Anna at camp looking over the water

Why I'm Grateful Paul Newman Created the Hole in the Wall Gang Camp

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Anna at camp looking over the water
The Hole in the Wall Camp.

I belt show tunes at the top of my lungs as we drive along a long, winding, wooded road. There is excitement in the air and joy in my heart, and I know I am about to have the best week of my life. I’m headed to a magical place where sadness is trumped by love and “no” is a word sparingly used.

I’m going to camp.

Now this camp is no ordinary summer camp. The story of the camp is not ordinary. The staff is not ordinary. The counselors are not ordinary. The campers are not ordinary. The magic at camp is not ordinary. Every single person and aspect of the Hole In The Wall Gang Camp is extraordinary.

At this camp, I’m also a singer, ukulele player, artist, writer and possibly the biggest “Hamilton” fan you will ever meet. I’m also living with Ehlers-Danlos syndrome (EDS) and many of its comorbidities. The list of medicine, infusions and various medical care I need on a daily basis is long enough to intimidate most experienced doctors and nurses. And for that reason, it’s difficult to attend most ordinary camps, which is why I’m a part of the Hole in the Wall Gang Camp.

In 1996, Paul Newman, the world famous actor, race car driver and all around incredible person, had a simple yet transformative idea. He envisioned a place where every child, regardless of their medical conditions, could have the experience of going to camp. He wanted every child to be able to let loose, meet other kids like them and raise a little hell. In 1998, after two years of hard work, imagination and determination, this camp was born. And the rest is history.

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Fast forward 18 years. It’s June 17th, 2016, 10:05 a.m. Our white van, filled to the brim with boxes of life sustaining equipment (and my ukulele, I can’t forget my ukulele), makes a sharp left turn off of a long wooded road. The only thing marking this important turn is the carved wooden sign stretched between the trees. We pull in, crossing the dirt dam at the edge of the lake, and I know I am home.

Familiar faces greet us with lit smiles and wide eyes that hold more than words can accommodate. “We’ve got a camper.” And with the affirmative “Bring ‘em down” on the walkie talkie, we drive to admin. More faces greet us at the administration building. Hugs and smiles and more hugs are followed by helping hands ready to carry my bags. There are three categories for where my bags need to go.

1. The cabin where I sleep. This is my blue duffel bag, one backpack and a pillow.

2. The infirmary. This includes three large cardboard insulated boxes filled with seven days worth of life sustaining IV bags, and one more gigantic cardboard box for all of my supplies and medications. (Otherwise known as the things taking up all the space in our van. But it’s vital to me being alive, so I guess it’s fine.)

3. Stays with me. This third section contains two things. The bag I’m attached to currently keeping me alive, and my ukulele. Like I said, I can’t forget my ukulele.

As we walk into the infirmary, the paint on the mural surrounding me depicts the magic that happens at camp.

And the people around me? Well, they are the magic.

We get settled and organize my things with my nurses. I’m in the red unit this year. As my mom and I go through each medicine and procedure I need while I’m at camp, I’m surrounded by more red trinkets and decorations than I’ve ever seen in my life. Well actually that’s a lie, I got to look at equally as many green things in the green unit’s room last summer. But you get the point.

I meet with this summer’s dietitian. (Only the cool camps have dietitians, am I right?) We go over my oral diet: If it can drain out of the tiny plastic tube in my stomach, I can eat it. If it can’t? Nope. My diet this week (and every other week) consists of chocolate frosting, mashed potatoes drowned in gravy, water, hard candy, popsicles, chocolate milk, juice and frozen Gatorade. Yum. The wind blows in my hair as we ride away from the infirmary and to cabin circle in a golf cart. There is no need for wheelchairs at camp when we have golf carts that can seat a whole cabin of campers.

Blue, yellow, red, purple, green. Each unit is tucked into a nook of trees. They contain three cabins, each cabin with eight campers and five counselors. These cabins hold so much more than people. They hold friendship. They hold laughter. They hold tears, and the most precious memories of countless campers and counselors alike. Most importantly, they hold the feeling of inclusiveness and love that you feel knowing you are surrounded by people who understand you.

Camp is the only place I know besides the hospital where you are surrounded by people who don’t think it’s weird to have the long, protruding line up your neck where your central line is, or to have to take handfuls of meds multiple times a day. Need to eat through a tube in your stomach or your heart? No biggie. Because each and every camper knows their life is a precious gift that has to be fought for. We all know our lives cannot be taken for granted and often do not go the way we planned, but are still amazing and beautiful.

Many of the counselors and staff know this to be true as well. Some of my favorite people at camp are the camper turned counselors, and this summer I got to meet the first camper turned nurse. Seeing people like you be a part of camp their whole life is a feeling you can only understand at camp. You see people like you thrive and not just survive.

In the center of it all at camp, there is a flagpole that proudly flies the camp flag. At the first night of each session, camp has a unit fire drill contest that ends with raising the flag. As it is raised, we sing one of my favorite camp songs that shows the understanding and connection each camper, counselor, and every single member of the Hole in the Wall Gang Camp has:

“This joy that I have,
the world didn’t give it to me.
The world didn’t give it,
the world can’t take it away.”

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5 Things Chronically Ill People Would Love to Hear

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As a person with a rare chronic illness, there are times when I feel like I’m living apart from most other people in my life. Even my close friends, family, and co-workers are living day-to-day lives so different from mine. But then I remember, all of our lives are different.

There have been many times when someone manages just the right words to bridge the divide and every time it happens, it touches my heart! If you’re living on either side of that divide — as a person with a chronic illness or as someone who loves them — you’ve probably had the same experience.

Here are a few of my favorites:

1. “How are you…really?” Many people dealing with pain and illness on a chronic basis have learned to put on a mask of “fine-ness.” They say they’re fine or feel fine even when they don’t. We don’t mean to be dishonest, though. For me, it just means, “I’m hanging in there! Things are OK.”

But sometimes I just like to have an acknowledgement that I don’t look quite right or something seems off. One friend says she can see it in my eyes. Another can tell when I walk more gingerly or search for words. I don’t need them to question me every day, but I do appreciate it when they notice a bad day and care enough to ask.

2. “I looked up Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS) (or name your illness here) and I read about it.” The first time a friend said this to me, I was speechless! It never occurred to me anyone would take the time to look deeper into my disability. When someone says they care enough about my life to research my illness, I know they can see me as a whole person and they want to understand. A variation of this one was a time when I read an article on Pinterest about things to say to a friend with a chronic illness. I sent it to an empathetic friend to show her how much she had mastered all ten suggestions. When she replied she’d read the article months before and so she’d sort of “cheated,” I couldn’t have been more grateful. She had gone to the trouble of looking for my point of view.

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3. The next one was a stunner. During a recent phone call with my brother, I was talking about a dislocation. His reaction? “What does that feel like?” It was tough to describe, but I tried! What a great question! All of a sudden it was clear to me how much he cared about me and about my experience with this specific pain. He’d gone beyond the idea of chronic illness and just reached in to understand how it actually felt to be inside this body. I made up my mind to try to remember to do that for other people, too.

4. Another personal favorite is being told to “Just do as much as you can.” In other words, your contribution matters, but it’s up to you to decide how you want to join. It’s hard to be told you don’t have to bring food to the potluck or clean up after the picnic, but it’s great to be given the freedom to determine how to be involved. I hear this all the time from a friend who happens to be my boss. When it’s a tough day or I feel like I’m not functioning at 100 percent, I can get really impatient with myself. She reminds me my best on that day is enough. That is a priceless gift.

5. Finally, from my experience, there are times when the best thing to say is nothing at all. There is a time for silence. Maybe I’d like to try to lift a bag of groceries you might think is too heavy. If it is, I’ll put it down or ask for help.

But if you tell me not to do it, you’re missing a try for independence I might really need. Friends will often offer to help, but sometimes I like to say no. It reminds me I’m capable.

Another time when I appreciate silence is if I’m having a hard time selecting the right words. The gift of silence allows me to find the words I want and to make my point in my own time. When a friend does that for me, I know my opinion matters to them. They think what I have to say is worth the wait!

Each of these conversations — and a hundred others — mean the world to me.

They give others a way to connect with me as an individual with value, opinions and a unique set of obstacles. It’s probably true that many people in my life have no idea how my rare chronic illness affects my days. I know there are people with whom I interact who have no idea about my EDS or POTS —and that makes me happy. Not everyone needs to know — just as I don’t know about the personal lives of everyone I meet. But I will work to be more like my friends who have had the wisdom to communicate these ideas and so many other empathetic thoughts. I, too, want to ask and say the things that will let them know I want to understand them better, too.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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Why My Chronic Illnesses Make It Difficult for Me to Get Out of Bed Every Morning

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Every morning, I wake up and refuse to open my eyes for a few moments. I believe if I don’t open my eyes, then my reality may fade away.

This doesn’t last long, though, as the pain soon sets in along with reality. But I’m also excited because I realize during the time I was asleep, I may have received messages from fellow spoonies. As I respond to them with a smile on my face, I dread the inevitable — getting out of bed.

To get out of bed means to stretch out my legs and anticipate the dislocations to come and relearning how to walk every morning. While stumbling out of bed, my postural orthostatic tachycardia syndrome (POTS) kicks in, and soon I’m blacked out on my floor with some joint out.

At this point, I consider giving up. I consider getting back into bed and never getting out again. I foolishly believe this will stop the pain and my reality. After a few minutes of this, I realize my ideas are ridiculous, and I become determined to get up. I grab onto whatever is nearby, whether it’s a night stand, the wall or the bed and hoist myself up. I’m beyond proud of myself. I’m proud that I not only got out of bed, but resisted the urge to go back to bed.

Then comes the dreaded shower. I will spare everyone the details of what goes on in the shower, but I’m a mess once I get out. The dysautonomia kicks in, and I often lie on the floor in my room, wishing I had time for a nap. I finally drag myself off the floor to do my hair and makeup, but the morning is essentially a drag with chronic illnesses.

So many people are sluggish in the morning, but Ehlers-Danlos syndrome (EDS) takes it to a new extreme with breaks, braces and chaos. I wish others knew how difficult it is to get up in the morning as a person with chronic pain.

We’re not lazy. We need breaks, help and motivators, but we will get up eventually. Those of us with chronic illnesses don’t give up; we take the day by storm.

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What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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What My Ehlers-Danlos Syndrome Feels Like as I Type This Blog Right Now

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Right now as I write this, the words are morphing across my vision as they’re added to the page; a dizzying tango alternating from being blurry, to doubled, then perhaps wavy, almost as if they’re sitting out on the pavement in the hot, summer sun. I often have to close my eyes to give them a break and also make sure their little muscles are tracking properly.

In addition to that, as I reach for each key, I often have to retrace my steps, hit the delete button, and then stop again when I realize I missed that key entirely. Instead of correcting my typo, I just added to it since my depth perception and proprioception are always a bit off. At least typing this story doesn’t have the consequence of running into the occasional wall, mistaking it for the doorway I thought I was walking through.

But I digress.

Back to the troubles of typing: I’m wearing my finger splints, but even with their help I have to keep in mind how frantically I’m typing, how much pressure I’m applying, what position I’m holding my hands in — I don’t want to dislocate a finger or some other bone in my hand.

If I sneeze or hiccup, I wince with pain and make sure I haven’t dislocated a rib. I can’t remember the last time I made it a day, or even a few hours, without a dislocation or subluxation (partial dislocation). I hardly ever sit at a desk because that simply doesn’t provide enough support for my back. I prop pillows all around me and keep thinking of what core muscles I need to engage to keep my spine aligned and my hips in place. My muscles spasm from the effort and I ache all over.

I am aware of a warmth and throbbing in almost all of my joints, a pain that feels like it’s spreading across every fiber of my tissue and muscles, because it is. There’s a defect in my collagen, the protein that acts as a major building block in the human body, and this makes all of me extra stretchy, which causes micro-tears to form and get bigger with every slip of every joint. The joints get more aggravated, the bones knock together and get bruised, tiny fractures start to appear, you name it. And the nerves nearby aren’t really fans of all that. The pain is always there, at various strengths, throughout my entire body.

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Guess what?

All of that is background noise compared to my most prominent symptom. My head is too heavy. I can barely hold it up. And when I do, I am drastically more dizzy and lightheaded than when I don’t. I feel this weird empty feeling at the back of my head and near my forehead — an odd sense of pressure — almost like I’m really far underwater, or in a big, echoing chamber. I feel disconnected from my limbs. I feel like I’m falling backwards, or floating upwards, or a bit like there’s an accordion in my head, stretching and squeezing unpredictably.

That little bump right at the base of my neck, you know that place where it stops being your neck and turns into your back? It feels like someone has their hand placed there, and they are pushing down on me as hard as they can, applying all of their weight. On bad days, it also feels like two nails nearly the size of railroad spikes are being driven between my shoulder blades, right along each side of my spine. At the same time, I have that “fingernails on a chalkboard” sensation shooting up and down my entire spine, a sickening, inescapable sensation.

After each sentence I have to pause and support my neck with my hands to offer slight and temporary relief. I might need my neck brace to help me out for a bit. Even sitting for the time it takes me to write a few paragraphs can be too long sometimes, and I opt to lie on my side. I might try to continue typing with one hand — because I’m on a roll, dammit, and I don’t want to stop just yet!

Eventually I have to decide whether or not I’m physically capable of continuing with my writing today. Or maybe I’m feeling too distracted by all of this and can’t seem to get a proper train of thought out, and lay it aside for that reason.

This is what Ehlers-Danlos syndrome feels like to me on a typical day. There are other days where writing simply isn’t an option, where getting out of bed seems like a painful, impossible task (and sometimes it is, depending on whether or not I can move the left side of my body). Sometimes I have massive headaches and more prominent neurological symptoms and I need to make sure that I’m not leaking any spinal fluid. But even on bad days, I end up doing between 30 minutes and 2 hours of physical therapy, just to keep my body from falling apart so quickly.

Despite all this, I write. Because of all this, I write. I am not my Ehlers-Danlos syndrome. It is, however, a huge part of me. It is a part of me that’s been an uphill battle to accept. It’s something that has really shaped who I am as a person, what my career options are, what my free time activities are. It is something I’ve had since I was born. And it is something I will have until I die. It is also something that has always been a huge question mark to me, as well as most of my doctors.

But I want people to know what I’m dealing with. I want people to understand, or at least notice that there is a lot going on in my body that the untrained eye (or even the trained one) cannot see. That despite that, the struggle is real. Writing gives me this platform, this stage where I can let out my emotions, portray something, move people, get them thinking.

I want there to be a day where I don’t have to explain my genetic connective tissue disorder to a new doctor, but rather where more doctors will be able to identify it in other people and help them sooner than they were able to help me. It took over five years of actively searching for a diagnosis before I find out about my EDS, and that needs to change.

If I have to think about that much while simply typing on my laptop on a good day, imagine what it’s like for me to stand. To walk. To lift something that weighs kind of heavy (or kind of light even). To open a door. To pick something up off the floor. To climb stairs. To do laundry. To cook.

Are our definitions of an easy task different? Are our definitions of “lazy” different? All of those things take a massive amount of effort for me, and some days I simply can’t do them.

I’ve been called strong by many, and I thank them for their compliments, I truly do. I feel like I’m only as strong as I am because I have so many people supporting me and telling me what an awesome job I’m doing. But the number of times I’ve been called strong is practically non-existent in comparison to how many times I’ve been called other not-so-nice things.

I’ve been called lazy and weak by countless numbers of people. Crybaby. Attention-starved. Liar. Drama queen. Master exaggerator. The list goes on and comes from an arrangement of strangers, acquaintances, colleagues, friends, and even family. But all of these people have one thing in common regarding me: misunderstanding. And perhaps a lack of empathy. They have not felt what I feel. Maybe they don’t know my story yet. Maybe they can’t see my pain because I’ve learned to hide it with a smile. My experience is not what they experience, so maybe they simply didn’t know it exists.

I’d like to fix that. I want people to know it exists. A few other things would be nice as well: Acknowledgement. Acceptance. Respect. All I ask is that you just try and step into my orthotically enhanced shoes and see things from my perspective before you make a judgement of me and my character. I will do the same in return.

Thank you for reading, and 10,000 more thanks you’s for taking the time to look at life through my eyes for a moment.

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The Pain of Losing My Best Friend After I Became Ill

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She was my best friend. She was my sister. She was my constant. Yet in my time of need, she left me. She stood up from the lunch table and called me a faker. Not only did my health go downhill, but so did our friendship. My Ehlers-Danlos syndrome turned my life upside down. My future is now unclear, and simple tasks have turned impossible. I always assumed she would be with me through this roller coaster of a diagnosis. Yet, in my time of need she walked away.

As I walk through the hall I hear whispers. Whispers of “Did you hear she is faking?” and “She can walk, what’s with the crutches?” These whispers don’t bother me, except when it’s her. I hear stories of her calling me a faker, a liar, and disregarding my illness. While I take these with remarks in stride, they feel like a stab to the heart. The girl I used to trust with my life has turned into the girl who completely disregards my life. This falling out in the lunch room hurt more than any dislocation could. With dislocations, pain medication can help, but nothing can help this.

There was a light at the end of the tunnel, though. My best friend, Isabelle, pulled me out of this dark place and taught me how to trust again. She has listened to me retell this story to her on the verge of tears, and she has been the one whose shoulder I can cry on. I feel happy to be out of that toxic relationship, but it’s still hard sometimes. I often see my old friend with others and yearn to warn them. I don’t warn them, though. I have realized they aren’t in the same situation. Those people who befriend her aren’t ill. Those people can go to amusement parks and play sports without screaming in pain. I have learned that some people just cannot handle going through what I’m going through with me. These people may be great friends to those in good health, but toxic to those in bad health.

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two teenage girls wearing black shirts with arms around each other
Kaitlyn (left) and her friend Isabelle

I am here to testify that there are people who can be good to you when your health is horrible to you. Almost everyone with a chronic illness has lost a friend to their diagnosis, but these tough times can also strengthen relationships. The real friends make it through your rough days and hold your hand all the way through it. While my illness may never get better, I now see that other parts of my life can. Those of you with chronic illness cannot change your body, but I encourage you to cut ties with toxic friendships.

Losing a best friend may be painful, but finding strong bonds make the pain worth it.

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What You Don’t See Behind My ‘I'm OK’ Mask

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A lot of people say I seem to be a happy person. Others describe me as having a great sense of humor. Although I wouldn’t argue with these descriptions as I often have a big smile on my face, I am hiding a secret. I feel ill every single day. 

Because of Ehlers-Danlos syndrome (EDS), I get pain in my joints and muscles constantly. My loose ligaments mean I am prone to subluxations, which are partial dislocations, and can leave me in pain for a number of days afterwards.

I also suffer from autonomic issues, which are common with EDS, including gastrointestinal symptoms (similar to irritable bowel syndrome), difficulty regulating my temperature and a thudding heart. I also have severe anxiety disorder, obsessive-compulsive disorder (OCD), and I am on the autism spectrum.

So 9 times out of ten, you will meet me, and I will seem “fine,” apart from perhaps a groan of pain or a sigh that will slip out from behind my “I’m OK” mask. Behind my mask, I am probably feeling nauseous, dizzy and sore. I am probably worrying about something that will more than likely become a full-blown obsessive thought. I am probably in agonizing pain throughout my body. 

I think this is why people are surprised when they see my mask slip. On those days, I have to stop. I have to give in. I have to curl up in bed in tears, hugging a teddy against me.

I have to allow my body to recover from itself. I hate being bedridden, so I will always push myself to absolute breaking point before I allow myself a “sick day.” When I have one, you should know I am in a huge amount of pain, discomfort and generally feeling awful. Today has been one of those days. I am burnt out and spent most of the day sleeping. Tomorrow I will probably be the same. By the following day, you might not even notice there was anything wrong. 

I don’t want pity or people feeling they have to treat me differently, but I do need people to remind me to stop pushing through once in a while. To let myself recover so I can be well longer. But until I hit that point, there will always be a big smile on my face. 

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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