Creutzfeldt-Jakob Disease (CJD) is in the news. While the beef connection has not been fully established, this illness remains a human tragedy.
David was an intelligent man, who went straight into work for London Transport from school. He achieved an Open University BA Hons. while being husband, father, deacon and temporary treasurer of the church, in addition to other numerous secretarial duties out of work time. He was always thinking. Why then did he contract CJD which first affects the brain?
We had been married for 16 years in 1985 when what appeared to be disaster came to us. He became ill and was diagnosed as having a brain tumour. It was (to say the least) a devastating time for our family. Our children were then 15, 14 and eight years old. We had many questions and found it difficult to trust in God then. I was fearful for the future and unable to contemplate how I would cope with a husband who might at the best be an invalid for life, or at the worst, needing to cope with widowhood. In July 1985 David had surgery to remove the tumour, and it proved to be benign for which we rejoiced. He improved in health and was able to return to work.
Eyesight
In 1992 David became unwell again, reporting visual disturbances. An eyesight test revealed there was some abnormality, and he was advised to go to his doctor and ask to see a consultant. At this point we feared a re-growth of the tumour. An appointment was duly made for November (it was then August). David's eyesight deteriorated so rapidly that within two months it was impossible for him to see clearly and he had to take sick leave from work, not least because it was dangerous for him to walk around alone. These weeks were horrendous for us. The neurologist wasn't convinced that it was a tumour, but didn't know what else could be causing his suffering. David's drugs were changed frequently as a process of elimination.
At some time in October David 'trained' me in the financial running of the household, as I had to take this over. He also wrote out what he wanted for his funeral service, but I didn't find this until later.
He said he wanted for his funeral the hymn 'The sands of time are sinking'. I was very unwilling to let him, me and the children think along the possibility of his death, and joked that I at least was not going to sing all of the original 19 verses!
24-hour care
David's general health deteriorated extremely rapidly and by the middle of November it was necessary for him to have 24-hour care. He was confused, uncoordinated and unable to sleep for any length of time at night. We had had to help feed him for a few weeks already, as he was not able to see his food. Apart from that he now seemed to be relatively cheerful. To keep David's own dignity we kept these concerns in the family as much as possible. This illness had come upon him so quickly that he had hardly much time to be able to communicate his thoughts, anxieties and fears to me, and very little time to think of the future. When he did try to speak latterly, the wrong word would come out, which made him very frustrated.
At last it was decided by our GP it was time to get him into hospital for investigation. During the previous few weeks I had been so busy and exhausted that it had been difficult to realise that God was in all this. There was so much to do to keep the household running that I depended on our church and Christian friends to bear us up in prayer. The relief of David going into hospital was enormous and I had time to sort out my feelings.
No diagnosis
In hospital many investigations were carried out, but it was not possible for the consultants to make a diagnosis. They had obviously never seen a case like this before. His drugs were changed regularly and he spent about a month in the intensive care unit. After this he was sent back to the neuro ward.
Christmas 1992 and David's birthday were spent in the intensive care unit. There was much encouragement by the staff to keep talking to David as he might have been able to hear us. He had a tracheotomy performed, and a 'speaking tube' in case there was a possibility of him trying to speak. He was sometimes on a ventilator and needed oxygen. Knowing now what he was suffering from, it is obvious he would not have been able to speak. His brain was fast becoming 'spongy tissue' and higher forms of brain activity were impossible. We were encouraged too, to take some music for him to listen to.
Unwelcome questions
By February/March 1993 it became clear that David was not going to recover and that his body was slowly dying. I was invited into the ward office to discuss this with the neurologist and his team. Did I want him to be resuscitated should he have a heart attack? What about antibiotics? Suppose he had a chest infection? These questions seemed to be coming too soon.
I hadn't got used to the idea that he was going to die. I needed time. It was me they were talking to. Why couldn't it be someone else? We'd had a good marriage with our good and bad times. We had had much laughter, and shed tears together. We had agreed and disagreed at times; loved each other and despaired of each other; had always been good friends. Why then should this happen? Friends spoke to me. I'm not sure what about. All I know is that much prayer at the church and individually was being made on our behalf. We were cared for practically too. I was still working, and visiting the hospital daily and caring for the family's needs, also relaying news to other family members. Some non-Christian friends were angry and unable to cope with their own reaction. It was all so emotionally draining. People at work talked about their own family plans for holidays. We were only able to think about the next day. It was very painful for the children too.
Determination
At home, in the quiet of what had been our bedroom, with the door shut I realised that it was me and my Heavenly Father alone together in the future. If my Christian faith meant anything at all, it had to mean something now. I couldn't let his church down, and most of all, I couldn't let God down. 'No one who puts his hand to the plough and looks back is fit for service in the kingdom of God' (Luke 9.62). I had to trust him that he had this situation under control. If he wanted to take David to be with him, then that had to be right for me too. The sooner I accepted that then there would be peace of mind for me, despite all the bitter tears and sometimes utter despair.
Doctors wanted answers
More of a problem for me in some ways, were the questions that the doctors wanted answered. I had no expertise in this area; I was an office worker! The elders of our church graciously met with me and the family, and talked over the issues. I don't believe this altered the decision I had to come to, but I was grateful for the fact they were not judgmental, and that any decisions I made would be backed up by them.
At this time the case of the Hillsborough victim, Tony Bland, was being discussed in court. (He was not dying, he was in a coma.) I decided for David that I didn't want him to be resuscitated, but that I still wanted him to be given antibiotics. This may seem rather contradictory, but it satisfied me at the time. I firmly believed that any decision I came to would be overruled by God and that his perfect will would be done. It was impossible to tell how long David would live.
Distance myself?
In view of the fact that David would die soon, I was encouraged by the medical staff to start to make a new life and to distance myself from him; thinking of myself more, so that the 'break' would be easier when it came.
I believe they meant well, but for a Christian this seemed impossible. David was still - though deeply unconscious - head of our family and had true dignity as a person. We had a duty to care for him, and we still loved him. His life was not over even though his 'quality of life' seemed to be nil. We still told him about events that happened, but were painfully aware that he was unable to hear or understand. Thankfully, an awkward patient caused trouble in the ward and David was moved to a side room making it so much better for visits.
I was asked if I would consider a brain biopsy being performed, which I decided against. It seemed unfair to put him through that. I had already agreed to have a post-mortem performed when the time came.
The best china
Interminable weeks dragged on. July came. It was impossible to celebrate our 24th wedding anniversary. I took a much-needed break and others visited. The children arranged a day out later in the month and we had a positive time.
On our arrival home we found that the hospital had been trying to contact me, as David had been poorly all day. His feeding tube had been dislodged. Would I now reconsider at this late stage the question of drugs and feeding? When we arrived at the hospital we were treated to tea using the Ward Sister's best china. We were to understand the symbolism of the use of that tea-set. David was obviously not going to rally this time and was very weak. It wasn't recommended that the feeding-tube be reinstated due to this fact. I therefore didn't have to make any decision regarding this. It was clear that antibiotics would now be largely useless. I asked the doctors to use their discretion.
At the end of July I signed a consent form for the post-mortem to be performed. The emotion and the strain of David's last day were too much for us. Apart from two short visits to the hospital we were unable to stay at his bedside. I didn't want to be with him when he finally died - I hope it would have been different if he had been conscious - and in this God was very kind. David passed away just before we arrived at the hospital that first Sunday night in August 1993. He was 47 years old. At his bedside my brother-in-law prayed with my sister and I, giving thanks to God for David's life and thanking him that he had been calling our youngest daughter to faith in Christ, despite all she had endured in the past year.
Post-mortem result
David's eventual death was a relief to me in these circumstances. I, along with others, had been praying that his and our sufferings would not be long. It was difficult to understand why God had delayed. Now, with hindsight, and knowing the diagnosis, it appears that this is the usual length of time. It was to be another 11 months before we had the result of the post-mortem which showed positive for CJD. By then, with the beginnings of the BSE media awareness, we were more-or-less sure that this is what his illness had been. I was also told then that he had contacted CJD from infected graft tissue used during his operation in 1985.
Since then?
What of us in the time since then? I am assured continually of God's love and goodness and care for me. My faith and trust in him has deepened. I've been guided into new avenues of service such as I would never have envisaged doing before. God's presence has been closer to me than I remember when I was married. I am learning to be submissive to God's leading and to wait for him. These are lessons that I should have learned long ago!
It's not easy being a widow and a single person again. The world appears as being peopled by 'twosomes'. However, the world is also full of desperately lonely people who are looking for the special love that comes from another person. Marriage can never answer all the problems of human loneliness - only a close communion with God can do that. One day, we are promised, sorrow and sighing will flee away in his glorious presence.
