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.