Stories Involving My Disability
You've been strong for so long
You learned to carry this on your ownRomy & Fred Again.. — Strong
Intro
When I was a toddler, a doctor noticed I had port-wine stains, haemangioma and severe swelling in my right leg. She diagnosed me with KTW Syndrome. KTW Syndrome is now grouped with KT Syndrome. It is a condition so rare that at 32 years of age I am yet to have a physician who had prior knowledge of it. I hope the following stories from my life, including one incriminating story, help you understand my lifelong blessing.
Note for Those Interested in KT
Rare diseases are poorly understood. Meaning nobody really knows how to treat my disorder. Research into KT syndrome, symptoms and treatment is scarce. KT never had its “ALS ice-bucket challenge” moment. I am not a doctor or scientist and I do not intend to give any medical advice.
Sorry, I do not have answers for any KT parent desperate to better understand the condition. It is a case-by-case thing. What works for me may not work for someone else and vice-versa.
I was advised by physicians to get surgeries, such as varicose vein treatments. I refused. I was advised to take opiates for pain management. I refused. I was advised to get custom insteps in my right shoe. As an adult, I felt those custom insteps might have contributed to leg length discrepancy and were not sustainable. I do not recommend the insteps I used from ~5-27 years old, though maybe they factor into why I can walk today.
I believe good diet and exercise keeps swelling in check. Someone in one of my online KT Groups says vegan diets are essential. I don’t know. Improving diet and exercise is never bad advice. Massage can’t hurt either.
The only advice I swear by is 1. Wearing custom-measured compression and 2. Elevating swollen limbs during sleep. I owe my mobility to insanely expensive, custom, compression stockings, and, while in bed, putting pillows, backpacks or whatever I could find under my right leg.
While research into KT syndrome is still evolving, each individual story adds to our collective understanding.
Shriners Hospitals for Children
At three years old, I moved to South Florida. There I was advised to go to the Shriners Hospitals for Children in Tampa, a four hour drive. That was my best bet at getting some sort of treatment (compression and insteps).
From 3-18, I became familiar with this hospital. Of all the institutions in my life, Shriners was the most paradigm shifting. It influenced me more than school, religion, or, G-d forbid, politics. Shriners volunteers are angels, for lack of a better word. The same Shriners who donated all they could to a charity also volunteered. Volunteers drove families to the hospital at 5am. They did all they could to cheer up children in far worse condition than me.
Imagine your earliest memories are of babies and children, dismembered for various reasons. Some were born without functioning limbs. Others were scarred by life’s horrors. I will spare you more details.
Now imagine these same disfigured babies and children are laughing. Yes, Shriners staff and volunteers were always making children laugh. But there was something else causing their joy. Maybe because they had to smile. I don’t know why. Profound pain brings a profound understanding of life.
Maybe when I tried to not stare at a little boy with swollen limbs and hands resembling pincers, that boy was trying to not stare at a quadriplegic reliant on a breathing apparatus and electric wheelchair. Wherever you are in life, someone is suffering worse. Maybe they’re happier than you anyways.
I can not actualize all the ways this hospital transformed me. Maybe, I’m comfortable with my body because of all the times I had medical students observe my leg, as I sat in my underwear. Maybe I long to play Dr. Mario because it was one of the few video games the hospital had. Maybe I never became a sneaker head because changing shoes was always problematic. Appreciating life and charity were obvious takeaways from Shriners visits.
Update: I found out that the Shriners Hospital closed in 2022. I am super sad I never made a last visit to thank them for all their work and do some volunteering of my own.
Fitness
Like other syndromes (i.e. groupings of symptoms that occur together), KT is understood as a spectrum. Consider me “high-functioning” within the KT spectrum. I limp on good days. I have had weeks where I am mostly laid in bed, leg elevated, wincing in pain. Most of the year, people do not notice I have a disability at all. Today, I can squat, so long as I don’t add weights.
At 9 years olds, I played on a fútball (soccer) team. This is arguably the worst sport I could have chosen. My friends partook, so I had to. My coach had no clue how to handle my situation, so I had freedom to skip sprinting practices. This gave me the confidence to break rules later on (ex: My SWAT Story). That was my only time on a sports team. We made two goals during the entire season, one of which was an own goal. Don’t blame me.
I still regularly exercise. Sometimes when my legs are in deep pain, I workout my arms until they take the attention away. Many with affected legs have strong upper bodies. We are not compensating. We’re shifting focus.
Before I get to more funny stories, I need to emphasize that my average athleticism is far from the experience of others with my syndrome.
There are others, like me, either lucky or misdiagnosed. Billy Corgan of the Smashing Pumpkins is alleged to have KT on his arm, manifesting with port wine stains. Two arm wrestlers–Matthias Schlitte and Jeff Dabe–are allegedly affected on their right arm. These two “real life Popeyes” possess super strength! I’ve never spoken to them, so I can’t say if they experience bouts of pain. These three men are inspiring, but exceptions.
People born with KT that cause swelling on a vital organ are unlikely to live long. An affected friend in Minnesota swears she was the first person to have a debulking procedure where they simply cut out most of her affected limbs. Some KT friends are in and out of hospitals. I can tell darker anecdotes, or re-emphasize these are confident and happy people.
Handicap Privilege or Luck
In many video games, there are handicap settings. If it’s a shooter (game), one player can have three lives and another five. The player with three lives can still win. Inevitably, the non-handicapped player will still scream that the terms are not fair to them.
I say I am disabled, because I have a handicap. No matter what I do in life, even if I regain previous athletic skills, I have KT and subsequent swelling. You are free to argue that I am not disabled because I win.
Being disabled does not mean you are worse off than others. It means your condition has a label. Having met wheelchair bound people who refuse to use handicap parking, it is easy for me to waive my opportunity too.
My life is marked by immense privilege and luck. I got a handicapped placard at 18. I used it primarily when I was in severe pain and during my University days, since these spots were otherwise wasted. For a few years, I used it when I saw a dozen empty handicapped spaces at a giant store. At 24, I did not renew my placard. I hope I never have to.
I have been going to concerts and music festivals for two decades. After all this time, I still use my disability as a bad excuse for my horrible dancing. This is a privilege. Others would have to fess up to being bad dancers.
In one in fifty music events, there is a degree of handicap accessibility. I think every single person is jealous of this Free-I.P. seating. Yes, I use it. Spoiler, the handicap section of most music festivals includes three people who were in snowboarding accidents, and their friends.
For entertainment’s sake, next I’ll tell one story where I took advantage of my condition:
Got Away With It
I was a recent high school graduate, invited to watch the first episode of the second season of the infamous show Jersey Shore. The reception had a mix of “cool kids” who enjoyed the show, and “nerds” like me, who just wanted to drink while mocking the show.
Jack (not his real name) had too many and was ready to bow out of the event. I was a bad kid, accustomed to drinking. I either felt sober enough to drive or did not care that I was not. Another friend decided to tag along. We made it halfway to drop off, before Jack needed to vomit. So I pulled over by a lake, where Jack did the deed.
After Jack vomited and our friend comforted him, they came back to the car. I turned the car on. Before I hit the gas, I saw the headlights of a police car. In a panic, I immediately turned the car off and prayed.
Two officers arrived to ask me questions. I was too honest. ‘We just graduated.’ ‘We are about to go to college next week.’ ‘This car is new.’ Finally, ‘Yes, I had a drink.’ The officers were now angry.
They searched through the back of my car for something incriminating. Fortunately, there wasn’t anything. But the officers seemed hellbent to find evidence. Finally, an officer asked me to step out. I stumbled and thought it was all over for college and my future. He frisked me and continued to ask questions. At the same time, the other officer shone his flashlight into the front seats, revealing a handicapped placard.
The officer shouted at me, “Why do you have a handicapped placard?!”
I lifted my right jean leg to reveal my stocking covered leg. I’m not sure what possessed me, but I responded, “I have a fake leg.”
The officers immediately looked regretful. Maybe they did not want to do paperwork for three promising students, two of which are physicians today (not me!). More likely, they were just uncomfortable with arresting a disabled teen, even if he fessed up to DUI. They immediately let us go.
Serendipity
In 2018, I bought a bus and wandered the country solo. I worked random jobs along the trip partially to go with the Universe’s flow, and partially to help fund my adventures. When a friend invited me to help set up the Infrasound Music Festival in Wisconsin, it was a no-brainer. It was a blast.
Driving artists to Infra (Attaya, Detox Unit +1, Phaelah, DMVU)
This isn’t about my wilder festival experiences. That’s for another post.
This isn’t about the rural cities I visited. That’s also for another post.
I had no plan where to go right after the festival. I thought of driving South West to the Mall of America, a famously massive mall in Minnesota. But by the time I was ready to drive out, a friend called to say his flight was canceled, and I could stay with him at a hotel in Duluth, Minnesota. So I drove North West instead. It was another “go with the flow” “no-brainer.”
After a few days, I said it’s time to go see this mall. Keep in mind, I’m an Israeli and Florida Man. I had no knowledge about Minnesota, except that Duluth is pretty, and all the Great Lakes are eerie, not just Lake Erie. Spoiler: I never made it to the mall. I’m not sure why I wanted to go.
I drove South, slowly, taking stops for parks and random sites. After a few hours, I stopped to get gas. A thin, possibly drug-addicted woman, asked about my bus. I always make an effort to be polite, so we chatted.
Her, “Do you want to go get coffee?”
Me, “Sure! Where?”
Her, “The cafe.”
Me, “Which cafe?”
Her, “There is only one in town.”
I drove to Peggy Sue’s Cafe in Willow River, the only cafe in a town of 400. The woman from the gas station never showed, which was for the best. Instead, I talked with Peggy Sue herself, her husband, and town people. I slept at the cafe for a few nights. I went mudding and tubing with moms while their kids were at the school (the only one). I did all sorts of things I had no plan on doing, in an area I never heard of.
On day 5 in Minnesota, I met three of my new friends from the Cloquet area. We, grown adults, decided to tailgate and enjoy a theme park (Valleyfair). On the way there, I got a message from a Facebook friend.
I don’t remember how I was added to this friend. She was the only other person with KT I vaguely knew. We did not talk. She saw I was in MN, and asked, ‘Are you going to the conference?’ I responded, ‘What conference?’
It turned out that the Mayo Clinic was holding a conference for KT Syndrome, my disability, where affected people and specialized doctors met. For the first time in my life, I could meet others with KT.
Of course I took this opportunity. I arrived in Mayo and spent a few days with a new family, bonded by a disability. They were all generous people, happy to invite me into their homes. While still in Minnesota, I stayed with one KT-affected friend followed by another. Later, I stayed in South Dakota with the parents of a KT-affected child, my age. I had a new community.
I met cute couples and families, who really cared about treating KT with cutting edge technology. I met one go-getter, a doctor who was affected on her left leg, but managed to run half marathons. I met people with severe disfigurement from other conditions they had alongside KT. At 27 years old, I met doctors who were connecting KT to a broken PIK3CA gene, providing the first rational explanation of my syndrome I ever had.
I met Berlange “BeRevealed” Presilus, a gorgeous model who gave me even more confidence to show off my compression stocking. Berlange is a reminder that disabilities can be sexy, especially if you own it. She inspired me to buy colored compression garments, rather than the boring tan ones that officers can mistake for a fake leg. [Side note: I am not criticizing anyone who wants to get rid of their port-wine stains or beauty marks. Getting stared at is tough. I personally think port-wine stains on someone’s face is really hot. They don’t need to factor that into laser treatments.]
I met Rick Guidotti, a New York photographer who runs Positive Exposure. He photographs and honors rare diseases. I encourage every physician to buy his works, because disabled people need to be seen outside of cold, black-and-white medical textbooks. We are more than our symptoms.
I had spent a week going with the flow and was rewarded greatly. If it weren’t for a flight cancellation, a date who ghosted, new friends, an old Facebook friend, and more random occurrences than anyone wants to read, I would have never met someone with KT Syndrome. By chance, I met a dozen or so, and their loving partners. I found a new family, who I am sure I will reunite with one day, at a conference in Minnesota or in some wildly unlikely setting.
