Like many of you, I wear a nose hose and like some of you, I am in Stage IV Copd.
There is no Stage V!
My numbers are terrible, but my life isn’t.
There are good days, and there are days and sometimes weeks when I serve some hard time in this prison of our lung disease.
I use the word ‘prison’, because that best describes how I am – someone trapped inside her body.
My breathing can be ok at rest, my mind can run away with me, but if I act on an impulse to hurry, say, towards a ripening tomato, I can be doubled over, clutching a fence, seeing stars, waiting to catch my breath.
My Mum told me that was called Air Hunger. She had been panting for breath and had looked up at me with her beautiful turquoise eyes, the last thing untouched by this disease. The dreaded moon face, the blue tinge around the lips, the gasping to speak. And playing with the grandchildren would always be out of reach.
I didn’t have COPD then. I smoked and thought I had plenty of time to give up. I was a runner, played tennis, liked to dance and swim. I was about 35, carefree and in love. But in just seven years I would be told I had “unfortunately” developed severe early onset emphysema.
I didn’t cry but I felt dread in the pit of my stomach because I knew exactly what lay ahead because by then we’d buried Mum, aged 71.
She would tap her temple and say, “It’s all up here, you know.”
“That’s where you meet your disease.”
My Mum fought uphill and down dale in an era when all they had was prednisone and antibiotics. And she was allergic to those. She had countless infections and near death scrapes. Then came the common fungus aspergillus that coated her wounded lungs. The coughing was relentless. She was a fighter alright.
She wanted to live.
One day we were sitting together, her tethered to a loud old steam driven oxygen compressor, and she started to talk about dying. Well, about living, really.
“I won’t kid you that this is easy”, said a woman who had borne eight children, lost two homes in flood and fire and knew the ‘stings and arrows’ of life.
Finally retired and living by the ocean, the COPD felled her.
My mother never lived long enough for me to share my own diagnosis with her.
She would have been so kind and so sad.
In turn I would’ve helped her with some of the new ideas about the critical need for exercise and she would have marveled that I had been fitted with the new bronchial vents that promised relief but, for me, did not deliver. I now spit blood every other day as they prick into me but are too embedded to have removed. I don’t regret trying it out one bit.
My Mum would have cheered me on for having a go and I hope she would’ve understood that now at 57, with a recently healed broken hip, that I can’t stomach the idea of a lung transplant. It’s not for me.
She, like me, grieved losing the capacity to bush walk, to swim out beyond the breakers, to dance in a hot smoky bar, but most of all, the little daily things we take for granted: To move briskly around the place; to sweep, to garden, to hang out washing. To travel to wild undreamt of places. To hurry—for anything or anybody – forget it!
One time before I knew my fate, Mum and I were sharing a cuppa looking out at the ocean. She looked at me with bright blue eyes and she said, you know Barb, ‘Little fish are sweet’.
So in summer and autumn, when it pains me a little to watch all the tourists in our seaside village come to swim, play beach cricket, scale the nearby cliffs, go kayaking, I remember my mother’s words that ‘little fish are sweet’. I make a pie, or I make a poem or I make a phone call to someone who might like to hear from me. We laugh. I forget about what I can’t do. I don’t want what I can’t have.
I now know my mother’s secret. I know that the little fish are gratitude. That any little thing life offers up can be sweet. That I wouldn’t be dead for quids. And that living at the end of the road with COPD is not too bad at all.
Little fish are indeed sweet.
This post was first published by Derek Cummings on his blog http://bitz-and-bobz.co.uk/copd/ and became a spur to reach out on my own blog.
Derek shared some of the feedback to my story and I realized I could learn a lot from others living with chronic fatal illnesses.
Up next, how a celebrity astrologer ‘angel’ came to my table and encouraged me to begin blogging.