What I Truly Want for Christmas as a Person With Dystonia


Dear Santa,

This year, my wish isn’t even for my chronic illnesses and pain to be gone. I can deal with the pain; I’m used to it. I don’t remember what life was like without pain. I wish there were something I could say, do or give my parents to change the current situation with me.

I know that me being so sick destroys our family dynamics. They don’t deserve it. My friends and siblings don’t deserve it. I long for the days before I became chronically ill. It has been a long time since I have seen my parents truly laughing and smiling with pure joy. I can’t even remember the last time the two of them went out to dinner alone or had time to themselves.

You see, there is this movie on Netflix called “Christmas Angel.” If you watch it, you’ll see that there are three types of Christmas wishes: possible, impossible and God. But what I want for my parents is possible — to go to a dinner, see a movie, laugh, enjoy themselves and have a drink or two. What I want for my brother, Evan, is also possible — to get his EMT certification, do well in school, play lacrosse and ski his heart out. What I want for Christmas, I believe only God can give.

Meghan Bayer.2-001

People keep showering me with all these stuffed animals, movies and gifts. While I appreciate their thoughtfulness, material goods don’t mean anything to me.

I don’t need the latest in technology and fashion to be happy. All I truly want is to not have to burden my parents with my life, my struggles and my poor behavior/attitude as a result of my loss of independence.

I haven’t been the same since coming home from the hospital recently, because I have been chained to the house and only leave when I have to go somewhere. I enjoy a constantly changing environment (even though it’s tiring), as it keeps me distracted, makes me happier and, ironically, improves my energy levels.

This basically means I need my feet flat and usable with a stable left ankle. Because my dystonia is so severe right now, my feet are badly twisted to the point of needing a wheelchair.

I know my parents will always insist I’m not a burden to them, because they chose to have me, but the reality is that I feel like I’m single-handedly tearing my family apart. I have to ask for so much stuff like I’m a little kid. “Mom, may I have a glass of water?” “Dad, may I have my medication?” I can’t even really help out with our five dogs much. My parents bring me my clothes. They drive me everywhere, because I can’t drive myself anymore. They push a ridiculously heavy wheelchair through our gravel driveway. I can’t even begin to imagine the medical bills we have amassed over the years from hospitalizations, co-pays and medications. I believe this situation is hurting our family, even if no one else will admit it.

Meghan Bayer.3-002

With all of this in mind, I want it to be made known that I don’t want anything material for Christmas. Anything that has already been purchased can be returned, and the money can be used for home renovations, medical bills, education or charity.

The only thing I truly want is my family back. In my mind, it’s about my family, not about me. Remember life’s big rules: Life is not easy, and it’s not about you. Well, it’s not about me. I want my family to be happy again, because I don’t think the four people living under this roof are truly happy. I won’t be at peace until that happens. Unfortunately — and I’m embarrassed to admit this — I’m completely and totally jealous of all the people living in beautiful, finished homes with their perfect little healthy families. It’s wrong of me, but it is true.

So for Christmas, all the little kid wanted in the famous holiday song was his two front teeth, and all I want for Christmas are two flat feet. Those two flat feet will pump the faith, joy and spirit of the season back into my family.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or illness during the holiday season. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Find this story helpful? Share it with someone you care about.


Related to Dystonia

When a Doctor Gave Me More Than a Dystonia Diagnosis for My Sons

He was younger than I imagined. Maybe 40… tops. He was tall and attractive with light brown hair and glasses. He was Yale educated with a B.Sc, an M.Sc, a PhD and an MD. My research revealed that he’s a pioneer in the field of neurogenetics, and our pediatric neurologist told me he’s the most [...]
Michelle smiling outside

To the Bathroom Attendant Who Accused Me of Not Having a Disability

Dear Theater Bathroom Attendant, With all of the changes that have taken place in your life the past week, I’m positive you remember me. If not, let me refresh your memory. Last weekend, I made the decision to drive to downtown Minneapolis with the hope of buying a rush ticket to see the Broadway musical [...]

The 'Helpful' Comments About My Disorder That Feel Like Judgments

While I truly believe that people have good intentions, their opinions and comments often miss the mark when it comes to what we experience living with dystonia. Some of the many things I’ve heard include: “It’s all in your head.” “You’re just having a bad day.” “Everybody gets tired.” “You’re just depressed.” “You’ll just have [...]

17 Things People Who Live With Dystonia Wish Others Understood

Dystonia is a condition characterized by persistent or intermittent muscle contractions causing abnormal movements or postures. Multiple forms of dystonia exist, and dozens of diseases and conditions may include dystonia as a symptom. It’s a complex condition with no cure or known cause, but it affects around 300,000 people in the United States and Canada. The Mighty [...]