A Letter to Myself on the ‘New Me’ After My Generalized Dystonia Diagnosis


It’s been almost a year since you walked into the neurologist’s office and got a confirmation of your allergist’s suspicion that you have cervical dystonia. That was a real blow, but it was a relief to have a diagnosis, and the treatment has helped.

But today is going to be different. They’re going to hit you with something you never expected — your cervical dystonia has now developed into generalized dystonia, and over the coming months, it will spread to your arms, hands, back, legs and feet.

It’s going to get really, really rough. You’ll be practically bedridden, in chronic pain and with zero energy. Yet you’ll still find the strength to fight to get on disability. It will take years and time in court, but you’ll get it. You will have to fight even more to wait to get what could change your life: deep brain stimulation (DBS) surgery.

Along the way, you’ll learn a lot. Your friends and family still love you — and not only that, they understand your limitations, or try to as much as they can. They show interest in how you are feeling, what you need and what this disease means.

Your biggest fight will be against yourself. You’ll have to struggle with the shame of not being able to do the smallest of chores without needing to rest for hours afterward. You’ll wonder if people are staring at you because you have a limp and your head leans to the right, skewing both your balance and your perspective.

There’s going to be a long period of time when digesting the fact that dystonia is a forever diagnosis is a daily battle. It will constantly be in the back of your mind. Several times a day, your stomach will clench as you struggle to do something you used to do without a thought, like brush your teeth or bring a spoon to your mouth. It will remind you that this is the “new you.”

kelley storm
Kelley.

But your biggest weapon will be your sense of humor. You’ll joke about the fact that anybody on your left could sneak up on you, and that your limp is just “swagger.” You’ll brag to your friends about how one day you’re going to be a cyborg and they won’t. They’ll make helpful suggestions like adding laser eyes when you get your surgery, and you’ll laugh, knowing they’re laughing with you and not at you, and that gives you strength.

You will get your DBS surgery, but well before that happens, you’ll realize something extraordinary — that you actually have more self-esteem than you’ve ever had in your life. I’m sure on this day you’re wondering how that is possible.

It’s because you’ll realize you’re stronger than you ever thought you were. You’ll see that your husband and your friends actually admire that strength, and you’ll accept it instead of shrugging it off like you used to do with compliments. You’ll go out in public and hold your head high (well, as high as you can — don’t strain yourself!).

No matter what happens after your DBS surgery, you’ll realize you can do this. In fact, you can handle anything life throws at you. Today may feel like the most devastating day of your life, but it will be the first day in a long journey of discovering you’re way more awesome than you ever thought you were.

Oh yeah, and you’ll shave your head, after having hair reaching down to your waist for your entire life. And you’ll do it with pride, too, because it’s the symbol of a new beginning. How unbelievable is that?

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