Mike - in memorium

Mike with Ryan, Lucy and Andy, and me

To talk of Mike is hard - hard because he was such a unique character, almost beyond desciption, and hard because he has died at so young an age, just 51, leaving an immense air of grief and loss. His death was harsh too, both in its catastrophic suddenness, and yet in a quiet inevitability, for he had much chronic illness but refused to follow advice to moderate his lifestyle; his motto always was to live for the day, and enjoy life to its fullest degree. 

Mike was eighteen months old when he came to us, first for fostering, then through adoption, having suffered one of the worst starts to life of any child I knew. Dan tells me his first proper memory was of the (then three) children being taken from the court room during the hearing and left in a side office with a car each to play, while the hearing continued. For it was not straightforward, but argumentative with his natural father, and social services.

With us, he came to a somewhat chaotic family, but in some ways chaos suited him, for that was how he seemed to cope with life, living through the pain of rejection and physical hurt with Freudian resiliance, yet always seeming to search for someone to love him. In his husband, Ryan, he found that love and he found a strength to build a new life. Though nearly twenty years his junior, Ryan brought the love and maturity Mike needed, although his restless spirity still could not settle easily. Together, they moved house several times, often in quick succession, but always together they built a new home each time, and always with such professional ability that the homes, furniture and interiors could have graced the pages of a high fashion magazine. 

Here, I have expressed only his outward restlessness. His personality was beyond compare and impossible to capture in these few weak lines, although the wonderful tributes from his brothers and Lucy have said so much I find it difficult to equal them. As his nephew Luke wrote to me, "...all I can think about are the many hilarious stories of his I've heard over the years. At the endof the day, life is all about the memories we have and share. All we can do over the next few weeks is mourn, share those laughter-inducing memories, and for ever keep them alive." Thank you Luke. I think you say what we all feel. We miss you, Mike.

A tale of lumps and bumps

Annie and I have turned into each others carers and this is a tale of gloom and ill health. If, dear reader, you do not care to journey down such corridors, please logout now. I gloss over the time just before Christmas when Annie had her major heart attack and was confined for several days in Papworth; likewise her second recent admission when she relapsed in Kelly's hairdresser salon and was admitted by blue light ambulance to WSH with acute and severe heart failure. On both occasions, I was too distressed to write of it, and even to talk of it now brings me to the brink of tears, for the anguish was extreme. No, I write to keep people informed of my own illness, my constant and present companion, metastatic melanoma.

In addition to the breathlessness, weakness and cough, I have now acquired a series of 'lumps'. The one above the shoulder is about marble-sized, but on the arms I have one in each biceps the size of eggs: one like a hard-boiled shelled egg, the other more like a flat rubbery fried egg. They are larger than my flabby muscles, and make me look like Popeye, but they beat me up more like his rival, Bluto. I mentioned the first to the dermatology consultant in November, but she shrugged it off. I then mentioned them to the Respiratory nurse in January, but these people are too specialised to take interest in anything outside their immediate remit. I phoned the MacMillan and oncology nurses at Addenbrooke's who had especially given me their cards, but both said just to see my doctor. So, after some prevarication, I have listed to Annie who also said to make an appointment with Doctor Bone. I know there will be no more surgery or radiotherapy offered (A visit to Dr Doom), so I have doubts that he can do much either. But I now have a new one on my back near the site where a previous one was removed (A growing tumour) and  have agreed to see him to ask if he can offer new suggestions. For those still reading this, the tale is to be continued. 

In the meantime, Annie and I continue to manage the house between us with its cleaning, its maintenance, and a thousand unthought of jobs, shopping, or tax returns, as they crop up. I even got to the tip last week with a microwave that has sat in the back of the car for over a month with Byron, to his intense annoyance. But I then took him for a walk in the park, which cheered him. I judge the length of a walk by the number of times I have to sit down on it; this one was a two-bench walk, about my maximum now.

On growing deaf

Annie normally is the most wonderful and supportive of women, but I have noticed occasionally she seems to provoke me by deliberately muttering a simple question such as, ‘what shall we watch tonight?’ to the point where I am forced to ask her to repeat herself. Sometimes, by interpolating what she might be asking, I take a wild stab at an answer, but this always seems to produce an incredulous look rather than a recognising nod, for my guess is invariably wide of what was really said. This does not go down well and is guaranteed to annoy, especially when Annie accused me of getting deaf. 

I used to argue against this, refusing to accept yet another infirmity on the road to decrepitude, while certain that she just needed to articulate more clearly; although I concede that, for some time, to follow a television story is helped by having subtitles switched on. These subtitles are a marvellous boon, for one can take them in at-a-glance while still watching the action and catching the actor’s articulation; without them, it is harder to follow a plot line. The subtitles are remarkably accurate and taken in many cases directly from the script, which adds interest for we viewers to spot where the actors ad lib, often improving the original. 

This contrasts starkly with subtitles over news programmes where there is no script, so some text-recognition algorithm, or possibly a poorly paid stenographer, is vainly trying to keep up with a fast-breaking story. Indeed, subtitling is so bad it lags several seconds behind the words and is often a garbled mess of weird spellings, suddenly cut off when the stenographer (or software) loses track of where they are. This lack of sync gives the newsreaders a more vital role, for we hard-of-hearers must rely on their voice alone to make sense of the world outside; but therein is the problem. For those who suffer high-pitch hearing loss, female newscasters become, if not inaudible, then certainly unintelligible. Male newsreaders such as Clive Myre and Tom Bradby shine as beacons of clarity, their words distinct as they expound the woes of the world. But females operate at a disadvantage, for we sufferers can’t hear them: their words become blurred, indistinct and quite divorced from any clue from the subtitles. 

Of course, many news programmes now include a little person in the corner busy signing which is doubtless of great help to the profoundly deaf who presumably prefer it to subtitles, but this is of no benefit to fogies like me who are never going to learn signing. My mother showed another way to hear. At fourteen, she left school to work in the cotton mills in Burnley. Visiting my grandparents in about 1950, I remember peeking in the back door of a Burnley mill out of curiosity, for in those days a child could wander alone and unrestrained. The noise was like nothing I’d heard before, a wall of sound so loud I could never dare penetrate it, so I understood why she learnt to lip read; the girls held full conversations without hearing a word. This was a faculty mum kept all her life: she could hear whispered conversations, or see people talking in a restaurant, and knew what they said, something we children found scarily impressive.

So many detective series now have female protagonists interviewing female suspects that, without written cues, I would miss half the action. And it was subtitles that brought my deafness to a head, for besides dialogue they include background sounds such as ‘dramatic music’ to build up the viewer’s tension, and simple sound effects such as ‘telephone rings’. When one announced, ‘horn blaring’, I asked Annie if she could hear a car horn? Of course she could, so I determined the time had come for an aid, making an appointment next day. Sure enough, the testing lady confirmed I have high-frequency hearing loss; the drooping curves on her screen clearly fell below the threshold for several highlighted conversational sounds: f, k, p, s, and t would all be inaudible to me when spoken by children’s or female voices. So that is why Annie was mumbling – all those sounds were being struck out from my ears like so much unwanted grass before the strimmer. I looked forward to regaining a lost sense, for in childhood I could hear the bats chirp. Perhaps, with my new aids, I would again hear the birds sing and enjoy the news from more than two newsreaders.

Alas, hearing aids are not all they're promotion suggests. I was duly fitted at SpecSavers, paid my £1,000, and tried them for three months in different settings. In fairness, I believe I could catch what dear Annie was saying more clearly, but for television I still needed subtitle. The downside was, when eating the sound of my jaws working and teeth crunching was so loud and distracting, I could hear no voices above it. Likewise driving, with the sound of the engine, or outside with the wind noise; so bad indeed that I had to take them out. So yesterday, I returned them just within SpecSaver's return policy of 100 days. I sincerely hope Annie can be tolerant for a little while longer.