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Facing Reflex Sympathetic Dystrophy as a Warrior

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Twelve years ago, at the age of 23, I was diagnosed with reflex sympathetic dystrophy (RSD). I remember the day vividly. My orthopedic surgeon had referred me to a pain management specialist in San Francisco. Excruciating pain in my left foot and ankle with an intense burning quality had now become the norm over the last several months. Despite following my surgeon’s strict post-op regimen of aggressive physical therapy and medication, I was not healing. I had now endured six ankle surgeries total, attempting to correct problems caused my an ankle fracture three years prior.

Something was different this time. Something was wrong.

A kind, and compassionate doctor, who still treats me to this day, greeted me. He reviewed my medical history, MRI and CT san reports, letters from surgeons and rheumatologists, lab results, and examined my foot and ankle. It was so swollen at the time; even shoes four sizes larger could not fit over it. It was red hot, and something as simple as my bed sheets, or a breeze hitting the area, elicited a pain so intense I never knew was possible.

“You have a textbook case of RSD, which stands for reflex sympathetic dystrophy.”

I sat stunned, feeling as if the wind had been knocked out of me, as my doctor began explaining what RSD was and the various treatment options available to me. I remember thinking this was not supposed to be happening. I’m 23 and healthy! I thought I was coming here for pain relief related to an ankle fracture! How was this turning into a diagnosis of a serious neurological disease?

As medications were being prescribed, physical therapy and nerve blocks arranged, anxiety washed over me. Questions and thoughts spiraled in my brain like an unyielding vortex of panic. “Can this be cured?” “Will I get worse?” “I have to finish college!” “You’re going to put needles in my spine?!?” “Will I be living with this much pain forever?”

As I left the office, the same thought kept replaying in my mind. “What am I going to do?” I had never heard of RSD. Even in my work as a pharmacy technician, I had never run across a patient with that diagnosis.

When I got home, I sat down at my computer and searched for RSD on the internet. Back in early 2004, support for chronic illness was scarce. Mainstream support groups, social media and message boards were still in their infancy. Page one of the search engine revealed nothing. Finally, buried on the third page of my search results, was a small organization for RSD.

I sat for over an hour, reading everything I could about it, sobbing.

Not only was RSD more serious than I thought, it was also not curable, progressive, could spread and become systemic, and was considered a rare disease, which lacked awareness in both the public and medical communities.

Never had I ever felt so scared or alone.

I found myself asking, “How am I ever going to learn to live with this? Am I doomed to feel terrified and alone forever?”

It was those feelings of isolation, fear and anxiety that eventually drove me to push through those tumultuous early days, and try to grow and persevere. I had to learn to live in a new way.

Out of that initial loneliness and despair emerged a stronger, more determined self. My warrior self.

When you think of a warrior, oftentimes images of sword-wielding caricatures come to mind. In film, warriors are often portrayed as samurais or vikings. Physically, I certainly don’t project a typical warrior image, but what resides in my heart and spirit is nothing short of badass.

Over the last 12 years, I’ve worked hard to cultivate a warrior heart and spirit. It has been no easy feat. RSD has spread throughout my body and now affects all four limbs, upper back and neck. Life is rather challenging. Constant excruciating pain, mobility and dexterity issues are a daily battle. I have good and bad days — some weeks more bad than good. But it’s the fact I get up each morning, in spite of how bad I’m feeling, and face each day.

It doesn’t matter if the only thing you accomplish in a day is getting out of bed or taking a shower. Maybe you weren’t able to cook a meal or visit with friends or family. You may feel weak because you didn’t accomplish what you wanted to because your body wouldn’t corporate.

Here’s the thing, though — you are living with a severe disease that wrecks havoc on us physically and emotionally. If you are reading this, you’re a warrior. You are courageous, and you are strong. You are the definition of inner strength.

We all have the ability to face our health challenges as a warrior. It doesn’t matter how physically strong you are, how defeated you feel, or how depressed or anxious. Pay no mind to the number of good verses bad days.

I know it’s hard. You will make it. You will thrive. You’re a badass. You’re a warrior.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Carrying the Financial 'Baggage' of Rare Disease as a Teenager

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As a 19-year-old, what did you worry about? What sorority is throwing the next party? Who was dating your crush? What’s for dinner? Who’s clearing the full sink in your apartment? What did you get on that calculus final?

These are all valid concerns of a 19-year-old from my perspective. I wish that college, work, a social life, and whatever else I chose to include in my life was all I needed to worry about. Instead, I have been given a different hand — a hand far more challenging than I ever imagined and a hand I wouldn’t wish on my very worst enemy.

For almost five years now, I have been fighting a battle unlike any other. It is a battle I cannot fight alone. I tried, but I do not possess the skills necessary to fight and win the war alone. In the last four years, I have had countless hospitalizations, surgeries and procedures to control my sometimes uncontrollable body.

My whole life, the only thing I had to be concerned about was my deafness and managing my hearing aids, which became cochlear implants in 2010. That is, until I developed reflex sympathetic dystrophy/complex regional pain syndrome (RSD/CRPS) in my hand in 2012. With that diagnosis came 28 week-long admissions to date, countless prescription medications, and even more diagnoses. Anyone with a chronic illness might tell you it is nearly impossible to only have one chronic illness.

Sadly, I have found that to be true as the RSD/CRPS has ravaged just about every organ system in my body. Up until now, I had always been protected by my parents’ insurance plan. Now that my problems have become so complex, my doctors are demanding I see a particular specialist not covered by my insurance to diagnose an extremely rare condition known as stiff person syndrome (SPS). They refuse to treat me until I see this specialist. In order to see this specialist, I have to travel eight hours away, stay in a hotel for up to a week, and have all the testing this new specialist could potentially want done, in addition to the cost of two people being away for a week — all without insurance coverage.

At 19, I’ve had a job where I woke up at 5:30 in the morning, worked until 7:30 at night, often not getting to bed until 10 p.m. while taking summer classes online. To most, it probably sounds like torture. But for me, I would do anything to have that job as a waterpark lifeguard again, even though it was barely a minimum wage job.

This summer, my family is faced with two hospital bills of an unknown amount. I can’t work or function optimally for school until this condition is diagnosed and treated, which makes matters even worse. I can’t make money to help my family help me. I am wheelchair-bound and unable to drive due to high doses of medications.

I don’t want to have to worry about my family’s long-term financial security because of my poor health and expensive medical needs. We should be worrying about things like college and summer vacations. As this appointment with the specialist approaches, I feel very cornered. Without this specialist’s diagnosis, I don’t get treated by the doctors in my insurance plan. Without treatment, I am stuck. I feel like every day I have to worry about something related to my health. I always feel the need to sacrifice something to reduce the financial strain. Everyone tells me not to worry about the money, but it doesn’t grow on trees. I don’t want to put myself or my parents in a bad financial position.

All in all, a 19-year-old, hardly a kid, but barely an adult, should not have to worry about their medical bills on top of their poor health. No one should actually, but I kind of wish I could enjoy the young adult “spend what you make” lifestyle where occasionally mom and dad throw in a few extra bucks. I have worked hard for what I have. I can’t wait for the day I am able to work again, have more than $94 in my bank account, and say that I have worked hard to earn it.

young woman wearing gray t-shirt
Meghan.

Follow this journey on The CRPS Ninja Chronicles.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why I Was Kind to the Man Who Said I Stole a Handicapped Placard

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When you’re in your 20s, you don’t expect to need an accessible placard for your car, so you can park close to work, shopping centers, etc. However, that’s the case for many of us with chronic illnesses. I have a placard for my really tough days when I know I don’t have the energy to take a long walk to and from my car just to run into the pharmacy to pick up a medication.

People in the community have this idea in their heads of what a disability looks like. They think people in wheelchairs and senior citizens are the only ones who should have parking placards, because that’s what a disability looks like.

Unfortunately, they couldn’t be more wrong. I’ve had reflex sympathetic dystrophy (RSD) since I was 13. I’m now in my late 20s and still deal with RSD and everything that goes along with it. RSD is considered an invisible condition, meaning you can’t see the problem.

When I was in graduate school in 2011, I worked at the college library in between classes and on weekends. There aren’t many parking spots at the library, and by the time I got to work, most spaces were filled up. I often used my parking placard because I was in a lot of pain. And knew that by the end of my shift, I’d be in too much pain to cross the campus to get to my car.

I often got looks for parking there, but no one ever said anything to me. Until one day, a student, probably not even 20 yet, stopped next to my car as I was trying to get out, grab my cane and my book bag. At first he just looked at me, and I politely smiled. As I was locking my door, he said, “You know, it’s pretty lame that you have to steal your grandmother’s handicapped card just so you don’t have to walk anywhere.”

At first, I was taken aback by his statement. I got stares all the time from people who obviously thought I was faking my limp, but no one had ever said anything to me. I decided that being rude to him wasn’t going to get me anywhere, so I decided to kill him with kindness. I stuck out my hand to shake his and said, “Hi, my name is Kerry. What’s yours?” The guy began fumbling for his words and eventually said, “Huh?” I responded with, “If you want to get to know me and why I’m legally allowed to park here, I’d rather we know each other’s names first, maybe learn a little about each other. Then I’ll talk to you about my disability.” He didn’t know what to do or say, so he just put his head down, said, “I’m sorry,” and walked away.

It irks me that people associate parking placards with grandparents. It’s not a “senior citizens placard,” it’s a “disability placard.” On top of that, not everyone with a disability is in a wheelchair. In fact, I work really hard at not being in a wheelchair and not using crutches or a cane. I want to look as “normal” as possible, but sometimes in order to do that, I need to park closer to a store, so that I’m not walking a long distance, and my limp starts to show.

Disability knows no age or race. Disabilities comes in all shapes and sizes and can appear differently, depending on the person. Just because I’m not old and don’t use a wheelchair, doesn’t mean I don’t have chronic pain. Just because I don’t use my placard today, doesn’t mean I won’t use it tomorrow. We’re taught in kindergarten not to judge people based on first appearances. I wish people who look at me parking in an accessible spot would remember that.

Kerry Hussey

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To the Teacher Who Called Out My Child With Cerebral Palsy for Bad Behavior

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Dear Teacher,

When we met at Open House at the beginning of the year, there was so much I wanted you to know about my daughter. She’s 8, but she’s only been mine since she was 4. When we met her in an impoverished orphanage in Ukraine, her hair was buzzed off, and at 24 pounds she was the size of a 2-year-old.

She was born severely premature and suffered a stroke that damaged parts of her brain shortly after birth. Due to a lack of medical treatment for her cerebral palsy, she was completely unable to walk and could barely sit the first time we saw her.

I wish you could’ve seen her then so you knew how far she’s come, but in some ways I’m glad you didn’t. What I really wish you knew is how many times she was left out and left behind simply because she couldn’t walk. It’s been four years and she still remembers all of the other children going to music class while she sat alone.

What you saw when we came to your classroom was a seemingly social and extremely inquisitive little girl — small for her age, but loud. She’s always been loud. At the orphanage it was the only way she could get attention from anyone. She couldn’t walk so she yelled. I wish you knew how I could tell when she was feeling left out by the volume of her voice, always trying to get someone, anyone to notice her.

I wish you could have seen how at 4 years old, she didn’t know what crayons were. While children in the U.S. get therapy, she got stuck in a crib. I wish you could’ve seen her when she tried to eat the Play-Doh we bought for her because she had no idea what it was. In four years, no one had ever given her paper to scribble on.

When we brought her home and first took her to the CP clinic, I wish you could’ve heard the doctor tell us that she’d never walk. I wish you could’ve felt what I felt that day. Sad. Indignant. Determined.

I wish you could’ve been there when the developmental pediatrician — who charged $450 to walk in the door — took only 10 minutes with my newly adopted 4-year-old, then asked her to replicate a tower of blocks. She didn’t like him, so she wouldn’t do it. I wonder if you would’ve agreed with him when he told me she would always be at the low end of the IQ scale? I never took her back to see that doctor. He saw the traumatized, neglected child in front of him and missed the child she could become.

I wish you knew how many hours of physical therapy I’ve sat through so my daughter could achieve her potential. I wish you could’ve heard her screaming at me in Russian those first months home every single night as I did stretches with her. Her tears and mine together; I’m still not sure what she was calling me. My arms would ache as I supported her weight while I did exercises with her to strengthen her legs, but that feisty spirit of hers is why she’s here today.

I really wish you knew what it was like to watch her take her first independent steps as a 5-year-old. I wish you could appreciate what it’s like to have to teach a 5-year-old how to put her hands out in front and behind her when she falls. I wish you knew how proud we were of her the first time she fell backwards and finally got her elbow down first instead of her head.

I wish that you could experience what it’s like to navigate an airport and fly on a plane with a child in a wheelchair with the hope that the surgeon you’re going to see will be able to give her the ability to run.

I wish you knew what it was like to be a little girl who can’t run, but believes one day she will.

So when my daughter came home clipped down from green to yellow for bad behavior on her behavior chart like she’d done something wrong, and the note in her agenda said, “Running in the hallway.”  I wish you could’ve known what that felt like for me.

Maybe now you understand why I wrote back, “You know, I was told she’d never run.”

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission process.

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8 Reasons I Don't Need to Write About What My Son With Autism Can't Do

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My 4 year-old son was diagnosed with autism last February. If you’re a parent of a child with special needs, then you know what it’s like to agonize over what your child can’t do. It becomes an obsession; you imagine a life full of dreams dashed.

For this very post, I had planned on writing about how Big C can’t play catch, even though his 22-month-old brother so desperately wants to play with him.  When Big C catches the ball (on the rare occasion he does), he just runs off with it.

But I never wrote that post. Because I realized, who cares?

My son’s lack of desire or ability to play catch isn’t a deal breaker to happiness. He doesn’t care, so why should I?

It got me thinking. Instead of agonizing over my son’s struggles, what if I focused on his strengths? This is a much more productive and positive way of thinking, and it’s embarrassing to admit it took me so long to consider it. But that’s what happens to us as parents when professionals start slapping labels on our children. We get scared, we get defensive, we get deflated.

So for this post, I want to take a moment to celebrate what makes my oldest son truly special to me. This is what Big C can do:

1. My son can experience life with an intensity many long for. His moments of happiness are so amplified, he cannot help but literally shout, embrace and jump for joy.

2. My son can persevere. He gets angry and frustrated but always presses on. A month ago, he wanted to learn how to ice skate. As he grew more frustrated, I became frustrated and wanted him to stop. But he told me, “No, Mommy. We can’t give up. I have to do this!”

3. My son can melt my heart with his compliments. I was trying a dress on recently and he said, “Oh, Mommy, you look beautiful. Just like a princess!”

4. My son can show true remorse. Without fail after a meltdown, he’ll come to me and say sorry. Sometimes, it doesn’t come until the next day, but it always comes when he’s truly sorry and ready to admit it.

5. My son can pay exquisite attention to a task he is truly interested in. In recent months, he’s demonstrated his ability to play for hours with Legos, creating the most imaginative creatures, vehicles and buildings.

6. My son can feel selfless love. Whenever I catch him giving his younger brother a kiss or hug because he’s overwhelmed with emotion at that moment, my eyes and my heart swell.

7. My son gets me. Just this weekend, I had my own minor meltdown and went upstairs to cool down and take a break. My son followed me upstairs and said, “Mommy, just take a deep breath.” He then sat beside me and rested his head on my shoulder. “It’ll be OK.”

8. My son can bring tears to my eyes. If you could see me now, you’d know exactly what I mean.

A version of this post originally appeared on Contemplative Chaos.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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How My Autism Prepared Me for the Stage

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You may ask yourself, what is a man with autism doing working at language-based theatre companies? I often ask myself that question. But I believe in theatre my “weakness” is one of my strengths.

If you see me walking down the street, I most likely have headphones on. I nearly always wear a blue t-shirt, a v-neck so nothing touches my neck. And I don’t wear coats or jackets when it’s cold out, which drives my wife crazy. I was late to speak, but I invented my own incredibly detailed sign language to communicate. I had speech therapy all through elementary school and occupational therapy all through middle school.

I am also legally blind (autism is often linked with vision or hearing problems) so I can’t perform well in cold readings. If given a few days before an audition, I always memorize sides so I don’t read them off the page. I enlarge scripts so they are twice as big, just like how all of my textbooks and tests were enlarged in school. I will often secretly record the first read-through of a play on my cell phone, hidden in my pocket, so I can learn my lines and study the script by listening. My eyes give out after about fifteen minutes of looking at a page. But because I know this, I get off book damn fast. Often before the first rehearsal.

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Tony Vo and Mickey Rowe in Out of Surface at the Eugene O’Neill Theater Center.

People with autism use scripts every day. We use scripting for daily situations we can predict the outcome of, and stick to those scripts. My job as a person with autism is to make you believe I am coming up with words on the spot, that this is spontaneous, the first time the conversation has ever happened in my life. This is also my job on stage as an actor.

For instance, at a coffee shop I might have a conversation like this:

Me: Hi, how are you doing today? (Smile.) Can I please have a small coffee? Thank you so much! (If it seems like more conversation is needed, I’ll say:) Has it been busy today?
Barista: Any barista response.
Me: Oh yeah? Is it nicer when it’s busy or when it’s slow? Have a great rest of your day!

I always stick to the script. It makes things infinitely easier.

When I’m playing Edmond in King Lear:

Wherefore should I
Stand in the plague of custom, and permit
The curiosity of nations to deprive me . . .
When my dimensions are as well compact,
My mind as generous, and my shape as true . . . [?]

It’s really no different to me. They’re lines I’ve learned, that I say often, but I’m making you believe they are mine and they’re particular to this specific moment.

These all may seem like reasons why I should never be an actor. But acting is a dichotomy — a tension between what is safe and what is dangerous.

What is known and what is unknown.

What’s mundane and what’s exciting.

There is a tension between everything I am and everything conventional for an actor. This is the same tension that makes incredible theatre. No one wants to see something if it is too comfortable. Every performance should have a tension between what feels easy and what feels risky.

When a grand piano is gracefully lowered out of a window by a rope onto a truck, slowly spinning and dangling, the tension in the rope is what everyone is watching. In theatre, the performer is the rope, making the incredible look graceful and easy, making the audience complicit in every thought, every tactical switch. When the rope goes slack, the show is over.

I put my dichotomies to work for me. It’s about doing the work and being in control so the audience trusts you to lead them, and then being vulnerable and letting the audience see your soul.

The skill, study and training help create the trust. The challenges make the vulnerability. You need both of them. As a person with autism I have felt vulnerable my entire life — to be vulnerable on stage is no biggie.

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Sarah Scafidi and Mickey Rowe in Things I Never Told My Father at the Eugene O’Neill Theater Center.

With autism comes a new way of thinking — a fresh eye and a fresh mind. Literally, a completely different wiring of the brain.

Being in front of an audience of 500 or 2,890 people is easy for me. The roles are incredibly clear, logical and laid out. I am on stage and you are sitting in the seats watching me. I am playing a character and that’s what you expect, want and are paying for. The conversations on stage are scripted and written much better than the ones in my real life.

On the street is where conversations are scary. Those roles aren’t clear.

Sure, there are lots of things working against me at any given time. For example, one in every 68 American children has autism. If all things were equally accessible, you would expect to see one person with autism in every 68 employees of any company in the US. Because small talk is so important in current interviews and auditions, this doesn’t happen. But it would happen if things were more accessible. And we can help to make it what we see in the future by acknowledging and realizing not everyone’s brain is wired the same way — by acknowledging neurodiversity exists.

A version of this post originally appeared on HowlRound

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