin curry and brown rice, please), and binge watch tv shows. Some great little things loved ones could do include sending texts of support, sharing my posts about Dystonia on Facebook, or even give me a big hug (nope, I’m not breakable) when they see me. One huge thing loved ones could do is to help me organize a fundraiser to benefit the Dystonia Medical Research Foundation.
Chocolate is also a big comfort food; I’ve been known to polish off a bar or two on epic pain days. I found this chocolate with brown butter recently…I’ll just take a case of those bars. That should last me. In all seriousness, I wish that my friends would make more time to understand what I’m going through. I wish my loved ones would learn about Cervical Dystonia and other conditions and ask me questions to try to understand how my conditions affect me. I wish they would accommodate me into their busy schedules. So many of my loved ones make insensitive comments or are too busy to stop and listen. Flowers, curry, cards, chocolate, and texts are all nice, but having a person in my life to listen to me and understand even 1% what I go through is invaluable. Scratch that, I’ll take the peonies, chocolate and your undivided attention. A girl can dream, right?
Michael J. Fox has Dystonia and Parkinson’s. No, I’m not making this up. They are both movement disorders. If you don’t want to Google ‘Cervical Dystonia’, I’ll save you the trouble and put this link to the Dystonia Medical Research Foundation (DMRF) website: https://www.dystonia-foundation.org/what-is-dystonia.
You know what, why don’t you Google “invisible disabilities” while your at it.
Whitney Jory lives in Northern California. She is an advocate for all patients, mainly for those afflicted with Dystonia. She founded and co-leads the San Francisco Bay Area Dystonia Support group with Amy Herrington with support from the Dystonia Medical Research Foundation (DMRF). Whitney’s favorite day consists of wonderful design, fancy coffee, even fancier chocolate, a binge worthy show, and well-managed pain spent with her lovely boyfriend of 5 years John Berry, who lives in Austin, Texas. Whitney also enjoys reading about interior design and public health. Her favorite show is a tie between Nurse Jackie and Cold Justice.
Donations can be made in Whitney’s honor to the Dystonia Medical Research Foundation (DMRF) to help fund research to discover new treatments and eventually find a cure by going to: https://www.dystonia-foundation.org/donate