This version of the script focusses on an artistic representation of the experience of being me through the final stages of Karen, my wife’s illness and then her death in January this year.
L – ‘Thank you for being the most amazing part of my life. You are my soulmate, best friend and made me who I am. I am so lucky to have had you in my life. I love you forever my Darling.’
K – ‘I love you too darling. No woman was ever loved more than you have loved me.’
L – ‘I will be joining you soon.’
K – ‘Not too soon I hope. Have some fun and give me a bit of a break. After all, for me, it has been forty long long years!”
L – ‘Ha ha and for me it went in a blink. You will be with me always and every day every bird I see will be part of you. I love you so much.’
K – ‘Love you darling. Look after the boys for me.’
Thirty minutes later the love of my life, my soul mate and the person I have shared my happiest moments with is at peace. Her pain and suffering is over. She left with a smile on her face. I am devastated. The heart of my life has been torn from me. I did not want to live.
Multiple Sclerosis crawled through her nervous system slowly at first but increasing each year over thirty years. She could no longer feel a kiss ten years ago. Even the gentlest hug was painful for her five years ago. Her legs stopped feeling, then her waist, then her arms and then her hands and fingers. She fought it every way she knew, with diet, with guts, with specialists and always a smile.
I was with her on this journey to hell. I loved her every minute of the way and hated what she was going through. Everything I did seemed to fail and she just kept getting worse. I tried everything and when it didn’t work I tried harder. Eventually I fell apart, saw myself as a complete failure and no hope. On three occasions I was two paces from ending my own life. I have often wished I had gone through with it but in this moment I am grateful I did not.
We fought bravely together with each new normal. In 2018 we had over twenty five dinners and bbq’s at our appartment. Usually there were at least six guests. We got two invites back. Eventually people started dropping us as a couple and rapidly deserted Karen as a friend. Even now after inviting sixty people to a memorial only two people have invited me to something with their friends. Talking to others facing chronic illness this is very normal people behaviour. One told me a really good friend of hers would cross the road when she saw her coming and keep her eyes to the ground.
In the last year every day started with the painful process of her getting up. This took between one and two hours. There was pain but also laughter as Sabrina, Kenny and Miranda fell in love with Karen and cared for her in the most exceptional way. She needed to be hoisted from her bed, toileted, showered and dressed. When she was in her chair I would give her a gently hug as she cried on my shoulder. Every day.
I kept organising events and taking us out and tried to be annoyingly happy and upbeat. We had to leave restaurants often because of extreme pain and other problems. Once at a Michelin 3 star restaurant we had to leave after two of ten courses. I took us through photo albums to remember the great life we had.
We got married in 1980 after dating for five weeks. We spent the first two years in Antwerp, Belgium, had two in Cleveland Ohio in the USA a wonderful four years in Singapore and then many happy years in Spain. Three amazing children Alex, Tom and Dan and our grandchildren Leo and Ella. We loved, laughed, talked and she was my princess.
Photographs reminded us of the fabulous life we lived together and enabled us to laugh again during recent times of extreme difficulty. It was hard to keep my spirits up but I did so as the only person who could be with her all the time to try to get something out of life. We watched TV programmes together. The end of the day was tough as she would go in to violent painful spasms and be crying out as her leg became as solid as an iron rod. I felt every wince.
How could I let someone I love so much leave me and carry on with life? I don’t know the full answer to this question. Karen was clear it was not my decision. She took her decision with the help of two very close friends as we agreed I was too close to it to be involved. I said I would support whatever she wanted but I wanted her with me as long as she could bear it.
I describe her death as a beautiful way to die. She was content, smiling, surrounded by those who love her. Dignitas were incredible in their care and spiritual in the process they followed. At all times their advice and intention is to find ways for a person to continue living. She died smiling and happy listening to Vaughan Williams A Lark Ascending.
After she died I fell apart. I saw no point to life without my life partner. She was everything to me. Then eight weeks of brutal lockdown in Spain left me completely alone with no physical human interaction. I became suicidally depressed. In this moment I can remember being that black but cannot understand how I feel good now.
I took steps to help myself. I knew it was going to be bad. I had two months of Tai Chi instruction before the lockdown so could spend two hours each day doing that. I focussed on diet, no alcohol and walked 5kms a day around our apartment which is a 200m circuit. I worked with a therapist and eventually with her and my doctor agreed to go on antidepressants. I hated them for four weeks as I either slept or wanted to sleep and could not do anything.
They helped and now social life is back, for now, and I am feeling good.
My doctor told me the average time for a partner to share serious suffering of their partner in a life is three months. He explained to me that having gone through thirty years and the intensity of the last ten it is remarkable I held myself together.
I am incomplete without my princess. I am finding ways of keeping her with me but miss her so much. With family and friends I intend to enjoy life. It is what Karen told me to do.