My Life with Ehlers- Danlos Syndrome: Can I Get an A for Effort?

By Tiffany Early

I CAN’T DANCE. I’m serious. I don’t mean that Ehlers- Danlos Syndrome has affected my body in such a way that I can no longer dance. I mean that I have never (ever, ever) shown any aptitude for dance (or anything else that requires rhythm).

As a high school cheerleader, I was the kid the coaches told to just stand in the back row and blend in– I was that bad. What I lacked in talent, however, I made up for in enthusiasm. I would practice for hours, choreograph specific facial expressions, and waste precious hours of my high school education envisioning the dance.

But . . . I was still terrible.

Years later when I tried Zumba or dance aerobics, I was the woman that was so lacking in coordination that I actually distracted the rest of the class. The sad part? I was legitimately doing my very best. My husband loves to dance. I try to just stand in front of him and sway to keep from scaring anyone. If I were graded based on my effort, I would definitely get an A. If I’m graded based on overall execution and ability, even a failing grade may be generous.

If my dance ventures have taught me anything, it’s that sometimes you try your best and still don’t do well. As a teenager, that was embarrassing. I thought that it would somehow be less humiliating if I was dazed and confused on the dance floor because I didn’t try- rather than because I was a rhythmless mess. What I didn’t know as a high school kid (and I sometimes forget now) is that the effort matters more than the outcome. As an adult, I often do my very best with less than stellar results. As a matter of fact, that probably sums up my life a bit better than I would like to admit. I’ve decided that making the effort is what matters.

As illness changes my body and makes it less capable of carrying out simple day to day tasks, my first instinct is to admit defeat. It’s hard to meet today’s obstacles with the same enthusiasm that I had for silly high school cheer dances. However, even if my execution is less than stellar, I still want to receive an A for my effort.

I’m still trying to maintain a healthy lifestyle.

My body will never be “normal.” I will probably never train for a marathon. I will probably always feel terrible for hours or even days following the most basic of workouts. I get that. Sometimes when all that reality fully sinks in, I want to hide- and eat Oreos forever. However, I’m still trying. I still go to the gym when I can. I might creep along on the treadmill at a snail’s pace while the woman twice my age jogs beside me, but this is my personal best. I still drink protein shakes for breakfast instead of gorging on Lucky Charms in hopes that I’m giving my body the fuel to be at its best. It doesn’t always work out, but I’m still making an effort.

My husband and I have recently started going to the gym together. Well, technically, he’s been going for years, and I just started joining him recently. We sing with the music; we plan our vacation; sometimes we even exercise. I’m a mess. I stop every few minutes to move my kneecaps back where they belong, and sometimes I get so dizzy I run into the side of the treadmill. (I swear, the other gym members probably think I work out while drunk- nope, this train wreck is au natural.) Trying isn’t easy, and it’s not especially fun.

I’m still trying to be a good friend/ daughter/ wife/ etc.

This one is hard. There are days that I am overwhelmed by jealousy for just how “normal” everyone else’ life is. (Of course, I realize that everyone has problems, and I have no right to minimize theirs- but when I feel terrible, I get a little illogical and dramatic.) I want to hide. I want to engage in a relationship with my favorite pillow and Netflix- not humans. But . . . I’m still trying. I still listen to others’ hurts (and realize that everyone’s life has pain- even if it isn’t physical like mine). I still check on friends and family members when they’re going through a rough time. I’ve been selfish and dismissive many times, but I always resolve to try harder.

I have the most wonderful nephew and niece ever. Seriously, I love them so much. However, just be virtue of being children, they’re so very energetic, and, well, exhausting. I worry that they will grow up and think I could never be bothered with them- that resting was more important to me than they are. So, I’ve found things I can do with them that work for me. My nephew and I go to the movies together, and it’s a blast! We tell silly jokes to each other and read books together. My niece is younger, so I haven’t gotten brave enough to take her to a movie yet. However, I have found things I can do with her. We play with her dolls (She even names them after me sometimes!). We decorate cookies (AKA the most unbelievable mess I’ve ever made). Sometimes she even sings songs with me (or tells me to stop singing so she can freestyle!). It’s not perfect, and eventually they will see that there were a lot of things their aunt couldn’t do. I hope, however, that they always know I tried.

I’m still trying to enjoy life.

It would be so very easy to use the excuses my body so often gives to quit having fun. It would be easy to say I can’t go on a date night with my husband or I can’t handle our yearly trip to Disney World. It’s all hard, and some days I don’t feel tough enough for it. However, it’s up to me to enjoy life as much as I can. As people with chronic and rare disorders, our lives are so far outside of the ordinary that it’s easy to give up. I still believe, however, that it’s worth the extra effort to enjoy this life as much as possible.

Just this past week, I went to a University of Kentucky basketball game. Every time in the past that I have tried going to a game, I have ended up super sick. (I feel like I have close, personal relationship with every bathroom floor at Rupp Arena.) I was a little nervous to try going to another game, but I love my team. The opportunity was there, and I decided to try it. Bless my husband for being brave enough to try it with me. The outcome? No fainting or projectile vomit! Granted, I’ve been in the bed or on the couch ever since, but it was still totally worth it.

Having said all that, I’m still giving this Ehlers-Danlos life all I’ve got. I get an A for effort- even on the days when life is giving me an F for execution. Want to know a secret? I still try to dance too. I’ve not improved- at all.

About Tiffany

Tiffany Early is a 31-year-old former middle school teacher who enjoys blogging from her back porch. She is an advocate for Ehlers Danlos Syndrome, Dysautonomia, and the chronic illness/ disabled community everywhere. Tiffany lives in Campbellsville, Kentucky (roughly the middle of nowhere) with her super fabulous husband Joe and tiny but aggressive dog, Zoey. She enjoys adventures with her husband, Netflix marathons with Zoey, and hanging out with her family- especially her super cute nephew and niece, Hagan and Mia.

Tiffany manages her blog ( www.crazychroniclife.wordpress.com ) where she examines life and relationships with chronic illness while laughing at the absurdity of the whole debacle. She also writes about her adventures in “Snooki”- the attention-seeking wheelchair. She also runs an online support group for those living with chronic illness. Tiffany strives to find the bright side . . . or at least the humorous side to living with Ehlers Danlos Syndrome every day and wishes peace, love, and health to the entire rare disease community.

Facebook– Facebook Support Group Instagram-| @crazychronictiff