The Final Week of a Teenage Space Pilot: An Open Letter to Frontier and Friends

2019 May 14 - 22

Created by Mathew 4 years ago

[First published on Westhorpe.net on 01/07/19]

 

Dear all,

As any of you who followed my teenage nephew’s brief, tragic foray into the Elite Dangerous community starlight likely already know, Michael (aka CMDR Michael Holyland) died on 22nd May 2019. 

His funeral service and cremation was on 7th June at which I gave two eulogies to remember Michael, to thank those who supported us and to help those attending process his end. 

But I have been very aware that not everyone who has been there for us was able to attend those services. In Michael’s last week of life, online a whole network of new friends sprang up in our darkest hour and made things more bearable with a magnificent display of empathy, kindness and creativity which I feel deserves to be recognised. 

I know that was Michael’s wish, so I’ve written this account of how Frontier and friends made the miserable, intolerable last days of a 15-year-old boy infinitely better.

Michael's Last Week

On 14th May, I stood in Michael's hospital room in Addenbrooke's, Cambridge as I tried to process the inevitability of his forthcoming death. 

At that moment, he was perched on his hospital bed playing a racing game on his XBox, squinting at the screen obscured by his grotesquely swollen face. He was oblivious to his unavoidable fate. There was nothing more anybody could do for him; after almost six years of debilitating illness, all medical treatments and options had been exhausted or were no longer viable. We all just had to watch helplessly as this isolated, disabled and lonely autistic teenager unknowingly faced his final days. 

In an act of aimless despondence, I sent a tweet... and that started something bittersweet and amazing.

It's heartbreaking watching my nephew squinting at the screen as he strives to achieve his #EliteDangerous goals, knowing that he'll likely never achieve them. I'm thankful that it's there as a coping mechanism though, at least while he's still capable. pic.twitter.com/wpwHxd1CQq

— Mat Westhorpe (@Freebooted) May 14, 2019

[I'd taken these photos earlier that day in the 'teenager's room' where Michael had been allowed to set up his PC.]

It wasn’t long before I was contacted by Paige Harvey, a community manager at Frontier Developments, the studio behind Elite Dangerous. Paige had seen my tweet and wanted to do something to lift Michael's spirits. She told me that she was scouring the office for 'goodies to send'. At this point, I hadn't made the gravity of Michael's circumstances clear on Twitter - for good reason, Michael was pretty internet-savvy and we'd taken the decision to keep his terminal state from him to spare him avoidable emotional distress - but on learning that he only had a few days to live, Paige moved things up a gear. And then some.

The next day, she and her colleague Sally Morgan-Moore visited Michael on the oncology ward at Addenbrooke's hospital and, as promised, brought a bag of swag including a poster signed by many of the Elite Dangerous team at Frontier. They stayed for a good while and were absolutely brilliant with Michael who could be quite abrupt and challenging at times. By the time they left, Michael was buzzing and eager to get the in-game gifts he'd been offered). I'd not seen him this elated for some time. Michael's Dad, Karl, got the gifts framed and mounted on his wall.



And this was just the beginning of his brief but wonderful relationship with Frontier and friends. Michael would tell any passing nurse who cared to listen about his visit from 'the people who make Elite'. Meanwhile, the outpouring of empathy and support continued from all quarters. Scores of fellow Elite Dangerous players sent their best wishes and offers of all kinds; authors Drew Wagar, Kate Russell, and their publisher Dan Grubb of Fantastic Books Publishing all got in touch; David Braben tweeted his best wishes.

Michael was loving the attention. I'd read him many of the supportive messages from various sources on Facebook, Twitter and elsewhere. Any messages which involved an invite to join a group, activity or expedition had him reaching for the voice comms. 

It was a difficult decision to know how much of this we could expose Michael to. His autism and life experiences for the past half-decade meant that his social tolerances were poor, so we'd always tried to discourage too much contact with 'strangers on the internet'. But this was something special - the overwhelming kindness that was being shown by a videogame community was such a powerful, positive thing that it would have been a shame to keep Michael from it, especially given the stakes. 

I'd been helping Michael achieve one of his ambitions to stream his game activities, that was relatively manageable to police - especially with a viewership that largely just included Michael's younger brother Nathan and friends.

I'd taken the opportunity presented by Paige and Sally's visit to discuss how we might safely manage Michael's engagement with the community and to field my concerns that we'd be involving lots of people in a story we already knew was going to end in tragedy. Paige assured me that it was something they were equipped to manage and so we set up a forum post which was carefully tended to by forum mod TJ (to whom I owe many thanks for his prudence, diligence and diplomacy).

The whole experience had Michael brimming with new-found energy reserves. In the day or so following the visit, he would spend hours either playing Elite or tinkering with ship designs in companion site, Coriolis.io.

His buoyant mood also led him to successfully managing to walk from the oncology ward all the way down to the food concourse, a feat he'd not managed for weeks. This was encouraging, because Paige had been back in touch with an invite for Michael to visit the Frontier Studios on the other side of Cambridge, which Michael had cheekily requested during their visit.

Frustratingly, Michael's doctor had strongly advised against his departure from hospital, citing concerns that his lungs were too unstable and even the short trip to the food court may come at a price. This was a real blow, as Michael (and myself, to be honest) would have really enjoyed a tour of Frontier Towers.

Enter Zac Antonaci who, until this point, had been confining himself to being our most vocal and entertaining Twitch stream observer. He also happened to also be Paige's boss at Frontier. He'd caught wind of Michael's inability to visit and was looking at ways of bringing the tour to Michael. 

Not long after, in line with the doctor's prediction, Michael deteriorated again, his facial swelling becoming so severe that it was difficult for him to open his eyes at all. Frustratingly, this meant his one available form of escapism was now under threat.

However, we had a backup plan. Drew Wagar had sent us the audiobook version of one of his Elite novels and Dan Grubb of Fantastic Books had followed up with giving us access to the rest of the Elite Dangerous back catalogue. Michael had already jokingly threatened to send his parents away for the weekend so he and I could binge-listen to them all. Now it was looking like that may be our only option for keeping Michael from going insane from being imprisoned inside his own broken body.

While nurses and Michael's Mum, Laura, did what they could to reduce his swollen eye tissue, Michael refused to give up and was still somehow managing to peer at the screen enough to tinker with his Coriolis.io ship loadouts.

It was Saturday morning, three days after Paige and Sally's visit, when Zac fielded an ambitious (ludicrous?) plan; 'What if we could organise enough people to create a short story, set in the world of Elite where Michael was the hero. Something he could listen to and enjoy when he had difficulties with his vision, like now.'

It sounded like a wonderful idea, but the reality was that Michael's lung deterioration was really starting to manifest now. The increasing pressure from air and fluid in the tissues around his throat meant that he had to constantly raise his chin to keep his airway open. He would occasionally have mini-choking episodes and was unable to move without becoming breathless.

At first I declined Zac's offer, feeling that it would be an undertaking that would take more time than Michael had. But then Michael rallied and recovered enough to start making a hilariously ridiculous list of requests for his Elite account. Having already enjoyed being gifted a second account, dozens of skins, and access to new game content, he'd been emboldened and was now requesting a Tony Stark-style personal tower on a moon orbiting the planet Commander Picard had kindly discovered and named for him. A planet which he wanted moved closer to the human-populated 'bubble'. And he was still managing to play a bit of Elite! I told Zac and we decided that he'd try to get something put together as quickly as possible.

Meanwhile Michael's new-found fame had led to him make a few in-game contacts and we'd even been able to invite a couple of them onto the stream for some shared spaceship shenanigans. Special mention to Commander UselessED who Michael took a shine to and became something of a mentor for him (even though UselessED should have been studying for his GCSEs!).

On Sunday, Drew Wagar somehow managed to write a brilliant 7000 word script in a single day! (As an occasional writer myself, I'm personally in awe of this output.) 

By Monday, Zac had conscripted no fewer than three professional voice actors to record the story - much gratitude to Richard Reed, Jay Britton and Amelia Tyler (who deserves an award for driving for six hours in a day to get to the studio and back). On Tuesday, audio engineer Joe Hogan worked his magic to put it all together and by the evening, Zac and Paige were back at the hospital visiting Michael and playing him an exceptional piece of bespoke audio fiction which was preceded by a personal message from David Braben. 

Sitting in the hospital listening to it all with Michael was an epic, bittersweet experience. There were some lovely metaphorical nods to how Michael had faced his medical challenges and some of the more obvious references made his giant, puffy face beam with pride and happiness. 

The next day was Wednesday, the day Michael died.

We were streaming. Michael and I had been preparing for an expedition to obtain special Guardian modules for my ships and due to his new Elite celeb-filled Discord channel (encouraged by 'Elite CEO' Zac Antonaci), we'd just been joined by CMDR UselessED and CMDR Eid LeWeise.

Suddenly, Michael coughed and started to become distressed on comms, so I cut the stream, then after hearing Michael's Mum shut his comms down, I made my apologies and left the channel, heading for hospital.

By the time I got there (I live about 45 minutes away), he'd been sedated and wasn't expected to recover consciousness. His Mum, Dad and I took turns to sit with him and hold his hand. While I was with him, I played his Elite audio story again. Some of Drew's words hit much harder the second time; 'bravery, courage, unbowed in the face of overwhelming odds.'

He took his last breath peacefully a few hours later. We were all there.

Final Words

His end was unjust and tragic, but because of the heroic kindness of a videogame community, his last week of life was filled with an unexpected amount of happiness. For that, I am immensely grateful and I want to offer my eternal gratitude to everyone who contributed to that, from the players who stood ready to meet Michael online and those who took the time to send him an ‘o7’, to the Frontier staff and associates who gave so much of their time, compassion and creative energy.

It was Michael’s wish that the audiobook, Michael’s Story, should be shared with the Elite Dangerous community and I’ll talk with Zac & co. to see how best to go about this. I would dearly love Michael to be remembered in the best possible way.

On behalf of Michael and his family, thank you again, you magnificent humans, you make the world - and the internet - a better place.