A future promised then taken away

Remember that from that diagnosis 15 years ago my wife had refused to talk about having MS or even acknowledge that it may have serious consequences for her. Whatever she experienced, felt or thought about her situation she did not tell me. But I knew she could not really hide the fact there was evidence of the threat. Since that initial attack she had little sensation of touch around her midriff, she may have experienced other tell tale signs but I was not aware of any others that I could reliably attribute to the presence of MS. I knew just as much as she did that it was in there and a serious threat. She did not talk about it with her parents or friends and apparently only briefly acknowledged it with the family doctor. Towards the end of my time at British Rail we had the chance to live and work abroad for a period and be fully supported by the organization but she refused to consider it in case she had an attack. This was the only time during those quiet years when she seem motivated to bring the subject up.

So when my wife said she wanted to start a family it suddenly had to became an unavoidable item of concern. This was in the mid 80's and one of the first questions we needed to ask was, will there be any issues/complications/dangers from her having a dormant form of MS. When we went to the family doctor about any risks to her, the pregnancy, the baby, it was a sea change in her behaviour. The doctor assured her that there were no known risks on any of those topics and so, when she became pregnant, the pregnancy went well as did the birth, and a lovely healthy baby was born in early 1986.

As one small but ultimately important aside there was an incident during her pregnancy that speaks loudly of the randomness of fate and health/life insurance. She had tripped and fallen outside on the pavement near her office, one lunchtime while still working. She worked for a quasi government agency and as such should have been provided with extensive health and life insurance by her employer. But, because of the diagnosis of MS such insurance was refused her. When she fell she was helped to her feet by a man who it turned out not only worked for the same organization but also was responsible for staff insurance provision. So he told her if there was anything that needed to be done, in terms of her fall and the pregnancy, the company health insurance would cover it. When she told him the insurance had been refused her he was shocked. She explained the reasons, he was again shocked and said the decision was wrong, promised to sort it out, did, and she was subsequently granted back dated cover. It was to turn out to be a very financially important decision for her.

Just over two years later my wife had the first of three MS active attacks. The first and second, some six months later, lasted a day or two and left her unable to use her legs for some weeks. After that it took months as she gradually got back her stamina and standing/walking skills. The second and third attacks happened just as she was feeling she would be able to contemplate going back to work. You can see from that how violent the effect of an MS attack was for her by the loss of ability over such a short time and how long it took to recover those abilities, especially the stamina needed to be active for a normal working day. But the third attack just went on and on and within a matter of days I contacted the family doctor who contacted the local neurologist who got her hospitalised. Over the following weeks her condition continued to decline to the point where she was unable to do anything for herself and appeared to be in a coma like state. At one point she was not expected to live more than a few more hours. Then, just as unexpectedly as it started, the attack stopped and the agonisingly slow process of her body trying to recover started to show itself. 

Some five months later it was possible to think that she would recover enough to be discharged, still terribly disabled, but stable enough to be cared for at home. And so she went to a rehabilitation unit to try and maximise her skills. At this stage she could barely speak, eat, let alone wash, dress or do much at all for herself, so the rehab stay was meant to establish and build those skills. By the time she came home her speech was understandable although weak and laboured at times, she could feed herself easy foods with difficulty, but could not care for herself to any degree in terms of washing, dressing, toileting, and was effectively paralysed from the waist down, with limited control/strength in her arms and unable to sit without support to her upper body, so was confined to a wheelchair. She would clearly need 24 hour care for the rest of her life. We did hope that being at home would encourage further slow improvements in skills such as her speech and feeding herself, as well as give her a better living environment, so I started the task of organising that. For me it was a no-brainer to want her back home, especially in respect to my wife's welfare, our daughter and the relationship between them. Sadly even that limited expectation was to be thwarted as she had some sort of fit while in the rehab unit and from that moment on improvements ceased and slow and inexorable decline set in. Still I was determined to get her home for as long as it was feasible. This was where the concept of care in the community became a very 'in your face' experience.