Personal Update

I’ve not posted here in a long time and while I have some ideas for things to write and articles on other sites to link to, I thought it would be best to address my absence first.

At some point in the future I’ll go into things in much greater detail than I go into here, when I’m able to find the words more easily. The shortest version for people is that in January, my mother fell ill. She passed away in March and I’ve had to do a lot since then. I still have a lot to do.

The beginning of this for me is in January this year. I had been meaning to call my mum when she phoned and asked that I visit. As ever, I assumed that she had something on her phone or laptop to fix or more of an explanation about social media. She was a sculptor and had discovered that an online presence was a real help in getting commissions or exhibitions. I went round to her place and found she wasn’t there. Distressingly there was a half-finished cup of tea, her phone, her tablet and therefore any method of getting in touch. I asked the dog; Rothko, but he had no useful information for me. I wandered through the house to look for any clues and found nothing. Like me, she doesn’t bother with a password on her phone so I finally cracked and opened it up. There were a couple of texts about a hospital visit. I remained in the house, uncertain about what to do, until I had a call apparently from my mum’s friend Erika. My mum was on the other end of the line and said that she’d left the house in a rush as her lift had arrived early. She was at the hospital in Haywards Heath and could I stick around for a chat when she got home.

When Sue got home, she explained that she had been diagnosed with a neuroendocrine tumour. It was something which wasn’t great but they were going to do tests. They didn’t know where it started or what would be done in the immediate future. I looked through the pages of notes Erika had taken and Googled the specifics to clarify everything. She was already on quite a lot of painkillers for a fall she’d had in a bus accident in September which never seemed to heal.

The next week I got a call from Sue just as I was getting up. She’d had trouble with the television and had called me several times before I’d woken up. She sounded really out of it, so I went during my lunch break and saw that the remote had been switched away from television mode. My uncle Peter was there too and concerned about her. I’d not seen him for at least a decade and he mentioned to me about how she’d had a fall.

The next day I was off work ill with a cold and had a phone call from Erika. She’d driven Sue over to the hospital for tests and it looked like she’d be around for longer, so I needed to see to Rothko. When Sue returned, she was in no state to be home alone so I remained there, sleeping in the lounge with Rothko’s surprisingly loud snoring.

On her birthday, Sue was taken back to hospital and it was clear that they didn’t know how long she would be staying there. I remained at the house with Rothko, trying to get an answer from the doctors. My brother came down the next day and put all of his training a younger brother and former call centre worker into annoying the doctors into giving us details about where to go for more information. We went to the hospital and found out that the doctors were still looking for the source of the cancer, they were trying to manage her pain better. Sue was in a slightly more lucid state than she’d been at the house and gave us a list of things to fetch her.

The next few weeks were ever-changing with attempts to find out what was going on, what our situation would be. My brother Alfred would visit in time for us to get a new outlook on what would be happening. We walked to and from the hospital, batting back and forth uncertainty on the way there and ideas about how to adapt on the way back. The touchstone was Christmas and what that would be like. As there was information about how Sue’s cancer had hit her hip, pancreas and abdomen, there was talk of the therapies available and we thought that maybe this could still be resolved. Maybe Christmas would be a little more somber, a little more thankful for making it through tragedies. Alfred helped me adapt to life in the house with Rothko and trying to make sure I was living right rather than just being a presence drifting through someone else’s home. We would get home from the hospital, eat bad take-out, drink a bottle of whiskey between us and play Mario Kart 8 while talking through everything. Then the next week things would get worse and we would do the same. It was how we’d process, a lot of the time before, during and after everything that’s happened.

Sue moved wards from gen pop to Acute Oncology. It was a lot more like a bunker, but at the same time there was a day room where we had a lot of more serious talks as it became clearer that Sue was going to last a while, but probably not going to make it out of her predicament. Sue had tried to make sure that people outside of our immediate family (myself, my brother, uncle Peter and the dog) weren’t aware unless she’d specifically made them so, but after a talk, we explained that we couldn’t keep hiding the truth from a lot of people, she couldn’t just vanish from the many lives she interacted with regularly. I brought her laptop up to the hospital and transcribed an email to send out to her friends, her students, people from the Buddhist Centre and swimming classes, basically updating them about her situation. It took a few days for me to work up the guts to get that sent out.

My brother and I had no context for any of this, so when it became clear that Sue would need to be moved to a hospice, we didn’t know what to do. Were they paid for? How would we afford that? Alfred ended up ringing the Martlets who explained everything clearly and that Sue was already on the list to go up there.

A couple of days after Valentine’s Day, Sue was moved into the Martlets. They were great and considerate of things like her rather specific diet. She was in a room with one or two others, but they tended to move in or out fairly quickly. From here everything slowed down to a grim kind of routine. My dad and stepmother visited, to make sure that we were doing okay with all of this. My brother who had been tormented by trains and having to do preparation for his lessons during all of this was able to spare coming down all the time. I left work early on Wednesdays to visit Sue as well as going up there one or both days each weekend. Sue used her tablet to show all of the nurses photos of her woodcarvings, she made friends with the Christian and Buddhist ministers, had a ton of different therapies, painted and gardened.

During all of this, there hadn’t been any real improvement in Sue’s state. She was wheelchair-bound from the start and being a stubborn, independent person loved to try and prove that she was able to get up and move by herself. On Mother’s Day, it took a couple of attempts for her to get from a chair to her walking frame (war frame, as we’d all called it, to make it sound better), then to the wheelchair. On her way back to the bed, she fell and I managed to catch and help her gently to the ground before summoning nurses to get her back up.

Life had slowed down to a kind of gentle horror, almost. We knew what was going to happen, but we were keeping everything going in as much of a routine as possible. On one of the days where Southern Rail were deciding to stop running trains and venture into buses as their primary mode of transport, Alfred came down to see Sue as she’d been moved to a single room. I panic-walked the dog while fielding calls from my brother trying to get down to Brighton and my dad trying to catch up on the rapid changes and deterioration my mum had faced. I got to Brighton Station in time to meet my brother and my then-flatmate Lee drove through congested streets to get to us. It was a nightmarish day of travel, all in all. We reached the hospice and several others had turned up. We exchanged pleasantries and saw Sue. At this point she was hardly there, under constant supervision by nurses, friends and of course Alfred and I. We were asked if we wanted to stay overnight, but walked back to the house to look after Rothko and have some space to decompress.

On Monday Alfred went up to London for clothes, having only originally packed for an afternoon visit on the Saturday. We went to and from the hospice on Monday. When we were there we talked to Sue, only getting the occasional reaction. Most of the time a laugh as we chatted and bickered like we always did. On the Monday night we got home and crashed for a couple of hours before Sue’s friend Susie called round. The nurses had contacted her, unable to wake us by calling the house phone. She drove us to the hospice to sit with Sue. We remained there through the night and to the sunrise. At eight, Sue’s status was unchanged and we needed to make sure Rothko was okay. We left and asked the nurses to contact us if there was any change. We got home, walked the dog and tried to rest a little. It wasn’t really possible given everything that was going on and sure enough, we got back on a bus and returned to the hospice. After a few hours with Sue, we were sent out while nurses changed her bedding. We paced the streets, exhausted, then returned to Sue. We were still uncertain about what to do and how to keep going with our lack of sleep. One of the nurses entered the room and asked whether we wanted to be there with Sue in her final moments. We asked if that’s what this was and held her hand as she passed.

It was quick and seemed peaceful in the end. Just as Alfred and I weren’t sure what to do, Sue stepped in and made the decision for us. We went into their chapel to talk with the nurse about what happens next, then walked home as the sun set.

 

There was a lot to do afterwards. My workplace was generous with their compassionate leave. My brother had far more duties with a class of primary school children depending on him and a lot of work to do as a teacher only in his second year. There were forms to fill in, a building society to contact, a funeral to arrange. At first being so busy with the formalities was a blessing as a way to keep myself busy. My girlfriend had helped people with a lot of the kinds of forms I was dealing with and a great stabilising force for that and emotional support. The funeral was the first priority and Sue had specified a few things that she wanted. The service was at the Buddhist Centre, where she had attended courses and worked the front desk. My godmother was a teacher there and had her funeral service in their upstairs when she passed. It felt fitting that the pair would share that final experience.

Sue had mentioned back in the acute oncology ward that she wanted Let’s Dance by David Bowie to play her out in the crematorium, which got an odd look at first from the funeral home, but they still managed to arrange it. It feels odd saying anything like a funeral was beautiful, but the service, the cremation and the wake were perfect gatherings of people in Sue’s memory. Even the drunken end of the wake I like to feel Sue would have approved of, despite being fairly sober in her final years.

The day after the funeral I had so many things to arrange, but couldn’t. The constant pummeling of the first months of the year had finally calmed into one long, raw wound. This was how things would be now. No longer ever-changing from week to week, but now our entire world had changed and we had to adapt. My mum’s will has the house going to my brother and I. She mentioned that she was a prolific sculptor and her woodcarvings should be kept, sold, donated or even set on fire if we wished. Obviously the latter was not anything my brother and I would ever want to do,, but it was odd and funny seeing that stated in her will. There was also the strange turn of phrase, “If I am survived by a dog,” which she was. Rothko, like the house, is now a dog belonging to Alfred and I. During this time he acted up a lot with his dog walker and got dumped from her service. He’s settled, mostly, but it was a time of great upheaval for him as well as us.

I’d been living at my mother’s place… now mine and my brother’s place, since January 26th. It was made official at the end of May when I moved the last of my things out of my home of eleven years and landed properly in the house. Things have changed there, as they’ve had to. My board game shelves were a comforting sign that this was my home, as was my bed finally arriving. Rothko’s used to writers and gamers showing up. He adores Emma and it was great when he first started getting up to greet her whenever she came round. My old bedroom is becoming my room once more, although it’s still mostly boxes at the moment. I abandoned so many things when I moved out and they’ve all still been there. With my arrival and with my friend Lee’s arrival as a lodger, it feels like I’ve had to slash and burn a lot of my old life from the flat and of myself when I previously lived in the house. All that and a lot of my mum’s old things have had to go or be put into her studio while I work out what to do with them. Three lives have had to be taken apart to make room for whatever I am now and the people who’ll be sharing the house with me; first Lee and hopefully one day Emma.

There were more stories which took place during all of this, beautiful and sad moments, but all of that will be discussed at some point in the future, or in person when there’s enough whiskey in me. I still have a huge amount of forms to fill in and send off to places, new people to have to inform. Everything is not done and it doesn’t look like they will be for a while. My writing’s taken a hit, which is understandable but also frustrating. I’ve been able to write bits and pieces but mainly not prose. Lightning will hopefully still be out this year, but I don’t know when. I don’t know a lot about what’s happening at the moment, but I’m trying to get through it all. I still feel like a broken robot at times, going through the patterns of what my life was and trying to keep things together while I adapt to it all and occasionally just stop when I feel paralysed by the enormity of the changes, the grief. It’s overwhelming, but I’m getting through it slowly. I have Emma, my brother, my father and stepmother, the writers, roleplayers and my colleagues. Oh, and Rothko.

In writing here, hopefully I can exorcise the part of me which has been unable to bring everything up here. I express a lot through writing and while I’m having trouble getting going with writing prose, the ideas haven’t stopped. Hopefully they never will.

Life happens, all at once and never when we plan it. That’s one of the tenets I put out for Lightning when I was working out the pitching of this current edition. It’s also scarily true in real life. I’ll be writing more things here soon, hopefully lighter work, but for now, this is where I’ve been and this is where I’m at, where I’m likely to be for a little while longer.

Charlie E/N

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