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How I've Earned My Zebra Stripes as Someone With Ehlers-Danlos Syndrome

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I am a (South American) medical zebra. I live with Ehlers-Danlos syndrome, an alteration of the collagen fiber that makes it more elastic than normal. That means my ligaments and tendons are so elastic that my joints are unstable. It also means that the tissues that must contract and relax so there is digestion, venous return, etc. don’t do it well. The result is a life with pain, fainting spells and other adventures from a very young age.

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

The day to day of a zebra is very special, almost magical — including black magic. We become sarcastic, cynical, idealistic and volatile in order to move on. We see others as weirdos, and we search the world to make sure someone else understands us.

Finding a definitive diagnosis is not easy. Most of the people who could help you, first think you are a little “crazy,” that it is a whim, that you want to show what you are not, but eventually they decide to dedicate their attention and you succeed. Fortunately for everyone, there will always be exceptions that are resolved faster.

Little by little we learn more about anatomy than any other patient. Our very formal and well-mannered muscles introduce themselves to us one by one from our early childhood and let us know where they are and what they are doing. Do you, reader, know there is a fiber of the sternocleidomastoid muscle that, when the contracture is very deep, it sounds the same as if you were stroking a guitar string? The sound reaches the interior of my skull; others do not hear it, and that is why it is so difficult for others to believe us.

There are days when my friend Arnold (the one with neuralgia) wakes me up because you have to give life excitement from the wee hours early on. The muscles of the jaw (masseter, occipital and SCM, … see what is learned!) and those of the neck decide to have a debate to see which is most prepared to dominate the world. They all contract at the same time, and each one pulls toward its base. The scalp hurts, and if I run my thumbs over the temporomandibular joint I can almost see the lines of electricity radiating like a sun. And it hurts.

That’s where the magic begins, which some call medicine, and it can be a pharmacy or a herbalist. I always try first with the second: magnesium compresses to relax the muscles, chamomile to reduce inflammation and coffee just to feel awake through all this. But most of the time I end up taking a pill, or a combo “made at home” type muscle relaxant, plus anti-inflammatory, plus vitamin B complex which stops never inflammation, just to cover all fronts.

Other days it is the neck that complains and takes control, from the head to the hump … that point where the bullfighter thrusts the bull. It extends to the tips of the shoulders, and this is how the water carriers of the Middle Ages must have felt … those people carried a piece of wood from which they hung the leather bags loaded with water, and between handling the weight and maintaining the balance, they advanced slowly from the river to the house. I call them days of lights, because I see sparks with that pain and because I feel I have to resist more, always a little more, each time with less strength, more fear and without hope that something is going to change.

Today I feel like there are stiletto shoes stuck in my back, one just below the right scapula and another next to the dorsal vertebrae. If I breathe deeply, the pain is sharp and local, if I twist or stretch my arm a lot, then it is a radiating pain. I always imagine drawing that pain would be a pointillism job with purple paint in different shades.

When I was bathing, I remembered the collarbone has two ends, both of which hurt. Obviously there are ligaments in both points and from time to time yours become swollen during the night, from spending a lot of time sleeping on only one side. When I stretched out to wash my hair, one end “click” at full volume when it returned to its position next to the breastbone. Then after lathering it was the other end that burned me more than the shampoo in my eyes.

I am a teacher and for the last 16 months I have been spending nine hours a day sitting on my office chair, six hours teaching and another three hours preparing class or attending training. This means that what little movement there was before in my classes simply disappeared: walking among the students, going from the board to the desk or using my body language to support my words — zebras do not react well to stillness.

After a few hours of work, it is when a little undervalued muscle greets me, the psoas mayor —PM for the acquainted. This friend is born in the lumbar and travels to the front, to insert its end into the groin. Sitting for many hours causes it to weaken and atrophy (as explained to me by the physiotherapist), which in end-user terms equates to burning pain — red — when I get up from the chair, and in some cases when walking fast. This pain makes me lose my breath and forces me to bend. The solution is simple, but painful. You have to massage the area to activate it, and then do some exercises that will stretch Mr. PM again. But remember that I am a zebra, so the exercise is treacherous. If I stretch a lot, I may dislocate my hip. If you don’t stretch enough, your back pays the consequences… insert adventure and suspense scene music here.

Before reaching the knees, know that at some point I will have had to get up from my chair (also known as “my jail”), or not, and everything will have become a black and white film, very appropriate for a zebra, of course. Here the neurocardiogenic or vasovagal syncope appears. This poor man maintains a very low profile and low blood pressure. Getting up at “normal” speed, or spending a lot of time still with my torso in an upright position is bad. The blood goes down and as there is a bad venous return, it cannot return to the heart soon, so it sends its messenger, the syncope. Bad thing when we consider that “a long time” is like 20 minutes. Syncope does not kill, but the fall can hurt.

Now the knees. These evil twins go out dancing and do not warn you, and they need all the support in the world — like spoiled teenagers! It is as if it is difficult for them to communicate with the rest of the body. One moment you’re fine and the next, the kneecap pops out of its socket. Or the ligament is stretched from being “hanging” in the office chair, so you end up with bursitis and tendonitis and knee-curseitis (a term that I can’t establish among doctors, but that all zebras recognize). I fell while dancing and sustained a second degree injury to my internal cruciate ligament. My orthopedist called it a footballer’s injury, but I assure you that my only approach to this sport is to say that Zinedine Zidane is the most handsome man in the industry.

Let’s not even talk about the ankles. Those are treacherous ones who inspired the fable of the scorpion and the crocodile, and any soap opera. My first serious sprain, complete with cast and therapy, was on December 24, at age 8. I was running across the street with my Aunt Jackie because we were late for Christmas dinner. There must have been a rock, or a pothole, because my ankle buckled and 10 minutes later it was black and the size of a tennis ball. And it hurt more than a cavity uncovered! 40 years have passed, and I count 15 sprains on my right ankle, and 17 on my left. Most have been light, but the interesting thing is that they happen if, for example, the weight of the blanket accumulates at that point during the night. That is enough to wake up limping and swollen.

Every joint in my body has its own anecdote. The wrist and the volleyball class, the sacrum and the chair of a conference. In short, they are my zebra stripes. Well, that and the veins that show up everywhere because zebras have thin and delicate skin.

There are many different stories, but we all agree on something. Pain lives in and with us. Pain is tiring, tiredness brings confusion and confusion increases the challenge of living in a society that does not always believe in invisible or variable disabilities. Some days I am so well that I can dance to a tropical song in my living room. Other days I need my knee splints so I can prepare lunch. Some days I must put on the cervical brace to teach my class and it may be months before I need it again… because no one notices the pills that I already took before the class started.

I am a zebra, and every day I learn more about myself and my herd. This is a zebra day and now I just want to go to sleep … if the pain allows it.

Getty image by vgorbash

Originally published: June 8, 2021
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