I recently had a conversation with my friend Alex, who lives far & away, but with whom I stay in fairly regular contact. We were close friends, long ago when I was really sick before, and we were contrasting the two times during some conversation.
He mentioned how people used to tell me I was “brave” and I would deny it. And I still would, despite having a friend use exactly those words the other day on Facebook regarding a recent post.
So based in the internal agitation caused by the word, I caved and looked up it’s actual meaning:
1. possessing or exhibiting courage or courageous endurance.
2. making a fine appearance.
3. excellent; fine; admirable.
Then, slightly less bristly, I looked up it’s synonym:
1. the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear; bravery.
2. the heart as the source of emotion.
I bristle a little still, I think under the connotations of these words, not necessarily their meanings.
Courage to me is acting in the face of fear and not backing down despite it. I have done that with my illness. I did that with my dream for my massage & tea business. I was never perfect, nor a massive financial success, but I was a success in all the ways that mattered to me: I did what I loved every day and made the world a better place.
Does that take bravery? Maybe it does.
It is brave to cut everything you are and might be allergic to, despite all the societal & personal risks, and then slowly try to change your lifestyle around their absence & their slow re-additions. It is a hard, day-to-day challenge, I remember because I started that path years ago, but went drastically with it last year when my allergies were clearly killing me.
It was, and sometimes is still, hard to accept my limitations and not fight foolishly against them, as I have in the past – hurting myself & those who love me. It is painful to know my friends are all out doing fun things at events I can not attend, nor afford, due to my health.
It is hard not to greet friends with a hug, but to have to plan outfit that protect my whole body or ask them to wash up before touching me. It feels isolating and creates this sense of fragility that, while real, is painful to acknowledge.
It is hard to know that I have to cook dinner or go to the one restaurant in town where I can reliably eat one or two things, and on lucky days a third. It is hard to grasp, fully, that two weeks ago my immune system spent days on red alert, nearly killing me with histamine responses due to a sleepy bad decision.
It is hard to fall asleep at night knowing I will wake in more pain then I am now, because in my sleep my pain will intensify, and I will wake in the morning to my hands, elbows, knees, ankles and feet aching wildly from the evil of Ehlers-Danlos Syndrome letting my merely 31-year-old body degrade at all it’s bendy points.
It’s a challenge to go to doctor after doctor seeking improvements and hope and progress when you have a progressive disease. Fighting EDS, topped with all my other ailments is like fighting time, with a spoon, and my diseases are a mountain that is growing.
It is hard to look at my list of nearly 30 medications and know I can’t stop a bloody one of them, or something will spiral out of control, letting something else fall, leaving me eventually a pile of bones & sinew with no breath left, probably red-faced, gasping for air as my own immune system kills me in its hyperactive attempts to save me from a world full of toxins, poisons, & dangerous proteins.
So, to Alex, Gary, my little sister and everyone who said before… you’re right, it is brave. The amount of courage I have to muster just to wake up, eat or fall asleep at night & trust I’ll live through it is significant.
It’s just that, to me, it’s a long drawn out process, where I see Death’s bony fingers peaking around the door frame where he stands waiting. I don’t invite him in, he doesn’t enter. We just both wait. He is patient; so am I.
My time will come. My mother’s came not from her lupus, but from her own mistaken judgement. Her mother’s came not from her lupus, but from lung cancer. My grandfather’s came not from what he was admitted to the hospital for, but from something he caught there. My grandmother’s came from a slow, failing body being shredded by a rare genetic disorder that wasn’t found until after her liver & kidneys had failed.
I know all to well that the path to Death’s out held hand is rarely straightforward or predictable. I could be hit by a car, my plane could crash or my autoimmune disease could come roiling out of remission, destroying my body further. Or I could very simply get shot or eat the wrong thing or breathe in while someone cuts an onion.
Death waits, darlings, for all of us, just on the other side of that door. I just see him there more clearly, more often, then most. And he does not scare me, for I am not a child, and we are well & long acquainted now, seeing as he’s taken so many from my life.
I grew up, I did my job, and now each day I keep working to do it still: to make the world a better place, now for me too, not just others.
And as long as I keep waking, eating & sleeping I’ll keep doing that. It doesn’t feel like bravery, unless you pull it apart and look at it in pieces. Most of the time it just looks like my life, no great tragedy or drama, just a life that I am attempting to live as well as possible with the days I have left.
I always thought that’s what we all did, and that’s why I never thought of myself as “brave” or “courageous.” And I still don’t, not really, though I can see in the points above why others might.
Perhaps others walk through life with a fear of death, something I do not understand but that I do grasp as a possibility. Or perhaps no one believes they will die. Or perhaps they, simply not knowing the likely method of it, don’t put much thought to it. Whatever it is, perhaps that is the difference…
Or maybe there is no difference.
Maybe for each of us waking, eating, sleeping is an act of bravery, trust and faith we have simply settled so deeply into that we forget we have done so, much like any long relationship pattern.
I suggest that if you think I am brave that you are too. For you have accepted a chance of my death, of my worsening health, of any number of bad things along side any good hopes you have. Yet, you come back here and read my words and hear my stories and listen to my tale. You are, in your own small way, braving this with me – and I perhaps am braving this for you, so you don’t have to – but there is fear, worry & risk on your part too, whether this is a road you walk with me in your own illness, or your are a friend or family member, or just an Internet acquaintance who returns.
And I appreciate your bravery. I thank you for the courage to say “I feel the same” or “I can’t imagine what’s happening” or “I am thinking of you.” The easiest thing to do when seeing another person’s pain is to walk away, to ignore it, to pretend it doesn’t exist. So many in my life are have done that, my disease depressing them, sometimes more than it does me. Others, for reasons I can’t know or from their own desire to avoid pain, just don’t interact or reach out anymore.
I am brave because of you. Because you love me, and care about my health and my food and my doctors and my life – even if it’s just a sliver of my life – and I get a chance to show that chronic illness isn’t a death sentence, it’s just a different life. You brave seeing the world differently through my eyes.
Thank you. I am grateful. You give me the courage to be brave.