Celebrate your milestones, whatever they are

3 Light the Night walkers with their Survivor t-shirts

We leave on our big vacation in 12 sleeps. When we were first planning this vacation, J. told me her rush of fall weddings would end immediately following Thanksgiving. We could be on the plane already, except I didn’t want to miss the annual leukemia walk. Which would you choose, a trip to Israel or a leukemia walk? Don’t answer that.

This decision to delay the vacation may not make sense to you; I’m a little bewildered by it myself. Going on this annual walk, hanging out with my fellow leukemics, wearing my guest-of-honour SURVIVOR t-shirt, has become a significant event in my year. I’ll try to explain.

My definition of a milestone has changed over my five years with leukemia. After I became so sick, I was proud of being able to walk unassisted and to tie my shoes without falling over. I vividly recall my first post-diagnosis yoga class, which I survived despite falling over a few times. I remember cooking my first real dinner post diagnosis, and seeing my first client. Being alert enough to drive again was another milestone.

As time passes, the goals have shifted. There’s the annual Cancer Centre’s Christmas gift-basket draw, which means I’m alive to lose my money again for a good cause. I don’t hate my birthday anymore, and the importance of cancerversaries is self-explanatory. For whatever reason, this leukemia walk has taken on an odd significance in my annual calendar. It’s my prize for getting leukemia and not dying from it.

This year’s will be all the more special because I will finally receive my 5-year pin. Now you know the real reason I delayed my vacation: I wanted a silly little commemorative pin. Frankly, I could have lied about how many years I’d had the illness and received this pin anytime–no one asks for a doctor’s letter–but I’m too honest for such deception.

This coveted pin is nothing to speak of. It’s the shape and colour of a drop of blood with a 5 on it. The blood-drop symbol is almost identical to that used by Canadian Blood Services. When I wear my pin proudly, people may well assume I am a blood donor (I selfishly only take blood), and not a leukemia survivor.

Does it matter that the pin will have meaning only to me? Of course not. If anyone asks, I can always set them straight. (Ha ha. “Gay person sets unknowing one straight.” And they say we’re out [no pun intended, truly] to convert people!)

When I was first diagnosed with cancer, I never envisioned reaching goals like these. Now, planning for my next milestone keeps me hopeful that leukemia is not going to take my life. No wonder cancer-related goals, however insignificant, have become so important to me.

Then, two days later, J. and I will leave for Israel. Who ever thought I’d get any doctor’s blessing to travel so far? Yet another cause for celebration. That and anticipation of the best hummus and falafel anywhere. I can almost taste it….

A plate of hummus with falafel balls in the middle

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Sometimes it’s best not to keep score

Newspaper on doorstep

First, let’s get the Facebook page out of the way. To those of you who have kindly sent me Friend requests, I am not ignoring you; I am simply paralyzed by my ineptness. I learned the hard way that there is a difference between a Facebook account and a Facebook page, and had to shut my first attempts down. I will get back to you when I manage to sort my page out.

Now a question for those of you who have your paper delivered: did your newspaper arrive at your doorstep this morning? If it did not, I think I can explain. I received it. Ever since I left those stale banana chocolate chip muffins out for Mr. RAK, we have awoken to one or sometimes even two newspapers on our doorstep. I may have to rename Mr. RAK Mr. DAK (as in “Daily Acts of Kindness”) because he has been so generous with us.

You can imagine that I, who am prone to guilt in much lesser circumstances, am overwhelmed with this current situation. This man receives no financial compensation for his generosity toward us, and I genuinely believe he is not trying to encourage us to reinitiate our subscription. My gratitude is killing me.

Of course I keep a mental tally of the give and take in any relationship. If I feel I’m giving too much over time, either I try to address the inequity with the person directly (when I’m in a grown-up mood) or, if I’m feeling more child like, I withdraw from that person. According to my usual tally system, I’m always in the red. Always. So a situation like the one with Mr. DAK, where I’m getting a lot more than I’m giving, torments me.

I am trying to practice allowing someone–in this case, Mr. DAK, to be kind to me. But in order to rebalance things just a bit, as soon as I finish this post, I will be baking a batch of oatmeal cranberry cookies to leave for him tomorrow morning, when he will be dropping by with an extra newspaper for us. I give thanks to you, Mr. DAK.

I was discussing the newspaper situation with a neighbourhood friend who happens to pay for her daily paper delivery. She mentioned that every so often, maybe once a month, her newspaper does not arrive. As she was discussing this with me, she said, “Hey, wait a minute….” We agreed that maybe Mr. DAK, in a Robin-Hoodish manner, is stealing from the subscribers and giving to the nonsubscribers. So if you’re my neighbour and your newspaper doesn’t arrive, feel free to take ours. God knows we haven’t paid for it. Consider it your way of assuaging my guilt.

Happy Thanksgiving. May you all have much to be grateful for this weekend.

 

P.S. I’ve had a few enquiries about this year’s Light the Night Walk for Leukemia on Saturday, October 21. You are more than welcome to join us. The team name is Annie’s Anemic Leukemics, and the registration link is here. If you are interested in celebrating my fifth cancerversary with me, come on out. All the better if you’re an Olympic weightlifter: you can carry me over the finish line if I get too pooped to walk.

Oh the places we’ll go!

Picture of the Western Wall with men praying

Our fall vacation is quickly approaching. We have planned a trip to a far away land, a place we’d talked about going years ago. Then leukemia happened. Leukemia is still happening, but I’m so darn healthy that, in the words of a wise Jewish scholar, “If not now, when?” A self-indulgent vacation is not what he meant; I’m interpreting his words to my own advantage.

There are so many things I, and we, have put off since I got cancer. I ran my old car into the ground before buying a new one. I quit working, only to resume at a leukemic pace. I stopped buying clothes since I didn’t know how long I’d have to wear them. And we’ve travelled with trepidation since I’m utterly uninsurable. Throwing vacation caution to the wind is long overdue, don’t you think?

In late October, we’ll be flying to the Land of Milk and Honey, also now known as the Land of Learned Hematologists. Why all the hematologists? Because we Jews are prone to blood disorders, and who better to study those disorders than Jewish doctors? Were I to get sick while I was there, I’d be in many very good hands. There is some comfort in that.

I lived in Israel my second year of university, but I was so studious that I saw little of the country. Since then, I’ve always wanted to return. Finally I have my chance. J. is not Jewish, but she too loves a freshly fried falafel and a flaky cheese bureka and a fatty sufganiyah. Did you know that in Israel, there are hummuserias that only sell variations on everyone’s favourite ground-chickpea concoction? Somehow I believe the hummus there will taste significantly better than the lame facsimile from the deli. We’ll visit museums and see archaeological sites and maybe even visit a kibbutz while we’re there, but I can’t wait to eat the great food I remember. No wonder Dr. Blood Lite gave us his blessing.

The timing of this vacation involved some negotiation, however. J.’s wedding frenzy ends after Thanksgiving weekend. She wanted to leave promptly thereafter, but I said, “Whoa baby! I can’t skip the annual leukemia walk! How will I get my five-year pin?!”

What event do you anticipate every year? Maybe it’s Christmas with family or the home improvement show or the local jazz festival. I look forward to the annual Light the Night Walk for Leukemia and Lymphoma, which takes place this year on Saturday, October 21. (Save the date.) Not only do I get to commune with like-blooded people, I am surrounded by my own special community of support (that’s you, dear friends).

We are indeed going to Israel, but before we leave, we’re going for a short evening walk. Swanky team costumes (okay, they’re from the dollar store) are available to anyone who’d like to join us. If past years are any indication, hamburgers and hot chocolate will be free, speeches will be moving, and yours truly will provide the baked goods. As in previous years, I will cry many times over the course of the evening. Feel free to join the viewing party.

What’s that you said? They must have named the Wailing Wall after me? I’m not laughing.

My head may be in the sand but I can still hear you

Many people on a beach with their heads in the sand

While everyone else was back-to-school shopping, I was back-to-size-8 shopping. I wanted a few clothes that fit my new body, however temporary, so I scoured every sale rack I could find. I didn’t buy much since this petiter me may be fleeting, but I was tired of looking schlumpy while my body sorted itself out.

No, I haven’t gained all that weight back. Rather, I’ve lost another kilo in recent weeks. No wonder I was nervous about yesterday’s appointment with Dr. Blood Lite. “I have been eating more,” I told him, “but not enough to gain weight.” Although I feared his wrath, he is too kind to be angry.

After discussed my leukemia, which seems to be stable, he asked whether I’d ever reviewed the progression of my liver disease with Dr. Foie Gras. Where did that question come from? I told Dr. BL that, no, Dr. Fois Gras and I had not discussed my liver’s prognosis, but likely because I had never asked.

As much as I want all the information I need about my various ailments, I don’t want it before I need it. I may not ask the questions but I still know what the potential outcomes are. I told Dr. BL, as I’ve told you, my faithful readers, that I can only think of one of my illnesses at a time or my anxiety overwhelms me. Mostly I pretend I only have leukemia and forget about all that other potentially deadly stuff.

For many years, I have been low on my liver doctors’ totem poles; the patients they focus are often in acute liver failure or have more aggressive liver diseases. They need liver transplants or they are dying. I was one of them once, about five years ago to be exact, but I’m not right now. I only think of myself as someone with liver disease when my liver is malfunctioning. I know what a failing liver looks like, but I choose not to ask for details.

I see Dr. Fois Gras every six months or so, he takes a closer look inside me once a year, and he reviews my blood work quarterly. My blood test results have never garnered a telephone call from his office. No news is supposed to be good news, right?

Usually my denially approach works, but it failed last night between 12:30 and 3:30 a.m. when I stared at my ceiling, listening to both J. and the dog snoring, and wondered if something was terribly wrong with my body and no one was telling me. Maybe Dr. BL was afraid to share his concerns after I’d put on my blinders in front of him. Or maybe he was being thorough since he didn’t know me all that well. It must be the latter.

If he were that concerned, he would have told us to cancel a trip we’ve planned, but he didn’t. He encouraged us to go even though it’s very far away. He even mentioned that our destination country is known for many well-respected hematologists.

You might wonder where we’re going, but that will have to wait for another post. First, I need a good nap.

 

 

My recipe for the perfect nap

Woman napping on couch under blanket

Last week we went on the perfect cancerversary trip. I didn’t have to do anything but show up, we made use of every vacation minute to the fullest, we saw lots, ate well, and even had a beer on the patio (maybe that was J., but I enjoyed my teetotaller’s lemonade). Our frenetic pace unfortunately brought me back to leukemia reality: I have been napping daily since I got home.

I’ve had many years of practice now, and, not meaning to brag, I have an honorary Ph.D. in napping. In the past, I would often lay down, only to toss and turn and drag myself up a while later, not having slept but more tired and more frustrated than before. I can nap almost anytime, almost anywhere, and even if I know I only have a brief reprieve before I must again be up and at ’em. Despite my expertise, I do have several preconditions that bring my likelihood of napping success close to 100%.

The first necessity is absolute utter exhaustion. I have become a good judge of how tired I am at any particular time, even if I can’t rate my exhaustion on a 1-10 scale. If I can barely keep my eyes open, if one or more people tell me I look like a truck has run me over, if I can’t stop myself from yawning, I know I will fall asleep as soon as I allow myself to lay down.

Second, I need a very comfortable couch. It doesn’t have to be my couch, which is handy because it allows for some flexibility of napping location. (Warning: If you happen to have a comfortable couch, you may find me curled up on it when you least expect it.) “Why not a bed?” you ask. I can’t really explain that, except to confess I’m more likely to nap for too long if I allow myself the comfort of a pillow-top mattress.

Third, I need a blanket of some kind. If I am chilled, I will never be able to sleep. I need to be warm and cozy.

And last, I need background noise of some kind, preferably in the form of a trashy television show. Border Security was my show of choice for years, but being able to recite every oft-repeated episode by heart necessitated a change.

I have recently found a suitable substitute in Say Yes to the Dress. On this show, assuming you have never wasted your precious time watching (my time is far from precious), brides-to-be drag an entourage of family and friends to a fancy wedding dress store to choose their gown for their special day. There’s nothing like a roomful of people in utter disagreement about what a bride should wear. I’ve seen tears and anger and, sadly, meanness, and many brides leave without saying yes to a dress.

I have learned so much from this show, when I’ve been able to stay awake. Among other things, it has prepared me for a very special wedding I will be attending this evening. I’ll give you the complete rundown on Friday. Now I must nap, so I can be in good form for the celebration. I am so excited!!

What kind of survivor are you?

TV Survivor logo

Is today really my 5th Cancerversary? I know, I can’t believe it myself. 5 years ago today I found out I had cancer, then I almost died, but I didn’t. I’m alive, I’m alive, still!

Come to think of it, is today the actual date? It depends on how you define the term. Should I make it the day that the astute on-call hematologist told me she thought I had CML, or her confirmation later that week with results of a bone-marrow biopsy? I’ve chosen the latter as the date of note. By the date CML was confirmed, I had overcome my overwhelming denial and was ready to accept the reality.

I wish I could be celebrating, like many others do, the date that cancer was eradicated from my body, whether through surgery and/or radiation and/or chemotherapy, but I don’t have that kind of cancer. I am celebrating 5 years of living with (or should I say, “not dying from”) cancer, which is a whole lot better than the alternative. With the wisdom and guidance of my stellar medical team, I am still here. Sure, I’d prefer to be rid of my leukemia altogether, but that’s not the CML way. Technically I may be in a remission of sorts, but I am not cured and, as far as I know, I never will be.

Five whole years of leukemia and I’m not dead yet. It begs the question, have I been pulling your leg all these years? Do I really have cancer? Yes, the doctors tell me I do. Remember, I am not a writer of fiction.

This is how I know I still have cancer: I hang out with other cancerous folks every 6 weeks of late. This more frequent cancer-centre visit schedule reflects both Dr. Blood and Dr. Blood Lite’s concerns about my goutiness and my weight loss. I trust I will be on a less frequent cancer-reminder schedule sometime soon.

Have I convinced you that I do have cancer, even though it’s not killing me, or at least not yet? Whatever, I believe strongly that a milestone like this should be celebrated. It’s an accomplishment of sorts, even if I didn’t make it happen.

J. asked me how I wanted to celebrate the day and, after giving me approximately 30 seconds to deliberate, she booked us a quick trip away. And today, when I have coffee with a few dear friends I don’t see often enough, I may order a small hot chocolate, but only to get my doctors off my back. Or maybe I won’t. I’m lactose intolerant.

I also celebrated by wearing my leukemia shirt to the gym. It subtly screams SURVIVOR on the back. A fellow yogi with whom I’ve exchanged pleasantries in the past asked me what kind of survivor I am, so I told her with undeserved pride. I think she was disappointed that I had not won that Survivor television show. Imagine me on a desert island fighting for my life. What if there’s no pharmacy? No blood lab? I’d be sunk.

Tonight I’ll be raising a glass of fizzy fruity soda from a fake champagne bottle. Don’t let that stop you from imbibing something stronger or, alternatively, eating cake. Together let’s toast 5 years of still living. L’chaim!

Introducing Dr. Blood Lite

This one’s for you, Janet.

You may wonder who this Dr. Blood Lite is, and how I named him without consulting you first, my dear readers. This time I didn’t need your help, thanks to a comment on a previous doctor-naming post. In that comment, a beloved beer connoisseur, who would never imbibe the beer of the masses, came up with this perfect name.

If you haven’t yet put one and one together, Dr. Blood Lite is Dr. Blood’s locum for her sabbatical. He is a lovely young doctor and, since he’s been trained by Dr. Blood, I know he’s learned from the best. Dr. Blood had told us she had considered her replacement carefully, and she hit the jackpot. Dr. B.L. seems calm and kind and he even introduced himself using his first name. You know how I like to be on a first-name basis with my physicians. It gives me a false sense of collegiality.

Although I did not recognize the newbie, we had met once before when I was an inpatient on the hospital’s palliative unit. Do you recall that hospital stay, the one where the hematology unit was full so I ended up lodging with the dying people? I could not remember him but J. clearly recalled Dr. B.L.’s Edmonton Oilers lanyard. In fact, I envision her hijacking my future appointments to talk about McJesus. That Dr. B.L. could remember our brief encounter is a miracle on par with McJesus’s MVP performance last year.

Back to my health for a moment. Dr. B.L. told me that, if my blood work is to be believed, I am holding steady on all fronts. This is good news. There are no significant changes since last visit, which means I will stay on my current treatment plan.

My blood work did not explain my appetite loss, which was a relief. I had pretended I wasn’t worried about my disinterest in food, but I was lying, as you probably suspected. I may have a perfectly reasonable medication-related explanation for the pounds melting off me, but as a graduate of the School of Something Could Always Be Seriously Wrong, I’ve still wondered whether my liver might be tanking. As of today, I worry no more. My liver is a-okay.

Despite my apparent well-being, Dr. B.L. was alarmed by my rapid weight loss. So alarmed, in fact, that he said something that no doctor has ever said to me before: he told me to start eating more. He forbid me from losing any more weight and said he expects me to pack on a few pounds by the next time I see him. He even suggested ways I might increase my caloric intake.

My inside voice could not help but giggle in response to Dr. B.L.’s concern. I wanted to say, “Do you realize who you are talking to? I am a glutton! Cookie Monster is my doppelganger. Or is it Miss Piggy? Whatever, you’ve got me all wrong, doc.” Instead, I listened respectfully and told the doctor I would take his concerns under advisement. Yes, I used those words. And he smiled, just a little. I think we’re going to get along.

Now I must force feed myself some dinner. Doctor’s orders.

arm reaching table full of appetizers

With age comes wisdom, sometimes

Basset hound running behind greyhoundI am slowly coming to accept that I am not the young buckette (is that doe?) I once was. I had a crash course in recognizing my limitations when I got sick. Now I know that I won’t run any more marathons, climb any more mountains, or participate in any more aerobics classes that will cause me to break a sweat.

But every so often I forget. Occasionally I try to run a little bit and my body quickly reminds me to stop. I seem to be the last person leaving every yoga class I attend–I roll my mat and collect my things at a snail’s pace. Everything takes longer than it used to when I was youthful. I moved with vigour once, but now I’m slow as molasses. In fact, recently I gave up rushing altogether, and I must say I don’t miss it.

I’m not the only one who is aging. Jelly turned 7 last month, which means she is now  a doggy senior. Although she looked like a puppy until a year or two ago–even dogs want to believe they look younger than they are–even her little red eyelashes are now turning grey. I’ve noticed she’s never been asked for identification for a senior’s discount.

There are other signs of Jelly’s advancing age: she is more likely to amble than gambol when we visit the park. Still, we go there so she can venture as far as she wants that day and visiting with her four-legged friends. I do miss the days when she’d chase her peers over hill and dale, barking frantically as she brought up the rear, “Wait for me! Wait for me!”

Except for last Friday morning, when Jelly temporarily forgot that she too is no young buckette anymore. She met up with Kona, a lovely tall greyhound cross, who seemed intent on a running mate. Kona egged Jelly on persistently, resulting in an all-out no-holds-barred chase around the park. Kona was born to run. She easily outpaced Jelly, who persevered nonetheless, cutting the odd corner when she needed to. Jelly fought the good fight, until she tanked, whereupon she slowly limped back to the car.

I knew exactly how Jelly would feel following that romp. I knew she would regret running herself ragged, but there was no way I could convince her to pass on the opportunity. We all need to learn from experience. Has anyone ever heeded the wisdom of elders?

I was not surprised that Jelly spent most of the weekend recuperating. Will her stiffness stop her from trying to outrace the next greyhound that wants to be chased? Probably not. She’s a dog, and she does not always learn from experience. Come to think of it, neither do I.

But all is not lost. Despite Jelly’s recent stiffness and fatigue, every time the wind blows, she rises from lounging and leaps off the deck, positioning herself under the apple tree in case a delicious snack happens to fall. Each time, I drag myself agedly out of my chair, thereby granting Jelly ample time to wolf down her spoils. Jelly’s body may be old, but, at least when it comes to food, her mind is forever young.

Volunteering by proxy

Calgary Stampede midway crowded with people

That’s me in the top right corner.

I must apologize for not writing yesterday, especially since I know how you hang on my every word. I spent the day carousing at the Stampede grounds. Just kidding. I’d rather sleep than watch adults young and old embarrassing themselves in public.

Stampede is a time for reckless alcohol overconsumption. With that comes an increase in philandering, and of course, STIs and unwanted pregnancies, despite the local campaign to “put a condom on your cowboy.” Not surprisingly, divorces spike following the week-long party. Stampeding sounds too risky to me, so I hunker down at home instead.

J., on the other hand, plans two visits to the grounds with our good friend, Triple D. They will be there from supper time until midnight both nights, but they won’t have time for drinking or philandering; they’ll be selling lottery tickets for fancy cars. They are volunteering for this task in support of PALS. J. noticed that PALS was seeking people for this fundraising event, and not only did she volunteer for two long shifts, she signed up Triple D, who is known for always making time for a good deed.

When I became a PAL, I learned that, in addition to our regularly scheduled visits, I’d be expected to support the organization in other ways. This included, for example, interviewing new recruits, helping out on the multi-station dog-assessment day, or attending fundraising events with or without my little pal in tow.

Most of these activities involve longer hours than I have the stamina for, so I pass. I do my part by volunteering for one-time visits–last week’s parade is a recent example, although that day felt more like a gift than an obligation–on top of our regularly scheduled visits with the old folks.

The same is true for Calgary Blood Services. I can’t donate blood, so I feed soup and cookies to those who can, and try to encourage healthy others to donate in my stead. I’m grateful to J. for persisting in giving despite her fainting after her second blood donation, and to my dear friend known affectionately as Spongebob (for reasons that will remain a mystery to you) who donated for the first time last month with no ill effects. Anticipating the milkshake he’d be buying on his way home probably helped him through the itty bitty pin prick.

Maybe I shouldn’t say that I pass on the volunteer duties I can’t fulfill since the truth is that I pass them on to gracious and willing others wherever I can. I wish I could volunteer myself, but I know my limits. A 6-hour sales shift ending at midnight–assuming I did not sleep through the chaos like Jelly did at that parade–would knock me out for days. I also know that the screening interviewers at Canadian Blood Services would laugh at me if I tried to donate blood despite my leukemia. I know what my limits are, and that there are some things I can’t do, however much I wish I could.

Kudos to those folks, J. et al., who donate their time or their gift of life (blood, that is) in my stead. Their generosity makes my heart sing, and I’m not the heart-singing type.

My 500th blog post, and I am speechless.

What makes this occasion momentous? My having published 500 excessively wordy posts? Or your kindly read 500 instalments of my mind’s random meanderings? I give you a lot more credit for your persistence than I give myself. My job takes will and dedication, yes, but yours takes endurance. By now, you must feel like you’ve run one of those ultra marathons in the desert.

You’ve persisted despite never knowing what’s going to arrive in your inbox. Occasionally Sadness makes an appearance, or I seek a silver lining in some crummy situation. Too often I drag you through the mundane details of my latest medical trials and tribulations for 500 words (x2 or 3 or 10). I drone on and on. But you’ve endured. You deserve credit for that.

You likely thought the time commitment I’ve demanded would be freed up by now. So did I. Plus my memory is so poor that I’m surely repeating myself more than I realize. “Oh, not that joke again,” I hear you muttering. Or, like J., you might be moaning, “Not that dead horse (or painful finger) again.”

Please know, dear readers, that I’m okay with your calling it a day. I’ll keep writing whether you continue to read my ceaseless drivel or not. Writing helps me to work through what is happening in my life. Through my writing, I gain perspective on the absurdity of living with an illness that is incurable, but, to this point, not deadly. Sometimes I find that I’m less scared of my leukemia when I write about it here. That’s why I keep at it.

And so, early this morning, imagine my panic when I was locked out of my blog for the very first time. I wanted to write this post, but I could not access the blogging site. What an opportunity I was granted to remind you, for the 45th time, that not all anxiety is bad. Sometimes people become anxious because they are facing a genuine threat. If you were face to face with a tiger that had escaped its cage at the zoo, even you, brave one, would likely find yourself anxious, and your anxiety would be well founded. And so, this morning, I was paralyzed, with reason I believe, by the thought of losing all the hours I’d devoted to my magnum opus.

But within seconds, I envisioned the worst possible scenario, as is my anxious nature. Had I been hacked? Had I lost my blog forever? What kind of idiot doesn’t back up her life’s work? A few hours and a downloaded malwear program later, I learned my computer was fine. And then, magically, I could log in to my blog again. From what I could tell, everything was intact. Most likely the blogging program was down when I’d tried to visit earlier.

So my blog was saved, but my idiocy is still problematic. And so, in honour of this 500th post, may I remind you to back up your work. You’d hate to lose everything you’ve worked so hard on forever and know you could have prevented the disaster. Now I must learn how to back up my blog. Better late than too late, I say.

Man clutching head on down on computer keyboard