Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.


Written by Katie. Posted in Family, Favorites, Goals, Memorable Experiences

Spread the love

I always said I wanted a tattoo. I just didn’t know what I wanted forever. It was that word, “forever” that got me every time I thought about it. What could I put on my body that would still mean something to me when I was 70? 100?

I liked the way a simple word looked. If you go to my Pinterest page, you will find that over the year, I had pinned a few word tattoos. Faith. Courage. Love.

But again, the “forever” was the thing that got me.

Then you add in the fact that I have Ehlers-Danlos Syndrome, a connective tissue disease. EDS can affect skin. I have the mild skin type. Tattoos go on skin. This made me leery as well.

When Allie got home a month ago for Christmas break, one of the first things she said is, “let’s get tattoos.”

The first thing I said was, “no.”

She went on to tell me she had thought about it for over a year and she wanted to get the word, “live” tattooed on her wrist. Allie reminded me that this Christmas would be her fifth anniversary of the night she almost died. To her, getting the word “live” would forever be a constant reminder of how far she’d come, how hard she’d fought, and what she should strive for each and every day.

I had sort of an ah-ha moment with that. I really got it. For the next three weeks, I thought a lot about what those four little letters stood for, and what they meant to me.


It didn’t seem that powerful until I let my mind go there.

To have life.

How often do we take this for granted? How often do we get up and complain that our cable is out, or we have to go to work, or we have to pay bills? With the glorification of “busy” these days, as well as our day-to-day routines that can become mundane, it is so easy to forget that the fact we can even get out of bed is a gift. The fact that we can eat, drink, and breathe is amazing. Let yourself think about that for a moment. When was the last time we gave gratitude for the fact that we simply woke up today?

I remember the days when I did gymnastics 30 hours a week. The days I would teach all day, go running after work, do school work at night, take Masters classes, and still go out on the weekend.

I’m pretty sure I felt invincible. I never once thought that something could happen to change all that.

Well, it did. And fast. I was thrown a major curveball called sickness. Not the kind of sickness that goes away after a week of rest, but the kind of sickness that sticks around for good, and totally flips the life you once knew upside down.

Instead of running, I sat in a wheelchair and had no idea why. Some doctors thought I was losing function of all of my bodily systems, not knowing if I was dying or not. It scared the shit out of me. And it also woke me up.

The life that I once had taken for granted had changed, and changed fast.

I had gone from training for a half marathon to praying that I would be able to get out of bed when I woke up the next morning.

As with any hard, life changing event, I learned a lot.

Mainly to live the life I wanted because there are no guarantees.


I also learned a lot when Allie was fighting for her life. I remember sitting by in Michigan with the phone glued to my hand waiting for updates from my parents, while Allie was in a Maryland hospital for seven weeks fighting for her life. It was crazy how she had gone from traveling the world competing as a world-class gymnast to not knowing if she would make it past her 21st birthday…all within a short couple of months.


Life can change in an instant.

I watch this baby sister of mine now, and I watch how she lives. Fully. With no apologies. No regrets.

Over Christmas Break, my Uncle John ended up in the ICU. He had just recently been diagnosed with ALS, and his health spiraled downhill fast. As we speak, he is fighting for his last days in the comfort of his home with hospice care. While he is fully aware that these are his last days, it is inspiring to hear how he continues to live each moment surrounded by the love of his family, friends, and his beloved new grandson. He still smiles, communicates the best he can, wants to be told stories, wants to reminisce, and most of all wants to breathe in and out every last bit of life he has on this earth.

Further, I am blessed to have a life where I am surrounded by so many other inspirational family members and friends who live everyday like it’s their last despite crazy amounts of adversity. These people have become my teachers, my mentors, my inspirations.

They remind me everyday to live…a word with a meaning that far surpasses the literal.

As I continued to think about that small, yet powerful word, I also thought about what it could mean if I did have it tattooed on my body forever.

It could be a reminder of everything I believe in, but sometimes lose site of while I am living my life. Irony, huh?

To live in the now.

I struggle with this. I am a worrier. I am a planner. Okay, I am Type A all the way. There are many times, I need to be reminded to step back, breathe, and take in the now. Isn’t the now the only thing that matters anyways?

To live and let go once in a while.

I play the what-if game a lot. I have trouble taking the leap when it comes to big decisions. I admire people who can just go with the flow. I wish I had just a little more of that in me. I am working on this…especially since I know that a lot of living requires leaps…and the leaps are what can make life so rich, so memorable, so full.

To live by doing more of what makes me happy.

I love to dance. I love the beach. I love exercise classes. I love live music. I love my family and my friends. I love our foundation work. I love making connections with people. I love kids. I love laughing. I love being goofy. I love game nights. I love the high I get from exercising. I love accomplishing goals. I love surprising myself. These things make me feel alive. These things make me feel like I am living life to the fullest. It can be so easy to get caught up in the day-to-day stresses, and all of the negative stuff that happens in our world. But what will I remember when I get to the end of my life? Chances are it is the happy things. I need to do more of them.

To live by appreciating the little things.

You know, the things that really matter when it all comes down to it?  The small gestures that speak volumes, the kindness, the people who have become my people, the pee your pants kind of laughing, the precious days I feel pretty symptom free, the days when I can say I may not be able to run today, but I have two legs and the sun is shining…Yup. Those things.

To live and let live. 

Who am I to say what someone else’s life should look like?  I am responsible for my life and my life only. It is important for me to remember that I may not be able to control what others do or say, but I can control how I respond to it, and how I am going to live with it.


I thought about all of this and more for three weeks.

During Allie’s last week here, she brought up the tattoos again. This time, I told her I would go with her but I still wasn’t sure. I let her know that I had come to love and embrace and understand the word “live,” but I still had the EDS piece to explore.

I emailed my EDS doctor. He emailed right back. He told me many EDS’rs do well with tattooing, but it’s just hard to know 10 years down the road how it will look.

With that information, Allie and I took off for the tattoo shop. Originally thinking we would get them on our wrists, the tattoo artist talked us out of it; mainly because if we ever wanted to hide it, it would be really hard to do. We talked some more and decided our foot fit what we wanted the most. As Allie took her “live” tattoo like a champ, the EDS what-ifs crept in for me again. When it was my turn, I talked to our artist some more, and he encouraged me to go home, do a little more research, and come back only if I wanted to, after I had an even more informed decision. I respected him tons for that.

So in true Katie fashion, I researched…and researched some more. I talked to others. I am pretty sure I drove the people around me crazy. Everything I found, ended up with the same verdict: Some did great. Some didn’t. It depends on your body. You won’t know until you try.

Two days later I asked Allie to go back with me. We went, I talked to the artist, he told me he was comfortable doing it, if I was, and even though he was totally booked, he offered to do it after he was done for the day since he knew Allie was leaving to go back to school, and it meant a lot to us to do it together.

At 8:00, we returned. I felt the calmest I had in the last few days. I was ready. I knew I wanted that word forever.

I did it. I loved it. Yes, I even cried a little.

Thinking about it, it’s kind of funny. My whole tattoo experience seemed to encompass everything I had come to love about the word “live” itself. Taking leaps. Letting go. Having the reminder to always live fully, in the now, and with zero regrets. Having the reminder that nothing is guaranteed. Knowing that Allie and I are both branded for life with a word that means the world to the both of us, after what we have been through, and what we have come to believe with our entire being.

I lived that day.

It is a reminder that no matter what comes my way, to truly live is my answer…it is the most important thing I can ever do.


Tags: , , , , ,