The Art of Maintaining Grace

I would like to first point out that this post took a lot of guts for me and it's been a long time in the works.  I am a private person in general, so the fact that I am attempting to tell my story in an unmasked and unfiltered way to a mostly unknown audience is a scary endeavor.  I realize that this is wholly my story and may or may not represent the experiences of others.  I've taken this leap and I trust in the notions that I am not alone and that others will choose compassion over judgment.

Over the years, it has been very difficult to express my journey.  Discussing the intricate and personal details while in the throws of physical discord is particularly defeating to my spirit. On the other hand, when I am having a wonderful day, I find it difficult and unappealing to shift conversation to to such a mirthless subject that usually renders feelings of defeat.  To that end, I feel like there is never a voice.  I am either muted by the pain or subdued because I don't want to let the speak of pain seep in and demolish a perfectly pleasant day.

I understand that this dynamic disallows others to permeate this barrier and really see me.  I am shaped by this beast that is sometimes greater than I.  

It is a blessing and a curse that EDS (for the type and symptoms that I express) is an invisible disease.  At times I count my blessing that at least I don't have something small children fear or that others may have made fun of during the formative years of middle school that were treacherous enough for all of us without an active reason to be teased.  Other times, I wish people could see the pain.  It can be very alienating to feel trapped inside a body that seems to both resent and torture me with no evidence to the outside world.  I have seen illustrations from other fellow EDS'ers that try to explain it visually. (I use the term EDS'ers out of endearment.  I love and respect others who share my path)

I'm not sure I understand the butterfly, but I definitely see where they were going with this post.  I do not have the photo credit for this one.

I received this one from a dear friend of mine who shares the same journey.  I also do not have the credit for this one.

The second photo speaks more to me.  While I do think it would help if the the world could just see why I'm particularly quiet one day or not appearing to be myself, I don't exactly want to wear a sign on my forehead either.  

Awareness is a better way of coping.  That is why I vow to be a bit more open about EDS in 2015.  I can't say I'm ready to start shouting it from the top of Camelback Mountain, but I should probably have more conversations about it with the people who love me.  I know they want to know me and that includes the beast within. 

There have been countless outings when I have sat quietly observing my friends having a nice dinner and making interesting conversation, while I try to fake my way through it as though nothing is wrong.  I do this because it is the best alternative.  Take a moment to really think about it.  If I go home, EDS wins and I sit alone at home with nothing to do but think of the night that would have been.  I choose to stay out and try, hard as it may be, to enjoy life.  I love my friends and my life no matter what.  Staying out and ignoring the EDS is the best form of distraction.  

Sometimes, I try harder to fake it for the people who don't know me well because I see it as most confusing for them.  It's easier to briefly tell a good friend that it's a rough one and let them entertain me with easy conversation.  They don't hold it against me when I stop mid sentence because the pain interrupted and I suddenly forgot what I was saying.  I wonder if other people who don't know I'm in pain think I have some sort of cognition issue or that I've had a few too many drinks.

I have given every easy to understand excuse in the book to try to avoid actually explaining this in detail...  

I have a terrible headache.  This is very real and probably one of my most common issues.  I get terrible muscle spams in my neck that go up the side of my head into my jaw and around my eyes.  Sometimes the pain is so bad I throw up.  I also find it difficult to articulate myself when this happens.  If every other word is interrupted mid-thought by a reminder pain, I'm sure you can imagine how non-sequitur my thoughts feel.  It's also difficult to talk when your jaw is clamping down and forcing conversation makes it radiate to my neck and eye. Thankfully this doesn't happen to me very often.  Sometimes I feel like I go through bouts where it seems like it's all the time, but in the grand scheme, it's something I can live with.

Last year on my birthday, my husband tried to lift my spirits and get me out of the house just for a short lunch with friends.  I knew they understood, so I went.  Midway through their lunch (I couldn't eat- intense pain will do that), I got up and politely excused myself so I could go throw up in the bathroom.  That's when the pain reached a level that it didn't matter if it was my birthday or my friends were there.  EDS won and we had to leave.  Hopefully next year will be a better birthday!!

I threw my back out .  Back spams are fairly common for me.  I use this one a lot for random things like dislocated ribs and hip pain.  It's just easier to say something like this to a lay person than to get into details.

I'm just tired; I worked a lot this week.  Fatigue is always an issue for EDS'ers.  Theres a careful balance between keeping active enough and over doing it.

When do these things happen? When I'm mentally stressed, when I have stressed my body by working out or other physical activities, when I travel, sleep in a bed that is not my own, sleep on a pillow that is not my own, and my favorite reason... for no reason at all.  

I always tell the host or hostess that I had a wonderful night's sleep in their home.  There's nothing they can do and I don't want to burden him or her.  I have spent whole weekends away from home on about 5 hours of sleep because I toss and turn, dislocate ribs on hard mattresses and my shoulders are so loose rolling over on them usually pops them out.

I always wonder what impression I have left on the people who don't know me well.  

Did they think there was something wrong with their hospitality?  

Did they find me offensively quiet?  

Did they think I was disinterested?  

Did they find me unintelligible? 

Did they find it offensive that I appeared to try harder or look more natural talking to others?  

Did they assume that I do not care for them?  

I also wonder if I would be judged if others knew the truth.  I have, more than once, been asked, "Do you think you should have children?" Yes I do.  I feel my life has bee fulfilling and enjoyable.  I've had my challenges, but I can't imagine that if my mother had known that I would have challenges, she would have considered making a different choice.  There are many, far worse, ailments that can happen upon a child with EDS or not.  I also do not have a lethal form of EDS, so I am not prevailing that upon an unwitting life.  For mothers and fathers of children with VEDS, your decisions are not for me or anyone else to judge. 

Would they feel sorry for me?  I hope not.  I think I do pretty well.  Maintaining grace in times of struggle is a skill and an art at which I am forever attempting to master.  

Would they understand?  I have no idea.  

Would they recognize when I'm having a bad day and if they did, would that be a good thing?  I don't often like to think of myself as EDS, I rather just think of it as something affects me sometimes and I hope that others don't see too much of it in me.  That's why it has begun to be more politically correct to refer to a person with a handicap as such rather than a "handicapped person" or a child affected by autism rather than "an autistic kid."  Given the context, I'm hope it evokes thought.  This is meant to be positive, so I hope that if there's something you think you may have done wrong, smile to yourself and know that we humans don't always get it right, so now you can be happy to know that you are prepared for the situation that you previously were not.

I originally wrote this to post on EDS message boards as a way for others to share it and talk about the parts that speak to them.  Maybe it can start conversations with loved ones that other EDS'ers haven't been able to have.  

As I wrote more and more and more, I started to think that I should have the courage to share this on my own social media pages and see what happens.

If I have sent this to you directly, it's because I experienced memorable bad days in your presence.  It took courage to send this, but it also shows that I believe in your heart and I believe I can share this with you.  I have wondered these things.  I have thought to myself that I hope I made a good impression.  I have not known how to approach the subject.  Again, it's not easy to talk about in the middle of it and it's not the easiest conversation starter.

The Evolution

Since my diagnosis, my thoughts, feelings, fears and over all experience with my disease has changed.

The first I heard of a possible explanation for my symptoms absolutely terrified me.  I thought it was impossible that there was something so "wrong" with me as a human being.  Having a genetic disease made me feel like there was something awry with the central hardwiring of myself; some major malfunction that separated me drastically from everyone else I knew.

*    *    *

The Diagnosis

Being diagnosed by clinical presentation is not an easy, forgive the pun, pill to swallow.  To over simplify the experience for the sake of interest, the process goes something like this:

Doctor: Can you do this, this and this?  Do you have this problem?  That problem?
Patient: I guess so.  Sort of.  Yes.  Probably.  I'm not sure...
Doctor: Sounds like you probably have this disease.  Let's call it that.

I left the office and thought.  How ridiculous that there is no "test."  That was the test and the best he could offer.  I thought it was crazy to call that a "definitive" diagnosis.  I suppose that was why the diagnosis was qualified by "probably."  I was certain I could put this out of my mind without giving it another thought.  There's no way I was going to allow this experience to make me think there was something so major wrong with my body.  I was no different before I went to the doctor than when I left and I felt like I functioned pretty well before anyone spoke otherwise.

I realize that you must be wondering how I could be undecided as to whether or not I had an actual ailment.  I was in a grey area because I had always functioned "normally" within my world.  Hearing that other people do not have pain regularly was difficult to understand.  Other people had headaches and joint aches right? My joints had always been loose as long as I could remember, so it was normal to me.  I spent the better part of a year convinced that it was a bogus appointment and that I didn't need to listen to any geneticist who could offer no "proof" in the form of a blood or skin test.

About a year later, I saw a different geneticist for a second opinion.  This time, I shared with the doctor that I'd had my doubts.  He was less vague than the other doctor.  He offered a guarantee that he was certain of my diagnosis based on clinical symptoms.  I pleaded that I thought my pain was from pushing myself in sports.  He asked if any of my teammates struggled as I had.  The hadn't.  This time, I felt I had to listen.  He was right and the first doctor had been as well.  It helped his case that between appointments, I developed other pain issues and had two failed shoulder surgeries.  There was clearly something wrong with my joints.  

I believe denial can be a normal part of the process.  Nobody wants to hear that they have a problem.  I really read into and interpreted the meaning of this "problem" in ways that were not helpful.

                                           *     *     * 

                             Working Toward Acceptance

I spent the next couple of years of my young adult life attempting to understand and connect with the disease.  If you can't beat them, join them.  Right?  I accepted having Ehlers-Danlos Syndrome as part of my identity.  

I probably took it on as a greater portion of my identity than what I needed.  It was definitely helpful to reach out to other affected people.  It helped to hear that I was not alone and to hear the things that helped them stay motivated and on track.  Those things also helped me to be motivated.  

I felt I needed to learn this disease inside and out.  I believe this drastically influenced me to change my career path to nursing.  Burying myself in knowledge made me feel like I was staying one step ahead of the disease.

                                                *     *     *

                                Finding a Place for EDS to Fit

Over time, I felt like I had done my part to get acquainted with this disease.  I attended conferences.  I made friends with EDS.  I sought supportive treatment and stabilized my symptoms somewhat (there is nothing curative out there, only support for the symptoms).  I felt like I knew what to do when the pain set on and while it still wasn't easy, it became something I was used to.

I slowly began to feel that less of my identity was tied to EDS.  It felt good to let go a little and be more of myself again.  I don't worry about what is going to become of my future because I will have challenges.  I don't feel helpless to unrelenting pain (at least not as often as I used to).  While it does affect me daily, I am so used to it, that I do not recognize it the same way.

 *     *     *

I put this out there because I found it so helpful to hear from other people that they too have climbed the mountain before.  At my worst pain experiences, I told myself that my friend advised me she was twice my age and had been where I was twice before, so she always knew that if some other body part started to fail her, she would be able to climb the mountain again just as she had before.  This advice was so valuable to me.  I felt like there was hope that if I just kept going every day, I would make it to the top.  I did.  I have done it again since then as well.  

Maybe other zebras out there are finding themselves confused by the diagnosis or feeling as though the disease has taken over their identity.

Why Zebras?

Most young doctors are taught early to think horses when they hear hoofbeats-- not zebras.  This is important because they do learn lots of thing in medical school that are far less common than the things they see daily.

Those of us who have EDS would like to remind them that zebras do exist. 

I think I live pretty gracefully as a zebra in a world full of horses. It can be difficult to keep up with everything between work, school, wedding planning, family, friends and, of course, EDS, but I think I do pretty well. The EDS can get in the way of a lot of things, but I really try not to let it affect me and when I have no choice in that, I try not to let it keep me down.