Why I'm Talking About Chronic Pain and Cerebral Palsy

“Life is pain, highness. Anyone who says differently is selling something.” -William Goldman, “The Princess Bride”

Much of my life revolves around the concept of pain. As human beings, we all experience pain in our lives, whether physical or emotional. In this way, we are alike. There are those who stuff their pain, those who wear their pain like a badge, and those somewhere in between. I used to think I was someone who wore pain like a badge. And then I realized: I was born into pain. I had months of capillary blood draws, IVs and treatments as a premature infant. I know I experienced pain in my earliest moments. I had years of falls, injuries, therapies and muscle pain before I even knew how to express what pain was. In this way, we may be very different from each other.

I have pain every day, and hiding my response to it from those around me is my ultimate goal. But imagine for a moment if you had something that was a part of your entire existence and you could never talk about it for fear of looking like a hypochondriac or a Debbie Downer. Imagine you went to work every day and yet could never talk about work stuff to anyone. Ever. Imagine if you were dealing with regular work stuff and then things got intense at work, and still you could not talk about it. And then you realized that by sharing your life, even the bad stuff at work, allowed you to keep putting one foot in front of the other; showing up when everything inside you was saying, “Quit.” This is chronic pain for me.

I try to focus on the positive, which I believe is very important when living with a disability and chronic pain. That being said, some days (or weeks) I have to let it out. I have to share the reality of my life with people around me. Thankfully, I have had a huge amount of support from people around me. I have also had people in my life walk away because my pain was too much for them to handle. And to that I say, “it’s good to know your limits and maybe walking away was the best thing for both of us.”

I think positive thoughts only get us so far. I have probably done more “positive therapies” than you can even think of. If it’s out there, chances are I have done it. So please don’t ask me “Have you tried (technique, therapy, exercise, etc.)?” Because unlike you, I live with my disability every single solitary day, have thought about it far more than you have, and have seen more practitioners in the first four years of my life than you probably have in your entire existence.

As someone who cares about me, things you can do to support me are phone calls or texts (which may go unanswered and it doesn’t mean I don’t love you), responses to my social media posts that are validating and supportive, visiting or scheduling time to spend together, and letting me know that even though I may have to cancel or reschedule, you recognize it’s not about you. It’s because I am hurting so badly that this extrovert who loves parties and get-togethers has to decline because standing or sitting is impossible.

This brings me to another aspect of my disability: Falling and the Moro reflex. Having cerebral palsy (spastic diplegia) is not just about my legs not working exactly like yours. There is an aspect of CP that is hard-wired into the area of the brain that has been damaged. There is a reflex that newborns have called the “startle reflex,” known medically as the Moro reflex. In people with CP, that reflex never shuts off as it does in people without CP. So when I hear a loud noise, or get surprised by something, I jump figuratively through the roof. This reflex also contributes to a heightened level of anxiety — all the time. This causes me to have anxiety when I am in large groups of people, or walking in public without a mobility aid (AKA something to let other people know I am not as stable as I look).

This fear of falling is very real and very anxiety-provoking. Between January 2015 and July 2017, I had a total of five falls. Amazingly enough, that number is down from my year of most falls, 2009, when I fell seven times in three weeks. So again, this girl who loves parties, people and being out in public may have to decline because the risk of falling is real.

One of the most difficult challenges for me is that I don’t feel “disabled.” I live in the grey area of “you don’t look disabled” and “I would have never known you have CP” as well as my personal favorite from a doctor, “You don’t have CP. You’re not disabled enough.” But I can’t do basic tasks without considering my pain level, such as cleaning house without killing my body, working a full shift at work, walking the dogs, or having sex with my spouse without thinking about how much of a toll it takes. Can I do this particular activity today or does it have to wait until I have a day off of work so I can spend the day in bed recovering? These are things people with disabilities and chronic pain think about every single day. When I hear, “You’re such an inspiration!” I throw up a little bit in my mouth. I feel it’s a more polite way of saying, “Wow, I’m glad I’m not you.”

The internet and social media have allowed us as a society to connect as never before. I have also learned through my experiences in real life as well through Internet research that there are virtually no medical studies on aging and cerebral palsy. Even support groups like United Cerebral Palsy and Cerebral Palsy Foundation tend to focus on kids with CP. Once you’re 21 or older it’s like you no longer exist. Google “cerebral palsy” and see what comes up. I bet it’s 99.9 percent articles on kids. And the “articles” on adults are mainly blog posts of other adults with CP searching for answers.

According to medical research, CP is not a progressive disorder. Meaning my brain damage will not change. But living in this body for 45 years has taught me that the effects of CP are progressive. Things that affect other non-CP aging individuals like arthritis and muscle atrophy tend to affect people with CP more rapidly and at an earlier age. They are also more difficult to deal with in a body with spasticity.

The falls I experienced caused me to have emergency spinal cord compression twice (at age 29 and age 35) and because of these spinal cord injuries, I have chronic problems with my nerve impulses, blood pressure and pulse, as well as pain, lack of motion in my neck and difficulties with my arms that were not there prior to surgery. That being said, give me pain over paralysis any day of the week. My point in sharing this is that sometimes the choice of someone who has a chronic disability is between rough or hellish. I’d pick rough, given those two options. But I’d much rather pick something other than rough or hellish, like cake-walk or rainbows and butterflies.

So, if you see me with my cane, and I’m out of the house, chances are I’m doing pretty OK. If you see me gripping my husband’s hand or arm, maybe it’s a rough moment. If you see me with my walker, know that I’m doing good just to be out of the house. If I’m apologetically cancelling on you at the last minute, know that I’m probably at home crying, wishing I could throw an impromptu party at my house because I hate having to cancel or not be around my friends just because my body is not cooperating. But chances are I’m thinking about how much I’ll be judged for my messy house that needs a new paint job, wallpaper torn out, new window coverings, a backyard that needs a total makeover, and four pets that have to greet every new visitor like they are their best friend. And throw in that I can’t do most of the fix-it things that you do without even thinking about it, so I don’t have many guests over to my house.

But those are my hang-ups and anxieties. We all have them. We all have things we wish we could change. In that way we are alike. People with disabilities are not unlike you. We all have things we wish we could change. We all have times when we’re feeling not 100 percent. But for those of us in the land of “grey disability,” where our disability seems invisible most of the time, we can struggle to figure out where to fit in, even at my age. And now, as I write this during a recovery process that I hope will be short-lived, I am hopeful my land of “grey disability” becomes less grey in the coming days.

This article originally appeared on Order Out of Chaos.

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Thinkstock photo by Ambelino.