Thursday 6/12/07

What an exhausting week this has been! I am sitting here at the pc, looking like the back end of a bus, complete with half a beard, a viral infection and a laboured whisper for a voice. Its been almost exactly a week since this crazy nightmare began to unfold. What a void you have left joe, and thanks for dumping me in it!! Now, mother will be on my case non stop, with you offering no welcome distraction.

I knew something was wrong as soon as we pulled up at the kitchen window, So at worst, I thought you had finally succumbed to the effects of the flu, which had wrecked so much personal havoc over the last couple of days and nights, and that you were now in naas hospital for observation, and as a way of giving mother, who had been up with you for the past 72 hours straight, some much needed r&r.

It seemed like I was the last one to know, or at least the last to put 2 and 2 together. Kathryn says she knew the prognosis was really bad, as she heard mother's deadly calm voice on the phone. Not knowing all the details, and not being known for my emotional range (at least not in family circles), I found myself becoming hysterical, especially when the neighbours, relations and family friends started pouring in. Yes, the theatrical irish funeral production was underway.

But the genuine goodness, whch comes out of people at sad times like this, is just staggering. People coming in to take care of all the domestic chores, including answering the phone, which threatened to go into meltdown. It would have been so much easier, if there would have been some advance notice, if you had been in naas for a longer time period, and at least we could have tied up any loose ends, and said our nice farewells. But this was just too abrupt, too hurtful!

I didn't know that you were in the sitting room on the thursday morning, as I was getting ready for work with mother. She was telling me how she had had another sleepless night with you, going from your bed to her bed, to toilet, to sitting in your chair beside the sitting room fire, all in search of some elusive rest. I remember saying that even though the very suggestion of it, would cause you to erupt, that next year, like it or lump it, you were getting the flu jab. The common flu totally knocks us out. The flu strain is certainly becoming more potent, and resistant to the drugs currently on the shelves. This was the same dose, which had landed me in naas 2 1/2 years ago, as my ferocious and constant coughing fit demanded. I had to go there kicking and screaming, no one likes those places. Apparently you went in at 2, and were dead by 5. I like to think that you took in your surroundings, and decided that this was not the place that you wanted to spend your time, artificially being kept alive.

Even though the doctors in naas were great, they could not tell if it was pneumonia or a malformed lung, which was causing undue pressure on the heart. They said they could have saved you, but it would have required a tracheotomy. Mammy wisely said no, on top of everything else, you didn't need this extra disability. What a country we live in, that these forced protracted endings, are viewed as the only and holiest option!

It would have been awful to be visiting you everyday in a hospital ward, respite centre or at best your own bed. There is so much to be said for a quick death. The country is full of nursing homes up and down the island, full to overflowing with the living dead, and my heart goes out to them. I wonder though, would they really have wanted this expensively degrading way to leave, being gawked at daily, living in your own filth and with tomorrow bringing no relief. But living wills have no place in irish law, and I hope this craziness changes soon.

Its exhausting to be crying all day. My body seemed to shut down. Thankfully mary, the GP from dunlavin, who has become a firm family friend, since her own two daughters were diagnosed with FA, was on hand. In every capacity she was excellent, even sitting with mother on the saturday evening, as she couldn't bring herself to view her youngest son' body in the morgue, all the while listening to inane chatter about how you never looked so good. From saturday, mother and I, had an unwelcome return visit from the viral infection, which we thought we had gotten rid of six weeks before. I was doggedly determained to go, but it took a family intervention to stop me. The saturday evening was a horribly cold and wet winter's night with arctic winds, and so for me, it was a choice between going to the removal service, and risk getting pneumonia myself, or saving my energy for the funeral the next morning. I chose the latter.

You probably wet yourself laughing at the state of me on sunday. Hat, blanket around my knees like a geriatric, big sheepskin coat and your warm boots. I had to be strapped into the chair, lest I fall out during a coughing fit. But I was surprisingly quiet during the service. It was almost like you were telling me to "shut the fuck up,this is MY funeral". I had given Dorley the names of some hymns I wanted sung. Here I am lord, Be not afraid and Make me a channel of your peace, which made me cry not only because its so poignant, but because I had chosen it for dad's funeral nine years ago too.

The first part of the mass was nice, with tokens from your life being brought up as offertory gifts, like a dvd ( from your colossal collection) and ipod. I had to stifle a laugh when the priest referred to you as a "beloved parishioner". You could count on one hand, the number of times you had been in church in recent years, especially since dad died. As the mass continued, it was all about jesus, and his little 3 hour stint. The one thing which really annoyed me was one of the prayers, which asked god to forgive him his sins. He was a 25 year old who spent most of his life in bedroom, battling his own body. He didn't even have the opportunity to sin enough to warrant guilt, you thoughtless bastards! Its another reason why I think I'd prefer a secular humanist service at my cremation.

Even when all this began, on the thursday evening, I had said that if anyone says to me, that this is "gods will", or some other condescending platitude, I was liable to knock their teeth in. Such words are simply too hurtful, to be of any consolation at times like this. To their credit, neither religous relatives, or the local priest said this. But it is so obvious that people just do not know what to say, and instead of saying nothing, they feel obligated to say something, and it usually backfires terribly. How are you meant to respond to such stupid questions as how are you? , and how are you feeling?

We did'nt allow your brain to be given over for FA research. For somebody who hated needles and all that good stuff, we knew you would'nt have wanted even your corpse to be interfered with. I have no problem personally, with donating my brain for research, but its an individual choice, and I'm sure we made the right choice for you. The weather is terrible, and this christmas is going to be very difficult to get through, but get through it we must. You had all your christmas presents bought, and you said to Kathryn, that this was going to be the last lonely christmas, and that next christmas we would have her new baby in the house. I guess we all better dig deep, to find the willpower and drive to keep going over the next weeks and months. We would'nt have you back in a worse physical state, for all the money in the world. I gashed my head getting out of bed on saturday, and I just thought to myself, how lucky it is that you dont have to deal with any of this crap anymore.

Well Joe, sleep well. How I applaud you, miss you and envy you!