This post discusses topics some may wish to avoid: terminal illness, hospice care, death, and Japanese visual novels.

It’s odd to feel prepared for death because of a piece of fiction.

I’ve been a long-time fan of visual novels (VNs) as an art medium. For the those unfamiliar, visual novels are much what they sound like - long-form prose accompanied with visuals as well as music, and sometimes voice acting.

I’m an avid reader, but something about visual novels just hits different. Powerful prose accompanied with affecting songs can be a hell of a mix when handling emotionally charged topics - folks who have read through / watched CLANNAD and the ~After Story~ epilogue will be teary eyed at hearing Dango Daikazoku.

I digress.

I read a VN many years ago called Narcissu, belonging to a specific subgenre called utsuge - a portmanteau of 憂鬱な (“depressing”/“melancholy”) and ゲーム (“game”). These games are the definition of tear jerker, and Narcissu is no exception.

The story surrounds two people - the unnamed protagonist and Setsumi, a young woman - both with unnamed terminal illnesses, meeting in the hospice wing of a hospital. The story is told through the trappings of a road trip - an escape from the “prision” of the hospice ward of the 7th floor - to the island of Awajishima, to see the titular flowers at Nada Kuroiwa Narcissus. It opens, and closes, with statistics on suicide in Japan.

Medical inconsistencies aside, Narcissu tells a story about the loneliness of terminal illness, hospice care, and the joy of connecting with another even at the end of life. For those interested, it is available on Steam.

It also tells a story about taking control when it feels like all control has been lost.

After playing through, I recommend reading through this page by one of the original localisers, exploring the medical side of the story in more detail.

We lost my father-in-law to stage 4 colorectal cancer over a month ago. He was diagnosed in April, opted for hospice care in August, then passed away in September at home. We were fortunate to be able to be there for the duration.

Without Narcissu, I would not have been prepared for the indiginity of terminal cancer, nor the crushing emotional weight of caring for someone who cannot help but to die - my grandparents died while I was quite young.

In contrast to Narcissu, the hospice care my father-in-law received was fantastic, outside of the relative unavailability of day-to-day care, which we handled. Despite my experience working in healthcare, nothing quite prepares you for initimately caring for a family member, well past the notions of dignity and modesty, to provide them some comfort day to day.

In the US healthcare system, hospice care is well covered under Medicare, reducing the financial burden significantly. It is a sad state of affairs that folks who don’t want to saddle family members with medical debt choose to no longer treat their illness “early”. That said, doing so is part of exercising control.

I didn’t know my father-in-law particularly well - only through the vignettes painted for me by my partner and the infrequent conversations we’d share. I learned a lot more about him during this time, both from being with, and caring for, him for 8-10 hours a day and interacting with his friends who would come and visit.

I remember when I proposed to my partner, and sought permission in the old-fashioned way. I remember he told me that if I did anything wrong, he’d “beat my ass”. Of that, I had no doubt.

We connected in particular over college football - specifically the Tennessee Volunteers and Memphis Tigers - and in the last few weeks of his life we’d make sure to watch the games live or on replay. Shortly after I arrived, the negotiations between DirecTV and Disney broke down, requiring a trip to Best Buy and registering for YouTube TV so we could keep watching.

The interface, via Roku, was not intuitive for my father-in-law, so I was often on channel-change duty - this was a man who knew what to watch and when by calling out channel numbers. I had to ask for assistance, as I’ve never had cable. “Is that CBS?” I’d ask my mother-in-law. He was also a fan of Let’s Make A Deal - one of his shows that he absolutely had to have on. I still don’t see the appeal, frankly.

I think we watched almost every Vols and Tigers game together, from the opening of the season until he passed, enjoying the rollercoaster that only college ball can provide. He did not live to see the Tigers loss to Navy. Probably for the best.

It was not an easy death, drawn out over the weeks through starvation and dehydration - “terminal dehydration” as it is known. This is seen as a relatively “gentle” death in the medical community.

The increased visible discomfort and pain despite the palliative medicine makes me feel less sure that it is.

It was traumatising for my partner and their family, and has only reinforced my bewilderment at the controversy over doctor-assisted death for late-stage terminal patients.

The care goes on, though - supporting my partner, mother-in-law and brother-in-law.

I had to fly back before we could hold a celebration of life, and his life was certainly worth celebrating. A man who was beloved by his community, a passionate football fan, and someone who kept his sense of humour throughout the whole process. There is something special about seeing a dying man flirt shamelessly with old friends of his. He will be missed by all of us. My partner took home one of his old Vols shirts, keeping a piece of him close. He was never able to travel to see us in the UK.

I choose not to remember the sights and sounds of the last few days of his life - except that he passed during an Eagles vs. Falcons game with Jason Kelce wearing a heinous velour tracksuit on screen at the time. Thanks Jason Kelce - you are now immortalised in our family history for all the wrong reasons.

Narcissu ends a sad note - it is an utsuge after all - but the protagonists develop new happy memories along their physical and metaphorical journey. We had the same, even with the spectre of death looming over us.

Life is not a story, but has an ending all the same.