Jeff Keen

After 24 days of holding out hope that some troubling symptoms were curable, followed by 22 days of watching the realities of an awful incurable brain disease take shape, my mom died Tuesday evening. My dad, my brother, and I were close by when she passed on December 20th, 2016.

The 46 days leading up to this event have been heart-wrenching. Watching someone you love suffer and wither away before your eyes is an experience I hope none of you have to face. And if you’ve done that already: my deepest condolences from a place of unfortunate understanding.

I’ve been fearing the death of my parents since I was ten or so. I was probably more tuned into it than most thanks to my Mom’s sense of morbid reality — like when she reminded us during the Christmas of 1988 that we should talk with our grandmother in Australia because she “doesn’t have much time left.” And then reminding us again in 1989, 1990, 1991, and the next fourteen Christmases until she died in 2006. You’d think that after a lifetime of thinking about death, I’d be more ready for it. But who is ever ready for this?

Creutzfeldt-Jakob Disease is terrifying and unstoppable, and I’m confident that had it been anything else she may have survived. Her side of the family was a tough bunch — my grandmother survived diabetes, Alzheimer’s, and a tennis-ball sized brain tumor, living to 95 years old. My Mom survived Diphtheria and Typhoid Fever in Zambia as a child, and in the last few years breezed through two hip replacements and two lens replacements like it was nothing. And then, of course, there’s what I consider her greatest medical feat: birthing me — an eleven pound baby — and then putting up with me through my adolescence.

But it took a rare one-in-a-million disease of mystery origin to defeat her at the age of 71. Nobody saw this coming, and I can’t say I was ready for it. But again, who is ready for this?

Well, my mom was more ready than any of us. For years I rolled my eyes when she’d tell me she was sorting through and throwing out old stuff.

“I don’t want you to have to deal with all this after I pop my clogs”, she’d say.

A few years ago, after my parents retired and moved to Austin, they signed up for The Neptune Society. It’s a prepaid service that handles everything after someone dies — from removing the body, to cremation, to the scattering of ashes. I remember mom excitedly telling me that all we’d need to do whenever that time comes is to get some documents out of the freezer, call the number on the card, and everything will be taken care of.

At the time I thought this was ridiculous and quipped “Wow! What a timesaver! We’ll barely have to grieve!”

In the past few weeks while digging through documents, her preparations continue to amaze me. Lists of passwords and instructions of what to do “if she dies first or loses her marbles”, with a paragraph reminding my brother and I that “going through a parent’s things after a death is not easy, but remember that it’s just stuff.”

Only now do I appreciate all the time and effort she spent preparing us for this unexpected time, and that her wishes were made crystal clear.

Here is what I want: to be placed, unadorned, in the cheapest container possible (preferably a cardboard box that will burn easily and thus return to the earth), and to be cremated.

As for my ashes, you may throw me over the fence if you so desire. I really have no particular wishes at this point and do not need to return to anywhere on this earth.

I definitely do not want to be buried or have any kind of funeral. Rather I would love you to have a celebration instead.

I am down as an organ donor. If my body can help medical students learn more about the human condition and the human body, then by all means get my mortal shell to such a place.

A life-long educator, she was adamant that after her death everything be done to help others. And even on the 28th of November when we all received that heartbreaking terminal diagnosis, with her ability to communicate already crippled she determinedly told the neurologist that she wanted her experience to help people. To help in the study of prion diseases, as well as help him (a fairly new Neurologist) get his first publication out of the deal.

(We’ve arranged that her brain will be donated to the Case Western center for prion disease study, which will hopefully help the world get one step closer to finding a cure for prion diseases.)

My dad has requested to our family friends that “instead of sending flowers, cards, or sentimental writings, what would mean so much more to us/her would be to get a copy of a nice, meaningful and soul-uplifting book that has had some special meaning for you, and for you to give it to someone in memory of Colleen. Let her quest as a life-long teacher be passed along.”

I’d like to add upon that theme and request that you take something away from my experience.

In the last six weeks, my family’s dynamic has completely changed. This thing broke down walls between us made us all realize what’s important, and now we all can’t help but think “what took us so long to get here?”

My dad has been opening up and sharing stories of his life, his parents, and his experiences while my brother and I stare at him with our jaws on the floor. I always knew that my parents had lived incredibly rich and interesting lives, but I never really took the time to absorb or appreciate the details. For too many years I considered myself an anomaly in my family and thought to myself “I am who I am in spite of them”, only now realizing the obvious: I am who I am because of them. Shame on me.

I think about how my parents have lived a mere 10 miles away from me for the past five years, and yet most of the time I found it a monumental effort to make time to join them for tea. I’d often receive calls like this (voicemail) from my Mom:

I’d listen to it and think, “yeah yeah Mom, I’m busy. Some other time.”

I don’t think I need to tell you how how much time I’d set aside, or how many miles I’d drive for another cup of tea with everyone.

So I make this request to you:

Think about mortality and contemplate losing the people close to you until it makes you feel really uncomfortable, and then let that uncomfortable sense of reality diminish the feelings of frustration you have with them. Permanently cut them all more slack than you think they deserve. Ask them the questions you’ve been meaning to ask. Tell them the things you’ve been meaning to tell. And most importantly, choose to find the genuine love and appreciation you have for them before a tragic event forces you to.

“Death is an inevitable part of life and it must come to us all”, my Mom said in one of her notes, written years ago. It’s a pretty shit part of life, if you ask me, but what else can be done with life’s shit than turn it into fertilizer?

For my entire life I watched my mom always put herself last in order to benefit the people she loved. And now, at her own expense, she’s pulled us all closer together. I wish she were here to see it.

I’m 33 years old, and I enjoy talking on the telephone. There aren’t many of us left — my generation has fully embraced texting. Not just embraced, either, but essentially substituted all former phone communication with text messages.

I accept this as a reality of modern society when it comes to easily communicating with platonic friends. And in the cases of just needing to tell someone I’ll be a few minutes late, I welcome it. But with dating — especially in the early stages — I find text-only communication incredibly frustrating.

My attempts at talking to dates and potential dates on the phone have only been met with friction. I met a girl at a bookstore once, and we chatted for a while. She gave me her phone number, and told me to call her sometime. So I called her, only to have her say “Why are you calling me? Who talks on the phone anymore?”

I do. The 33 year old unicorn.

If you’re wanting to date someone, you’re trying to get to know who they are. The sooner you can get to the truth, the sooner you can move forward, or move on. And with the explosion in online dating where you’ve never actually met the person in question, who wants to spend all day staring at chat bubbles and sending flirty messages before a first date, when a three minute conversation could’ve told you definitively: this person is bat-shit crazy. Or less severely, “wow, this person is awkward.”, or simply: “I can’t stand this person’s voice”.

With texting, you’re forced to extrapolate personality characteristics with how they write, and it doesn’t always paint a pretty picture. Never before have ellipsis at the end of a sentence carried so much weight, or has a typing indicator had so much power over your emotions. And never before has incorrect spelling so easily sullied the prospect of a potential spouse.

Phone conversations offer so much more than texting can: instant feedback, subtle inflection, and easy-to-understand sarcasm. When it’s all transcribed to text, how can you tell what’s real and what’s edited? Are they actually witty, or did they think about what to say for an hour and run it by a couple of friends first? Was that sarcasm? Did they actually think what you said was funny, or was that a courtesy “haha”? Who sends five texts in a row, one after the other — is this person insane? So many questions.

I want to hear how you talk. I want to hear the inflection in your voice when you tell me about the crazy close-encounter with the shark you had or the excitement in your voice when we exchange opinions on the last few episodes of True Detective. Screens full of well written paragraphs and sentences with a few extra exclamation points just can’t compare.

So forgive me for wanting to use some dying nineteenth century technology in a twenty-first century world, but I don’t want to be your pen pal. I want to talk to you.

Call me sometime.

I’ve been slowly going through some boxes of files I’ve been holding onto for more than a decade. The things my former-self chose to keep are mostly pointless: assignments, notes, tests… from as far back as the seventh-grade. I’m sure I didn’t keep everything, either, but the mound of paperwork I did keep is still overwhelming.

And that’s only in print. My digital collection of files extends back even further (all the way back to 1987, I believe) and in some ways, the digital problem is much worse. Need that conversation we had about CoCo Puffs in 1999? I probably have it, somewhere.

Before you start calling me a pathetic pack-rat, allow me to say that I am aware of the problem, and have identified it even further—“sentimental pack rat” is the term, I believe. The hardest part of resolving this issue is behind me–admitting that I have a problem. Now comes the hard work of eliminating the trail of my past that I’ve kept in two or three bankers boxes for most of my life.

While most of the things I’ve kept are completely useless and shouldn’t have been kept in the first place, there are a few gems.

Here’s one of them, from 8th grade:

English 8, 10-10-94

What I Want To Be When I Grow Up

When I grow up I do not want to be sitting behind a desk, wearing a suit and tie, talking to a guy from another country whose name I can’t pronounce having to watch every word I say so that I don’t offend him, trying to sell him a product or buy from him a patent.

I would rather choose a more exciting job like being a test pilot for McDonnel Douglas or Grumman, for instance. I would like this job because I would never have to worry about what to wear. I’d put on a flight suit, with no worries about matching colors, about brand names, or the latest fashion. No choices and no thinking while I am getting ready. Cool.

When I am in the plane, I’m in charge. I would not be driving a bus in the air (like the pilots of Northwest Airlines) and I would be able to fly the plane how I want to and see if it works to the specifications expected of its designer. I would also be testing myself, my knowledge and skill of flying, every detail about the aircraft and even my instinct. If things go wrong I’d have to make a quick decisions, not only to complete the tests but to perhaps save the plane.

I would hardly get bored because new planes, new instruments, and new weapons come out for me to test all the time. This is what I call a cool job, flying a plane, having fun, and getting paid.

There is only one setback to this job if the designers make a mistake, I might not be around to complain about it.

Hilarious. I also included a drawing.

I’m not sure how this happened, but at this point of my life—one year before discovering the Beatles, and two years before discovering programming—I was really into planes. Between the ages of ten and fourteen, my bedroom walls were covered with pictures of jets. I regularly absorbed books about the design details of anything with wings, and drew pictures of planes all the time. I remember all of that very clearly. What I don’t remember, however, is my apparent worry of what I might wear in the future, and fear of one day not being able to pronounce someone’s name.

It’s finding gems like this that assuage my negative feelings of being a sentimental pack-rat. For once, my former-self was correct in the prediction that my future-self would someday take great pleasure in reading this.