“All the world’s a stage,
And all the men and women merely players;
They have their exits and their entrances,
And one man in his time plays many parts.”
This Shakespearean quote has been flitting through my mind every so often lately. So many thoughts, some brought on by way of someone else via email, text or a Facebook message. Others, word association, maybe? What does one do when life presents an exit from one’s current stage while not knowing when your character is needed again? Is there a reprisal of your role? Will there be a reprisal? A new beginning, a new character perhaps? Will there be travel soon? What happens then? The anxiety, even fear sometimes is overwhelming.
I never used to be easily overwhelmed. It was one thing I never realised about myself in time. In time to savour and relish that it was indeed a strength of character. See, that’s the thing about being a chronically ill person. You never quite know what you will be like, feel like, on any given day. You try your damnest to be ‘normal’ only to pay a cost no one else would see behind your closed doors, whimpering into your pillow from the burning pain, maybe for a day but usually several. The fear of making a fool of yourself in polite company. The anxiety of being capable of holding a conversation, to follow, to participate in. What if my words come out wrong? Or worse, what if they weren’t meant to come out and remain thoughts, captured and stuck in the space inside my brain?! And then there is the internal cringing feeling we experience when we see your face change and we know you do not want to be here with us. Why does it make you so uncomfortable? Do my illnesses make you uneasy? Does it make you uncomfortable? Why? Because I remind you of your own mortality and it is a fact you do not want to think about, let alone acknowledge?
Being laid up in bed for a few days has made me wonder, ponder and contemplate on much lately. Sometimes life seems to present you with a plethora of choices that aren’t so clear. Nothing is so neat and tidy as you wish it would be. Nothing defined or explained. No instruction manual. How do you find clarity? A buddy and fellow Dercum’s Disease patient and I commiserated over the women we used to be before our diagnosis. And how no one seems to get what that ‘exit’ from our lives means to us or does to us. How it baffles us at times. How it destroys us on the inside to be treated like idiots. Granted, we now look at the world through different eyes. We’ve had a taste of death. We are surrounded by it in our small, mostly online community of fellow patients. One day you are laughing over something silly on Facebook and then in a day or two, you hear that person has passed on. Rushed to the hospital where of course, they could do nothing because more often than not, they do not know what to do. So, yes. We tend to place different values on things. We may even value something others may scoff at. These online groups of support often offer the only venue for most of us to find a safe place to vent, to grieve, to find understanding or even bitch about something without being judged. We learn from each other’s experiences. We finally know that someone else ‘gets it’. We may seem the fools in this play of life. We see beyond what you and others see. We do not want to be clingy. We just want to enjoy your company for as long as we can because the memories made together with you will be what carries her and I, and the rest of us in these pockets of online communities, through our dark days of debilitating pain. Because affection and love truly are the balms that heal. The very last thing we want to be is a burden in any way to any one.
When we post articles on Facebook listing Dercum’s Disease as the third most painful illness in the world or how a 26 year old died from Addison’s Disease, we’re not asking for your pity. We are asking you to understand. To please not judge us as lazy, incompetent, flaky or stupid. I once explained to Brett that when that particular wave of pain begins – we call them flares – it is like our skin is being set on fire. It burns through into our bone. As it happens, we hear no conversation, we see nothing and we barely breathe because nothing else seems to exist except the pain. Our brain becomes numb. Our speech slurred. Our motor skills severely impaired. So we medicate to help ease that pain. Unfortunately, most of the medications for pain at this level leaves you a little loopy. Or a lot loopy as the case may be. What are we to do? What are our spouses and loved ones to do?
We shuffle along, trying as much as we can, as hard as we can, for as long as we can, to follow you, our loved ones, along this journey of life. Sometimes we falter and fall, sometimes badly, and yes, it will inconvenience you. It will rob you of social time with friends. It may require you to leave work early to rush to our side. But please know, we realise this. We see this. And by God, we so appreciate this! All we ask is that you don’t eventually resent us for it. But remember us pre-diagnosis, pre-medications. Who we really are. Not who our illness or illnesses have made us become. Because, if you forget and you say words that cut us, is heart breaking to us, that basically strips us of our reason to want to hang around, we shut down. The very reason we want to hang around is to have some more time to experience life with *you*. You are our reason/s. We have already exited the stage in many ways. We are reduced to nothing in some people’s eyes; some inanimate, burdensome prop in the scene sets of your life.
There may be times when life’s script requires some of us to leave the stage. Our time will have come. Us leaving or facing the reality of that fact daily would be made so much easier knowing you enjoyed being on that stage with us. Saying our lines, laughing at the comedy, crying at the tragedy, dancing around ill constructed trees and singing our hearts out albeit out of tune. Who cares if we’re out of tune! We were not alone on that stage trying to complete a show. We were together making the show a show! That, in the end, is what matters most. That we are a part of your lives too as you are ours. Know that without you, the show would not have gone on.