An Ethic of Altruism.

Lately I’ve been presented with my mortality on a daily basis. This has led to many discoveries. The least of which being that there are many avenues that lead to goodness, and a good life.

I’ve got a lot going on in my life, health wise; I’ve spoken of this numerous times. But feeling achy and incredible pain, and disabled, and sluggish and slow for a long period of time will eventually begin informing of different things. The pain doesn’t tell me to ‘be careful; you’re going to hurt yourself’ as much anymore, and the breathing problems don’t tell me to ‘see the doctor quick; let’s get this fixed’ as much anymore. Rather, it’s as if my body is constantly telling me ‘one day you’re going to die; that could be today, tomorrow, or thirty years from now. But its going to happen’. Constantly being fed this information has caused a great change in me.

Every day I wake up I’m grateful for another day on this earth. Not only am I’m grateful but I’m anxious; anxious to get as much done as I can. I want to help, to inspire, to impart my wisdom and the things that I’ve learned so that maybe someone else’s journey can be a little easier. Most of all I want to be remembered. I don’t want people to forget me so easily; I want my legacy to live on. That’s the most important part of my life right now – ensuring that I’m not forgotten; that I do as much good as often as I can, while I still can. It’s almost like a mania, really.

One person who embodies this form of goodness, even if they don’t really know it, is Sandy Smeenk at the ILC foundation (Improving the Lives of Children;

She’s warm, kind, caring, motherly, bright and a true force to be reckoned with. She has dedicated the remainder of her life to fight for those of us who don’t have a voice; to help the sick and the downtrodden. She’s probably not perfect, and I’m not saying that she is. I often find its true that when someone does something good, either by working at a homeless shelter, or volunteering at a hospital, or even saying a kind word to a complete stranger now and again, and is complimented and ‘praised’ for their goodness, a lot, a lot, a lot of criticism usually follows.

I’m sure there are many reasons why that’s true; maybe it reminds some of us that we could be better people, and so we criticize to reduce the dissonance. Maybe some of us are easily jealous, and want the attention for ourselves, for whatever reason. And I often find that this criticism detracts from the value of the original message: someone out there is doing some good, and the amount of good they are doing outweighs the personal benefit to themselves.

I’m wary of true altruism (I’d say the only real form of true altruism is laying down your life for another person), but I’m certain that when the consequence of an action is good, the intentions matter less(obviously there are special cases… but as a general principle).

Those of us who were unfortunate enough to carry the EDS gene(s) have to jump many hurdles and face many obstacles to get the treatments that we need; often times treatments that have life-or-death consequences. Sandy fights for us. She ensures that we get these treatments. Not only that, but she’s working towards making those treatments normative – one day future EDS’ers won’t have to have someone to fight for them so that they can have life-saving brain surgery (because let’s be honest, people like Sandy are rare).

She’s been called many things. But I like to think she’s a role model. First and foremost. It’s my wish that one day I can achieve some of the goodness (good karma) Sandy has achieved. And in the meantime, I’ll fight so that people like Sandy get the recognition they deserve. Because (god willing not any time soon) when she dies, she deserves a parade, a day of the year, and national recognition. People like her should never be forgotten.

Part of what it means to lead a good life is to recognize the goodness in others; to applaud their achievements and spread word of what they’re doing. By doing so, hopefully they will never be forgotten, but live on forever in our collective memories!


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