24-05-26 My brother Neil was diagnosed with MND just over a year ago. It was a particularly cruel form of motor neuron disease called Progressive Bulbar Palsy, which initially caused problems with his speech, and then all throat functions, including eating and breathing. He had a feeding tube fitted to accommodate eating and latterly wore a mask to help him with breathing and in particular expelling carbon dioxide which built up in his system and gave him panic attacks and sleepless nights. After a long, hard year of progressive difficulties around mid-April he was taken into the Royal Infirmary.
He was very much mentally alert, as normal, (he kept his position at his work going until he was taken into hospital, only sending in a Doctor's note the day before he died) and communicated via a speaking keyboard. Things continued to deteriorate and after a few days he opted to have a morphine driver and then turn off the equipment that was keeping him alive. We all visited him on his last day and had the chance to say our goodbyes. He died just after midnight on the 22nd April. 01-09-60 to 22-04-26. Sixty five years old.
Until now I have not written about this in my blog. Not because it hasn't been important to me. The reverse; it has been too important, and I have lacked the emotional stamina to talk about it. Easier to go about normal life, partly in denial, lock it away; the pain and heartache in a private compartment. It is like looking at the sun. It can ony be done for short moments without damage. I will probably write a longer memorial at a later date. Right now it is still too painful and I am still reeling, even though we have endured a long and dreadful year of deterioration with the ominous, inevitable conclusion hanging over our heads.
However the reason I have to give voice to this tragedy now is that over the Edinburgh marathon weekend many of the family ran in various events. They raised over £10,000 for MND charities, with Neil's grandkids doing shorter events, his son Ryan, and husband-to-be Brian doing the Half Marathon (their first) and niece Amy doing the full marathon. Likewise, her first.
Amy at 10+ miles
Of course we wanted to support the runners and made plans to catch an early (North Berwick) train to Wallyford. With so many roads being closed to accommodate the runners it wasn't easy to get to a spot where we'd see Ryan and Brian finish their Half (in Musselburgh) and then shortly afterwards see Amy go past 10miles.
However our travel plans kept being hi-jacked by fate. We planned to catch a bus up to Waverley but as we left the flat, police cars were arriving at great haste to a spot outside the co-op where a tram was stopped, having struck a person. It was in the news later that a partially-sighted person had walked out in front of a tram. Within minutes Leith Walk was cordoned off and all traffic stopped. We had to leg it up to Waverley on foot.
Not a problem. Mary hasn't been able to run properly for ages but managed a brisk mile to the station and we still arrived in enough time for a station coffee as we waited for the departure board to announce from which platform the NB train would leave. We thought there must be some sort of delay as the train was announced (on time) but still no sign of which platform. I know from experience it can be any East-bound platform: 8 or 19 or 4 / 5 but since it is ALWAYS announced in plenty time we hung about the main area checking both the boards in the main concourse and the ones in the (old) ticket hall. Eventually out of frustration we went to platform 4 where we asked a member of station staff who told us unapologetically that the 9.39 had left on time 2 minutes ago. He had no explanation for why it was not up on the departure boards correctly and told us flatly the next one was in a hour's time. No apology, as if it were due to our own stupidity we missed it.
I was raging. Mary was not pleased either but steam was coming out my ears and I wanted to fight whoever was responsible for this huge frustration and fuck-up which seemed to be perpetrated just to wind us up. (I have never known Waverley to deliberately mislead its customers like this in 40 years of catching the North Berwick train.) We were not the only ones who missed this train and presumably there were plenty more frustrated people hoping to travel to spectate at the marathon, standing around the station.
Rather than look for someone to abuse, we opted to run up to Waterloo Place where we could maybe catch a bus towards Musselburgh and get there sooner than waiting another hour in Waverley. (A long time later we at least got the benefit of the return ticket back to Waverley at the other end of the day.) We jogged across busy roads and stood at the wrong bus-stop watching the 124 to North Berwick go past, or was it the 26? We then saw a bus to Wallyford or Musselburgh approach and realised it was also going to cruise right past our stop and we'd need to run along to the roundabout at the bottom of Calton Hill to catch it, about a quarter mile away. I set off at a very angry sprint with Mary not far behind.
The bus stopped to pick up people (those with the good sense to stand at the correct stop) and I managed to arrive just in time to hop on, gasping, and Mary not far behind. We crammed onto an already rammed bus - lots of marathon supporters - and there were no seats, so had to stand for most of the journey. Which was no faster than running there would have been, because around Meadowbank we overlapped with the leading runners in the marathon. (Which was why we had initially opted for the train.) We stood in traffic and start-stop crawled along Jocks Lodge until the right turn at Willowbrae for maybe 20 minutes, watching the leading marathoners go past. I was still seething from the train debacle, and really annoyed to miss the arrival and finish of Ryan and Brian (who had set off at 8am) but was beginning to calm slightly to be at least on our way and heading in the right direction.
Once off the bus we walked briskly through Musselburgh to the far end and the roundabout where my sister and her husband were standing. We missed Ryan and Brian who had finished about 10.17.
When I heard they were planning to do this run I did consider joining them. Sadly I left it too late to get a place. I didn't even get it together to join them on training runs although none of us were doing quite as much running as we'd hoped or planned in the months leading up to the half. You know how it is! However last time I messaged Ryan (since the race) he had been inspired by the atmosphere and enjoyed the experience so much he was thinking about maybe signing up for the full marathon next time.
When I heard they were planning to do this run I did consider joining them. Sadly I left it too late to get a place. I didn't even get it together to join them on training runs although none of us were doing quite as much running as we'd hoped or planned in the months leading up to the half. You know how it is! However last time I messaged Ryan (since the race) he had been inspired by the atmosphere and enjoyed the experience so much he was thinking about maybe signing up for the full marathon next time.
I forgot to mention the weather: SCORCHIO! The hottest day of the year by far. Not so bad for the half marathoners who started at 8am, but with the lack of consideration typical of the Edinburgh Marathon organisers, the marathon started at 10am. So a four hour marathoner would be running through the hottest part of a late Spring day. It seems, as it seems every year, that the priority of the marathon organisers is making money and that the welfare of the runners is low on their totem. And it was really warm. Just standing around in the crowds was close to an ordeal and (where possible) we would choose a shaded spot, out the sun, to stand and watch the runners come through.
proud parents
quite busy
We then had a couple of hours to kill before Amy returned to the same stretch at around 25miles. I felt a distance between myself and the running event. So familiar with the form and function and yet a thing I haven't actively taken part in regularly since lockdown. I lost my running mojo and taking photos of the natural world just seems much more compelling and creative than slogging up and down a boring mundane road. If Mary was still cracking the whip I'd be back in a second and will probably return when she is fit to return (work in progress) but until then, I struggle with motivation. Much as I hate being comparatively fat and slow, I just don't seem to have enough va-va-voom.
Rather than watch the back half of a marathon field trundle past I had a plan B to execute. We had our good cameras with us and went to Levenhall, an area of scrub at the far end of the lagoons, opposite the mining musem. Blessedly quiet away from the racket of the cheering crowds, where I hoped to find large skippers, common blues, shipton moths and exotic dragonflies (black-tailed skimmers) all of which have been found here in the past around this time of the year. However last year an excellent Spring brought everything a fortnight forward and I found none of the above species on this occasion. But had fun looking. We did a loop of the lagoons and the 2 hour wait melted into photo-safari joy. I had also packed sandwiches which were very welcome.
shelducks
a soldier beetle of exactly the same design (black heart logo on thorax!)
as one I photo-ed here a couple of years back and haven't seen since
as one I photo-ed here a couple of years back and haven't seen since
reed bunting
skylark
reed bunting
rb - closer
skylark - closest
I waded into the undergrowth to follow a reed bunting. It had been quite a good subject and seemed untroubled by my company, so when it landed on a post several hundred yards away I felt I might get closer yet. Which I did. Also nearby, a skylark that was happy for me to get within a few yards. We sat watching each other, neither making any sudden moves. I shot some video and as you can see he/she was completely relaxed. I later googled to see if only the males have the raised crest of feathers on their heads, lacking here. Both genders have the crest but only raise it when excited. It is one of the few bird songs we hear all Summer and never get tired of. (Unlike, for instance, the chiffchaff, chiff chaff chiff chaff.)
relaxed (slo-mo) skylark
Mary
After our sandwiches we checked the time and reckoned we best hurry back to the course in case Roly was having a stormer. It seemed unlikely as it was far too hot to stand a reasonable chance of the three hour target he was hoping for. We didn't see him and hoped that meant he was well ahead of schedule. We found out sometime later he had DNF-ed around the 16 miles and jogged a further 2 miles home. No point in trashing legs for a sub-optimal result. He had been looking great around 10/11 miles and we had cheered him on enthusiastically. There were quite a few PRC vests out on the course, many of which we didn't recognise.
a runner approaching 25 miles hi-fives a suit of armour at around
the 11 miles marker. The armour clanked like proper metal, not light plastic 😳
although he started running as we watched in admiration!
a PRC vest
another
I realised if Amy was finding it hard going at 10 miles she likely wouldn't be ahead of schedule at 25 miles so I took another chance to explore the area of Levenhall I had previously seen large skippers. It was, after all, warming up. Mary stayed in the shade of a bush at the roadside while I went for a wander, returning in plenty time to catch Amy.
hairy shieldbug
Still no large skips. Just this hairy shieldbug which I photo-ed taking off.
this one had developed quite a lean to the right - not ideal
great to see Jonny who had taken part in a work-place relay team
running a quarter of the marathon course and looking fresh
another PRCer
nice hair!
another one who might have been regretting his choice
of costume for the scorching day but was doing an impressive time
of costume for the scorching day but was doing an impressive time
Eventually Amy came past. By this time we had seen loads of walking wounded and Amy was looking better prepared and less frazzled or crampy than 90% of the runners. I think she had encouraged a dude who was temporarily stopped and having a bad moment. And he had then caught up to, and ran together with Amy, which helped them both dig in and survive the worst of the second half. They went on to finish strongly, not much over the 4hr marker, a time Amy would have comfortably ducked under had the weather been less oppressive.
Amy was running for My Name'5 Doddie, an MND charity. I believe her last long training run was partly done alongside the niece of Doddie Weir. He was a rugby player from the Borders, (near where Amy lives) a giant of a man who was diagnosed with MND in 2016, announced it in 2017 and his My Name'5 Doddie foundation had raised £8m by the time of his death in 2022 aged just 52. He used his fame as a well-capped Scottish player to raise awareness and funding for MND research.
the ribbon was a very nice touch
The day before the marathon, Neil's grandchildren Rory and Cara took on the EMF 2k and Elsie and Lucy did the EMF 1.5k. Mary and I were having a run/walk in the park and had hoped to see them but hadn't realised without making specific plans it would be impossible to find and cheer them on, in the busy crowds. They all did spectacularly well in their fundraising for the MND Scotland charity and the total now tops £10k. Ashley posted this video on facebook which is a gem.
If anyone would like to contribute to MND Scotland
they can do so here. Huge thanks to all who have already contributed.
Mary's blog covering Neil's last year in slightly more detail and a few thoughts about him.
Brian and Ryan with Laura's kids - sorry we didn't make it to the finish!
Neil and myself as youngsters, something like 60 years ago
Neil, - where he most loved to be - surrounded by his family
Neil and Sue.
Sue did an amazing job supporting Neil throughout his illness. Which has been a million miles away from easy. Sue never gave up and from day one was a tower of strength and positivity. It must feel massively unfair to have been dealt such truly awful cards, the worst possible, and be forced to go through an ordeal that goes from bad to worse and only has one hateful outcome. Thank you so much for being there with Neil and holding it all together.
