Muscular dystrophy is a part of me, but it does not have me
by DAVID YOUNGER, PhD
I was diagnosed with FSHD when I was about four, at the same time my mother and grandmother were diagnosed. The only symptoms I had at that point were that I slept with my eyes partially closed and a slight winging of my shoulder blades, but I was able to play sports like baseball, hockey, and tennis, and I was able to pretend that this mysterious illness was not my own.
I continued to play competitive sports throughout high school, but at the same time, I failed the New York State physical education examination because I was not able to do the required number of push-ups and sit-ups. I didn’t tell my parents, and I didn’t tell the gym teacher why it was so difficult for me.
Fast forward five years, and I remember not being able to do the pommel horse in gymnastics and then staying afterwards to do some ridiculous self-effacing routine where I was doing half-baked somersaults around the room and telling a joke after each one like some sort of circus act. But I didn’t say a thing to anyone.
It was a scarlet letter that I tried so desperately to hide. The hiding became automatic. Don’t sit near the stacking chairs so I won’t be asked to pick one up if someone needs it. Don’t try to put a bag on the overhead rack on the train or the plane. Don’t do a bench press or a push-up. Only fall for the girls who are already in relationships or who are unattainable.
It wasn’t until my senior year in college that I finally told my best friends. It felt like I was letting them into a place that was so sacred and vulnerable. They were inside my skin, where a little poke or a prod could cause so much damage.
I remember going for my first hike that year with my three closest friends. It was a real struggle for me. I was totally wiped out when we got to the top. We had the choice of going down the same way or going down a much easier path that would have taken a bit longer. When I said I needed to go down the easier path, one of my friends was disappointed and said he was going the other way.
Granted, we were young, and the MD was not so obvious, but he knew that it was tough for me, and it felt so wounding. “Is that what will happen when I let people in?” I thought. They won’t care? They won’t believe me? I’ll be a handicap.
More symptoms started to manifest in my mid-20s. It was becoming more difficult to turn a blind eye to this disease, and more of an effort to hide it from others. That’s when I started therapy. My consciousness was changing alongside my body.
In our daily lives, we are inundated with images of beautiful people and strong, healthy bodies, and we consistently encounter places and situations that are not accessible like subways, restaurants, and homes.
We inevitably internalize the implicit but certainly far from subtle attitude that we are not wanted, we are not attractive, and we are not important enough to make an effort for. The sighs and eye-rolling as the bus driver lowers the ramp for the man in the wheelchair because it’s interrupting the commute, the heavy doors too difficult to open, the steps, the fast pace can leave us feeling alienated, outcast, shamed, angry, rejected, and voiceless. There are many who struggle with these issues.
So what do we do with all of these feelings?
Disability or no disability, we are constantly measuring if we belong. The internalized feelings and experiences that I just referred to can turn into fixed beliefs about ourselves, and expectations that one will be rejected, shortchanged, and deprived.
It’s affirming in a weird sort of way. This is who I am. This is what will happen. I know what to expect.
Stepping out of this fit can be daunting.
I have seen in my own personal work and in my work with others how our identities can transform, and that is empowering and life-affirming.
The more you think and feel certain things, the more you behave in certain ways, the more your attitudes and beliefs solidify, so much so that you don’t even have to think.
If most of what you think and feel is based on your past experiences and habitual ways of thinking, feeling and being, then your future is already written by your past.
To step out of the habit of being yourself is to step into the present moment, commit to cultivating awareness of these habits, asking yourself what you want, who you want to be, and awakening to the responsibility of creating a new present and a new future that is not just repeating the past. This means to be the change you want before it happens.
Let’s take an example of a negative belief based on past experiences, like: “I’ll never get what I want.”
This is a belief that has developed over time, and it has its associated thoughts, emotions, and behaviors. There’s even a vigilant little warrior inside you who is constantly on the lookout for things that will cause you to feel deprived and confirm your belief. This little warrior provides you with the lens with which you see the world. We all have our own lenses that are based on the accumulation of our experiences.
So if you think you will never get what you want, feel deprived, and expect the world to react to you in kind, the chances that external circumstances alone will change that are slim unless you realize and become aware of your habitual ways of thinking, feeling, behaving, and believing that reinforce the same patterns.
But awareness ain’t enough.
For the past 10 years, I have done a lot of work on training my mind, learning to stay present and mindful, and not projecting into the future. That’s half of the equation. But the other half is about asking myself what I want my present and future to be. Seems straightforward, but that involves facing the unknown, letting go of my assumptions, my programming, and creating new programs that will only function and override the old programs if they are more powerful and sophisticated.
The old patterns are comfortable even if they aren’t healthy. They’re familiar, like an old pair of sweatpants. They have a gravitational pull. Those little warriors are like soldiers with PTSD who are always ready to attack or defend because the war is still going on for them.
So, going back to the “I’ll never get what I want” example; you need to identify and understand your reflexive, unconscious, automatic thoughts, feelings, behaviors, and beliefs that reinforce the old programs and challenge them by asking:
Why do you exist?
Where do you come from?
What is your evidence other than what you have contributed to creating?
Are there alternative explanations?
You cannot control what happens in the world, but you do have agency over how you respond and react and relate to what happens. You can only do this if you are aware and if you have firm intentions.
All of what I am talking about―it’s not one and-done kind of stuff. It’s not linear. It’s not expected that once you are aware that you won’t mess up, of course you will. This is about cultivating a different way of being versus a quick-fix solution.
The most powerful single agent of change for my personal growth has been mindfulness.
Jack Kornfield, an American Buddhist psychologist, likened the mind to a puppy that jumps at every little stimulus, so that walking down the street is like a carnival.
Mindfulness is the practice of gently and firmly bringing the puppy back, training the mind so that it is not in control.
I used to be a professional ruminator. I would lie down to sleep, and it was off to the races. I was at the mercy of my mind, and felt like I had absolutely no control.
Mindfulness has enabled me to fall asleep at night and even take naps. It has enabled me to stay present and to be present with my patients.
When I become aware of projecting into the future, I bring myself back to now. It is unbelievable how something so simple can be so transformative.
I teach mindfulness both implicitly and explicitly to my patients. Implicitly, by focusing on the here and now. What just happened? What are you feeling right now? Explicitly, by teaching them meditation and visualizations, breathing exercises, and introducing them to books such as The Miracle of Mindfulness by Thich Nhat Hanh, Mindfulness for Beginners by Jon Kabat-Zinn, and Breaking the Habit of Being Yourself by Joe Dispenza.
One of the most profound things I have learned over time is that there is not an inverse relationship between my happiness and my physical state.
I am happier today than I was 15 years ago, even though my body is much more limited. I try to see it as a spiritual exercise, learning that I am not just my body and I am not just my mind. I am not muscular dystrophy. It is a part of me, but it does not have
I think the moral of the story here is that there are things we can control and things we cannot. We can influence a lot more than we know by training our minds, cultivating awareness, challenging old ways of being and taking an active approach to creating new ones.
Editor’s note: David Younger, PhD, is a clinical psychologist. He shared this presentation at the FSH Society’s Austin member meeting in December 2017.