Reflections on Loss in the Community


There have been an alarming number of deaths in the ME/CFS Community recently (see Losses in the Community for more information). I don’t personally know any of these people, but every time I hear of another death, I take a moment to reflect on the senseless loss it represents and the pain and anguish it causes us all, to say nothing of the pain and suffering to that person’s loved ones who have probably struggled and hoped for years to find a cure, or at the very least, some relief for their ailing loved one.

And of course it’s not the ME/CFS community alone that sees these dramatic losses to it’s numbers. Every week someone announces the death of a member in one of my EDS or pain support groups or someone posts a suicide note and is never heard from again. If it’s not the illness itself shrinking our numbers, it’s the utter desperation of going years without proper treatments and care, sometimes without the assistance and support of loved ones.

I can’t help but reply to such posts, whether I know the person or not, whether or not there are already 100 other comments. I know I’m supposed to be an old hand at this. I should be strong, but I can’t help but cry every time as I type out pleading lines of carefully thought out text that I’m sure gets lost among dozens of other replies. It changes me for days after, as I dwell on the devastating emptiness, the hopelessness, the strange sense it begins to make when you’ve gotten to the point of a fully formed plan.

I begin to  worry about the friends and allies I’ve come to love and depend on for emotional and moral support and how much it would hurt if they were next, be it suicide or illness related. It’s almost enough to make me want to shut off my cell phone, crawl back into my bed and never approach the Internet again. Almost.

It’s tempting to insulate myself from all this loss, all this death which only reminds me of the fragility and brevity of my own life, reminds me of the many times I have planned for my own demise and risks putting me back on that terrifying island of loneliness.

But that’s just it. Without the few real, compatible, loving friends I have managed to cobble together from the support groups I frequent and my blog interactions, there is little chance I would have survived this long. Every last friend I have is a chronically ill disabled person I met on the internet. All of my other ‘friends’ and my entire family got tired of waiting for me to get better a long time ago and moved on with their lives. My chronically ill crew are my entire support system outside of my husband and I’m not ashamed to say I need them desperately.

We need each other. Whether you are almost completely alone like myself or you have a family full of Florence Nightingale’s, you more than likely do, too. Nobody truly understands what it is to go through a thing until they have. We need commiseration, camaraderie. We need to be able to speak with someone who already knows our language and feels the same rhythms we do. Will we always have the same experiences, symptoms, motivations or goals? Will we always be compatible? Of course not. But we all have common ground from which to begin, that of being relegated to a marginalized, largely misunderstood and mistreated group within society all based on something we have no control over.

That’s why we have to fight for one another, support each other, reach out to each other, lend the support we have to give. My body may be basically worthless and I wouldn’t count on me to remember much, but I know how to listen, offer comfort, provide resources and do research, distract with jokes and stories, so those are some of the things I set out to do.

Still, I feel like I can do more. So I want to make it known right now I’m pretty much always available (unless my symptoms have utterly skyrocketed) and willing to talk to anyone, whether you know me or not. PM me on the FB page, fill out the contact form, or DM me on Twitter and just say “Hey, Cap. I could really use a friend today,” or “could you help me connect with some people who also have _____,” and I’m your woman, within reason of course 🙂 but rest assured, I won’t judge. I’ve been there too many times before myself.

fb_img_1469469867456.jpgIf nothing else, know that I have had a complete plan, down to who, what, when, where and how. If I had gone through with it when I wanted to, I never would have seen the day I managed to drag myself out of bed again and decided that this life is indeed worth living again, despite how very difficult each day still is. I truly believe that every day that I live is another day that I have won against this disease, as it gives me yet one more day to get a step closer to finding a satisfactory level of recovery.

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