The wound

This morning I am sitting at the kitchen table keeping an eye on an unusually quiet dog. Yesterday afternoon, out walking with my wife, in the course of her usual mad chasing through the woods, Holly somehow managed to tear a gaping wound in her back left thigh. Jo, being resourceful and swift of mind, immediately phoned the vets, booked Holly in, phoned me to bring the car to them and generally took control of the situation. She’s good like that.

So, by 10pm last night, we were able to pick up a subdued but stitched up Holly from the vets, bring her home and put her to sleep in her own bed. Jo wanted to sleep with her in the kitchen but I managed to persuade her that this was perhaps not necessary.

All this got me reflecting upon how my Parkinson’s has altered the dynamic in our household over the past five years.

For most of our married lives I was the main bread-winner. We had not planned it that way. I never felt a burning pressure to be the male provider. By our natures, Jo is the more dynamic, active one – the one who makes stuff happen. I am more passive, accepting – the one who enables stuff to happen. There’s a subtle difference but the combination works – stuff does happen. Lots of stuff! And we both like lives with lots of stuff happening. Some people don’t. It took me a long time to realise that. Some people want stuff not to happen. And that’s fine. Sensible, probably. But, Jo and I aren’t like that. I think that we are both easily bored. We have a low tolerance of stasis. When the waters calm, we can’t resist throwing in a stone. Just to see what happens.

Jo and I met on our PGCE Teacher Training in Sheffield. We were on placement together at Gladys Buxton Middle School in Dronfield. Getting there and back involved a long and complicated bus journey. Three changes. One morning, waiting at a bus stop, Jo told me that she had dreamed that she had laid an egg that hatched a sheep. My interest was piqued. On our first date, she told me that she could call down owls. She took me into the woods at night, cupped her hands and let out a terrifying shriek. A tawny owl swooped out of the darkness and over our heads. I thought I best marry her.

Our courtship was not without its challenges, mainly due to drunken, dissolute behaviour on my part and the consequences of my past indiscretions. But eventually we did make our vows, tie the knot, get spliced. We were married  in an open air chapel in the woods. At Kinver Scout Camp. We had a ceilidh and a camp-fire. There was singing, dancing, fire juggling. Jo and I both did speeches. It was great. A very happy day. For our honeymoon we spent a week exploring the Welsh Borders. We concluded the trip watching Nick Cave at the Reading Festival. Perfect.

Then we left to go work for VSO in Sri Lanka. We were supposed to go for two years. But stuff happened. As it always seems to. Jo started to have pain in her lower back. It got worse. And worse. Eventually we were flown home – Jo in a wheelchair. She spent a year in hospital in Sheffield undergoing test after test. Growing thinner and weaker. Finally they found the cancer. In her bones. She was given two weeks to live. Then a biopsy shone a faint ray of hope. Another year of treatments. Chemotherapy. Hair loss. Hospitals. Hickman lines. MRI scans. Wards where people died around you. Jo battled on. I am sure that she survived on pure strength of will. The NHS was brilliant. Some doctors were better than others. We called her consultant Dr Death such was his reluctance to offer false hope – any hope. Jo made them all care about her. One doctor in particular took up her cause.  Stuart didn’t offer false hope. He just did all he could. In the end, he suggested that the only way to guarantee the cancer was gone was to give Jo a treatment so strong that it would destroy all her bone marrow. They would spin new bone marrow from her own blood and use that to replace her destroyed marrow after the treatment. It was all very new. Only two people had undergone it previously. One had survived. One had not.

That treatment probably saved Jo’s life. Gradually she got better, regained her strength. I got a job in my home town of Dudley. We bought our first house there. At that point, we needed some stability. A place to recover. So, we got a mortgage and I became the bread-winner as Jo concentrated on regaining her strength, getting better. Before long, she got a job teaching in a Primary School and we were both bread winners. Eventually, we earned enough between us to consider moving house. We were fed up with living in the city and fancied somewhere more rural. We were really lucky and found somewhere in Shropshire that was commutable. It needed work and it was right at the limit of what we could afford so we would have to do the work ourselves. But we loved it. So we moved. We couldn’t believe our good fortune. And then, it seemed, the time was right to think about adding to our family.

But the treatment that had saved Jo’s life had also destroyed any chance of Jo having a child naturally. We embarked upon a long, arduous and expensive process of treatments. Eventually, a fertilised egg was implanted in Jo’s womb and nine months later: a miracle – Sam was born. So much had we put into getting Sam into the world that we certainly were not going to hand over the child care. We wanted to share every moment of his life. So, Jo gave up her job and, once again, I became the bread-winner. Our income being halved, we were forced to sell our house and down size to a more modest dwelling.

We have moved house a lot during our marriage. Each time we have managed to make money on the move. It’s not like we are property developers or anything. It’s just that Jo is really good at getting work done on a tight budget. We buy houses that need some work doing. Jo sorts it out. So, even when she has not had a job – not been going out to work – Jo has always generated income through the work she does on our house at the time. She has the fire and determination to get that sort of stuff done. It demands short bursts of intense activity. I am the one who is able to stick at things, hold down a steady job with regular income. I can endure. Requires a different sort of determination. Different energy. The combination of the two energies makes a good partnership.

And then I go and get diagnosed with Parkinson’s and our whole world is turned upside down again. The disease has altered the dynamic of our relationship in a myriad ways. And, because it is degenerative, it continues to do so. Will always do so. We will never be able to settle down into a comfy way of relating to each other. The Parkinson’s will keep shifting the balance.

Most obviously, I had to retire from work and Jo had to get a job. Now, she went out and I stayed at home. She got a job teaching in a school for pupils with Profound and Mutiple Learning Difficulties. I began learning tai chi. She had become the bread-winner again. I learned how to make bread.

But it was hard. The situation did not suit our natures. I never had the drive to do work on the house and the Parkinson’s made it harder. The disease drains your energy, makes you really tired. I found it impossible to keep on top of what needed to be done. I just ignored it. Jo found it hard to endure the constant pressure and conformity of teaching. Plus she had the added pressure of the work at home that I was unable to do. The cracks began to show. It was not an easy time.

So, we had to learn to adapt. And keep adapting. Because stuff kept on happening. It always does. My dad became ill and needed our support. Eventually he died and left my mum needing our support even more. At that time, Jo had a cancer scare and subsequently a hysterectomy. She was left reeling with the physical and emotional consequences of that whilst my mum’s health was deteriorating and she was demanding more help, I was struggling to find a medication mix that would provide me with enough equilibrium to cope and somehow be of assistance or at least less of a hindrance, poor old Sam was trying to get on with the tricky business of being a teenager. And Jo was desperately trying to juggle the support for us all whilst dealing with the consequences of her operation and holding down a demanding job.

When my mum died it was, if I am honest, a relief. It took off some of the pressure. Enough for us as a family to take a breath and regroup. And we realised that, if we wanted to carry on, we had to reinvent ourselves. Mutate and Survive. Jo packed in her job. I changed my medication. The balance shifted again.

Jo now works from home as a Shiatsu practitioner. I teach tai chi locally. We spend a lot of time together now. Most days. And mostly it’s good. Very good. Probably the best it’s been for a long, long time.

We have learned not to worry too much about the future. Nobody knows what the future holds. Most people live their lives in denial of the possibility that something bad may happen. And actually we do all know what the future holds but we live our lives in denial of death. We put things off as if we have limitless time. But we don’t.

Our experiences have taught Jo and me to live as much as possible in the moment. To grasp hold of life and dive in. Think really carefully about what we want to do with our limited time on this planet. Listen to our hearts. Ignore what people say and do what our hearts say is right.

Parkinson’s is a hard thing to live with. By its nature, it will continue to shift the power balance and put pressure on our relationship. But it is also a gift. It strips away your dignity, removes the option of carrying on as normal, forces you to confront who you really are, who you really want to be. Parkinson’s tugs away the safety net, pushes you to the edge and says “Go on then…”

And that is a gift.

Who knew you could fly?


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