I was going to make a more drawn-out post explaining why I’m not participating in any of the awareness campaigns of May concerning my illnesses…but then I came upon the realization that I don’t owe anyone justification for my actions! Or wise inactions, as they were.
And I am comforted by the knowledge that many other people with these conditions are feeling the same way I am: For those who can advocate–and I do it at random, it does have its purpose, particularly in our government to let them know we’re still here–that is fine. If it gives you purpose and belonging, then do it. For others like myself, my entire life is an advocacy campaign. I don’t need a month. Or a day. I get 365 days, 7 days a week, 24 hours a day, of “this is what this disease does.”
Pay attention to me, pay attention to how I got this, and how hard it is for me to get my health back, so you can avoid it. Know that I was just like you, once. Know that I didn’t think it could’ve happened to me, either. That’s the biggest advocacy I can do.
Talking about Lyme or M.E. every second of every day for a month (and nothing coming of it, because people who have their minds made up are NOT willing to hear anything else) is not going to help me at all. I am not my disease. I am not Lyme disease, or mycoplasma, or myalgic encephalomyelitis, or autonomic neuropathy, or dystonia.
They’re just things that have passed into my life to help shape and change it into something else. That’s all.
I’ve spent the past decade in advocacy-mode. I’ve done my part, I think. In my absence there will be others. I personally think people learn more if you’re not yelling at them in desperation. I’ve been blessed to help several people find out they had Lyme, for example, and it had nothing to do with advocacy. You can’t force the information on anyone–if they want to know, they will seek. And if they’re interested, I am here.
So instead of advocacy, myself and several, several others I know, are focusing on what makes us feel normal. Sure, our every waking moment may be imposed upon by symptoms and dysfunction, but that is not all we are. No matter how sick I’ve ever gotten, nor how sick I will ever be, there’s always more to me than an illness. This blog is my health diary, yes, that is the POINT of this journal, to track my symptoms and such, but I don’t want anyone to get the idea that it’s all that I am. I have friends and family and pets and hobbies and interests (often obscure ones) just like anyone else. And I am an artist. Not because the title makes me feel important, but because at my core, that’s how I express myself, it’s who I become when my physical limitations allow.
“Every job is a self-portrait of the person who did it. Autograph your work with excellence.”
So yes, no posts about my conditions (though I did finish the “What is M.E.?” section a while back). It’s time to cultivate the parts of my life that inspire and enhance, what makes me feel human and normal, not advertise what makes my life a living hell for the other 90% of the day, mostly to people who already know what I go through, anyway. And I’m glad I’m not alone in thinking this.
I’ll leave you with this link: 60 Ways To Make Life Simple Again
♥ a rainbow at night