My father and Terry Pratchett

[lolmac]

No, my father never met Sir Terry Pratchett.  He probably never read any of his books, although he would have loved them -- especially the later, snarkier, more Twain-esque* ones.  Funnily enough, my father actually looked a little like Terry Pratchett, although he didn't wear a hat.

Many of you already know that my father (the nuclear physicist) died of Alzheimer's.  He didn't have the same very rare type that Sir Terry had, which was diagnosable and allowed the victim to continue functioning to a considerable extent for several years.  My father's early-onset Alzheimer's robbed him of vocabulary, coherent speech and linear thinking well before the end, and like most cases of Alzheimer's, the confirmed diagnosis took the form of an autopsy.

But.

Dad didn't get to read any of the books because his illness was already well advanced by the late 80's, about the time Terry Pratchett first became a full-time writer.  At that time, Alzheimer's was still rare and little studied (his doctor made a horrible mess of the diagnosis, which devastated the family even more, especially my mother).  Early-onset Alzheimer's was even rarer.  My father was one of the first whispers of the coming tsunami: during the decade before we lost him the rest of the way, we saw more research done, and a gradual slight lessening of the utterly black mystery.

One of the last important decisions Dad made in his life, while he could still make decisions, was to participate in one of the clinical studies that were being conducted on the first generations of amelioratory drugs.  He was too far along for it to do him much good, but as long as he could choose to throw his damaged brain into the ring for one last round on the side of science, he did.  (It wasn't even the very last last round, as it happened.)**  The drug he helped test was entirely unfamiliar to us at the time, but ever since then, every time I see an ad for Aricept, I think about my father's final legacy.

Yeah.  Aricept.  That's the medication that Sir Terry Pratchett took (about which he wrote a brilliant blistering advocacy piece regarding the importance of getting meds into the hands of those who need them, especially those who were not best-selling authors with pots of cash).

I got onto a mad Pratchett binge starting a year ago or so, and have worked my way through the entire Discworld series, re-reading the works I had read and reading, for the first time, the ones I had not -- which was more than half of them!!  I've read sections out loud to Missy, and we've listened together to Stephen Briggs' brilliant audiobook performances of a couple of them, with more planned for the future.  I read Raising Steam with misty eyes, seeing in the book Sir Terry's farewell to his own universe.  I just saw, this evening, the reports that one final Tiffany Aching book was completed and is still in the queue, and it's like a final gift manifesting from Dunmanifestin.

By my own lights -- entirely my personal take here, of course -- Terry Pratchett, like most masters of any art, became better at it as he went.  The early books weren't works of genius and masterful craft; he learned as he went, and by the last stretch of his career, it was one drawjopping gem after another.  (It reminds me of Stan Rogers, in fact.)

Sir Terry completed four books after his diagnosis -- five, if The Shepherd's Crown is a reality and not a rumour.  I don't know when he started taking Aricept, and I don't know how much of a difference it made in his last eight years of life.  But in a weird way, in the middle of my grief and loss over a favourite author, I'm also remembering my father.  I remember him opting in to the study (he hated the weeks when he got placebos instead of active pills, and knew right away when he had).

Dad, you knew what you were doing would help people, hopefully for years, years beyond the point where you could reach directly.  Somewhere, there are undoubtedly Alzheimer's victims whose little slices of pharmaceutically borrowed time -- borrowed or stolen or snatched away from the greedy slavering darkness -- have given them time to finish projects, to do that extra bit of research or watch their kid pass just one more milestone, or maybe, if it's Terry Pratchett, write half a dozen novels.

It's a weird comfort right now.  But I'll take it.  Weird is okay by me.

I miss you, Dad.  And I will miss you, Sir Terry Pratchett, even though I only got to know you through your books.

Thank you.  Thank you both.


*Let's be honest -- if Sir Terry had been writing anything other than genre fiction, he'd've been crowned as Twain's successor years ago.

**Dad's brain was donated to Alzheimer's research -- or, as I like to think, less than a day after his death, he was reincarnated as research data.

Comments

[dbskyler.livejournal.com]

What a wonderful connection between your father and Terry Pratchett. Your father really did leave a great legacy just in that one act.

I'm glad it brings you comfort, even if it's a weird comfort.

[lolmac]

*hugs back* Thank you.

[thisbluespirit]

It's a weird comfort right now. But I'll take it. Weird is okay by me.

♥ It should be a comfort - and Sir Terry isn't the only one he'll have helped. My Granny had Alzheimers (not early onset) for 13 years, from about 1992 & it was awful. My great-uncle had it more recently and with that drug, it's still hard, but he's been able to keep doing so much more and remain himself for so much longer than my Granny could.

[lolmac]

I learned about the Aricept late last year, when I was reading A Slip of the Keyboard, and I'm not ashamed to admit that I sobbed. I had known about Sir Terry's Alzheimer's for years, and took it to heart, but I hadn't known he was taking Aricept. It put a sudden, human, astonishingly personal face on it all -- before then, I had known intellectually that all these people around the world were being helped just that little bit, but they had no sharply defined identity.

[catsittingstill.livejournal.com]

Your dad did a wonderful thing. I am grateful to him.

[lolmac]

Thank you! Many others were part of it, of course, but I didn't know any of them . . .

[liadt]

I'm glad you have some comfort, even if it's weird x

[lolmac]

Thank you *hugs*

I still miss my parents.

[liadt]

Bless you *hugs*

[thothmes.livejournal.com]

People all over the world who never knew him, have precious memories, precious time with their family that your dad bought for them with his willingness to accept risk. It is a beautiful legacy. It won't share a joke with you or commiserate with your losses and cheer on your successes, but for a scientist, it is a very fitting memory.

On a far more banal note, I have a favorite picture of my dad as the lock screen on my iPad. I usually open the thing in portrait orientation, and wave him a mental hello. Today, for the first time, I was holding the thing in landscape as I opened. Oh dear! Dad crotch shot. Perhaps I will change it back to the photo of 25 year old Dad and 3 year old Thothmes on his lap at the brook in the Adirondacks.

I think often of what you said to me when he died about how lucky we are to have so much to mourn. It's the type of remark that one understands at once, but absorbs slowly. We are indeed so, so lucky. Words of comfort that grow, unfold, and warm the heart more and more through time. Thank you, so very much!

[lolmac]

As part of the overall research, all of us (my siblings and me, that is) sent blood samples to a center in Texas that does studies on families, especially families with a single outlier patient. (Dad was and still is the only instance of Alzheimer's in the bloodline that we know of, knock wood that it remains so.) Did you know it's actually rather hard to get blood samples sent through ordinary means? Especially when it's supposed to be kept at a low temperature and transported as fast as possible? If the lab hadn't coordinated the whole thing, I'm sure we wouldn't have been able to manage it. All I had to do was take the paperwork to my doctor, have them draw the sample (a couple of good-sized vials), and leave them to wrangle it from there.

Thank heavens for the kind of friends who understand the unusual -- when I tried to tell my co-workers at the time that Dad had become research data, they thought it was, well, a pretty sick way of thinking about it. But he'd long since lost faith in religion. It was the only afterlife that he believed in, and it's the one he got. And it had more meaning to him than any shiny tale of heaven ever could have.

[thothmes.livejournal.com]

I simply don't understand how that is a sick way of thinking about it. You were seeing it the way he would have and were understanding that all was as close to how he would have wanted it as possible under the circumstances. People need to be cherished, honored, and remembered for who they are. There are people I've known that were certain that they would be going to be with God, an eternity of adoration and bliss. I try hard for them to think of them that way, although I myself have always thought that Dante's Inferno was the interesting section, his Paradiso the dull one, and neither to be what we will get. I have known others who feel that they were here before and will be here again, that it is all just continual skin shedding. My family tends to the and then you die and there is nothing, because you have ceased to exist theory. The idea is to honor them in the way they would wish, and cherish the time you have together.

How very rude to say "Absorbing loss and reflecting on it. Ur doin' it rong!"

My husband's maternal grandfather and his sister, his own mother and two of the aforementioned sister of the grandfather's kids (his mother's cousins) all have dementia or died of Alzheimer's, so I'm... concerned. Thank you and please thank your siblings for your contributions. Science works, and it depends on data.

[lolmac]

As I recall, they were already squicked at the thought of Dad's brain being donated, and they didn't understand how I could joke about the whole thing (clearly, the comment about being reincarnated as research data was a joke). Then, too, with Alzheimer's little known and less understood, it wasn't a comfy subject. I was also using the d-word, horrors. (As I recall, this was when I suddenly realized that I hate the phrase "passed away", so there I was, telling people that my father had died, and I had seen his dead body. Six months later, I was telling people that my mother had also died. Quite unreclaimable.)

In fact, I not only saw his body: he was cremated after the autopsy, so I saw his body without it having been prettied up by a mortician. It was the first actual dead body I had ever seen. This is one of the reasons that I insisted on seeing him, and went to considerable lengths to do so. I'm still very glad I did; it was tremendously important. It's hard to articulate why, but it was.

[thothmes.livejournal.com]

Well, my Dad died, and in his final hours they called me down here from up in Burlington, and told me that I could come up and see him, that he would be gone soon, but that he was far enough along that he would not notice or respond, and that he could linger for a very long time that way. I opted not to drag Steve away from his patients to provide childcare, because I considered that my Dad, his wife, and their son, my youngest brother were a complete family unit. Dad was not and would not be alone, and I would be intruding in the grief of his wife and younger son, who would feel the need to play host and hostess a bit. My brother was 28. Dad and I had had a lovely visit when I brought Eldest Daughter up a short time before to see him. I had said all that needed to be said, and so had he. We had known that good bye might be the last one.

The last glimpse I had of him was the fine grey ash we poured into a hole of the moist earth of the memorial garden. He was the non-custodial parent. For months and months at a time each year he was physically absent from my life. It was harder for me to feel that he was really gone, and not just a phone call or a letter away, because I did not see his body, and his absence was part of a familiar pattern. It would have been easier to know in my bones that he was dead if I had seen. I still have no regrets. I did what was best in the circumstances. My last memory of him in life is strong and a good one. It was a good visit, but I also know you were wise to seek finality too.

I absolutely abhor all the ways people avoid saying that someone died. I have instructed my nearest and dearest that although I come from a family of scholars, and have a long and illustrious collection of successes in my academic record, when my time comes, they are not to say I have "passed". Indeed the truth of it will be that I have dwindled and failed, and the proper way to express that is to tell people that I am dead, I have died!

[http://users.livejournal.com/traycer_/]

Such a beautiful tribute for two very wonderful men. I love how you took their legacies to the barest minimum and shone a spotlight on them both, giving us a glimpse of the very real people of the disease. *Hugs you tight* Very poignant. :)

[lolmac]

*hugs you back*

[clocketpatch]

*hugs*

I know several people who have been, or are current are being, helped by what your dad did. His courage and generosity is astonishing.

[lolmac]

*glow*

[a-phoenixdragon.livejournal.com]

Gods...

This is a wonderful, marvelous connection. Your dad's bravery, his drive to try to help doctors understand and maybe, just maybe help the next poor soul after him -

Your dad was a gift upon this earth. Truly, one of the quiet heroes that save so, so many people and never quite get the love they should get (even if it would surprise them). Because true heroes just DO. They do because they feel they can and because they feel they should.

I am so glad that Sir Terry got a few more good years, bringing us his wonderful words and thoughts upon the page. I'm glad your dad did that for him. Two heroes from two different worlds, yet it is funny how through their odd, but unsung connection, they made the world a better place for us all.

*hugs you hard*

[lolmac]

One of the many Pratchett quotes that have been tweeted today is about doing whatever you can do, in whatever way you can, to make the world a bit better. Both my parents were like that, as much as they could be. This wasn't the only thing my father did that had some long ripples; and, because of the kind of person he was, we didn't find out about most of it until after he had died.

[a-phoenixdragon.livejournal.com]

Which makes him only that much more a hero in my eyes. Gotta look for those, they aren't as rare as we think, but they are hard to find because no one really LOOKS.

*HUGS*

[jackwabbit.livejournal.com]

This is beautiful.

*raises, then dumps one out for your dad*

[lolmac]

*raises and toasts*

[lothithil.livejournal.com]

I thank your dad for having such a wonderful daughter. And I thank Sir Terry for warping you even more wonderfully!

[lolmac]

*squishes you*

[pitry.livejournal.com]

Hugs! And I think it is a wonderful comfort. ♥