Category Archives: Uncategorized

Cavalia & its horses

  
  
  
Last night I saw Cavalia’s new show, Odysseo, with a friend as my Christmas present from my parents. Just as with the first show I saw, it’s simply splendid.

Favorites from last night included a liberty demonstration with upwards of 30 horses all in the arena, bridle-less and (mostly) responsive to their handlers on the ground… except for one who meandered away and had to be gently encouraged to rejoin the pattern! There was some seriously awesome trick riding (guy went underneath the belly of his horse! girl went upside down at the gallop and picked up gloves she dropped!) Another highlight were some brilliantly talented acrobats. The heights made me queasy but they were spectacular.

We got the package that included dinner/dessert…and, most importantly, a tour of the stables! It was amazing seeing the horses we had just seen on stage, lounging in their stalls and getting pampered. So worth it to get that experience.

We are seriously contemplating going again next month. It was that good.

IRL (pardon the text-speak)

  
Yesterday my mom and I hosted our annual Christmas Tea party. We had our closest and oldest friends for a few hours of talking, reminiscing, and lots of eating!

This event reinforces to me how vital personal, in person support is. Most of these women have been with me or my family through surgeries, therapies, successes and struggles. It’s important. 

Even though most of them do not have that much experience with Moebius syndrome or chronic illness besides knowing me, the ability to have a face-to-face supportive community is vital to me.

I just thought I needed to acknowledge (and thank!) my IRL community, as I sometimes online focus on the virtual community.

  

Doing it

“Just fucking do it”

I love this gem from my horseback riding lesson yesterday. So true. I, and other people, spend so much time overthinking, analyzing, planning, and thinking some more… that we forget to fucking do it.

And you know what? After I had that little discussion I rode SO much better and my horse started really using himself better and we ended on an amazing note.

Because I fucking did something for once.

What If

Saw If/Then again yesterday, last time I saw it was in NYC earlier this year. I needed to hear the message behind this show again.  
Sometimes I feel like I’m hounded by the What Ifs in life, by the fates and choices that led me to where I am. Some are good, some neutral and some just suck.

But the real message behind the show is to live life to the fullest, and not waste time thinking about the ifs and thens.

I know this is true. I feel it. But it’s hard to do! But listening to the lyrics again yesterday, I am reminded to try my best. Here I go…

   

Riding Reflections

Sometimes I question why I had to fall in love with horses, of all things. And really, it doesn’t make sense. I am uncoordinated, sometimes fearful, and a perfectionist… and I choose to sit upon a one thousand pound flight animal and attempt to tell it what to do. Sure.

But then I have a ride like I had today and am reminded why I ride. Pig (the horse) and I started off a bit eh – he wasn’t engaging himself and was throwing his weight on the forehand. And we worked on it.

I activated every muscle I could access to raise hands, sit back, and use my body more effectively. He realized he could in fact bend, collect, and get light on the reins. This approach to riding suits my anal side perfectly. I love piecing it apart and putting it back together to improve. I love messing up but then figuring it out and improving. I love feeling the lightness. I love the intellectual challenge. 

And at this moment, I really love this horse. 

Communities

In the rare disease community, so much is written about finding people who share your same condition. And while that is indeed valuable, one of the most impactful parts of my MedicineX experience last weekend was how similar experiences are across varying conditions.

That’s not necessarily a positive thing – the undercurrents of frustration, pain both physical and emotional and the strain of chronic illness was palpable in the discussions among ePatients. But what was also overpowering, in a wonderful way, was the strength of an informed, committed and driven health care consumer. I was in awe of my fellow attendees.

There comes a lot of “responsibility” when one is a smart and (relatively) accomplished person with a medical condition. To be an example (of what?), to educate, to inform, to advocate. Depending on my mood I am sometimes all about this and sometimes worn out by it. Approaching MedX, I was a bit fatigued by everything. I was questioning why I was involved in things, if it really mattered. But MedX and the discussions I had and speakers I saw reframed my thoughts.

So… what are my takeaways from MedX? In brief: to be informed, to be engaged, to be persistent. It’s that I have a responsibility as an ePatient to myself, to the Moebius community, and to the ePatient community to push the discussion about care, physician/patient relationships and healthcare as a person with a chronic condition forward.

Moreso, it’s that this conversation is interesting and engaging. That while a string of bad genetic luck might have landed me in this situation and with these experiences, it also means that I sometimes get incredible opportunities from it. And that I should embrace them.