No need to panic. We’ve got time.

Man's hand holding stopwatch

You must be dreading my posts lately. How long can I focus on my mortality without a break? I promise you a reprieve from all this seriousness come Friday, but today is only Wednesday. Please understand it’s taking me some time to process the news of my impending demise.

I hadn’t considered how overwhelming sharing this bad health news would be. There have been so many people to tell, and I’m only just beginning. Beware those acquaintances who ask me how I am. They live to regret it.

I find it hard not to cry when I tell my story, yet I try to hold it together for others’ sakes. It’s ridiculous for me to try to shield other people from my distress, but that’s me. As a helper, not a hurter, the last thing I want to do is to cause another person pain. Still, I’m upsetting others wherever I turn, and I can’t do anything to soften the blow. That pain may only escalate as my health deteriorates.

I’ve shed many tears over the outpouring of love and support we’ve received. People near and far are reaching out, eager to help in whatever way they can. I shouldn’t be surprised by these loving responses to my news because we are surrounded by mensches.

Dealing with death is not new to me, although I’m the one dying this time. I’ve experienced that urgency to tell the dying person how much our relationship has meant to me before I lose the opportunity. When the person has died suddenly or unexpectedly, I haven’t always had that chance. In those cases, I could only hope the person knew how I felt, and that I’d found ways to express my affection during our times together.

As the one whose health is failing, my perspective on telling the dying person how I feel has shifted. Since I’ve gotten my news, as much as I appreciate others’ warmth toward me, I’ve been fixated on what I need to say before I die. Would I have the opportunity to tell my people how much they’ve meant to me? If I didn’t get to everyone before I died, would they know?

Why do we wait until death looms to tell others how we feel about them? It would make more sense to affirm our relationships along the way so we didn’t feel the pressure to connect once time got tight. Since I was diagnosed with leukemia several years ago, I’ve tried to share my feelings for others freely out of fear I wouldn’t have the chance later. Maybe you think it’s weird that I tell you I love you before I hang up the phone, or that I close my letters with so many Xs and Os. Think I’m weird if you must, but I’ll hope you’ve gotten the message nonetheless.

Now that this news is sinking in, I’ve realized there’s no need to rush. My death is nearing but not imminent. For all I know, the clock on my final year hasn’t started ticking yet. We’ll have time to say what we need to say to one another. If we don’t, I’ll still know how you felt. I think you’ll know how I felt too.

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When you say nothing at all

As you can imagine, it’s been an exhausting week. Having to share my bad news with people has been difficult. I’ve tried to provide some information in my blog so I don’t have to answer too many questions. Repeating the same story ad nauseum is exhausting at the best of times, let alone the worst of times.

I’ve had a variety of responses to the news. The large majority have been comforting and helpful, especially since it’s so hard to know what to say. Talking to me about my dire prognosis can’t be easy. Some days even I’d rather talk about the weather, but I can’t seem to focus on the weather right now.

You can stop worrying that you’ll make things worse if you bring up the topic of my death. I can assure you that you will not. You can’t possibly make me feel worse than I do right now, whatever you say. Okay, maybe you could. Even if you’re thinking these things, please don’t tell me I brought my death on myself by eating too many Jelly Bellies, or that I’d have been spared had I had only found God. I trust you won’t blame me for my predicament because we both know that my deadly genetic mutations are not my fault.

Are you worried you’ll start crying if we talk about my future? Worry not, dear friend. Cry your heart out. What a better way to show me that you care, that my life has had some meaning to you, and that maybe you’ll even miss me when I’m gone? In the depths of my despair, I worry that no one will miss me at all; that, in fact, the universe will heave a huge sigh of relief. Your tears could convince me otherwise.

You may feel a need to cheer me up. If so, give that one up. There’s not much that anyone can say to soften this blow. You can’t take my fear for the future away, however much you might want to. What you can do is to be there to support me for the duration.

On that note, please don’t ask J. how I’m doing; I’d rather you ask me directly. I’m fully capable of answering even the hard questions. If you want to ask J. anything, ask her how she is doing since she’s got quite the burden on her right now. She could certainly use your support, now and in the future, since she’s the one who’s going to be left behind.

Thanks for acknowledging what I’m going through in whatever way you can. The elephant is in the room, and it will be here with me for the duration. If you pretend none of this is happening, I’m going to feel terribly lonely, and I know you wouldn’t want that for me.

Talking about death is scary. I wish my dying didn’t force you to face your own mortality, but maybe it’s for the best. You’d hate to be caught by surprise like I was.

Once we’ve got the heavy stuff out of the way, let’s do lunch. I’ll choose the restaurant. There are so many places I want to try before…well, you know.

Indian feast--butter chicken and naan on table at restaurant

 

Living while I’m dying

That last post was not easy to write. I don’t like having bad news, nor sharing it. Who wants to read a story with such a sad ending? It turns out many people do. Thankfully, only a few of those people LIKED my post.

The reality of my health challenges has not yet hit. I may have suspected bad news was coming, yet that suspicion didn’t temper my surprise. Shock is a common response to learning of a terminal illness. Grief is funny that way. I’ve worried about dying for as long as I’ve been sick, but having to face my own demise head on? That’s another matter altogether.

Now that I have the results of my biopsy, I feel unexpected periods of calm, as if I’m walking around in a fog. Every so often my panic erupts, but I shove it away quickly. Thank goodness for my defences, which help me from falling to pieces at times like this.

I even feel some relief at the news, as weird as that sounds. I don’t want to die, of course, but the threat of death hanging over me for so many years has been wearying. I’ve spent 18 years containing my anxiety about a situation I have no control over. If only I could sustain this relief.

How can my emotions be so chaotic? I think it’s because my body doesn’t feel any different today than it felt yesterday. I know that my health is declining–my biopsy results confirmed that–but my body has not registered these changes. I’m not in hospital, and I’m still able to go about my day. How do I accept that my life may be ending when I don’t feel all that sick?

When I am faced with a crisis, I often get stuck. I can help other people manage their stresses–that’s what a psychologist does–because the solution is always easier to see from the outside. But I’m on the inside this time, and I can’t seem to find my way out. Not worrying about dying is far easier said than done.

I was telling a friend how distressed I’ve been, and she wisely reminded me that focussing on death while I’m still physically well is a waste of precious time. She suggested I might as well keep living for as long as I can. J. has been saying the same for years whenever my anxiety about my health has escalated. My life overfloweth with very wise people. I should listen to them more often.

This afternoon, I had the perfect opportunity to stop feeling sorry for myself while Jelly and I attended a PALS visit at the university. The stressed students needed comforting. Jelly’s howls echoed through the hallways as we approached the visiting room. Once we arrived, Jelly kissed and cuddled dog-loving students for 90 minutes, in between naps. For those 90 minutes, I put my worries aside and remembered that I’m not dead yet.

If you catch me moping over the next while, please tell me to snap out of it. Sometimes an outsider’s wise perspective is all I need.

Several hands petting Jelly as she lays on the floor, head raised

This psychologist’s theories of fostering close relationships

Quote: Strangers are just friends waiting to happen. Rod McKuen

You may have thought I was finished talking about last Thursday’s fiasco, but of course I’m not. I spent the weekend reviewing what happened and how I resolved the situation. I’ve decided that, except for driving into a parking lot knee deep in slush, I would not change anything else. This conclusion has nothing to do with getting home in time for my client, nor sparing myself the cost of a tow truck.

I relied on three people that day, two of whom I have an established relationship with, and a third who is a friendly acquaintance. All came through with flying colours. I told them what I needed and they graciously jumped at the chance to help. Shouldn’t that be the way the world works?

I frankly expected Drs. Basset to help me if they could. Our friendship is well established and built on give and take, as is any good relationship. When I first got sick, I realized how extensive our incredible community of support is.

I don’t know Ms. Good Neighbour nearly as well as Drs. Basset. She’s told me her name before but it took last Thursday’s encounter for me to commit it to memory. I’ve never seen her outside the park (that’s often the way with these relationships) but I know she lives in the neighbourhood. She happened to be there when I needed help, and I sensed that she would come through. I asked, and she graciously took 20 or so minutes out of her day to do what she could.

While Ms. Good Neighbour was accepting my thanks (I believe I only thanked her 7 or 8 times over that 20 minutes), she wisely said, likely to shut me up, “If I were in your situation, wouldn’t you do the same for me?” Of course I would, and I have when asked, and sometimes even without asking. Easing another person’s load makes me feel needed, useful, trusted, even happy.

You all know that I’m not the sort to rely on others; in fact, I abhor having to do so. Leukemia has been an excellent teacher here, rendering me without a choice some days. Leukemia had nothing to do with last week’s incident, however, unless the illness has unknowingly interfered with my problem solving. (That’s a distinct possibility.) Let’s say there was a carryover effect from the needy person leukemia has made me some days: I needed help on Thursday because I did something stupid, so I asked for it.

If someone is needy all the time, that person may burn out the people around her. Recall the energy vampire described in an earlier post. But I believe it is possible to be needy on occasion without breeding resentment and friendship fatigue. According to my newly developed theory of human relationships, Neediness + Reciprocity = True Friendship.

I haven’t been back to the park since that day–I’m a little car shy–but when I do, I’m hoping I’ll bump into Ms. Good Neighbour. Now that I know her name, this friendship may take off, especially once she tastes my baked goods.

Which leads to my second theory of human relationships: Appreciation x Unsolicited Baked Goods = Undying Devotion. You know it’s true.

The things Dutch people say

Small car in deep snow

Yesterday, J. headed out on a day-long field trip, leaving Jelly and me to get into trouble on our own. And so we did.

Soon after J.’s departure, Jelly and I drove to the park to see our friends. Do you know that experience of realizing, as you’re doing something, that you’ve made a terrible mistake? An impulsive expensive purchase you know you’ll need to return, or an order of pasta when you know you’d prefer the burger and fries? Imagine how I felt when I parked in our usual parking lot at the off-leash area, which is down a small slope. I immediately questioned whether my car would get stuck in the deep slush when I tried to leave.

The answer to this question could wait. First, we were there to walk. Jelly had a great romp with her buddies, and I couldn’t delay our return to the car any longer. A client would be at my office within the hour, so I had to leave.

I could tell you that hindsight is 20/20 vision. My Dutch friends have a better way of expressing this sentiment. “Afterward, it is easier to look the cow in the ass.” Had I only noticed the cow, I would have not risked entering that parking lot.

Somehow missed the cow. In my attempts to drive out, I circled and circled and circled the lot, my tires unable to grip anything through the slush. A kind woman I walk with occasionally, Ms. Good Neighbour, took the wheel and gave up in no time. I parked my car in the lot again and Ms. Good Neighbour drove Jelly and me home in time for my client. I’d deal with my predicament later in the day.

Following my client, I contacted my friends, Drs. Basset, who happened to be on staycation this week. Faster than a speeding bullet, they jumped into action, driving me back to the park. One friend got behind the wheel while I pushed the car with the other. Let’s be honest: if it were between me and another person to push a car, I’d choose anyone over me anytime. Anyone over 12, at least. I am a self-proclaimed weakling. For the final stretch, I got behind the wheel while my very strong friends pushed. Thanks to their brute strength, my car was back on the road in no time.

When I first contacted them, my friends could have refused to help, telling me I’d have to get myself out of my own mess. In a situation like this, the Dutch say, “When you burn your butt, you need to sit on the blisters.” That’s a bit harsh, don’t you think? Still, I can’t disagree.

All’s well that ends well for me. I have promised Drs. Basset my best Dutch baked goods in thanks. Upon their first bite, I’m expecting they’ll say, “It’s like an angel is peeing on my tongue.” A true Dutch compliment couched in divine urine. I won’t forget Ms. Good Neighbour. as well Hopefully she won’t liken my baking to the taste of peeing angels, unless she too is Dutch, in which case I’ll take it as a compliment.

 

A story without a fairy tale ending

Cover of Hunger by Roxane Gay

As the year nears its end, I become excited about the publication of the Top 100 book lists. One book on every list I’ve seen is Hunger: A memoir of my body by Roxane Gay. When I am a grown-up writer, I want to be Roxane Gay. (Sorry Gabrielle Zevin, you’ve been usurped for now. I still love The Storied Life of A.J. Fikry, though.) If you’re interested in reading Hunger, know that it’s not an easy book to get through. The author bares all in her writing.

I hadn’t known of her previously, but Roxane Gay is a respected author of both fiction and nonfiction. She is also morbidly obese in what she justly calls a fat-phobic society. She was gang raped at age 12, after which she gained weight to keep herself physically and sexually safe from others. Dr. Gay views herself as a victim rather than a survivor of her rape, and acknowledges she has not healed from the trauma. She suggests people stop judging the obese without knowing their story, and realize that fat [her word] people have other attributes too.

Dr. Gay, who has a Ph.D. in technical writing and is currently a professor at Purdue University, acknowledges years of self-loathing, challenged relationships, and discomfort in her own body. Her frankness about her life is both uncomfortable and enlightening. She described the profound effects of an emotionally abusive relationship in a way that still haunts me.

She speaks of the all-too-frequent judgement and the difficult situations that she experiences. Strangers censure what she places in her grocery cart and deride her as she walks down the street. Well-meaning friends patronize her by sharing their insights about food, nutrition, and weight loss. Professional colleagues cannot hide their surprise when, after corresponding on line, they first encounter her in her physical glory. Imagine realizing you’ve been provided a chair for a reading that will not comfortably support your body, and worrying the whole time that that chair could break.

This book helped me to imagine what being obese would feel like in a society where thinness equals beauty. Is anyone truly above judging people based on their outward appearances? I know I’m not.

Near the end of the book, Dr. Gay described an ankle break that resulted in a hospital stay, and her community of support’s unexpected rallying around her. Despite all her self-loathing, she realized how many people love her and would miss her if something were to happen to her. I was reminded of how moved I was by my own troops’ tremendous support of both me and J. when I was deathly ill in the ICU. I also recall how much I appreciated the teary hugs I received when I was finally sent home. I too felt that I would have been missed had I not survived.

I can’t say reading this book will be fun, but you too could scratch an insightful read off your Top 100 list. Like me, you may find that Dr. Gay’s insights stay with you. When I’m next on an airplane and the fattest person walking down the aisle takes the seat next to me, I’ll think about this book, and I’ll make as much room as I can. Do unto others and all….

 

What I learned on vacation (other than what Grover taught me)

J. and I were reviewing our trip over our last dinner in Israel. For the first time that we could both remember, we were glad we’d stayed as long as we did. In the past, we’ve often been antsy to get home as a trip nears its end.

As we were chatting, J. asked me what my favourite part of the trip was. I could not think of one moment because there were so many. Over our two weeks, we saw so many fascinating sights, experienced so many different cultures, and met so many kind people.

On our last day in Jerusalem, I insisted we walk above the city on the Old City walls so we could see the hubbub from a different vantage point. Off we went, up and down stairs, along meandering pathways of uneven stone, past one exit and onto the second, at which point we’d have to return to solid ground. It wasn’t an easy stroll but I was up to the challenge.

Shortly after the first gate, we were greeted by two Israeli police officers watching over the area below, ensuring everyone’s safety. Although we were walking in what is normally a safe zone, there had been some unrest in the Middle East since our arrival in Israel and security was high in Jerusalem. The sight of the officers made me wonder whether we should proceed, but the officers were fairly relaxed. One was busy texting while the other was using a kerosene stove to boil water for coffee. “Oh, you have coffee!” we said, and Mr. Barista immediately offered us some. We declined with thanks, and off we traipsed.

Within a few minutes, I tanked (that happens sometimes) so we turned back to the previous exit, again passing by the officers. By now their water had boiled, Mr. Barista had finished brewing his coffee, and he was holding his cup in hand. So I said, “We were just coming back for coffee.” (They didn’t need to know that I am a coffee teetotaller.) The officer held his freshly brewed cup out to me and encouraged me to take it. He was serious.

I declined Mr. Barista’s kind offer, thanked him, and off we went. The overture was genuine. In retrospect, I now wish we’d stopped and chatted with these fellows for a few minutes. They were obviously grateful for the company in their isolated post.

We witnessed kind gestures like this every day we were in Israel. Soldiers not only protect the country; they help elderly people cross busy streets and interact warmly with children. People were patient and helpful when I tried to communicate in my broken Hebrew. On a crowded bus, younger people stand to make way for the elderly or others in need. And if a police officer happens to have freshly brewed coffee while he stands watch above the Old City, he’ll offer it to you, expecting nothing in return. Perhaps that pervasive attitude of caring for others was the highlight of my trip.

Making turkish coffee over a kerosene stove

Introducing the emotional hangover

Have I ever defined the post-Bar Mitzvah (Bat Mitzvah, in my case) blues? When someone gears up for something for so long, and it’s fantastic, but then it’s over? That’s what today feels like for me.

After months of anticipating yesterday’s Light the Night Walk in downtown Calgary on a beautiful fall evening, it’s over. My special support team walked the full five kilometres with me–a kilometre for every year–to celebrate my enduring good health. The evening was perfect.

I’ve described the walk before but allow me a medically inaccurate and absurd analogy. Imagine each walker as a blood cell. There are the white blood cells, the largest in size but fewest in number. Those are the leukemia (and other bloody disordered) survivors holding our little white lanterns. Then there are the red blood cells, which are smaller but more plentiful than the white cells. The red-lanterners are those walking in support of the white lanterners.

Platelets are small fragments of blood cells. They are represented by the gold lantern holders, who are survivors in their own way, walking in memory of someone who has died. They may feel they’ve lost a part of themselves.

Finally, let’s not forget the plasma, which carries nutrients, hormones, and proteins through the body. Consider the plasma all the amazing volunteers who registered all the walkers, distributed t-shirts and lanterns and coffee and hotdogs, and lined the pathway cheering us on.

We of many lanterns walked along a narrow pathway, clustered together but hopefully not clotting. We white lanterns were surrounded by our devoted red-lanterned supporters. One group followed after another, each its own community of red-lanterened support for one little white lantern. The gold-lanterned folks formed their own groups or were sprinkled amongst the whites and reds (we had two golds on our team) because blood disorders touch too many people. Along this narrow pathway–an artery? a vein?–walked all these blood cells, supporting one another, guided by our plasma support staff.

At moments during the walk, I looked around me and saw my little group, distinguished by their absurd team attire–perhaps next year you too could look sharp in a multicoloured Dr. Seuss hat–and I realized how not alone I am. While I searched for my own team, I saw so many similar groups ahead of and behind me, reminding me that we’re all in this together.

I’m blessed by the people who walked with me and the people who sent their regrets and wished me well. To the team members who hunted down my ridiculous 5-year pin, which I finally received from a kind volunteer, a 5-year survivor himself. To the two very handsome firefighters, the retired one who appeared on site unexpectedly with his beloved partner, the other one in uniform who handed me my survivor’s rose at the end.

Today I am spent, drained, hungover, but in a good way. You must know this feeling. I look forward to next year’s event. If you too aspire to be a red blood cell in colourful clown attire, know there’s always next year.

Crowd picture at Light the Night Calgary 2017

A microscope may help you see our team.

Getting back on the therapy horse

Bride trying dress with group watching on Say Yes to the Dress

Since I am expecting a hoard of new clients to swarm my office any day now, I felt it was time to brush up on my therapy skills. I considered reviewing some of the books on my office shelves or going to a family therapy conference or ten, but I’m taking the easy route instead: I’m watching television.

I’ve admitted previously that I have an odd fascination with Say Yes to the Dress, and not just because J. and I both wore jeans to our home wedding. Before I started watching this show, I did not realize that brides-to-be took entourages to shop for the special dress. Makes sense, I guess, to seek input.

I imagined that the bride’s opinion would take precedence in the end. If the bride said yes to the dress, who would care if her mother or best friend or clothing-designer cousin or long-deceased grandfather who spoke through her aunt the medium said no? A lot of people care, it turns out, especially the bride.

I’ve witnessed many a bride crying in her dressing room, afraid to exit for fear of the entourage’s reaction to her choice. Many a narcissistic mother has forgotten that the appointment is actually about her daughter the bride. And many the oblivious father is unaware that his daughter is more concerned with pleasing him than pleasing herself. Because I am a psychologist and not a medium, I can’t speak for the wishes of long-deceased grandfather.

I marvel at the sales associate-cum-family therapist who, while helping the vulnerable bride-to-be find her perfect dress, manages the needs of the highly opinionated crew she has brought with her. Consider this a glimpse into family, and group, dynamics. (Turns out we often play similar roles in groups as we do in our families.) Ms. (or Mr.) Dress-a-Bride manages to keep the entourage happy while ensuring that the bride’s needs are met. This often involves skilled negotiation with widely varying personalities.

Now let’s consider another favourite nap inducer, Chopped. The chefs who participate on this show are a product of their family upbringings, as are we all. There are the only-child competitors who won’t share ingredients vs. the eldests who unscrew their competitors’ unyielding bottle tops, if you believe in that birth-order baloney.

I’ve also learned from Chopped how many adult children are tormented by their parents’ disapproval of their professional choices, despite their successes in their careers. This needing-to-please theme sounds oddly familiar. (See above.) The chefs pray a Chopped win will foster their parents’ acceptance, finally, after all these years. Will these contestants ever understand that what matters most is how they feel about the path their lives have taken and not how their parents judge that path? I fear not, barring help from someone like me.

You too can hone your therapy skills from television shows like these. Who cares how to incorporate cinnamon hearts into an entrée or whether a princess gown or a mermaid would better suit the bride? Focus on what really matters, like I do: how people are getting along.

Once you master the complex dynamic issues in these shows, we can move on to 90 Day Fiancé or even Big Brother. On second thought, maybe not. Even I have my limits.

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