Chronic Snarkoploist: Alive – With Pink Blooms!
I call it the yin yang. When we are BETTER than we were. When we are NOT dying (as fast or anymore). But we are still CHRONICALLY ILL. We are still not normal. We are – DIFFERENT– OTHER. We still have special needs. Life still happens differently for us.
When we travel, we travel with one bag full of meds- round the clock time-tables for taking them, IV’s, sterile bandages, fluids that flush tubes, immunosuppression, fear of infections. We have story after story and a million memories- nightmares even. These stories, depending on how we tell them, either heal or shatter their listeners.
Our memories, our health, are WEAPONS – sometimes aimed right at us. LIFE IS NOT SUPPOSED TO KEEP SUCKING AFTER … after chemo or treatments or this medication. It is not supposed to keep feeling bad after we start new doctors or lifestyles or diets or health systems. And yet- we have our ups and downs.
I just had one of the worst nights of my life the other night. And yet- I know how ride them out like a tidal wave – because I am used such nights. I rode it out – and my chronically ill friends, and those who are care takers – gathered around – to bear witness to my pain and suffering. And those who are not –those who are AFRAID OF ILLNESS AND PAIN – they were gone – GONE LIKE DUST. They were gone the way you and I both know people leave our lives. Some people leave for a moment, some for a long walk in the darkest nights. I pay them no mind. Sometimes you do it alone. And sometimes you have friends who gather with you.
My chronically ill friend is so happy because she has a wonderful boyfriend. She is young and sexy and minxy and fine. But she says, “I just hope he’ll stay, I hope he doesn’t get tired of me being sick all the time. I hope he doesn’t get tired of the hospital.” “I hope he’ll stay.” It is like her mantra. It is all of our mantras. I have nothing to give her. Because research indicates that MOST MEN LEAVE or “emotionally check out” in other ways. They just do. They check out by working longer hours or avoiding dealing with the housework or the children the way they used to before illness struck. The only time this does not hold true – are when they have grown up with some form of chronic illness in their families OR they have made an EFFORT to stay involved. But THEY must ACTUALLY MAKE THE EFFORT.
I don’t want to sound harsh- but single or abandoned sick women seems to be the NORM. And men who get sick appear to have women rally around them. IT IS NOT FAIR – BUT IT IS PART OF THE CHRONIC SICKNESS REALITY. However, that is not to say that being a single woman is a life sentence. The point is- even chronically ill men lose their friends. One research article says that brain damaged patients will lose at least 80% of their friends within a year EVEN if they make a full recovery. Another says that telling your friends you have cancer you can expect 50% of them to shut down and go away (emotionally, or physically).
Recent discussions and articles talk more and more about why and how people shut down their hearts and what makes us open them up. Basically- I have found that some people just cannot emotionally sustain pain or illness. I thought it would be a lonely road, but I found so many people who were my friends and support along the way. It is a difficult time to realize that MANY OF YOUR FRIENDS AND FAMILY will be among the first to go. And it will be a long time coming before you open your eyes and realize with joy that YOU ARE LOVABLE AND STILL WORTH LOVING.
And THIS is the mind fuck. Pain, joy. Loss, happiness. The mix. A real mix of loss and gain not just from the actual illness – but from the very fabric of social support you once counted on. And then – even goes even further.
That gratitude and that pain mixes more. The happy sad, the good bad. Knowing that we are DOING BETTER but knowing that NOTHING will give voice or our losses. Nothing will comprehend them but each other. Do we makes words? Do we make art? Do we bother? Do we get out of bed each day and give a fuck?
My friend texted me her pain, “I just want to do what every 24 year old does?” OF COURSE!! OF COURSE SHE DOES. What is this? How can this be? How can life exist when there is so much fuckery going on? How can this much sickness exist when it is not our fault?
And yet – day after day- we get up, we do our best, and we make it worth it. Life is precious, life is important. WE MUST GO ON. And day after day, we are assaulted from all angles telling us, “we’ve lost your labs, you’re sicker, you’re no longer in remission, you’re rejecting, blah blah blah – you’re sicker still—do you have the strength to go on? Shall we beat you down some more? DO YOU HAVE THE WILL TO LIVE? DO YOU??”
I can talk on and on about partnership with doctors. I can tell you story after story about surgeons who put their heads on the wall and cry when they lose a patient. Or doctors who have to find a closet to sob in when they find their patients have illnesses that will not go away and they so badly want to cure everything BUT THEY CANNOT.
Likewise I can tell every doctor story after story about how their behaviors affect us as patients. And THEY DO affect us. I just spoke to one doctor who agreed that these are people who have wanted to go be heros since they have been in their teens. They spent their lives with noses in books, NOT BEING SOCIAL. And so they never learned how to play well or share toys. They don’t even know how to be good to each other, let alone how to be good to their patients. IT IS TRUE. Many do not. YOU DON’T HAVE TO TELL US THAT. WE HAVE FOUND OUT FIRST HAND. HAVE WE NOT??
So I am here tell both sides of the tales… His side, her side, the “truths of it all.” The bullshit of not having insurance. Of getting meds declined when you need them to live. I just did! I had my most important med declined and had the delightful joy of paying out of pocket – OF HOPING I STILL HAD MONEY IN MY CHECKING ACCOUNT HOPING IT WENT THROUGH. Because I needed it TO LIVE.
No one knows what it is like to NEED A MEDICATION TO LIVE until they do. But everyone knows what it is like to need air. So if you want make point have someone hold their breath and then hold it and hold it and hold it. And tell them they need to start paying for the air they breathe because IT ISN’T ON THEIR INSURANCE PLAN yet their doctor finds it medically necessary.
And who on earth ever thought THIS would be our lives? WHO THOUGHT? None of us. We live with it – this bullshit – the fucked up bullshit. Some of us have more VISIBLE AND OBVIOUS illnesses. Some of us have wheelchairs and crutches. Some of us have less obvious scars we can cover. Some just have these MEMORIES – painful memories we can share… like weapons or like balm. It is our choice.
I struggle right now. I teeter. I am overcome with so many of them. It is UNFAIR AND UNREAL right now to hear of so many losses. Life is so precious. It is so powerful. It is so important.
The leaves fall from the trees and everything looks like it dying from everyone’s perspective. The tree it is dead! Should we cut it down? Give it one more season let’s see how it does! And then spring comes and the sap moves and all the trees have told each other story after story underground silently when no one could hear but each other. And even the frost bitten branches decided it was time to live. And spring comes. And greenery bursts to life. And some even have pink blooms. ALIVE! Pink blooms! Even the frost bitten branches decide to bud this year – PINK. Because fuck dying. That will come soon enough.
So where are you? What were YOU supposed to be doing at this point in your life? Your careers, your children, your marriages, your life? Could you tell me a thousand stories too? Could you heal me or wound me with them? Which do you choose? Life or pain? Is it hard? Are you struggling? Is it a mind fuck for you? How many friends have you lost? How many have you gained from your illnesses? Are you stronger now? Do you have weakness? I want to hear your stories. I want your words. Let us heal each other, shall we. It is time is not?
Thank you for being in my life. Same time same place next week! Kisses!
Tags: chemotherapy treatments, Chronic Snarkopolist: Alive - With Pink Blooms, defining normal at 24, living with chronic illness and cancer as a young adult, managing chronic illnesss, managing doctors, memories of good health, traveling with bags of medications, unfairness of chronic illness, wanting a normal life despite illness, Written by Melissa Travis chronic autoimmune conditions column