Please Allow Me to Introduce Myself...

...in which I reveal my 'super-power, and who I really am.

My name is Violet Encantada, and I just turned sixty years old. For some people, that may not seem like a huge accomplishment, but for me it means everything: it means that I have now lived ten years past my ‘Expiration Date,’ thirty years past my ‘Best When Used By Date,’ and forty years longer than anyone imagined I would live – including me.

What do I have in common with Abraham Lincoln, Perfecto Aguas, King Tutankhamun, Vincent Schiavelli, and Jonathon Larson? We all have, or had, Marfan Syndrome, a congenital disorder that affects primarily the connective tissues of the body, and impacts pretty much all the bodily systems, sometimes in extreme ways. Fortunately, it’s fairly rare: only about 1.6 million people in the world have it (e.g., about 0.0002 percent). Because of that, it’s not very well-known, despite its sometimes devastating consequences. It cannot be cured, and living with it is a constant balancing act.

Most people with Marfan Syndrome do not live very long lives. Health problems tend to start early in a Marfan patient’s life, and some complications are, by their nature, swiftly fatal. It is rare that a Marfan patient can live very long without any sort of surgical intervention. Until recently most Marfan patients hoped to live to about age 45, depending on their circumstances; that number has been increasing over the last several years, but old people with Marfan Syndrome are still pretty rare.

So what is it that makes me so special? Well, in addition to having Marfan Syndrome, I’ve been through a lot of things.

- I’ve endured at least nine serious surgical procedures

- I’ve been hit by a car, and survived

- I’ve been cardioverted half a dozen times

- I have three artificial heart valves that all ‘click’ at different speeds

- I have a number of artificial parts – hence my deserved use of the ‘cyborg’ label

I never thought I would reach this point. The odds have always been stacked against me, and people who knew me when I was younger are sometimes surprised that I am still alive. It’s never been easy, but I have managed to do it, and I plan to keep going.

Because I had been told when I reached my early teens that I was probably going to die at a young age (I’ll get into that much later), I frontloaded my life as much as I could.

- I published poems and newspaper op-eds when I was in middle school

- I worked really hard in high school and got a full ride to my university of choice (UCLA – Fight! Fight! Fight!)

- I worked really hard in university and got a full ride to grad school, where I published extensively, finished a doctorate relatively early, then worked as a teaching fellow and a counselor

- I had a full career in clinical and pharmaceutical settings as a senior researcher

- I became an adjunct instructor while also pursuing a second doctorate

- I applied to and was accepted to law school (but I changed my mind)

- I started a small business in which I conducted management research

- I completed a Patisserie diploma at Le Cordon Bleu in Portland (just for fun)

I’ve also been all over the world, attended every Oingo Boingo concert I could get to, got married (and divorced), had a mail-order biscotti business, and self-published a number of books. And I managed to do that all before I turned 50.

Thinking back over all of this, I’ve realized a few amusing things. I’m sixty, but most people guess my age as fifty; I act forty, and I dress like a twenty-something (I used to do the whole ‘Goth’ genre, but that just wasn’t me). I continue to live my life as if every day might be my last. I have never felt ‘old,’ for two reasons: first, because I never thought I would reach ‘old’ status, and also because I am simultaneously blessed and cursed with eidetic and episodic memory; I can’t forget anything, and although that may seem like a genuine gift, it is quite challenging when one ‘reexperiences’ everything from one’s life, starting at a very early age, based on specific ‘triggers.’

So how have I achieved this? It’s not a terribly complicated process, and in fact on the surface it seems rather simple: I’ve simply never stopped. I’ve never stopped doing the things I enjoy (snorkeling in Aruba, hiking in Alaska, climbing through pyramids in Egypt). I’ve never listened to people who told me that I couldn’t do something; only *I* have decided when I couldn’t do something. I’ve kept my small but supportive network by my side and eliminated those that were harmful or mean or thoughtless with me. I paid attention to myself and worked on the things I could do, and I did not punish myself for anything I could not do (e.g., having a child; that was something I knew I would never safely be able to do).

So here I am at sixty, all six feet and one-hundred and twenty pounds of me. My life is far from perfect, but even in some of my darkest times (especially over the last six years – more on that later as well) I have striven to be hopeful, positive and kind to everyone I meet. There are things in my life that I absolutely love (my home, my brother - who is also my role model, the wildlife around us, and of course, chocolate!). There are things I wish were easier (my retirement, my recent diagnosis of lupus, my aches and pains).

I did not listen to the naysayers and the constant voices reminding me that I was ‘going to die.’ And most importantly? I maintained my optimism, my hope, and my sense of humor. In fact, my sense of humor has been my greatest coping and defense mechanism, and although there are those who might have been taken aback at times, it has always served me well personally.

Optimism.

Hope.

A sense of humor.

Those three mindsets have been instrumental in my ability to grow, and to continue to learn, and to thrive.

I am hoping to share them all with you, and to maybe help others in facing and conquering their own challenges. I look forward to the possibilities.

(And by the way: I love music of all kinds, and I know a lot of it and a lot about it, so please forgive if I sometimes burst into song!)