Being sick is rough. It is all day, every single day. Sure, some days are better than others. I even have brief moments where I temporarily almost forget I’m sick. Then, inevitably, reality hits with a vengeance. I have one child who doesn’t have Ehlers-Danlos syndrome and one child who does. Duty calls. If I have a particularly rough time, life continues. The world continues to turn. Sports practices, homeschooling, nursing, caring, comforting, Boy Scouts, homework, housework, bills, groceries, quality time, and everything goes on. My obligations and life did not get the memo.

 

I really don’t feel well. In fact, most of the time, I feel practically wretched. There are days I drag myself into the shower, drag myself to brush my hair, hold onto walls to keep from falling. There are days I must tell my sons that the walk at the park just cannot happen that day. There are so many days that seem to never end, brutal days full of exhaustion, pain and struggling.

There are also bright days. There are days I find myself laughing so hard I can barely breathe, despite feeling like I could keel over. There are days I amaze myself by simply carrying out the duties for the day successfully. There are days I look into my children’s faces and see enough innocence and hope to carry me through. There are days when I truly fool everyone around me.

In all, despite there being so much struggle, I wouldn’t change it for the world. I cherish each moment, because I know how hard life can be. I do see the other side, the sun through the storm. I see the same beautiful struggles and triumphs in my sons and in what my family endures.

It is a choice to see the good. It isn’t always an easy choice to make, but it is certainly remarkable to see.

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Thinkstock photo via AndrewSoundarajan.

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Preparing for the birth of my boys, I read all sorts of conflicting articles about what was best for my babies. Some typical topics
included breastfeeding versus bottle feeding, cry-it-out versus attachment parenting, and organic food versus non-organic. I wasn’t prepared for the shear amount of difficult decisions or for the upcoming criticisms of whatever I chose, but it was clear I wasn’t the only mother having to make those choices. All mothers were.

However, when my youngest son became chronically ill and diagnosed with Ehlers-Danlos Syndrome, there was a loneliness in the decisions that I had to make. It was completely overwhelming.

When should I take him to a new specialist? Are the medications sufficient? Will we financially be able to cope with the medical bills? What about side-effects? Could he tolerate another invasive procedure, surgery or test? Does this accommodate his special diet? When will he use a mobility aid? Should I let him play on the park playground? How do I teach him about himself and how do I teach others? Is he having a quality childhood? When do I worry? When do I not worry?

 

As if these never ending decisions aren’t enough to handle, the unsolicited advice and criticisms took on a life of their own. I would get personal messages about what type of new and improved supplement my young son should be taking. I was told he shouldn’t do this physical activity, but he needs plenty of exercise. I was sent many diets and programs. It was a solid trail of “you should” or “you shouldn’t” or “why don’t you.”

I knew the “solicitors” weren’t meaning harm. I knew that, but what I really wanted was a hug, or reassurance, or someone to go to lunch with to take my mind away from it all. I think sometimes this “advice” originates from others wanting to do something to help. Friends and loved ones can feel helpless and want to do something, anything.

Well, here is something you can do: listen, ask questions and be present.

Please don’t run or retreat, and don’t offer unsolicited advice. As mothers, we do the very best we can for our children. It isn’t easy to have a sick child. There isn’t a handbook or golden rule — as much as I sometimes wish there were.

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Twenty year old me was the life of the party. Yeah, I had a 2 year old son at home, so most of my time was spent working, taking care of him and school. However, those rare moments out were spectacular. I owned the dance floor and easily took full advantage of a girl’s night out. I was vibrant and boundless energy poured out of me like a seasoned rockstar. I’d grab a chance to jump on stage and dance for hours, letting the vibration of music shake my bones until I couldn’t stand any longer.

As 20 turned to 30, those nights grew fewer and farther in between. I noticed a change in my tolerance for being in a crowded place, the sounds were too loud and the smoke made my voice raspy. I was in denial that I didn’t quite enjoy it any longer. I did it though, because that’s how my friends knew me and that’s how we got together. We would bar and club hop, and dance our asses off. I’d pay the brutal price for the next week – but heck, it was worth it!

At 35, I may as well have turned 70. Entering a club felt like torture. The change in those five years were horrifying. All my prior manageable and hide-able symptoms were on display for all to see. Well, not physically, as I still looked like I was in my 20s. Inside, however, my body was rebelling from years of over-use, a bad diet and an un-nurtured rare disorder. I had just announced my health journey with my friends, but they didn’t grasp it since I still looked healthy.

I felt obligated to attend everything I was invited to, even if that meant putting myself in a place where it would take weeks to recover. At first my friends were disappointed and even upset, which crushed me. Then I realized something important. If they cared enough about me then they would realize that I’m not 20 year old me anymore. I won’t apologize for it again and I certainly won’t apologize for saying no.

The writer sitting on a couch, making the "peace" sign.

When I can’t or don’t want to do something, I will simply say, “No thanks, not this time. Have a great time though!” When you deal with pain on a daily basis, a magical thing happens – your time becomes so precious. I’ll happily say yes to the things that I can do, knowing I may need to cancel, but I won’t apologize for it.

I can’t control my Ehlers-Danlos syndrome or related illnesses and flares, so by saying I’m sorry shows that I feel like I’m at fault and I’m not. I didn’t choose this illness, but I can choose to say no when my body needs me to.

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Like most superheroes, I found my powers by accident.

On what was meant to be an epic sibling vacation in Las Vegas, I found myself unable to walk for more than 10 minutes. I had never experienced such agony. Before the day was done, my superpower revealed itself: the power of invisibility.

I could hide my pain, my fatigue, my confusion and no one could see it. On the outside, I look like an ordinary young woman. But on the inside, my bones shift and tendons stretch, causing painful dislocations and subluxing of various joints. With my superpowers, the power of invisibility, I can continue to look like an ordinary woman.

Of course, with great power comes great responsibility. I can only use this power for the good of others, to save them from feeling pity, or to save them from their own despair. Invisibility is not to be used for my own gain. I must adhere to the superhero code, do not deceive others so that I may gain favor or sympathy. I must not take advantage of those who come to my aid. And of course, I must help others as well as I am able.

I was gifted a second superpower, but only if I follow the code. This second power came through perseverance and constant training. This power may only be used in the presence of those who need it the most. To the people who struggle with hardships and heartache. This second power is the power of “revelation.” I can reveal my own suffering to them, show them the way of embracing pain and frustration, and change it into strength and courage. This gift is far more powerful than super strength, or super speed. It is a gift that I can give to others, and they can also give.

There are those who will try and take that gift from me, the naysayers and the envious. I must guard my gift of revelation from them and use my invisibility gift wisely. With a smile, I face my enemies using only my quick wit and well-practiced art of socializing. I battle my way through enemy trench lines, while seemingly enjoying myself at small gatherings and parties. My invisibility is both my power and my cloak. No one can see the superhero underneath the shroud of invisibility. This hidden power can only be stopped by absolute denial of truth. Only then can my enemies see the strength of my powers. They see my power of revelation, my invisibility, and they cower before me. They will come up with names to distract me, “The Hypochondriac,” and “The Exaggerator.” Little do they know I have the power of science at my side, and my own little sidekick, “The Truth.”

Of course, if I let my enemies know that their words are hurtful, then they will increase their attacks. As long as I remain true to myself, and keep my hero conduct, they can never truly hurt me. Words are only as potent as their receiver keeps them. In the end, the naysayers and the envious only hurt themselves. As I spread the gift of courage and strength, they spread the idea of doubt and weakness. Do not believe them, our strength makes them feel weak and our courage makes them fearful. Be wary of these foes, but do not stoop to their diabolical tactics. Heroes hold themselves to a higher standard of conduct, whereas villains care not for the moral high ground.

In the end, it all comes down to how I see myself. I could see myself as a young woman with a painful and scary chronic illness. I could look at my cane, my braces, at my own frailty and let myself feel pity and wallow in it. I choose not to. I choose to fight my battles every day, and inspire others to do the same. I choose to be stronger and do whatever is in my power to live each day to its fullest.

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As I sit here in the infusion center, on back-to-school eve, I feel a mix of emotions. Hopeful, excited, scared and even a bit depressed to see summer go.

Yes, I love summer. Always have. But I have really fallen in love with summer since I became sick with EDS and POTS. The last few years, I have honestly become quite depressed as Labor Day weekend rolled around and I knew the slow mornings of coffee and watching the Today Show were coming to a halt for another year.

 

The feeling of “back-to-school depression” has always both bugged and confused me. I love my job as a kindergarten teacher. I love that with accommodations, I have still been able to teach part-time after getting sick. I love the feeling of starting the year with a fresh slate – with 25+ children new to school, wide-eyed and ready to soak up every little thing that school brings. I love starting the year with a room full of strangers and ending the year with a group of children who become one giant family over the year.

I love my job. So why the depression? Why the anxiety and, at times, the panic?

It hit me the other day when I was doing my home rehab routine on the treadmill. When you are sick, you no longer have the luxury of being carefree anymore. Every little thing takes planning and pacing. From taking a shower, to spending time with family, to scheduling doctor appointments, nothing can no longer be on a whim. Having a chronic illness means having to learn to live with the unexpected. It means having to prioritize and say, “because I went to that doctor’s appointment, I don’t have anything left in me to clean the house, cook dinner or spend time with a friend.” Having a chronic illness means walking the tricky tightrope of living how I want to live and not overdoing it and making myself sicker.

As I continued on that treadmill, I thought about it. As a teacher, the summer months are the closest to carefree I will ever be. Most of the time in the summer, I can go to a concert without having to worry about functioning the next morning. I can miss a day without a nap without the fear of having to take the next day off because I can’t get out of bed. In the summer, I can wait to shower until after I have been awake for a while, which helps me not throw up afterwards. In a way, summer is the closest I come to feeling like a “normal person,” and even though I love teaching my babies, it makes more sense now why I grieve it.

The summer ending means back to intense flu-like fatigue, fogginess, nausea and joint pain. It is back to fearing that if I overdo something just one little bit, I won’t be able to work for a day, a few days or even longer. It is the pressure to be at my best for those children who crawl into every nook and cranny of my heart during the year. It is back to a strict, regimented schedule of teaching, physical therapy, home rehab, doctor appointments, infusions and naps.

That is not meant to be a downer. It is just meant to be real.

This year, since becoming conscious of why the mix of emotions, I am trying to take a different approach. I am working hard at thanking my lucky stars for the carefree summer memories I was able to make, and focusing my energy on beginning a loving, positive school year with my 27 new babies. When I feel sicker, or sad, or that feeling of depression creeps in, I am working on giving myself grace and time to readjust to the working life again. I am trying to consciously acknowledge that it is a major adjustment, it is plain hard and it is OK to feel these things. And I am making it a point to give gratitude…lots and lots of gratitude for an incredible summer, and for the fact that I have a job I can go back to, that I love, despite my illnesses.

As I sit here and type while I finish my infusion, I look around at some of the other patients. Many of them are too sick to do much else than come in for their chemo treatments. I am sure many of them who can’t work would give an awful lot to be able to. This brings me much perspective.

Tomorrow I have the luxury to go back to work, and welcome the class of 2030 to school for the very first time. That’s pretty incredible and quite the honor if you think about it. And although I feel butterflies and excitement, it’s alright that I also feel fear and anxiety. It’s normal. I’m human. I’m doing the best I can. No more fighting it. It’s OK.

I shall show myself grace as I begin this year.

Let’s do this, 2017-2018.

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Thinkstock photo via bowdenimages.


I am disabled. Over the course of the past year to year and a half, my health has rapidly declined and I have gone from an occasional (what I believed to be only) fibromyalgia flare to discovering I have had a silent stroke. I have general hypermobility joint syndrome which is a genetic disorder and one step down from Ehlers-Danlos syndrome hypermobility type, POTS, and most likely Sojourn’s and Hashimoto’s. Oh, I almost forgot bipolar disorder and anxiety.

In the beginning of this melee of physical dysfunction, I was extremely angry and I wasn’t a lot of fun to be around. Then I sat and had a talk with my brilliant daughter, who also has a conglomeration of diagnoses on the way. She taught me it is fruitless and hurts no one but myself. This advice seems obvious and simplistic, but when you are in the midst of the anger having someone else say it to you genuinely seems epiphanous. I opted to let it go for the most part, along with the friends I had lost along my journey of defining my chronic illnesses, and develop a sense of humor about them.

Chronic, meaning “continuing or occurring again and again for a long time” obviously meaning it wasn’t going away, I took my wheelchair and “cripple punked” it. I took zebra duct tape and wrapped all the metal I could find. I ordered a red umbrella holder for when I am at parks or out in the sun, and a insulated cup holder. I added a zippered pocket for the inside of the arm and I was all set to venture out and learn how to use my chair on my own without anyone pushing me. This was going to give me more freedom. I wouldn’t hurt like I do walking and wouldn’t get dizzy and fear falling.

The first day I took the chair to the gallery where I volunteer, I was met on the sidewalk by a friend who is also a “zebra;” she has EDS. She stood outside with her wheelie walker and I was in my chair trying to learn how to make it up ramps. I was leaning forward. You don’t lean forward. She was explaining how you lean back to let the front wheels pop up over the edge and continue to push. This one was a little steep and I am a big girl. I was struggling and she was standing there urging me onward.

A guy rounded the corner and you have to imagine what he sees… an overweight woman in a wheelchair struggling to get up a ramp and a little 5-foot young woman wearing a lot of braces with a wheelie walker cheering her on to get up the curb. He thought we needed help. He swooped in to be helpful and save the day. He was going to push me from halfway up the ramp onto the walkway. My friend then yelled at this guy “No! Don’t touch her! She has to do it on her own.” He threw his hands up and walked away. I laughed and told her, “It is getting really hard, you could’ve let him. It’s OK.” Her reply? “Yeah? Sucks to be you. Keep pushing.” I bust out laughing so hard she had to help after all.

It’s the little things now, like the t-shirt I found I want that says “I’m so tachy…” with the heartbeat line or the one with the wheelchair with flames that says “They see me rollin’ they hatin.’” Things that make me smile and I find funny make it easier to deal with the things that aren’t.

So laugh at our disability jokes. We are the ones allowed to make them, and if we make them around you, we are obviously comfortable enough with you to share that much and be that vulnerable.

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Thinkstock photo by Drante.

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