The Organ Recital

by Asifa Kanji

Organ recitals are torturing me. Who is wailing this time – my kidneys, my appendix? A sharp pain in my groin has me thrashing to the point of wanting to be put down, like an old horse who has seen better days.

Call 911. I trounced that thought in a trice.

Shoot me first. I would rather die in my own bed. In the ER, they would open up my body’s Pandora’s Box, bringing to light all that I didn’t know was broken. This would be the beginning of serving a life sentence of pills and pricks, medical probes, and compartmentalized boxes filled with little tablets. I lie there in a kind of rigor mortis, fearing that any movement will awaken the havoc-wreaking devil in my body. Slowly, the wave of pain subsides.

What if? What if I have cancer? What if?

It can’t be. See, the pain has gone. It was just gas. I have been full of it lately. I review everything I have eaten in the last 48 hours. Nothing unusual comes to mind.

This is the third episode in as many months, the voice from inside pipes up.

Yeah, so – look, I’m all better now. It is nothing.

Maybe if I tell myself enough times that it is nothing, my body will get the message and it will be nothing.

Are you sure you are ready to die? It is that same voice from inside, nagging.

Fear of illness devours me, chewing up my independence, my youth, my very being. Doctors will feed me with fickle hope and potions, drawing out my life, just because they can. I had sworn that I would let the cancer, or whatever disease, take me down. No treatment, just painkillers, I repeated over and over to my husband, my friends and my family. I have witnessed modern medicine do everything in its power to beat death as though letting people die is a failure. Please support me when I say I do not want treatment, I wrote in my living will. Now I wonder if this pain is death’s calling card.

This morning, the bleeding from my colon stopped. The violent tummy cramps stopped. I am nursing a cup of hot tea as I sway in my hammock. The wind chimes are singing a gentle, Zen melody. The song fades into quietness and then picks up again with the morning breeze. The grass and the trees smell so fresh, looking clean and bright after yesterday’s rain. They are enjoying the sun as much as I am. As for the hills, they are crowned with huge messy dollops of clouds, spilling carelessly down their sides. Oh what a beautiful morning. I cannot help having that wonderful feeling that everything is going my way.

I want to live. I want to be healthy. I want to write, especially my mum’s story, a legacy I want to leave behind for my nephews. I want to kayak in Antarctica, and camp out at Machu Picchu. If I am diagnosed with something big, maybe . . . Maybe I will seek treatment to heal my body. How quickly my principles are crushed when they bang against reality! For the first time I am beginning to believe that we are programmed to want to live, to survive, until death takes us. This is a new experience for me. I always thought I’d have the courage to say, “This is it!” and allow myself to die. I wasn’t going to be like my mother, my uncle, like so many of my relatives who just lingered – every caregiver’s nightmare. I always wondered why they didn’t stop their treatment. I certainly did not see them enjoy anything that I would call quality of life. In fact it was the opposite. They were dependent on me to take care of them and to advocate for them. That was not the journey I wanted to take. But now I see how hope seduces me, but, but . . . fear is knocking ever so loudly, wanting to be heard. I listen.

I fear my husband’s love for me will drive him to do everything possible to fix me, yes even bind me with duct tape or lubricate me with WD40. I fear that he will do so much for me that it would disable me and undermine my own fight to live. I fear we will go from being friends and lovers to patient and caregiver. I fear friends will turn into advisors, and in their need to heal me, they will infantilize me. I will become the person that my friends do for, rather than simply enjoy being with. There is nothing like illness to bring the good Samaritan out of everyone, paying their karmic dues forward, fervently hoping the same fate won’t befall them. Most of all, I fear the whispers, labeling me as the sick one. It would render me worthless, like I had had a lobotomy.

I remember well when David cracked his hip and was temporarily wheelchair bound. People would talk to him loudly and deliberately, using their kindergarten vocabulary, or would address their remarks to me (the wheel chair pusher) as though David needed to be pushed around because he was too stupid to walk, talk or think.

I have not told David or anyone about the bleeding. He would be terribly concerned, as would I if the situation were reversed. The difference is, I am struggling with myself and don’t have the energy to deal with his emotions. I am not ready to do the obvious, like see a doctor. So why should I put him through the panic?

Am I a fool? I could nip this in the bud with a checkup. The thought of having instruments shoved up every orifice, especially the ones at the lower end, makes me shudder like a sail in storm. What if they do find something serious? Maybe I should stop depriving myself of triple dark chocolate ice cream and freshly baked apple pie a la mode. After all I have done for my body, taking it for walks, feeding it nothing but the best, yet it is shedding my health, memory, energy like it were getting rid of bad debts. What the hell, I should just say yes to red wine, deep fried chicken, forget the salads, and die happily ever after. But I know death doesn’t come that easily. Fear and anger are holding hands again.

Skip treatment. Avoid the medical quagmire. Fall asleep in the snow, the voice goads me. You are lucky, there’s loads of snow up there, and it will soon be over.

Yes but. . . I want to have a going away party – you know, a wake while I am awake.

Forget that, my brain says, you are giving up a hell of an opportunity to go while the going is good.

S T O P it! screams the other voice at my brain’s tireless commitment of sending me to hell on a bullet train.

Oh, maleficent brain, be quiet and let me think about how I might handle a dire diagnosis. Let me dance with fear for a while. Let it lead me and teach me. I beg to differ with FDR. I don’t believe that the only thing we have to fear is fear itself, or that to fear is to lack courage or faith or love. It is only when I give my fears a voice that the seeds of hope and love are born. Finding out just exactly what it is I fear that I am able to come up with solutions. But having a conversation with fear is like talking to a belligerent teenager. I have to show compassion, empathy and give it space to come out and talk to me.

Becoming a helpless invalid is a real fear that is exacerbated by people’s well meaning and loving intentions. So how do I keep my dignity and self worth? How do I not become a victim, or fall into the trap of becoming a professional invalid? How do I avoid talking incessantly about all that hurts? Organ Recitals, a friend calls them.

I do not wish to bring attention to all that ails me. I don’t need a peanut gallery clapping their hands every time I am able to poop. I am both fickle and strong in mind, and have a tendency to design my life as I go. Should I be diagnosed with a major illness, throwing me into the briar patch, I have no clue how I will cope. But dear ones, should you choose to journey with me as caregivers, I have put together some thoughts on how you can support me, and help allay my fears and maybe yours. Knowing what to say or do in the face of death or illness is really tough.

So my dear friends and family, here is how to support me, should I seriously fall ill:

Tell me that life sucks, and HOLD the advice. I most likely know what is good for me. I need someone to listen, while I think out aloud and air my anger and my fears, tilling my own soil to plant hope.

Make me laugh. Do things that will make me forget for a moment that my body is falling apart.

Hold my hand, look me in the eyes and tell me that you love me. That will give me the strength I need.

If I can’t do it myself, paint my toenails in wild colors; give me a foot massage. Touch me. Hold me.

Sit and eat dark chocolate or sip a glass of good red wine with me.

Don’t greet me with, “how are you doing?” Instead start the conversation with the mundane. It’s a lovely day, or my god the traffic was awful. Took me twenty minutes to find parking or whatever else is on your mind. Ask me what I would like to do or hear about.

Don’t assume that just because I’m sick, I should be protected from whatever is going on in your life. Tell me your hurts, your pains, your frustrations, even if it has to do with me. Let us process and cry and laugh together. Most likely my brain is still intact. Tell me, because that makes me feel included rather than isolated.

Even if I need help eating or wiping my bottom, it does not equate to brain failure. Allow me to do things for myself, however awkward or painful it may seem to you. I promise I will ask for help, should I need it. Don’t be afraid to tell me “No” if I am pushing your limits.

Don’t feel sorry for me as it is a part of my journey. Painful experiences are like the thorny stems of rosebushes – they hold sweet smelling rosebuds, just waiting to bloom. Let us together not allow ourselves to bleed to death from the pricks of the thorns.

Let us see the illness that has befallen, not as an end, but as a new opportunity to live life in ways we haven’t before. Surely that is a more fun ride to go on.

My worst fear is that our relationship will change to one of caregiver, and the lump that needs looking after. When I am no longer able to care for myself, hire someone to come in to help. Please continue to go out and participate in life as fully as you can, for that is the energy I want you to bring and share with me. In that way, we’ll continue to enjoy each other and continue to build on the relationship we have enjoyed for so many years, even though life has taken a turn and suddenly we find ourselves on a different path.

There is so much written about caregivers and the sustenance they need. Avail yourself of that, but most of all realize that you cannot fix things for me, and that you are not in charge. Don’t waste energy in believing that if you could just get things sorted out properly and get all of the right people lined up, you could make everything better. It will be easier for both of us if you let me figure out how to deal with my illness or condition, and allow me to do it my way.

In return, I promise to also be there for you. I will try to remember that this is not just my journey, but for us to walk together, hand in hand . . . . until death do us part. May we have the courage to be there for each other, without taking away from each other’s life’s joys and pains.