It all started before Christmas, 2012 with a virus that I couldn’t shake off. I felt very, very tired and then I began to get a pain in my back which wouldn’t clear up with rest. I have a chronic back problem which a physiotherapist had been treating on and off for years but this pain seemed to be different.
Two or three days after the initial pain, one of my legs gave way when I was going to the toilet at night. The next night, both my legs gave way and I ended up kneeling at the door of the toilet. The following morning, I couldn’t get down the stairs. I got a sinking feeling that this was something serious.
I went to my GP who sent me directly to the emergency department at St Vincent's Hospital. I was seen by a triage nurse there within 10 minutes. She advised me to go home for the night and then phone and come back in the morning when beds were available. Instead, I decided to go to the Blackrock Clinic straight away.
The emergency consultant at Blackrock Clinic saw me within 15 minutes of arriving there. I had my bloods checked and blood pressure taken, a brain scan, a lung X-ray and an ECG on my heart. With a bed available, he admitted me to the clinic and said that I needed to be seen by a neurologist and an orthopaedic consultant.
Within an hour, I was sitting with my partner, Kay, in a corner bedroom at the Blackrock Clinic. I wasn't in a huge amount of pain but fearful of collapsing when my legs gave way. I had been using crutches to get around since my legs failed me.
Two hours later, the emergency consultant told me I’d have to have an MRI on my spine the next day. I hate MRI scans as I’m quite claustrophobic but when the time came, the radiographer kindly divided the scan into three sessions (two by 10-minute and one by a 15-minute session). She reassured me at each break.
Bad news
On Saturday morning, a neurologist came to see me. He asked me to come out into the corridor so he could see how I walked – with the crutches. Right there in the corridor with no one else with us, he said, “I’ve looked at your X-rays and you have a serious problem in your vertebrae. If you don’t have something done about it, you will be paralysed from the waist down sooner rather than later.”
I felt like someone had hit me in the stomach but I kept my head – I’m good in a crisis even if I collapse afterwards. “I’d probably have surgery within two weeks if I were you,” he added.
He didn’t explain the cause of the problem or what exactly would be required. I rang Kay and we both burst into tears. Yet, I was glad that a decision needed to be made right away.
The emergency consultant came back into me to explain that many of my vertebrae were in bad shape and that I also had discs bulging out of place which were pressing on nerves and my spine was curved. The condition is called Spondylolisthesis. He explained that the surgery would involve putting in clips to hold my spine in place.
My heart sank but I knew that I really had to have the surgery. On Monday morning, the spinal surgeon I had requested, Pat Kiely, came to tell me that he would do the surgery as soon as possible. He came in to see me again on Wednesday morning to say that he could do the surgery at 2.30pm that day. I was flabbergasted and terrified yet delighted.
Kay had worked on neurology wards as a nurse and she knew exactly how serious this was yet she never let me know how worried she was.
I had my pre-operative checks, extra checks by the neurologist. Then I saw the hospital chaplin who was very comforting and kind to me. We realised we had studied philosophy together in UCD many years ago, when I had returned as a mature student. I thought briefly that if I die under the anaesthetic, it would be okay yet I trusted the surgeon completely.
The anaesthetist gave me the first injection and then I was in surgery for seven and a half hours. The next thing I remember is Kay and Pat Kiely wheeling me out to the recovery ward. “Was it successful?,” I asked. “Yes,” he said. He was truly wonderful and incredibly skilful.
The next few days, I felt very floaty. I also had a morphine pump to alleviate the pain. The nursing staff were excellent but I found it very difficult to have male nursing attendants deal with my intimate physical hygiene even when they were polite and respectful. I specifically requested female nursing staff to attend to my personal hygiene needs, which was put in place.
Rehabilitation
I had a lot of post-operative pain but began rehabilitation straight away. I cried a lot after the surgery but the clinic psychiatrist said crying was perfectly normal and asked me if I would like medication (which I didn’t). I work as a psychotherapist so I knew I was suffering from post-traumatic stress and dealing with the shock of the surgery.
I stayed in the Blackrock Clinic for eight weeks and by the time I left I was able to walk four or five steps with crutches.
I spent the next four weeks in the National Rehabilitation Hospital (NRH) in Dún Laoghaire and I can honestly say it was one of the best experiences of my life. The care of the staff there is phenomenal. They are very kind yet efficient and treat you like a family member.
Although I was in a ward shared with men and women, I realised at this serious stage of life’s difficulties that gender doesn’t matter when it comes to who is next to you in a hospital ward.
While at the NRH, I had occupational therapy twice a week, physiotherapy three times a week, use of a hydrotherapy pool and later I had driving lessons to see if I needed an adapted car. I continued to go to the physiotherapy outpatients clinic at the NRH for several months.
I felt like I was getting back to myself slowly. I was driving without problems but I still couldn’t walk distances. Then, about two years after my first surgery, I began to feel pain again. I returned to Pat Kiely who told me that I needed more surgery. This time, the surgery had to be done in two parts, each surgery lasting seven hours. It was very traumatic but it was essential.
This time, I came home much sooner after the surgery. Kay and I moved into a new house which was such a great thing to happen at this time.
It’s five months now since my second surgery and I really still feel like I’ve been through the wars. I have had tremendous support from a physiotherapist who comes to the house twice a week for an hour. She works very hard with me and I do my exercises twice a day but I still can’t walk one step without a walker. I also have a wonderful full-time carer because I need so much help to do everything. I broke my wrist about six weeks after the surgery which was a setback to my physiotherapy programme.
Slow progress
Standing continues to be a big problem. The progress is much slower since my second surgery. I’m less optimistic and less accepting of my limitations. I’m still taking three different painkillers three times a day. It’s not easy to be positive and optimistic.
I watch rubbish television, listen to the radio and eat. I have had a lot of visitors because I love having people around to visit. It’s so important for me to see people because I find phone conversations very tiring. In some ways, moving house saved my life and seeing everything come together in the house and garden has kept me cheerful.
Serious illness is about letting go, whether for a long or short period or for ever. It can be the final letting go of all, preparing for and experiencing death or just lasting for a few days or weeks, as we surrender our independence physically or learn to leave decision-making and living arrangements to others. In no case is it easy.
My loss of independence was thrust upon me quite suddenly and unexpectedly. This had its advantages and disadvantages.
I think it helped me to accept my plight, as I had little choice, though of course that in itself is very difficult. In retrospect I think that lack of choice propelled me into contemplating my death very seriously in a way I never had before, even though I thought I had.
Actually, it’s very liberating. I feel as if I’ve been let out of prison with that feeling of letting go of fear and restraint.
I can at last begin to truly accept deep down in my being, what really is, what death involves and let all that fear and apprehension go, leaving me with enormous energy, freed up for living, in whatever way it is going to be possible for me – who knows?
