Grief

It is only 6 words.

‘I think you have polycystic kidneys.’

But there is nothing simple about being given a diagnosis. It means interaction with a new world of people and initiation into a different way of life – the doctors, nurses, therapists, surgeons, technicians, and the places you will find them in- the new hospital clinic you haven’t been to before, the x ray department, the laboratory, each with their own particular perspective on your illness and what is going to be best for you- body and/or mind. It is about learning how to speak in a different language. It is also about your own memories, ideas, worries and expectations of what that diagnosis means to you, and all the other things you will have to do in your life, or have done to you, that you have never experienced before and hoped that you never would have to. And all those things that you hoped to be able to do, but now perhaps never will.

I don’t have much memory now of how kidneys should work. Blood flows in and urine flows out- and the kidney works some kind of magic in between. The first patient whom I cared for long enough in my first job as a doctor to get to know as a person, and who I then saw die, had kidney disease. It was very different from my own. He had diabetes and came into hospital when a viral illness sent his damaged kidneys into failure. I listened in the ward office to the renal team as they decided against taking him on for dialysis, which unlike now was very unusual for patients with diabetes as they ‘did badly’. I watched from the door of the single room where he spent his last few days as he said goodbye to his wife and children. He was a young man- no more than 40. And I felt even more helpless as his wife screamed out in agony at the sheer unfairness of his sudden, and so unexpected passing. A phrase, ‘The Renal People’ uttered by the surgeon, a very kind and well-meaning man, evoked a particular and unwelcome memory for me.

Despite feeling fitter than I had for years, it felt as though my body had let me down. Something was happening inside me over which I had no right of determination. For the first few days after the surgeon delivered his verdict I felt numb. Then, like many people, but especially doctors, I spent hours on-line researching the subject until the rational part of my brain was exhausted. I collapsed onto the easy chair in my study and burst into tears. I sobbed until my throat was hoarse, my chest was tight and my shirt was wet with tears. John put his arms around me and held me. I knew I was beginning to grieve for the loss of my health, and the hopes I had for the future. And it all seemed so terribly unfair. Just `at the point that I had given up the work that was gradually killing me, and was prepared to restart that life I had postposed for so long, I had to find out that something else was going to do that anyway. The sociologist Mike Bury talks about the biographical disruption of chronic illness- how it necessitates a fundamental re-thinking of one’s biography and self-concept. The timeline of my life has been fractured and it is still physically painful.

Now I know that I have a genetic disorder of the kidneys that I’ve had for many years, but didn’t know about before, and which is going to get worse as I get older, at a rate as yet undetermined. There is a possibility I will eventually need to have dialysis. My kidneys and liver contain within them cysts, which have been slowly growing in size, squashing the healthy tissue into destruction since my childhood, or that is what the Professor of Nephrology had told me.

‘It is something you have always had. It isn’t new. Its autosomal dominant so you have a 50% chance of developing it if one of your parents carries the gene, but in about 10% of cases it’s a new mutation.’ He couldn’t understand why investigations carried out in my early thirties hadn’t revealed the problem then. As the years passed the timer on my kidneys had been ticking away silently inside me and I had been completely unaware. It had been programmed into me at birth and was probably running quite slowly otherwise it would have been noticed much sooner. But I suspected that the other problems that my family genes had contributed to- a constant sense of anxiety and periods of severe depression, would have been even harder to bear if I had known. Neither of my parents had been diagnosed with kidney disease as far as I knew before they died, but my maternal grandmother had collapsed in the street and died suddenly in her thirties. I’ve always believed that must have been due a brain hemorrhage, and brain aneurysms are a possible complication of this disease.

It may be impossible to ‘recover’, in terms of restitution to my former state of ‘health’, in mind or body and I have no idea what will happen in the future- other than I hope I can manage my mood more effectively than in the past, and that it is possible I may need renal dialysis at some point. I can no longer make the excuse that I am still waiting for the future to arrive before I have to reclaim the life I always wanted to live if I just had the time. The ‘future’ is now and I will have to discover how I can make the most of it.

My latest book, a memoir of psychiatry and depression, The Other Side if Silence is available now

With so many people experiencing loss and hardship at the moment its not easy to admit the depth of grief I have been experiencing over the last month. I’m sure I’ve glibly told many people over the years how ‘grief is a normal human experience,’ but that doesn’t make it any easier to bear. It may simply be an everyday kind of emotional pain, but it washes over me in waves of acute sadness and despair. One moment I’m fine, the next I’m in tears; and it hurts physically too. There is a pain my chest right above my heart. But this grief is not for a human being, but for an animal companion, my cat Sophie.

I’ve seen that wry smile on a colleague’s face when I tell them how it feels to lose a pet . Not that Soph was a ‘pet’, she was a fiercely beautiful but barely tamed Maine Coon cat who viewed the human race if not quite the enemy, certainly as all potential vivisectionists. But those who don’t understand how attached you can become to an animal are simply embarrassed by our tears; they don’t know what to say. Statements like ‘well you can always get another one can’t you?’ are unhelpful. Yes, I have another cat, but he isn’t her. He is different. I will probably have a few more in my life (or rather they will have me) but each one I have lost has left a unique shaped space behind in my heart that another will eventually fill- but not in quite the same way. Some colleagues of mine have written about the important part that animals play in providing support for people with long-term conditions. But we live in a society where older (and younger) people with mental health problems are regularly separated from their companions when they have to move into new rented accommodation due to the desperate state of our housing policy. I cannot imagine the pain of having to give up my companion animal. Perhaps I will have to one day.

Grief is something I know about. I treated many people in my career who were failing to grieve for someone, or something they had lost. It doesn’t have to be a person, it can be a career, a person, your health, or even your hopes for the future. The list is endless. The process IS normal but it can be frightening if you have never felt it before. It isn’t the same as depression although if a person fails to grieve properly depression may follow, and in the vulnerable, loss may trigger it. But it should not be medicalised as it has been in DSM-5 where two weeks of depressed mood following loss is taken to indicate depression. Two weeks? That’s crazy. Grief can take years, a lifetime to resolve. The key thing is the trajectory of the process and the severity of the symptoms. Is it gradually getting easier over time or unchanged in intensity? How low are you feeling? Have you had thoughts of suicide or wanting to join the dead person? I failed to grieve successfully once when I lost someone very important. I didn’t talk about it. I tried to work my way out of it at the hospital rather than go through it. You cannot shut it out. You have to talk, remember …and weep.

Sophie was killed by a fox one night in August. She loved going out at night to hunt. She began her life as a pedigree puss and then heard the call of the wild. She escaped when she got very frightened as were taking her to a cattery and wriggled out of her harness. She would never travel in a cage. I missed her terribly but I always hoped she come back to us, and she did. She spent two years living rough before she finally trusted a lady enough to accept help, and was returned to us (due to her microchip) by the RSPCA. She would sit next to me on the sofa and purr loudly, demanding her share of my love. Her coat was soft and silky before she disappeared, but woolly and thick when she returned after two winters outside in Yorkshire. But she knew she was home and she embraced it with enthusiasm. She was a happy, healthy cat and she was only seven years old. It’s really hard to accept she could have survived so long on her own and then die now. But I couldn’t have kept her inside. That would have been unbelievably cruel. Yet I still feel I should have been there to protect her. Grief isn’t just about sadness, but guilt and anger. And remembering.

I have some of her fur, and a library of pictures to remember her by. I can look at them now. It was very painful at first.

It’s getting a little easier each day. That I’ve been able to write this is a sign I’m coming through it.

But I’ll always miss her.