I cried the entire trip on the bus this morning to the university. It gives me too much time to brood if I'm not reading on a bus trip. After going to a meeting in the Queerspace at NUSA today, I went to the nursing home to get the details of Jenny's death. I needed some sort of closure.
I spoke to some of the staff there. After I left she'd slept for a while, but was a wake for most of the night, even chatting to some of the cleaning staff. She was still on oxygen and started to deteriorate just before 8am. She died at 8:20am. They phoned her mother but due to traffic on the way she arrived a few minute's after Jenny's death. Apparently she was very peaceful just before she died.Now of course they may say that anyway, but I have to take it at face value. I mentioned the conversation I'd had with Jenny before leaving on Thursday, how she said that she wasn't ready yet and so on, and the staff person I talked to suggested that maybe she waited until seeing her mum and I before she let go. Sigh. I know that was probably meant to comfort me, but when Pegasus died, he did so when I went across the road to get help. What is this, do those I love wait until I'm out of sight before they die?!
I couldn't go there without going into the room one last time. After Jenny's body had gone to the undertaker's the family (most of whom Jenny hadn't seen while she was there) cleaned out the room. When I went in there was almost no trace that she'd ever been there, just like the dream I had a few days ago. The only link was a blue ribbon (which I took) that I'd seen her wear once, and post-it note still stuck to the wall mounted TV that read...
...(which I also took). That last one was put there when the inbuilt player broke and a DVD player was attached. Small things, tiny fragments of a life now over. I sat there for maybe ten minutes (I also took a few photos) because oddly enough, not only did I need to say goodbye to Jenn, but I needed to say goodbye to the room as well.For almost 700 days Jenny was mostly in this room. Before then she'd been in her flat in Wallsend with her pets and had some sort of independence and privacy. But there was none of that in here. She could have got in a wheelchair and been pushed about (in fact the first time I went in to visit she was)but being the youngest person there gave her no incentive to do so. For a long time she resented the difference. I still visited her mostly once a week, but it wasn't quite the same, and we both knew that. So I needed closure on the room.
After the nursing home I went to Wallsend and while I was there double checked the details of the cremation on Wednesday. I got them correct, and it will be a closed casket ceremony. And I phoned the G.P. that Jenny and I had in common and let him know of her death. He wasn't surprised, as he'd been treating her as best he could before she went to the home. But either way I figured he ought to know. I was going to phone Homecare as well and let them know, but decided not to. She hadn't been a client of theirs for a while now, and with the staff turnover I knew they had, it would have been pointless.
I see my counsellor tomorrow. Think I will need to.
Just had a phone call from Jenny's mother (who's first name, I finally learned, is Leone). Seems she consulted with the others attending the funeral and they don't want Bobby there and "didn't think it was a good idea". That's a pity, but as a friend of the deceased I need to bow to the wishes of family. This may sound odd, but I may take a photo of Bobby instead,I also need to place a memoriam in a local newspaper as well. Haven't done that yet and will get on to it tomorrow. I also need to go to the beauticians before I go to the funeral. Coincidentally I have an appointment with my counsellor the day before the funeral. Guess I'll have something to talk about.
After talking to Jenny's mother on the phone earlier, I thought of this song - A Daisy a Day. It was one of Jenny's favourites and I helped track down a copy for her. I was especially thinking of Ron, her husband.
A DAISY A DAY
He remembers the first time he met her
He remembers the first thing she said
He remembers the first time he held her
And the night that she came to his bed
He remembers her sweet way of saying,
"Honey, has something gone wrong?"
He remembers the fun and the teasing
And the reason he wrote her this song:
"I'll give you a daisy a day, dear
I'll give you a daisy a day
I'll love you until the rivers run still
And the four winds we know blow away"
They would walk down the street in the evening
And for years I would see them go by
And their love that was more than the clothes that they wore
Could be seen in the gleam in their eyes
As a kid, they would take me for candy
And I'd love to go tagging along
We'd hold hands while we walked to the corner
And the old man would sing her his song
Now he walks down the street in the evening
And he stops by the old candy store
And I somehow believe he's believing
He's holding her hand like before
For he feels all her love walking with him
And he smiles at the things she might say
Then the old man walks up to the hilltop
And he gives her a daisy a day
Last night, before I went to bed I asked for a dream where I could talk to Jenny. I didn't exactly get that. I've been watching the miniseries Tin Man, and the waking dream I had seemed to be based on that.
I was in a place where one could imagine and create a link between two places, like a doorway. I started imagining these and they seemed to save lots of time and travel. Finally I imagined one that would take me to Jenny, but every time I did it would take me to an empty hospital room.
She's gone, and I can talk with her no more. I've been up since 6am and apart from walking the dogs and feeding the pets I haven't done much else. Time (at 10:30) to get myself some breakfast and watch some TV like Torchwood.
The right to know
Friends and associates are so ephemeral on the net. After an experience in Second Life in 2008, I've sometimes wondered...
How would you know on Facebook, Live Journal or a mailing list/forum if someone died, if all that happened was that they stopped posting?
...and this for me highlights the difference between virtual and actual friendships. Not of course, that one always knows what happens in the real world either. I was very hurt in 1995 when someone I knew for over 10 years in the public service and considered a friend Doug got married. Not only was I not invited (which I put down to the fact that I'd only just started my transition), I was only told about it well after the event, by an ex of mine who had been invited and assumed I knew! When I came back briefly after a geographical in Sydney, I learned that Doug and his wife were living a few blocks away from my parent's house. I dropped in and his wife's first words were "Hey you look like a regular woman!" Great, and I never visited or contacted either of them again.
Yesterday I phoned Robyn, who had accompanied me to Phuket in 2000 and whom (I learned in retrospect) had been an ex of Jenny's (and now lived a fair distance away). I felt that it was only right that she knew Jenny had died, and had a feeling no one else would tell her.
Long periods of Decline
Last night I phoned Mum and talked about jenny's death and it was a great help.
For six years my mother visited my father William in a nursing home once or more a week (with much appreciated help from Thelma Gunnell), since his double stroke on his birthday in 2000. That was the same year I went to Phuket, and it cast a pall over that event when i worried about my father. Selfishly I was glad that I no longer lived in Perth because I doubted that I could have coped with seeing the constant decline of Bill from the person I knew to the frail physical shell he became.
But that's what was in store for jenny.
There was no cure, no way of reversing the process of steady decline that the Multiple sclerosis inflicted on her. She was well past the stage were medical intervention could do more than just ease the pain. When I first saw her, she was walking. When I first met her in person, she used a walking a frame, and then it became a wheelchair at home, and a motorised chair enabled her to go shopping locally (and in which, to my amazement, she was able to go all the way to Wallsend plaza to get smokes!) There came a point when she could no longer use a car and she sold it. When she could no longer transfer to and fro the chair she could no longer keep her flat and any degree of independence which, with the help of Homecare, she still had.
My father never had that - at one point he was getting out of bed ready for his birthday, and the next just a few degrees above being a vegetable - but he never knew it was coming. Jenny did, and on more than one occasion talked about suicide before it got to the stage where she could do nothing for herself and couldn't communicate either. She was a trained nurse, and knew what was coming. Yesterday she could talk, but she couldn't even use her remaining hand to do anything. So when my mother told me that "it was a mercy that Jenny went when she did", I guess she knows what she''s talking about.
Lots of crying to do, either way
See, sometimes when I walk the dogs, I think about when I walked Pegasus on the same or a nearbye route. And sometimes when I travel on bus or train I think of some of the places where I wanted to walk Pegasus, like the hill between Boolaroo and Lakelands (what is it called?), or in the Mardi Gas parade. And thinkingv those things often acts as a trigger for feelings of loss and grief.
And I know that will be the case with Jenny as well. Saw an advert on TV for the next House season. Was going to record and watch that with her. Sigh.
A few years later (about 2003 or 2004) it transpired that we both had the same G.P. and discretely he suggested that if I wanted, I could phone this other person for a chat, who was having some issues to do with isolation, and was also a "post op". I phoned and we chatted, and this was Jenny. We chatted at least once or twice a week for some time, and it was good to talk with her. Then, she had a problem with her computer and I offered to go over and fix it. I did.
She had the early stages of MS, used a walking frame, and lived with her husband Ron and their dog Bobby in a flat in Wallsend. I popped around once or twice, and then heard that Ron had gone into a care facility with Alzheimer's. One day, I felt so lonely that I just grabbed a video and popped over to Jenny's for a visit and suggested we watch a video together, which we did. That was the start of my regular visits to Jenny's. Usually I'd take a video or DVD to watch and we'd chat all the way through it. Jenny loved her video collection. Sometimes I'd take milk and bread for her (both fairly safe to buy) and twice (with great effort), I drove her to someone who supplied her with the ingredients for her "herbal cigarettes". This was the thing that eased her suffering the most - smoking dope (and in fact this morning i saw news item on TV about a marijuana-based mouth spray).
But it was more than just going over to Jenny's to watch videos (though Jenny loved the TV series House M.D. and I really enjoyed watching this with her). I could talk to her openly about a lot of things, and it helped put them in perspective. And it wasn't because we were both trans either - I liked her for who she was. When all my duckling dired and I phoned her about it, she already knew. Often when I bought milk and bread it was after she'd particularly needed them. I went there after I had a traffic accident to fall apart emotionally. Every time I'd visit I'd pay Bobby attention and give him pats. Once I took Pegasus there (a mistake) and he bit Bobby on the nose! I took photos of her and her new kitten Rocky, who disappeared and was later discovered to have been "given away" by her next door neighbours to their neice. I was pleased when she got Ebony, though later, when she was ill with broncitis and I looked after both Ebony and Bobby, I understood why she couldn't have her back. We had our differences and more than once went for long periods without talking or seeing each other.
When I created my "Trans Tarot Deck" I used Jenny as the model for the BLANCE card. Even with her problems, she always impressed me as someone who was able to manage what she had to the best avail.
Back in 2008 and when she started to decline, I visited her in different hospitals and when she wanted an "independent transfer test" I was with her for over four hours to make sure she was ok. Until I buried Pegasus, it was the most stressful thing I'd done. She failed the test, and we watched Dr Strangelove instead, until her mother or the ambulance came to get her. I took Bobby on shortly afterwards, and she went into a nursing home permanently. It was a difficult time for her. Her mother and stepfather had to clear the flat out and they sold a number of her items to pay off debts. She was very bitter over that, and resented being confined to bed. Over the course of the last 20 months she declined physically as her condition progressed.
One thing that I was glad to do was to be able to take Bobby in to see her. At first I had no success at this because I assumed I needed someone with a car to drive us in. Finally, I bought a pet carrier and took him in on the bus.
The weather in the last month or so prevented me from doing this again. I was planning to take Bobby in on Monday, but that's too late now.
My last conversation with Jenny was about her situation and the possibility of dying. She still resented the fact that she wasn't "home" (her last flat) and thought that it was unfair. Life is unfair. She told me yesterday that she wasn't ready to go, and I hope, that in the time between then and now she was able to make peace with herself and let go. Either way, I WILL MISS HER.
Her mother just phoned. She died about 8am this morning, about 3 minutes before her mother arrived. Her sister is with her now and the the undertaker will take her body away. She will be cremated, and I've asked to be kept in the loop about this, and attend any ceremony.
After my previous post, what can I say? I loved her as a friend, and supported her as best I could. DAMN DAMN Damn THIS HAS BEEN A SHITTY WEEK!
The thing is - is this the effect of a flu/virus/the weather, or is it her MS getting worse and affecting her respitory system? I don't know. Her thought the second, but last year I had something just as bad as this at this time of year. Then again, I'm (more or less) in better condition than Jenny.
It was worrying.
Her mother was there but left before I did. I talked to jenny about the obvious worries. She says she's not ready to die yet. I know few people who are. I was going to visit her again today, but I think it would be better if I visited on Monday because then I can take Bobby.
It's been a really long day today. Some days I just can't cope and hack stuff, but this wasn't one of those.
I left early to catch a bus that didn't turn up because it only runs on "school days" (I'm back, why aren't the high school kids?). saw my counsellor and talked non stop about the things I'd been doing for the last month - I hadn't realised that I'd been so busy! Caught connecting buses (one bus following the other to a stop where I ran to the bus ahead of it) and saw Jenny in hospital - they're moving her back to the nursing home tomorrow. Went to Broadmeadow where I got a pricing on a return to to Lismore via Countrylink. Went into the city where I bought a new power supply, sound card and DVD burner (only to find tout from Kevin when I got home that the power supply and sound cards were no good, so I'll return them tomorrow). I caught the train to university and went to my post-grad seminar from a student who's basing her artwork on photos of "Hysterical Women" taken in the 19th century. Caught the bus to Jesmond and got a drink; then the bus to Wallsend where I bought Pizza for dinner, ate it on the seat outside the library and then went inside; where I found a CD that they hadn't marked off my list but which I'd returned, then borrowed some cool stuff; and finally caught the bus home.
A long and busy day, but I'm happy.
I saw Jenny again yesterday at the hospital.
She has improved. If before she was only 30% of her old self, yesterday she was 80-90%. Jenny was still confused as to where she was, but more coherent all the same. She seemed healthier too. Ron, her husband (who has Alzheimer's and is in a nursing home himself) was in for a visit and Jenny seemed in better spirits. Her mother's bring in her portable DVD player so there should be a bit more stimulation for her.
Also, I saw the advert that was supposed to have Bobby in - it's this one:
It does look like Bobby, but it isn't.
This was a really tough thing to do. After being with her a short while it was obvious that she's had a stroke, not just seizures.She reminded me of my father, who had a double stroke on his birthday and barely talk afterwards. Jenny was talking but it was slow and slurred. Also it clear that she was lucid only some of the time. At one point she asked to go back to her bedroom, which hasn't had for over a year; on another occasion she asked about the margarine that'd been left on "the veranda" (we were in her room at the Intensive care Unit on the top floor). She also asked what Bobby was doing, as if he was in the room with her, and if I'd seen the latest Indiana Jones film (I'd watched this with her last week).
I really don't know what will happen at this point. My mother had a stroke last month and after a few days she mostly recovered. But mum didn't have MS, and I don't know just how much (if any) Jenny will regain. This has happened more or less at the point that Jenn was settled in at the nursing home. But will she even go back? I don't know. When I spoke to her mother yesterday she told me that Jenny's estranged family had been in to see her while she was unconscious. They expect the worse, and id this a couple of years ago when she had pneumonia.
So I have no idea what's going to happen - but it's heart breaking all the same.
I had a phone call from Jenny's mum earlier. It seems that jenny was having seizures all last night and was taken from the nursing home to a nearby hospital. Most of her family went in to visit last night, so it's obvious they think she's dying. I'm not so sure. This is all part of a decline brought on by MS.
Should be visiting her sometime tomorrow. I'm glad I didn't go out today. If I had I might have visited her in the nursing home and discovered her not there and probably no explanation. Considering the hospital she's in, I could jest walk up the road (300 metres away) to the Hospital, but that's not the point. Have been feeling very flaky today and that's the last thing that's needed for a visit.