To our dog, Buddy, on his passing- thank you

Elijah and Buddy IMG_1038

Two great buddies- grandchild Eli and Buddy the dog

Torrey (my eldest stepson and a superlative gentleman) and I took Buddy for his final visit to the vet. I couldn’t have done it without him. Torrey is one of those exceptional people who knows how to be there in just the right ways, at just the right times. This was one of those times. During the car ride I sniffled quietly, as Torrey made just enough small talk to take the edge off the moment. I was petting Buddy, who had moved up to stick his face between the driver and passenger seats. He wanted to have one last gaze through the Durango windshield at the world he had celebrated for nearly eleven years. I looked deeply into Buddy’s eyes one more time to make sure I was doing the right thing. Unfortunately, I was.

Torrey carried our 85-pound Yellow Lab into the waiting room, where we held vigil. I stroked the full length of Buddy’s blond coat, and talked to him as I always had, pretending he understood my many questions about philosophy and the meaning of life. Forever the Zen master, Buddy chose to remain silent in his knowing way, as I prattled on. I suppose I was hoping that the familiarity of my voice would heal him in some small way. And I suppose I was actually comforting myself, as much as I was comforting him. After the vet assistant administered a shot, and Buddy was drifting off to sleep, my last words to him were, “Thank you.”

Strange and remarkable how history reverses and repeats itself. Buddy, as much as anyone, was part of my illness and part of my recovery. I used to take Buddy on a 2-3 mile walk every day. Then, as IPF (idiopathic pulmonary fibrosis) slowly hijacked my lungs, our walks became shorter and shorter, until eventually they stopped altogether. It became difficult for me to even sit without oxygen pumping through my nostrils.  I apologized to Buddy daily for my inactivity.

After my double lung transplant, my body was wracked with exhaustion. My muscles had withered, and my spirit struggled to keep up with my doctor’s orders to exercise. “Get up off the mat,” I would chant to myself. It was the only way I was going to fully return to my life. But it was Buddy who got me up and moving once more. He saw me walking again and I could see the hope in his eyes. He would look at me as if to say, “Well? How would you like to take those new lungs for a spin?”

My comeback was slow and steady, with a leashed Buddy marching me down our old path. We established a new routine to celebrate our return. We would walk a little over a mile until we reached the corner, where I would touch the street sign before turning around to head home. Ritual to the rescue. It kept us moving. We were back walking our old route. And I was beginning to feel human once again.

A few months after we had resumed our daily trek, Buddy started to tell me that he just couldn’t walk as far as he used to. I saw it coming. Something in his gait, his attitude, the way he panted. I had learned his language, and I listened to him tell me he needed to turn around and go home, a little closer to home each day. During the last few weeks of his life he had a hard time walking a few blocks. By the final week, it was difficult for him to wander around our back yard. Then he simply stopped walking, stopped eating, and waited. I had been there. I understood.

But before Buddy stopped walking, he got me walking again. Thanks to his persistence, we had once more begun celebrating each morning as we always had, two small creatures moving through a vast desert landscape that stretched to mountains many miles away in all directions. My lungs were filled once again with the deep breaths of a brisk walk. My muscles were coming back to life. And I was beginning to step through the world much as I used to do.

So, thank you, Buddy, for my speedy recovery, and for helping me get back on my feet. You were a wonderful, uncomplicated celebration of life. You were a Buddy in the truest sense- warm, caring and always there. I hope you enjoyed your days at Terri and Jason’s Kennel and B&B. We sure loved having you. Say hi to Lassie for me, and be sure to leave your comments on Yelp. We will miss you something awful.

 

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PEE-ills (or, The City of Metropillus)

Jason Ohler | real Being

First, please indulge me by watching the 37-second video. I recommend you turn up your sound and go full screen.

PEE-ills. That’s what I call them. It gives them more personality. It keeps me from hating all 322 of them that I have to take every week, though I will always gratefully resent their life-saving intrusion into my life. But pardon my fast-forwarding to personification, which is actually step four in the narrative arc of coming to grips with my new life.

Step one is denial. Which begins with a deep disbelief about Darwin choosing me, of all people, to draw the short straw. Not so much a woe is me, but a why is me. Not whining, just curious. I’m too old to sire offspring, so what’s gained by eliminating me from the gene pool? But Darwin didn’t foresee the many forces that would emerge to counteract nature: the kindness of strangers, an endless stream of miraculous technologies and the many magical feats of the medical menagerie. Now I consume a disproportionate share of health care resources. Getting rid of me would conserve a lot of pills. But Darwin will have to wait.

There are no answers about what caused me to develop the idiopathic pulmonary fibrosis (IPF) that ravaged my lungs. IPF is a total mystery, eluding the best and brightest of the medical research establishment. But I do find it interesting that in a philosophical moment, just prior to my diagnosis, I had remarked to my wife that I had never experienced real pain in my life. I felt guilty about it. And deprived. It had kept me from ever playing a believable blues riff. In the next sentence I told her that my only fear about living an incomplete life was that I would die without ever having ever done anything beautiful. Shortly thereafter I found myself gasping for air and facing extinction, which generated writing and conversation that even I found exquisite. Be careful what you abstract, it may materialize. Intention is all.

Denial spilled over into my post double lung transplant life when I was told I would have to take heavy meds for the rest of my life. If I wanted to live.

Enter PEE-ills. Cooked up by scientists to extend the limitations of our natural biology, they fix so many of the things that ail us, make us uncomfortable, trouble our minds, and alienate us from our own bodies, as well as the outer world within which we move. But I despise pills and I didn’t want to believe I needed them. It’s a control issue. They are so small yet they wield so much power. They seem to whisper, “I dare you not to take me. Don’t forget- I don’t need you, but you need me.” I hate it when pills are right.

My pills fall into two basic categories. pills in bowl with spoon 6922458949_23846ea1c1_zThe first consists of the anti-rejection drugs that suppress my immune system to prevent it from seeing my new lungs as huge splinters that need to be attacked. This says “Come on down!” to the gazillions of germs that swirl around each of us like invisible flies. The other category consists of medication that manages the side effects of the anti-rejection regimen, to keep me from losing bone mass, or developing throat thrush, or spiking my cholesterol. Then I suppose there’s a third, minor category- vitamins, fish oil and other supplements that are actually good for the body.

But the heart and soul of my therapy are pills whose purpose is to undo the pinnacle of the human body’s evolution- our immune system. There’s no question that deliberately suppressing something so precious is a crazy thing to do. But like dying, paying taxes and engaging in relationships, doing so is a necessary insanity that makes life possible. To give my immunosuppressed self a fighting chance, I will have to spend the rest of my life avoiding germs, which has about as much practicality as avoiding air. In reality, this means traveling with a mask which I rarely use, unless I’m in a plane, elevator or  hear someone coughing.

Step two, as I traverse the arc, is passive aggressive acceptance. Anger at my situation made no sense, but neither did accepting my disease and the medication therapy that followed without some sense of indignation. PEE-ills. They are both hero and anti-hero. If nothing else, acceptance consumes less energy than denial.

Step three is ritual. We cling to it as a way to organize our psyches. pill sorter 7687284822_cbd8b6ac07_z brightenedI have a weekly date with my pill sorter. I pull up my med schedule, line up the bottles, and march through the week’s fill order, ceremoniously dropping pills into their proper places with audible plunks: one of these, two of these, one in the morning and at night, this one every other day, this one once a week, until the 300+ pills I take every week have found their homes. Ritual has a calming effect. A belonging to something beyond me, whether I want to belong or not.

Step four is personification. My pills live in hazy orange-bodied, white-capped bottles with labels written in English, Latin and marketingeze. They live in their own wicker tray, and snuggle against each other like cozy bedtime friends.

pills in whicker tray IMG_0831 brightenedI keep them in their own bureau drawer, where I know they will be safe. They have names like Tacrolimus and Prednisone, which have no real meaning, other than to sound official yet approachable. They are so named in order to roll off our tongues and down our throats easily, naturally.

But drug names are cloaks, carefully constructed to hide their contents. No one wants to take C44H69NO12, or something that “…inhibits T-lymphocyte activation… binds to an intracellular protein, FKBP-12 (forming)… A complex of tacrolimus-FKBP-12, calcium, calmodulin, and calcineurin (inhibiting) the phosphatase activity of calcineurin.” Huh? Ahh, but Tacrolimus. Sure, I’ll take that. Sounds like an after dinner mint.

Finally, the arc closes through artification- turning experience into self-expression. In this case it requires resolving the story. Heroes are transformed by overcoming conflict, which transforms them in the process. They emerge challenged, triumphant and reborn. But in my case, I can never fully win. I am more like Sisyphus, rolling pills up a hill all day, only to start all over again the next morning. I can only triumph by refusing to stop. And by making art, however meager. Thus the video. My pills become a city scape, a Metropillus. And, as I hope the video demonstrates, when they are viewed en masse from a slightly altered, poetic perspective, they form a kind of a majestic fortress. Metaphors- where would we be without them? They help us romance the unavoidable, making the future manageable.

One day, we may print new body parts using our own stem cells, Screen Shot 2015-07-17 at 12.24.55 PMmitigating issues of rejection. In much the same way that we don’t bother to understand why a computer malfunctions – instead, we just swap out a component to make the machine whole again – we won’t even bother to understand what causes a disease. We will just print a replacement part.

In the meantime, those of us who survived the mysterious, life strangling grip of IPF – thanks to the pure generosity of strangers whom we will never meet – are consigned to a life of body bashing pills. As well as, so advise our doctors, not playing in the dirt (because of the spores that are released in the process, that can overtake our lungs), and not eating rare steak or sushi (because uncooked meat and sea food provide homes for germs), and not hugging our grandkids too much – ouch! (because children are petri dishes). Small prices to pay to be able to breathe. To walk the dog in the early morning as the sun rises behind the clouds. To hold those close who have loved us so deeply and stood by us during our darkest, most helpless times.

But those immune-destroying PEE-ills. Surely we can pay nature more respect than to destroy one of her greatest achievements. Version 2.0 of dealing with IPF awaits us.

—- CREDITS

Video components. Images are original. Music: Sprach Zarathustra, by Richard Strauss, from the album Movie Classics: Musik Aus Berühmten Filmen. This excerpt is used for satirical and social commentary purposes and is limited to approximately 30 seconds.

Pill sorter photo.  By tr0tt3r, retrieved from https://www.flickr.com/photos/7780925@N04/7687284822, on July 17, 2015. Attribution-ShareAlike 2.0 Generic (CC BY-SA 2.0).

Pills in bowl. By Carsten Schertzer. Retrieved from https://www.flickr.com/photos/jonathanschertzer/6922458949/in/photolist-bxHpSv-qVt7gW-9uP8Hj-9vFzch-5WHHQw-vVyaqm-8PswbH-vMZt98-2oZBu-dP6pzb-dntgBB-t6rAvc-qQ6Yy1-58MNRk-r91mFt-dNZzFp-oTkkT7-9i8QgA-dcTGtJ-pbmFvk-8TrNgf-pf3F2-6NFB1x-4DnK2G-aj4s6D-4e5gDL-dnd4f9-eNAwVT-3bguzZ-8mhovR-eYgTJu-cUNy55-eKGho8-6NFKyZ-ei6szp-egeikK-hSELMz-9KFmbn-keAFt-eahgo1-52g59q-wBrQW-orbXo-4u7WvY-riiY3N-7aEMW6-e1i4Vp-7uWDjf-rqQ2j6-9mUE5s, on July 15, 2015. Attribution 2.0 Generic (CC BY 2.0)

Nature Magazine screenshot, v 50, 7547. I read the guidelines that Nature provides at https://s100.copyright.com/AppDispatchServlet#formTop. I think I followed them, but to be honest, they were vague and I couldn’t tell. Clicking on the picture takes you to the issue of the magazine I reference, where all credits for the article and images appear. The material is used for non-profit purposes as part of a social commentary article. Retrieved from http://www.nature.com/news/the-printed-organs-coming-to-a-body-near-you-1.17320, on July 17, 2015. Tacrolimus quote: http://www.google.com/patents/US8486993. Retrieved July 13, 2015.

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The Gurney Float (or, Health as an Ecosystem)

July 4, 2015 | Jason Ohler

I’m one of the reasons your health care costs so much. Sorry.

I am four months post transplant. I felt fine until my doctors told me I wasn’t.

Back into the hospital I go. I’m levitated by the gurney beneath me as I float through double doors, down hallways, squeezing in and out of elevators.

During my last gurney ride, my chauffeurs were talking among themselves as if I weren’t there. Something about a party that appeared promising. It sounded like fun. (I didn’t wait for an invitation.) This time they were quiet, probably because I was recording my journey (see video, an Andy-Warhol-with-an-iPhone approach to film making, accompanied by some original music). They knew I was committing my journey to posterity, and god knows what we do with our recordings these days. Potentially, they all become a part of our digital tattoos.

My sudden departure from what was beginning to feel like normal life occurred because a bronchoscopy (basically a throat probe using a camera-enabled snake) revealed some infection in my lungs. I was suddenly in the middle of a shoot out.
460px-Bronchoscopy_nci-vol-1950-300 w titleKill the infection now, before it kills me. My immediate thought was, oh god, more hospital food? Thankfully, Terri brought me smoothies.

I shouldn’t be surprised by the ups and downs of life. It is how entropy weaves a good story. Yet, illness always seems like a shock. It helps me to think of health as an ecosystem.

Being healthy becomes the environment that you don’t notice – ground, as McLuhan called it in his figure-ground theory. Illness he would call “figure” – anything that commands your conscious attention. The two comprise a complete ecosystem. The ratio of things we don’t notice to those we do is about a gazillion to one. (Multi-tasking is largely an illusion.) Yet, it is our environment that makes us who we are. It massages us totally, inescapably. It silently leaks into our expectations, building a tacit schema called normal living. We build each others’ environments. Unconsciously we establish each others’ norms and assumptions.

And we assume health. So when illness visits, it becomes “figure” and lets us know that we are defined in part by how we handle the challenges of cellular change. The interweaving of the many systems that comprise our personal ecosystem becomes a dance between figure and ground.

This Fourth of July my independence is in the hands of my doctors. Moments
Sully and Hazel 11202943_552415938691_2615937082461385651_o w title, strokeago they liberated me. The lung cultures are back, and the results suggest that more pills will fix my most current entropic dip and restore the health of my ecosystem. I can go home as soon as the last pouch of clear IV liquid has leaked its magic into my veins. I am free to enjoy an evening of grandkids, barbecue and a night sky aglow with fireworks.

But the doctors assured me that there would be another gurney float in my future. Apparently there is another bit of entropy’s handiwork that needs to be addressed. I’d share the details, but I’m blocking them for now, opting to enjoy the fact that I’m free. And breathing.

—- credits

Video, music: original

Bronchoscopy photo, from Wikipedia, retrieved from https://commons.wikimedia.org/wiki/File:Bronchoscopy_nci-vol-1950-300.jpg, on July 4, 2015. “This image is in the public domain because it contains materials that originally came from the National Institutes of Health.”

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Making the Rounds

Jason Ohler | June 16, 2015

My good friends want to see my scar.

They feel comfortable not hiding their very understandable curiosity. They know it’s going to be huge, and it doesn’t disappoint. It stretches from arm pit to arm pit, riding the contour of my chest like a ski slope. It looks like a huge smile, or a mustache, or a clam shell, from which the medical term “clam shell incision” gets its name. Without any prompting from me, many of my friends have watched a bit of Youtube to familiarize themselves with the lung transplant procedure. Like me, they are traveling byways of human endeavor they never knew existed. Most had never heard of idiopathic pulmonary fibrosis before it bloomed inside my lungs. I know I never had.

My rounds began in Juneau, Alaska, my devotional home, where I have lived for over three decades. I wanted my community to be the first to know that I managed to hang on to life despite the odds.

My trip there was my first plane ride post transplant. My first journey into the clouds. So good to leave the earth. Every time I cut through the gentle blanket of clouds that protects Juneau from the sun, and watch the mosaic of blue, green and white emerge like an apparition amid smoke, I think “I’m home.”

Juneau is my vista, my foreground and background. It’s where the ocean rides the shore, blurring the lines between land forms and waterways that are always in play. Their intermix creates a portal to elsewhere that’s so close I can walk up and step through it. Best not to test that. Not yet, anyway.

I set a long table, served dinner to my friends, and responded as best I could to the questions and the disbelief. I had no idea they could do this – did you? (I suppose, but I had never thought much about it. I didn’t have to.) What hurts? (Lots, just depends on the day.) When did you find out? (That I could either get a transplant or suffocate within my own body? Awhile ago. It took me awhile to believe it. Then it becomes channel view Juneau may 2015 IMG_0066a waiting game. You have to be so sick that the hospital will actually deem you worthy of new lungs.) Does your insurance pay for it? (So far, but any day I expect to receive a registered letter that begins “We regret to inform you that there has been an error in our calculations…”) Do you have take a ton of those immunosuppressant pills? (Yes, except to me the word “pills” now has two syllables – PEE-ills. That way I develop more of a relationship with them.) We read The Long Trek Upstairs about what life was like for you when you were on intense oxygen. Your wife Terri truly is a saint. (More so each day.)

The next round was a family reunion in New Hampshire. Blood relatives were able to confirm the lack of my demise. No wiffle ball game for me this time. Or kayaking. But lots of continuity. Lots of careful hugs so as not to crush my new body parts.

Genes everywhere. And friendships that would exist without them given enough serendipity. Jason Terri Aunt Prisciall reunion 2012 IMG_1837 cropped brightened titledAunt Priscilla, the last remaining member of the great war generation, provided the hub. The rest of us were spokes. As one person said to me, “I’m worried what happens to the world when her generation is gone,” afraid that the great compass would die with it. Every story she told cemented the cracks of a universal foundation. Her storehouse of family facts, seemingly disconnected, formed an invisible web, roots beneath the surface, that held the earth together.

My parents were buried at a cemetery in Jaffrey, New Hampshire, not far from where we held the reunion. The three sons, (Rick, Mike and I) and our families paid homage with flowers, children. As we headed out someone said, “Have fun at the cemetery!” Not a problem. For us, solemnity and celebration mix quite naturally.

Old-style tombstones, crooked, mossed and windblown, rise like blunted spires out of the ground. Some are centuries old. Names and dates are chiseled into the stone in an English shorthand that predates modern dialect.

But our newer, family plots are marked by unpolished rocks, the size of small wagons. Jaffery cemetery IMG_0185They bear gold and black plaques made by machines that identify the more recently departed. We discuss whether sitting on them is okay and decide it is as long as we know who is buried beneath them. Besides, I’m tired. Thanks to all my medication, I usually am. And my parents are happy to have me rest on their bones. Amazing how they continue to support me, wherever I am, they are.

I love how the simplicity of an ancient cemetery cuts through the noise. I go, of course, to sit and think, and remind myself that I will never be half the person either of my parents were. A third would be an accomplishment. I visit their burial grounds in order to re-set my sights and make peace with my failure.

But I also go to find one particular grave stone. It’s the same one I love to visit every time I come. Rick and I check the map on the barn built in the 18oos and manage to locate the plot. It belongs to a woman named Sarah Averill who died on Oct. 16, 1881, at 89 yrs. 5 mos. & 5 days. Her inscription reads “She done the best she could.” Beyond that, what else is there?

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My Three Chairs (or, From Where I sit)

My three chairs wheelchair IMG_0133For about a year, when I wasn’t in bed I was sitting in one of these. Let’s start with the one in the middle.

That’s the dining room chair where I spent so many hours, typing, drilling inward, scanning the web for news of a miracle cure. It’s where I sat and stared through the sliding glass doors,  watching the crows and the hawks glide over the valley just beyond our back yard wall.

Every morning when I awoke I texted Terri so she could crank up my oxygen. I needed the extra O2 in order to be able to make it to the dining room table. The ritual was to walk from the bedroom into the main living area to establish that I was still alive, before we headed back into the bedroom for the morning’s bathroom ablutions. This involved the chair on the left.

It’s made of sharp, blue plastic, and is ideally sized for a five-year old- fitting, given that my needs had devolved into those of a child.

Every morning I would stand at the bathroom sink, lean on the corner, and wash as best I could. After a few seconds I would collapse into the little blue chair, gasping. Terri would calm me until my sensibilities returned. Then I would grip the counter, yank myself up, and wash some more. The once automatic activities of simple living now took forever, and always required help.

This chair doubled as my shower chair. Terri would help me sit inside the glass shower stall, hand me the shower wand, and then leave the door open just enough so as not to pinch the tubing that ran from my nostrils to the oxygen machine. I would slowly wave the wand over my body, wrapping myself in a cocoon of water spray. Eyes closed, I would sit and daydream in the rain. Pre-disease, fantasies were about feeding the world’s poor, achieving global peace – that sort of thing. Now all I dreamt about was breathing again. Selfish, I know.

Back to the dining room chair. The waffly looking thing on the seat is in fact called a waffle ehob-pre-inflated-waffle-cushion-218WCI.jpg-198x198- croppedpillow. It is specially designed to prevent sore butt, a common side effect of having a disease that makes you thin, weak and prone to sitting for long periods of time. God bless the waffle pillow. It was a butt saver.

Then there’s chair #3, the wheel chair. I will never forget the day we received our handicapped parking tag, something I never thought about ever needing. As it dangled from the rear view mirror, I thought, “This is a public declaration of helplessness- I need to beat this disease.”

The contrarian in me didn’t want to use the handicapped privilege until after the transplant, when I didn’t need it anymore. Terri, ever virtuous, would have none of it. “You can walk, so we shouldn’t use this.” In fact, she was just repeating my own litany. I had insisted on not relying on it because it made me weak. But, there was this one time…

We were making the rounds in a vast parking lot looking for an open space. The only spots left were light years away from our destination, except for one lone parking place reserved for the disabled near the front door. It was a hot day. Sun blazing mercilessly. The air was dead quiet, except for the heat waves that rose up like steam from the parking lot. No way I was hiking a blacktop desert if I didn’t have to. In my defense, I was still pretty weak. I was only 6 weeks post transplant. And my sneakers were worn out.

I dangled the handicap sticker in front of her. “This is for all the times I should have used it and didn’t.” Reluctantly, she pulled into the handicapped spot. We slogged thirty feet through the heat until we made it inside where we were overwhelmed by a blast of air conditioning. Aaah, that’s livin’.

‘Here I am showing no respect for the system,’ I thought. ‘I really must be recovering.’

— pics: chairs by me; waffle pillow found at: http://www.quikshipmedical.com/ehob-pre-inflated-waffle-cushion-218wci

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One billion toothbrushes infected with fecal matter? Seriously?

We should all be concerned about this, shouldn’t we? But it’s particularly important to transplantees because we take medication that causes us to be immuno-suppressed (vs. emotionally suppressed, though there may be some of that, too).toothbrush realbeing - 2710180472_5f9cfdec3f_z

Here’s how the post-transplant world works. The natural inclination of your body is to reject someone else’s body parts, to attack them as though they were huge splinters. Your body is just heeding the call of survival as best it knows how. It’s just doing it’s job.

Those who have been fortunate enough to receive the gift of transplanted life live in fear, or at least hyper vigilance, of two things: rejection and infection. They often go hand in hand. An infection can cause a rejection, and vice versa. And apparently every lung transplant recipient experiences rejection at some point to some degree. Some survive better than others. The statistics say I have a 50-50 chance of being alive 5 years post transplant, and a 10% chance of surviving a decade. The diminishing returns are largely due to rejection.

To keep rejection at bay, tranplantees take a host of anti-rejection drugs, steroids which lower their immune systems in order to dampen the body’s desire to reject the new organ. These drugs make us much more vulnerable to other people’s germs. We live on a teeter-totter balanced by battling microbes.

So, when I read about the research study conducted at Quinnipac University in Connecticut that determined that “toothbrushes left in communal loos are discovered to…be containing fecal matter almost 60% of the total time” and that “researchers involved in this study claimed that almost billions of the people could be brushing their teeth contaminated with the poo of other people” – well, I had to warn people. Especially the transplant community.

What can I do? I could sleep with my toothbrush, or try to avoid shared bathrooms. But what I can’t do is live in a bubble. In fact, my doctors encouraged me not to try. After all, I have not come this far just to hide.

Instead I unconsciously began to cultivate obsessive-compulsive disorder skills. I am constantly on the lookout for germs coming my way. I can feel my subtle reprogramming, retraining myself to see everything I do, every interaction, as a threat. I have to. Sneezing babies, shared doorknobs, packed elevators- they are nothing to the healthy. But to me they can be the beginning of the end. And sure, I can wear a mask and gloves wherever I go, just to be safe. But then I’m dressing like Michael Jackson.

And the reality is that masks are anti-social. I find I have to keep explaining that I don’t have a disease, but others might. I think people see me wearing a mask and think ebola. Understandable. That is their frame of reference.

So, if you see me backing away from you or your kid, please don’t take it personally. I used to see you just as a person. I still do, and perhaps one I respect, love and admire. But I also see you as a germ bearing threat. Any transplantee would.

Photo by Martin Howard. http://bit.ly/1Mk8RTu. Attribution 2.0 Generic (CC BY 2.0). Retrieved June 6, 2015.

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Writing your own obituary

Once I realized that no one survived the disease that had chosen me*, (unless they were fortunate enough to receive a lung transplant), I began reading the obituaries. I’m not sure why. I think I was looking for company.

Pillsbury dough boy obituary 10741926465_d210cd3d21_o Senator Diane Feinstein reportedly once said that when it comes to news, the accusation goes on the front page, while the retraction goes next to the obituaries. The meaning here, of course, is that the dirt that can ruin reputations and sell advertising figures prominently in the parts of the paper that everyone reads, while the good news, that someone was actually found to be innocent and cleared of all wrongdoing, gets stuck where no one looks. We don’t celebrate innocence, at least not in adults. It’s too anticlimactic.

Prior to developing IPF, I would have agreed about what we tend to read. But as of the disease, this was reversed for me. The news was no longer my future. The obits were.

And I found myself fascinated by who died at what age. (There is rarely information about how people died. But there’s plenty of floral language about being in a better place, if you are looking for applied Hallmark copy.) It’s amazing how many people die in their 80s and 90s. Most in fact. (My life expectancy a century ago would have been 47. Technology to the rescue.) Then there was a gap – not many died in their 70s. Then it picked up again, with a number of people dying in their 50s and 60s. It seemed that if you didn’t die before your time because of some freak accident or life truncuating disease – heart failure, cancer, election results, IPF – then you were pretty much assured to die of “old age.”

Die of old age? Well, everyone dies of something other than logging too many years on the planet. (Even people who die of a broken heart actually expire from a heart attack.) I think what “dying from old age” really means is that we feel comfortable with people dying in their 80s and 90s. (Beyond the 90s, it begins to feel unnatural.) It seems like they have been treated fairly by life, that after going through all the hassle of being born, having the creativity pummeled out of them in elementary school, having their hearts broken as teenagers (and adults), working at dead end jobs, slogging their way through emotionally draining relationships – you know, life – that they have lived long enough. The rest who died in their 60s? They got cheated.

Once it was announced that I had a disease that could end me, and that had left me sedentary, gasping for air, and afraid that a power outage could kill the oxygen machine that was keeping me alive, friends started to visit me. The look in their eyes said “What a crappy way to go, and at such a young age!” I was 61. Were I 85, the disease, and the way it was destined to take me down, would have been just as awful. But it would have made more sense. To others. It would have created less of a disturbance in the Force.

As I sit inhaling and exhaling with new lungs, I no longer read the obits. They were getting sort of boring. For now I seem to have dodged the IPF bullet. Actually, a rash of bullets. More like an ambush, a drive-by, with ammo blamming all around me.

But that’s this time. What’s next? Could be lung rejection, which happens to many transplant recipients. Could be heart failure. Could be a freak accident with lightening or a runaway bus or choking on an undigestible piece of pizza. Could be old age. But it’ll be something. Dying, once a concept, is now a visceral eventuality. Glad I got a chance to practice.

I also got a chance to practice wondering about my own obituary. If we could convince the copy editor at the newspaper to skip the over-the-top “sleeping with his ancestors” stuff, and let us write our own obituaries, mine might look something like: Let’s put the fun back in funeral. Or: We celebrate the life of someone who celebrated the life of others. More at jasonOhler.com. Or: Been there done that. Please don’t recycle. Or: Please become an organ donor. And tell everyone that you love that you love them. (And what do you say to those you don’t love? Neener neener.)

That’s the challenge, isn’t it? If you had to write your own obituary, what would it say? How honest could you afford to be?

Actually, perhaps more to the poignant point, what would others say? Imagine a committee comprised of family members, co-workers, and ex-significant others converging on a few sentences that describe who you really are. Would you want to read it? Better start being nice to them now. Your headstone could be in their hands.

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* Idiopathic pulmonary fibrosis, which causes a gradual scarring over of the lungs, gradually making it impossible to breathe.

Image: Jim Trotter, Attribution-ShareAlike 2.0 Generic (CC BY-SA 2.0); https://www.flickr.com/photos/jimsphotoworld/10741926465

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