Finding the strength to keep going even as my body gets weaker

Posted June 29, 2020

Heidis story

Often I find it a struggle to open a gallon of milk, I need help opening jars, and yes, I have become a person who has even taken a knife to a juice carton. My body is just plain weak, and it’s getting weaker. But it’s in this weakness where I find my strength.

I’ve contemplated writing this for a few years now. I’ve been asked by a few people to pen my EDS story, but it just always seemed more like complaining every time I’ve attempted. And my story is certainly not over. Yet here I am telling you all about the most vulnerable aspects of my life— Ehlers-Danlos syndrome (EDS).

My life even began with dislocations. I was born with dislocated hips that required a cast for a few months and then a brace for months thereafter – doctors called me a “floppy baby”. Throughout my childhood, bruises and rashes were the norm. I was the “bendy” kid who used to do circus tricks to the delight of her friends. I would twist my fingers back, and one such trick was to put my entire fist in my mouth.

As a child I was athletic so I joined track and basketball and of course, had some aches and pains, particularly with my ankles. I was sent to a specialist who told me I had joint hypermobility syndrome (JHS), which at that time was what they were calling hypermobile Ehlers-Danlos syndrome (hEDS). This was in the 1980s, prior to the Villefranche nosology for Type III in 1998. (The EDS criteria has since been updated in 2017). 

This doctor couldn’t believe how hypermobile I was and told me I would “have arthritis at an early age.” He seemed only focused on my joints and impending arthritis, which unfortunately seemed to be a common misconception for many doctors at the time—there’s so much more to EDS than the joints. I was young and athletic back then and my mom and I assumed I was just limber, and we didn’t really take this appointment very seriously. So we just taped and braced my ankles up and I kept utilizing my bony elbows in basketball for rebounds and steals and I kept running distance in track. What I wouldn’t give to run now. I sure miss the rhythmic sound of my own breath and the constant patter of my feet on the ground while my thoughts swirl through my head.

It was in eighth-grade when I attended a dance and felt dizzy until everything went black. They took me to the hospital where doctors thought it was hypoglycemia or heat stroke. Years later, after my EDS diagnosis, I learned that it was really Postural orthostatic Tachycardia syndrome (PoTS), which is a form of dysautonomia. PoTS often accompanies EDS and causes dizziness and fainting spells along with many other symptoms which can often arise as mine did in the teenage years. Activity and exercise also can often exacerbate the symptoms. It wasn’t until my EDS and PoTS diagnosis at the University of Michigan in 2008 when it all began to make sense.

Pregnancies came and went with intense back pain (later I learned stemmed from congenital spondylolisthesis), dizziness, and heart arrhythmias, but left me with two tiny bundles of joy, both of whom have subsequently also been diagnosed with EDS. It saddens me to think they both might suffer, but we are never sure how severe any case may be. 

In 2010 after 14 years as a graphic designer, I made the heartbreaking decision that I could no longer continue. I still create—I make jewelry, I craft and paint, and I write poems—but I do it when my body allows. Art will always be who I am, no matter if I am working or not. Many tears were shed before I understood this. When I create, when I write a little poem, when I make something that will be here for years to come that came from my own hands, from my mind, my soul—it’s what keeps me smiling through the pain. It’s what fuels me.

Each of us with EDS is different and we all have different features and symptoms. Some have mild features and others much more severe cases. Some have mast cell issues. Some require a feeding tube. I’ve been lucky to not require that intervention. For me, my spine seems to be at the root of most of my issues. Five spine surgeries have come and went—C1-C2 posterior fusion, C5-6 ACDF, posterior C5-C6 revision fusion, L5-S1 360° fusion, and then subsequent removal of my cervical posterior hardware. 

Recently a neurologist told me there is spinal cord damage—the cause of my daily weakness, tingling, and numbness in my extremities. EDS has also caused problems with my gastrointestinal tract, including swallowing issues, ulcers, and colitis. Pelvic floor dysfunction is quite common and has also been an issue I’ve had to attend to. I have neurogenic bladder causing retention, which led to a nifty little bladder stimulator implant so now I don’t have to cath twice a day anymore that was necessary prior. 

Osteoporosis was diagnosed in my mid-thirties. There’s been sensorineural hearing loss, ear tubes, cardiac arrhythmias, concerns over closing the PFO, (or Patent Foramen Ovale, which is a very common small hole in the heart, [would my EDS heart tissue be too fragile for the device the doctors wondered?]), dental concerns, scoliosis, vitamin deficiencies, chronic fatigue syndrome, TMJ, of course, osteoarthritis, and more. There are still other issues that may or may not be related to EDS as well, like kidney stones and ovarian cysts and more issues I’d prefer not to list. 

One of my biggest chronic pain struggles is my constant headache and occipital neuralgia with migraines. I’ve had this constant headache for 6 years and I’ve even went as far as surgery to remove hardware in my neck to fix it but to no avail. There have been a couple of doctors I’ve seen about an occipital nerve stimulator, but not being able to get MRIs because of my bladder stimulator implant has made spinal problems difficult to diagnose, so for now, we’re holding off. All in all, EDS has caused quite a lot of weaknesses.

But I also know with all these weaknesses, I still grow stronger. Because sometimes strength is not always about how much weight you can lift or how far you can run. Strength is not always about opening a jar or milk jug. Sometimes strength is just putting one foot in front of the other when you’re so exhausted and so pained you barely can think. Sometimes strength is finding beauty when you are unsure if you can. Sometimes strength is being the beauty, being the calm. Sometimes strength is just continuing. Sometimes strength is being there for someone when they need you, even when you aren’t sure how you can muster the strength to be there for yourself.

When you have EDS you are called a zebra. And yes, I am an EDS zebra. But I am much more than just a zebra. I am an artist. I am a mother. I am a wife. I am a daughter. I am a friend, an aunt, a cousin, a granddaughter, a niece, a rockhound, a humanist, a poet, and so much more. And my story is not over.

And my EDS weakness gives me strength. I am strong. I am zebra strong.

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