When Gravity 'Brings Me Down' Due to My Ehlers-Danlos Syndrome

A little over a year ago, I was struggling up the stairs at my twin sister’s place. Stairs are an obstacle I tend to avoid, and there are many days where it is simply impossible for me to climb them. With my dizziness and depth perception issues, it is hard for me to know where the steps are and I often follow the rises and falls of each step with the tips of my toes, since I can’t fully trust my vision. My body also isn’t very good at knowing where it is in space or in relation to itself, so depending on touch isn’t always entirely reliable either. And, oh boy, I do not want to accidentally miss a step and head toppling to my doom. Each stairway and each day is a different experience, a new challenge, a great unknown full of hidden dangers.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Once, quite some time ago now, I was struck by a bout of unexpected paralysis as I was making my way up the stairs to the kitchen. In a matter of seconds, pins and needles trickled down my spine, followed by a shaking and rolling of my eyes, and then a weakness and accompanying weight in my legs, dragging me down. I used my hands on the railing and the wall to slowly guide myself down to avoid the abrupt drop which was certainly coming. Hugging the stairs like a safety blanket, hoping to high heavens I wouldn’t fall, I did a body scan and realized I had lost all feeling and command of my legs, and could feel it spreading to my left arm. After nearly a half an hour of attempting to find my bearings amongst the pain in my spine and the vertigo and loss of vision surrounding me, I knew this would be a longer episode, and that it wasn’t wise to stay on the stairs. A housemate carried me down to my room in his arms, an ordeal as painful as disorienting.

 

Not every encounter of mine with a flight of stairs ends in such a fashion. Sometimes I’m the stair master, reaching the top so quickly that – once I’ve cleared the danger zone at the top – I break out in a frenzy of jubilation that only Donkey from Shrek can rival. The feeling of success and empowerment and this thankfulness I have for my body and what it can still manage helps me deal with the fatigue from the exertion of forcing myself up the stairs.

For me, going upstairs is far more of a challenge than going down. I can feel my heart pounding in my chest, feel the uncomfortable sensation of blood pooling in my feet and sense my head going all light and floaty, all while my hips, knees, ankles, and feet scream their opposition by sending pain signals and threatening to dislocate. Going down doesn’t cause the same kind of stress on my heart, and except for on extremely high dizzy days or pain days, I try to go down them as practice – I just have to be super careful not to dislocate something or lose my footing or balance. Of course, there are some days where heading downstairs is just as difficult and dangerous as going up.

But let’s get back to that moment with my sister. I’m about three-quarters of the way up the stairs, hand gripping the railing, heart pounding and head spinning. My left leg is doing its delayed response thing where my brain is practically shouting at it to get moving while it sluggishly responds; my toes turn inwards, as my leg, almost like a dead weight, slowly drags itself up to flop where it belongs, demanding a rest before moving on to the next step.

I take a deep breath and sway slightly. Then my sister, directly behind me, starts singing John Mayer’s “Gravity.” It’s a woeful wail with a tinge of playful sarcasm: “Gravity…is working against me.”

She doesn’t make it further than that before I hear a startled gasp – the unvoiced equivalent of “Damn it, what have I done?” I wish I could have seen the “oh shit” expression on her face as I felt her panic rising about being insensitive or rude. But I wasn’t upset or offended; on the contrary, I cracked up laughing. The laughter rolled through me and I had to steady myself by putting my hands down on the stairs, and then I burst out singing the rest of the lyrics.

It fit so perfectly.

Every day, every moment of my life with Ehlers-Danlos syndrome and POTS and my other health issues, I’m working against gravity, both literally and figuratively.

With the effects of my connective tissue disorder, gravity is literally pushing me down and pulling my bones apart. If I sit in a chair that my legs dangle from, I can see my foot slide away from my leg at the ankle, and feel the weight of my leg pull my femur out of the hip socket. I constantly have to keep strengthening my muscles to try and support my unstable spine, to keep it from collapsing under the weight of my head. Sometimes I have to actively think about breathing as I struggle against invisible forces that make it very difficult. There are days when resting in bed is both my dearest friend and my greatest enemy. Lying down provides some relief from symptoms like low blood pressure, palpitations, headaches, dizziness, etc. However, my joints are so loose that no matter how I position the pillows, simply lying there causes terrible pain as my bones slip around in response to their own weight. Something as simple as a handshake or a hug has the potential for causing multiple dislocations.

As for the figurative side of things, I’m trying my best to function despite all sorts of struggles that seem to push me in the exact opposite direction of where I originally planned on going. My health problems have challenged my ideas of what my career will be, my definitions of beauty and strength, my views of the world and so much more. A progressive disease takes bits and pieces of your life away from you, sometimes slowly, sometimes quickly, but no matter what, it is a sad and painful process that is hard in many ways.

“And gravity, wants to bring me down…”

Coming to terms with health problems and disability is a grieving process full of many farewells, such as bidding adieu to a dream career, late nights out, a favorite hobby, walking without mobility aides, tying shoe laces and so on. It is not necessarily pleasant and can include all the varying stages of disbelief, anger, bargaining, depression, reconstruction, acceptance, etc. One of the best things for me was finally reaching a place of acceptance, being able to finally be OK with what’s happening and not hating myself or my body for it. But that is a long process, one that often has setbacks.

“Dream of ways to throw it all away…”

No matter how accepting I’ve become of my chronic illnesses and related limitations, I have days where I am angry, where I wish my illness would just leave me alone. Sometimes I wish I didn’t have a body, or that I had a healthy body and could easily do the things I miss so dearly. But the truth of the matter is that such contemplations don’t really help me personally, and I’m happy to be here and be the person I am – I just have to remind myself of that every once in a while.

“It’s gonna send me to my knees…”

On a day where I fall or faint or am paralyzed, on a bad day that has me wailing, crying out and collapsing from the pain that refuses to be managed by any intervention, or on a day where I’m so dizzy I can barely function, I can feel like all of this is too much for me to handle. The unsteady progression of my illness and the switching back and forth between wheelchairs, rollators, canes and bed rest can be scary and demotivating. The cruel words of strangers who don’t understand invisible illness can sting. The financial burden of doctor appointments, tests and medications can be overwhelming. I can’t lie and say I am always hopeful and happy, because there are days that are truly difficult. But no matter what, I will not let this bring me down. It is hard, but I will not let this stop me from living life to the fullest that I personally can, and from being proud of who I am.

“Just keep me where the light is…”

Laughter like the delightful outburst on the steps with my sister helps to keep things bright. Dealing with my disease with humor is a tool I’ve come to love. Making sure to always try and find a silver lining is something I’m kind of known for. For me, that doesn’t mean ignoring the seriousness of a situation or brushing aside the negative aspects, but simply acknowledging there is some good, too, no matter how small.

All of us in this world have our struggles, our versions of gravity that seem to be bringing us down. We need to find the things that help to make that manageable for us, whether it is bursting out into song, finding someone to talk to, playing video games, writing poems, reading, being super goofy, whatever. I’ve found that acknowledging and sharing the burden is one of the best ways for me to move forward.

Before this lovely moment of song on the steps, it had been a while since I’d heard “Gravity.” When I was a teenager, dance was my passion, and in modern class we would often dance to that same song. It was usually to a combination of swings that played with our centers of balance, providing me with that exuberant feeling of weightlessness that I miss so terribly much. Now listening to this song on bad days, smiling and thinking of it when walking is a struggle, when my head feels too heavy to lift, helps to give me that feeling of flight again, despite what gravity throws my way.

Thinkstock photo via Eloi_Omella.