The view from here
It really was getting tiresome, this coughing all night, and sometimes when he phoned me I couldn’t understand what he was saying so I’d shout “Talk to me when you get home; I can’t hear you on your stupid phone!” And the tiredness! He’d come home from work and forget about all the nice little jobs I’d lined up for him like mending the cupboard door or sorting out the temperamental flush in the downstairs toilet. One week he went out for a drink and came home hammered. “I promise, I’ve just had the one shandy!” he slurred.
The choking-on-food thing was beginning to feature heavily in family meal times so I suggested he get it checked out. “OK” he said. He didn’t. Then in May everything added up in a split second as we were driving to Devon for a short break with some of the family: “Sometimes I can’t get my words out!”
It’s hard to describe the complete terror: I knew this was MND.
I felt as though someone had thrown a bucket of iced water over me (ironic, huh?) and it was spreading from my heart to my limbs as the realisation found a home in my head and took root. As we spent 4 days with our infant grandson and his parents in heart-stoppingly beautiful surroundings I worked to damp down the rising panic, watching his every move and listening to his breathing as he slept. I tried to rationalise him out of the illness; he’s tired, work is really busy, it’s stress. But the monster was out of its box and it wasn’t going back.
The diagnosis in July was just a confirmation of what I already knew but I wasn’t prepared for the violence of my reaction; I shut myself in the bathroom, crying and rocking. Being a nurse can be a double-edged sword as I had cared for many people with MND and knew the path he faced. The fact that it was Bulbal Onset seemed particularly cruel as he’d never been much of an athlete but he would miss his voice.
I tried to carry on at work but the casually discussed end of life care for a patient, or a decision to put someone on thickened fluids were amplified, and all I could think of was Michael. Tears were never far away and I couldn’t concentrate; I wasn’t safe to work. After trying to continue for a few weeks to give him a feeling of normality I resigned.
Being a fake Christian
Michael’s faith had been annoying me for a long time. Experiences in another church had been damaging enough to send me on a 16 year journey through different faiths and belief systems and I had settled on Humanism as being the most practical (with a little Pantheism thrown in as I love trees). I knew that his faith would be more important than ever and that I couldn’t trust him to leave the cake alone after Church if it was on offer so I decided to go with him, faking it so I would fit in but not too much; I didn’t want to end up getting involved in stuff. I didn’t try any of the bargaining behaviours with God as it seemed like blackmail to ask a Holy Entity to cure my husband if I came back to Church. So I stuck a smile on my face and prepared to be bored, angry, and a big fat liar.
The moment I walked into the building that had been Michael’s home Church when he first moved to Abingdon 40 years ago was like a home-coming. Peace flooded my soul as I listened to the words which were so familiar to me but I had ignored for so many years. God was my friend and I was back. No fanfare, no being knocked out by the power of the Holy Spirit, just a warm feeling; God was saying to me “It’s good to see you, welcome back.”
I didn’t sing much, I cried through most of the worship, but somewhere in the calm of that familiar building I found my faith again. My third spiritual journey was about to begin and I was content and completely amazed. I had turned my back on God because I had no conviction that he even existed any more but in an instant I knew that he was with me and nothing could ever change that.
I bought a bible in large print with just the one column for my aging eyes and read my favourite parts with a growing feeling of calm. It was as if I had never been away.
Step by step loss
Every small adjustment to life with MND was a little loss. For as long as I can remember Saturday lunch was crusty white bread and red (tomato) soup for Michael and the boys but bread was the first food to go on the dangerous list. Soft pasta became the substitute with the occasional lapse followed by choking. Ben was always at hand, eager to carry out the Heimlich manoeuvre, but we haven’t needed his advanced first-aider expertise yet. Salad became a banned substance though not so sorely missed. Sleeping with my arm across his chest became uncomfortable as his breathing became more of an effort and alcohol was banned until conversation was no longer required as his speech became unintelligible.
I found myself doing more of the driving, much to the dismay of my sons who can’t shake off the memory of the number of collisions with stationary objects I’ve had just reversing off the drive. Snuggling up in bed became less comfortable as Michael needed to sleep propped up on a huge foam wedge to help him breathe.
The first conversation about a PEG angered me; Michael wasn’t ill enough to need that! So many of my severely affected stroke patients had PEGS but they were mostly in their 70s and 80s and didn’t have a good prognosis. I strongly resisted the first time it was brought up, angrily believing that the medical staff were in too much of a rush to start poking holes in my husband’s body. Michael, as ever, kept a level head and talked me round. Just.
The PEG was a visual reminder that he had MND. It felt like an attack on him and I found it very hard to deal with. As a nurse trainer one of my most frequent sessions was on PEG management and for me a PEG had bad connotations. You didn’t often get it removed. This was a major step in the wrong direction. Through it all he kept his sense of humour and proportion while I was busy catastrophising.
As 2018 waits for us I look back at 2017 with more joy than sorrow. More good things have happened than bad and we are closer than we have ever been. Our journey through the shadowlands has brought out the best in us and with God on our side we face the future with hope and contentment.