Moving Forward With Chronic Illness When the Destination’s Unknown

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When you decide to travel in your everyday life, you almost always have a starting point, a route and a destination. You pack for your trip. Shorts and bathing suits for Florida, and boots, tents and jeans for a hiking trip.

But what if you were given a starting point, a suggested route, but no destination? Just an endless amount of possibilities. You may need shorts or jeans, or both. You might end up needing a raincoat with gloves and a bicycle. You won’t know until you start your travels. Sounds adventurous, or pointless, or exciting, it depends on who you’re talking to.

Now imagine your trip was your life.

You were born and that is your starting point. You were fed the idea that your life would go as planned: school, sports, friends and extra-curriculars. Then off to college and then to get a job. Get married and have kids. Retire and grow old with your spouse with maybe a few bumps in the road. The end. So your parents and teachers and family give you the tools you’ll need for your life. They teach you to share, how to organize, how to speak, read, write, do algebra and how to find the units of energy in an electrified object if it’s 2:30 a.m. on a Saturday in October.

They give you the things you think you need, and most of the time it’s a success. They do the best they can. But what happens if you have your luggage packed, all of your tools in hand, and you get thrown a wild card and suddenly you’re in a place they never taught you about. Suddenly there is no order. You have no plan, never knowing where the next day will take you. There is no way to plan a year in advance, not even a month in advance. And now your tools are foreign objects, rarely used, but admired and longed to be useful.

At first it’s scary, but eventually you learn to stand your ground, how to land on your own two feet. You find yourself going with the flow. Expecting one thing, but being completely okay when it goes another. You learn to move forward, even when you don’t know where you’re headed. You find the beauty in life. All of the wonderful things become all more amazing. The glory outshines the pain and the colors are all the more vivid. You find joy in the illuminating colors in the sunset, and comfort in simple conversations with friends. Everything that used to be pretty cool is suddenly magical.

Now you see that life isn’t about the destination, it’s about the road that takes you there. You now don’t mind the crazy challenge of life, because it gives you a really awesome adventure.

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A longer version of this post originally appeared on Climbing Rivers.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability 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.

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How a 7-Year-Old Convinced Me I Was Going To Be OK

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She was just a little girl, but I saw myself in her. I saw myself suffer as she suffered. I saw myself hold on because she held on. I saw myself become hopeful because she was hopeful. I saw myself smile because she smiled. I saw her save me through her bravery.

Eden has Ehlers-Danlos syndrome (EDS), the same genetic illness as I have. It’s rare; Eden is one of the only people I know with my condition. Ironically, our skulls decided to fall on top of our brain stems at the same time. A week after doctors first found out I had brain-stem compression, I heard Eden was getting surgery for the same problem. To the average person, this coincidence may seem strange. It may also seem strange that we had the same doctors and needed the same surgery. But anyone with our condition would understand. With EDS, our problems are predictable. But it’s still like a roller coaster. You get in line for the ride and then when you go upside down, you’re still shocked and cannot stop yourself from screaming. I’d given up any hope that this ride would come to an end. The doctors told me,“Well if we fix you now, you’ll just be back on the OR table in a month. You will still fall over. We can only stop it from getting worse. We cannot reverse the damage.”

I didn’t want to see any more doctors; I didn’t not want to even try. I was scared, and I didn’t know what to do. Eden and I were in the same situation — except she was 7 and I was 13. I’d given up, and she had not. I’d given up smiling, I’d given up laughing, I’d given up living.

Eden saved my life. Because she made me want to fight again.

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The day I visited her in the hospital, we talked; she smiled and laughed. She held my hand and said, “You will be OK because I’m OK.” I looked into her eyes and saw nothing but strength. I saw a little girl with her own problems who still cared about others. I saw a real superhero.

One of the biggest challenges in having a chronic illness is that many people cannot even begin to understand what it’s like. I knew I could die at any moment, I knew I could become paralyzed. I felt like the world didn’t care. That day, Eden showed me you only needed the little things. In many way, she made me feel like a fool. I’d been worrying about how other people saw my struggles and their judgments. Eden proved to me that none of that matters. The only thing that mattered was that we had each other. The only thing that mattered was that we could hold each other’s hands.

The screws in my brain, the surgeon, the doctors, the nurses, they all take credit for saving my life. But in reality, Eden is the one who saved me.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about 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.

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To the Only Person Who Believed Me When I Said I Was Sick

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Weddings — they’re beautiful to witness. How would I describe a wedding? A wonderful new beginning. The joining together of two paths. Two lives and situations becoming one. This past weekend, I got to go to a wedding. Not just any wedding. The wedding of someone important to me, the wedding of my second grade teacher, Amy, or, as I used to know her, Mrs. Read.

The wedding was on a whole new level of beauty. Amy looked absolutely stunning. She was wearing a blue dress with her hair pulled back and a diamond headband. As she walked down the aisle, I was the happiest person on the planet.

When I first got sick, nobody believed I was in pain. My leg felt like it was on fire, and I couldn’t eat anything. The doctors offered no help; all they did was tell me I was faking. There was only one person who believed me, and that was Amy. She pulled me aside one day and said, “Karen, is this real?” I looked at her and told her about the pain I felt. I was 8 years old, and I didn’t know what to do. I didn’t have the mental capacity to understand what the doctors had been saying, and even if I had, I couldn’t have done anything about it. I was as lost as a sailor with no place to sail.

I remember thinking that Mrs. Read was my angel. I could trust her more than anyone else in the world. I knew I could trust her to show me the way. And she did. She was my advocate, my mentor, my shoulder to cry on. She was all I needed, and all I will ever need to get through pain. As time went on, she helped me find the right doctors, and before I knew it I was moving from Texas to Boston for treatment.

The day before I moved, Mrs. Read and I went to get our nails done together. We got these special towel treatments on our legs that felt so good on my hurting limbs. Then we went out to a craft store and bought these little charms to remind us of each other. We’d never really be apart, and they’d also always bring us luck. I still have mine.

Even after I moved, Mrs. Read never left my side, and like an angel, she was always there for me when I needed her. All I had to do was think of something she said, think of how she helped others believe in me, and I knew I’d be OK. The second time I got sick, she once again was there for my family and me. I couldn’t stop fainting and having seizures. Mrs. Read got on a plane and flew out to help my mom take me to some doctors. I was scared. If this didn’t work, I had no idea how I was going to pull myself together. I had no idea how to make myself better.

I remember the words that came out of the doctor’s mouth. How he told me it wasn’t real and how I yelled at him in an attempt to stand up for myself. I remember how my heart sank and how I felt like I’d been crushed. I remember how I cried. I remember all the tears that came flowing down my face. And I remember Mrs. Read…

She hugged me and said what I’d never expected anyone to say: “Karen, never in my life have I been more proud of you than when you put that doctor in his place.” Once again, she’d given me the gift no one else had been able to give me: hope. The gift of showing me the light, the gift of love, the gift of remembrance that I would never be alone.

After all these years, I found myself at Mrs. Read’s wedding. After all the times she helped lead me to happiness, she’d found her own. And therefore, not only was this a wedding, it was something that meant the world and more to me.

One thing I should earn an Olympic medal in is complaining. All I ever do is complain. And sometimes, I can easily lose sight of what’s truly important in life. Sometimes, I will get so overwhelmed in what’s going on with my health that I lose sight of what really matters to me.

And so, I found myself three days before I was going to have a major brain surgery at Mrs. Read’s wedding. Suddenly all of the negativity I had bottled up inside of me melted away like an ice pop in the summer. It was a beautiful, perfect wedding.

When it was over and everyone began to leave, she hugged me and said what she always says, the perfect thing. She wrapped her arms around me and said, “You’re going to get through this surgery like you always do, with that spunky attitude, and along the way, you’re going to touch and reach everyone that you come in contact with because that is what you do wherever you go. Even those little f*ck yous you throw around — they reach people. And you’re going to change so many people’s lives.”

As she spoke, something inside me switched on, tears filled my eyes and my legs felt like Jell-O. As I fell apart, I was given strength, and I thought, “I’m going to get through this surgery better than any other surgery.” Of course, I was still scared. I was three days away from a doctor cutting into my brain, but I was given the greatest gift a person can be given, I was given a breath of fresh air.

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I got on my plane a whole new person, and I cried like a baby the entire ride. Some kind of wall inside of me broke, and I cried a river of expired tears. Sometimes, when you’re sick and you’re just taught to be strong, you begin to forget. You forget that you’re a real person who feels everything that every other human feels. You forget that you can cry. You forget that you’re alive. You forget there’s sadness. You forget there’s anger. You forget that you can let go and you’re allowed to feel. You forget your humanity. These are always things Mrs. Read reminds me of.

As a child, I always thought an angel would be like a fairytale creature, a sort of ghost. I was wrong. I think we each have our own angels. I think we each have that one person who can always turn our worlds upside down. For me, that person is Mrs. Read. I always see her at the right time in my life, and she always pulls me together and sends me off. And this makes me wonder if we each have that potential to reach people. If we’d each open our hearts and be the best person we can be, can anyone be someone’s angel? Do we all contain the potential to help someone find their happy ending?

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New York Islanders Prove Some Things Are More Important Than Rivalries

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Karen Richards woke up after brain surgery groggy, tired and surrounded by hockey players.

The 15-year-old from Boston is a diehard Bruins fan. But on Thursday, March 12, five members of the New York Islanders stood around her. Karen didn’t mind.

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Photo via Karen Richards

The teen lives with a roster of diagnoses including Ehlers-Danlos syndrome, complex regional pain syndrome (CRPS), craniocervical instability and gastroparesis. She’d recently transferred to North Shore-LIJ in Long Island, New York, to have a reservoir placed in her brain. When a few Islanders players, who’d been visiting the hospital, heard she was a huge hockey fan, they put team rivalries aside and paid Karen a visit.

“It was really nice that they came because sometimes the hospital can get dull. It’s a big, scary, loud place.”[Their visit] was something that made the hospital a little less scary and a little less cold and lonely,” Karen told The Mighty in an email. “I’ve really learned to appreciate the little things with my chronic illnesses, and the Islanders’ visit was definitely something that, although small for them, meant a lot for me.”

Hopefully, a meet-and-greet with her favorite Bruin players, Tuukka Rask and Zdeno Chára, will be in her future. For now, Karen works every day to remain as positive as possible while facing multiple conditions.

“It’s hard to give specific advice for this kind of thing. Each person really has to figure out their own ways of dealing with their illnesses in an effective way,” Karen told The Mighty. “My general advice would be, fight as hard as you can, and never let a disease steal away those special moments in your life.”

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Why I Won't Let My Heritable Disorder Define Me or My Kids

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To the diagnosis that changed my life but doesn’t define me:

When I first heard your name and started to learn about you, I actually felt a twinge of excitement. That’s right, excitement. For more than six years, I had chronic and escalating pain in my joints, experiencing numerous dislocations and subluxations – literally from my head to my toes. Your name, Ehlers-Danlos syndrome (EDS), didn’t scare me at first. It didn’t make me angry or sad. I had felt angry, sad and confused for years; what I felt was, for the first time in a long time, relief. Your name gave me back my sanity, my faith in myself and a path to follow.

For years, doctors brushed off my suffering as either an exaggeration or delusion. No one could visibly see why my body was failing to stay together, and no tests were able to show why I reported such high and chronic pain. So when the geneticist told me I had this heritable connective tissue disorder — that essentially the collagen that compromised all the tendons and ligaments in my body were faulty — I felt relief.

Those around me certainly didn’t share my initial sentiment. My family was confused, angry, sad, in denial and even grieving for me and themselves. They looked to me with quizzical expressions trying to understand why I wasn’t screaming from the rooftops. Don’t get me wrong, I had my days when I would wonder, “Why me?” but I knew there was still so much to learn about EDS and so much to be thankful for. I had a loving husband, two beautiful children and a career that brought me joy.

After years of inexplicable medical issues, it all was making sense to me, and for a good long time that was enough. However, this past year, the definition and clarity you gave me started to turn to anxiety; after all this is a heritable disorder — one that has a 50/50 chance of being passed to my children.

Now EDS, this is where my appreciation for you is being tested. I watch my children play in the yard, on various sports teams and with their friends through a lens colored with splendor and uncertainty. Every injury they have, every medical problem they encounter is viewed through the eyes of EDS. Is this just a kid being a kid? Is this painful injury going to follow them for the rest of their lives? When I’m having a bad day, what does that signal to them about their future? Am I strong enough to make it through each day one at a time? Am I strong enough to carry the weight of you for them?

I admittedly am not the best at self-care, but with my husband at my side, I know we will not stop fighting until we’re sure they’re protected, they have the best care and that we wrap around them a medical community that will support them, guide them,and help them to live the beautiful lives they’re meant to live.

So while in those early months I let you define me — I reveled in it really — I will not let you define who I am or who my children are/will be. I’m not broken, as so many are quick to say. I’m not weak or fragile. I’m strong. I’m real. I’m whole. You’ve changed us, altered our views of living life, enhanced our appreciation for the small wonders of being a family and being together, but you will not define us. Saying your name doesn’t scare me; you’re a part of who I am and what I’m still to be – but you aren’t all of me. You will be a part of who my children are, you will teach them internal strength, courage and kindness toward others – for we never truly know what’s going on in the shadow of people’s lives. You’ve changed us, but you don’t define us. I am an EDS warrior.

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For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

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Artist Takes Glamour Shots to Combat Stigma of Chronic Illness

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Karolyn Gehrig, a Los Angeles-based artist, is the inspiring woman behind the hashtag #HospitalGlam.

#HospitalGlam is a campaign Gehrig started to celebrate her body in the midst of the pain and uncertainty of her chronic illness.

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Via Instagram

In 2003, Gehrig was diagnosed with Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder characterized by joint problems and skin tissue fragility, according to the Ehlers-Danlos National Foundation.

She began taking glamorous photos during the long hours she spent at the hospital for treatment and testing. When she started posting them online with the hashtag, other people began finding strength in her posts and joined in.

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Gehrig told Buzzfeed that the simple act of dressing up and taking the photos helps her reassert her own power over her body. Sharing the images spreads awareness and reduces the stigma associated with illness.

I want everyone who goes into a doctor’s office to feel empowered and that they can be themselves,” she told the outlet. “There’s nothing about being disabled that I should be ashamed of.”

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Via Instagram

“I care for myself and I have no shame attached to the health issues that make up my life and the lives of the people who mean so much to me,” Gehrig wrote on Instagram. “Taking care of ourselves is paramount and no matter how you feel when you walk into that office, know that you are f*cking flawless.”

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For more on Gehrig and #HospitalGlam, check out her Instagram and Tumblr.

h/t Buzzfeed

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