What to Say When You Meet the Angel of Death at a Party

Bobbi and I read this and thought a lot of things were good descriptions. She’s doing well with today and we don’t dwell on tomorrow. Thank you for the read. Took a break for a bit but will soon be sharing again.

After years of living with stage IV cancer, I have some suggestions. By KATE BOWLERJAN. 26, 2018

DURHAM, N.C. — EVERY 90 days I lie in a whirling CT machine, dye coursing through my veins, and the doctors look to see whether the tumors in my liver are growing. If they are not, the doctors smile and schedule another scan. The rhythm has been the same since my doctors told me I had stage IV colon cancer two and a half years ago. I live for three months, take a deep breath and hope to start over again. I will probably do this for the rest of my life. Whatever that means.

When my scan is over, I need to make clear to my friends and my family that though I pray to be declared cured, I must be grateful. I have three more months of life. Hallelujah.

So I try to put the news in a little Facebook post, that mix of sun and cloud. I am trying to clear the linguistic hurdles that show up on my chart. Noncurative. Stage IV. I want to communicate that I am hoping for a continued “durable remission” in the face of no perfect cure, but the comments section is a blurry mess of “You kicked cancer’s butt!” and “God bless you in your preparations.”

It feels impossible to transmit the kernel of truth. I am not dying. I am not terminal. I am keeping vigil in the place of almost death. I stand in the in-between where everyone must pass, but so few can remain.

I was recently at a party in a head-to-toe Tonya Harding costume, my blond wig in a perfect French braid, and a woman I know spotted me from across the dance floor.

“I guess you’re not dying!” she yelled over the music, and everyone stopped to stare at me.

“I’m working on it!” I yelled back, after briefly reconsidering my commitment to pacifism.

We all harbor the knowledge, however covertly, that we’re going to die, but when it comes to small talk, I am the angel of death. I have seen people try to swallow their own tongue after uttering the simple words “How are you?” I watch loved ones devolve into stammering good wishes and then devastating looks of pity. I can see how easily a well-meaning but ill-placed suggestion makes them want to throw themselves into oncoming traffic.

A friend came back from Australia with a year’s worth of adventures to tell and ended with a breathless “You have to go there sometime!” He lapsed into silence, seeming to remember at that very moment that I was in the hospital. And I didn’t know how to say that the future was like a language I didn’t speak anymore.

Most people I talk with succumb immediately to a swift death by free association. I remind them of something horrible and suddenly they are using words like “pustules” at my child’s fourth-birthday party. They might be reminded of an aunt, a neighbor or a cousin’s friend. No matter how distant the connection, all the excruciating particularities of this person’s misfortune will be excavated.

This is not comforting. But I remind myself to pay attention because some people give you their heartbreak like a gift. It was a month or so into my grueling chemotherapy regimen when my favorite nurse sat down next to me at the cancer clinic and said softly: “I’ve been meaning to tell you. I lost a baby.”

The way she said “baby,” with the lightest touch, made me understand. She had nurtured a spark of life in her body and held that child in her arms, and somewhere along the way she had been forced to bury that piece of herself in the ground. I might have known by the way she smoothed all my frayed emotions and never pried for details about my illness. She knew what it was like to keep marching long after the world had ended.

What does the suffering person really want? How can you navigate the waters left churning in the wake of tragedy? I find that the people least likely to know the answer to these questions can be lumped into three categories: minimizers, teachers and solvers.

The minimizers are those who think I shouldn’t be so upset because the significance of my illness is relative. These people are very easy to spot because most of their sentences begin with “Well, at least ….” Minimizers often want to make sure that suffering people are truly deserving before doling out compassion.

My sister was on a plane from Toronto to visit me in the hospital and told her seatmate why she was traveling. Then, as she wondered when she had signed up to be a contestant in the calamity Olympics, the stranger explained that my cancer was vastly preferable to life during the Iranian revolution.

Some people minimize spiritually by reminding me that cosmically, death isn’t the ultimate end. “It doesn’t matter, in the end, whether we are here or ‘there.’ It’s all the same,” said a woman in the prime of her youth. She emailed this message to me with a lot of praying-hand emoticons. I am a professor at a Christian seminary, so a lot of Christians like to remind me that heaven is my true home, which makes me want to ask them if they would like to go home before me. Maybe now?

Atheists can be equally bossy by demanding that I immediately give up any search for meaning. One told me that my faith was holding me hostage to an inscrutable God, that I should let go of this theological guesswork and realize that we are living in a neutral universe. But the message is the same: Stop complaining and accept the world as it is.

The second exhausting type of response comes from the teachers, who focus on how this experience is supposed to be an education in mind, body and spirit. “I hope you have a ‘Job’ experience,” one man said bluntly. I can’t think of anything worse to wish on someone. God allowed Satan to rob Job of everything, including his children’s lives. Do I need to lose something more to learn God’s character? Sometimes I want every know-it-all to send me a note when they face the grisly specter of death, and I’ll send them a poster of a koala that says, “Hang in there!”

The hardest lessons come from the solutions people, who are already a little disappointed that I am not saving myself. There is always a nutritional supplement, Bible verse or mental process I have not adequately tried. “Keep smiling! Your attitude determines your destiny!” said a stranger named Jane in an email, having heard my news somewhere, and I was immediately worn out by the tyranny of prescriptive joy.

There is a trite cruelty in the logic of the perfectly certain. Those people are not simply trying to give me something. They are tallying up the sum of my life — looking for clues, sometimes for answers — for the purpose of pronouncing a verdict. But I am not on trial. To so many people, I am no longer just myself. I am a reminder of a thought that is difficult for the rational brain to accept: that the elements that constitute our bodies might fail at any moment. When I originally got my diagnosis at age 35, all I could think to say was, “But I have a son.” It was the best argument I had. I can’t end. This world can’t end. It had just begun.

A tragedy is like a fault line. A life is split into a before and an after, and most of the time, the before was better. Few people will let you admit that out loud. Sometimes those who love you best will skip that first horrible step of saying: “I’m sorry. I’m so sorry this is happening to you.” Hope may prevent them from acknowledging how much has already been lost. But acknowledgment is also a mercy. It can be a smile or a simple “Oh, hon, what a year you’ve had.” It does not ask anything from me but makes a little space for me to stand there in that moment. Without it, I often feel like I am starring in a reality program about a woman who gets cancer and is very cheerful about it.

After acknowledgment must come love. This part is tricky because when friends and acquaintances begin pouring out praise, it can sound a little too much like a eulogy. I’ve had more than one kindly letter written about me in the past tense, when I need to be told who I might yet become.

But the impulse to offer encouragement is a perfect one. There is tremendous power in touch, in gifts and in affirmations when everything you knew about yourself might not be true anymore. I am a professor, but will I ever teach again? I’m a mom, but for how long? A friend knits me socks and another drops off cookies, and still another writes a funny email or takes me to a concert. These seemingly small efforts are anchors that hold me to the present, that keep me from floating away on thoughts of an unknown future. They say to me, like my sister Maria did on one very bad day: “Yes, the world is changed, dear heart, but do not be afraid. You are loved, you are loved. You will not disappear. I am here.”

 

https://www.nytimes.com/2018/01/26/opinion/sunday/cancer-what-to-say.html

16 thoughts on “What to Say When You Meet the Angel of Death at a Party

  1. Thank you for sharing this information. Going through this with my parents, really hits home. God bless you both. I’m so glad that you have each other, both understanding the reality of the steps you need to take. Bobbi and Mike I pray for you as well as your family. Take care. Love you-Betty

    Liked by 2 people

  2. Good to “see” you, two. This piece is one I read a few times and again here, Mike. So thank you for re-posting. It’s really the most economical use of appropriate words I’ve read to describe the situation of a stage IV / metastatic life after diagnosis. I know you’ve put the iPad down but still, it’s good to know you and Bobbi live and kick ass out there.

    Today found me leaving a mental health facility alone. It’s where I chose to allow professional responsible human beings to rescue my ailing partner from the shackles of long term anxiety and depression. Leaving without him broke my heart and was not a relief – but another sentence to live through. It will be a relief when this week over the course of treatment his sparkle reappears and he is resuscitated.

    When I read about the support and the love you share with your betrothed, pain would stab my heart when I would look over at him – disengaged, sighing, angry. My visible outrage for being his care giver for over three years, of which this past 18 months was the hardest trial of my life. My god. What more can one do but look up and ask the ceiling more questions about meaning and worth and value about life.

    Then I get a post in my inbox to remind me of why it’s worth it to know that it is my responsibility as a wife to make a decision for my most wonderful partner to revive him and ask for his soul be returned his body. He, too, is suffering.

    What fresh hell might tomorrow bring? Hopefully a new sandwich called “fresh he’ll” from a deli and no more than that.

    Stay sane, stay happy, stay tuned, stay in touch,
    ♥️Ilene

    Liked by 2 people

    1. Thank you. When one thinks things can’t seem to get any worse, life seems to hand out an example of how it truly can. The sharing of the feelings walking away alone from the place your mate is finding his footing again was strong. Watching someone you love and full hardly care for become ill, terminally at that, can break the strongest and turn their lives into a shell of what once was the opposite. Your outlook in being his wife and to have understanding, hope, and sympathy, while in the battle of your life I can certainly relate with. It takes a lot to push aside the hurt and remember the promise of the vows. Mental health is like a scarlet letter put on some so vastly misunderstood. The people dealing with the struggle don’t wish it to be, but a force, a black cloud, can feel like it’ll never see another blue sky. Maybe a rebirth will now take place? Perhaps not… but you have the clarity and the vision. Very challenging on top of your battle. We love to the best of our abilities. To be alone and hurting can cause an anger of “what the fuck about ME damnit! Want some depression? Walk in my shoes and see what looks back in the mirror in the morning!” Yet, the things that want to break us are always different. I hate not having the answer to things that baffle me. I have expectations that if I can deal with hard things others can deal with smaller. Yet their small are their biggest. Sure have eaten a lot of “what the hell” sandwiches! This life, this world, never ceases to amaze me.

      That article reposted made a lot of sense. Took some down time to see what cards were freshly dealt. As it seems to be 52 card pick-up cycle. Ringo had to listen to the beat to get the rhythm right again. Figure a few things out. Thanks for taking the time to share such personal experiences.

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  3. Thank you for sharing this, it helps to know that others are going through the exact same thing. Really, I try not to whine about it.. It seems that at many times when we have a major test in our life…..diagnosis of a serious disease, death of a loved one, loved one is seriously ill, people who we think of as our best friends “just don’t know what to say” so they don’t say anything. As I enter my third year of dealing with this disease, it’s treatments and side effects I find that many of those friends have dropped away. They don’t know what to say, so they don’t say anything. I hate being asked how I am particularly when I have told people that I don’t like that question because I hate having to say the same thing over and over….there is no change. When there is a change I will tell you.
    Other than not being able to do many things that I did before I want my friends to treat me like they always have. I want us to laugh together, cry together….whatever we have to do to get through the day, let’s do it together. But please don’t be offended if I ask you to leave because I’m tired or I have to get off the phone because I’m tired of you telling me what to do or thinking you know better than the team of doctors I work with. All of these friends think I should be well by now or perhaps dead. At first I heard from these friends every few days, then it was weeks and now it’s months. I email and they don’t respond. I find that strange. I’m very positive and upbeat because that’s just the way I am. Ah, well, I assume they are still thinking good thoughts and that those who pray still pray for me.
    Until something like this happens to us we have no idea how we will handle it.
    Hang in their dear friends. As for me…there really is no change, I’m not dying, I try to find things that will make me laugh, read books that are beautifully written, watch nature programs with beautiful landscapes, look at pictures of sunsets and moon rises. There is such beauty in the world I want to be surrounded by it. I don’t moan and groan. Each morning I get up and feed my cats, have my breakfast and get dressed and fix my hair and makeup….yes, even if the plan is to be home alone all day. I feel better if I look good when I see myself in the mirror. For a while I was frustrated by the things I was no longer able to do….walk decently (walking with a rollator is not really walking) or worse…..lose my independence because for the time being I can’t manage the rollator and getting into my car so unless I have a ride I can’t go anywhere. But really I’m okay. I’m doing fine most of the time. I pray for my friends and I pray for the world. I want to live long enough to see a better world and I pray that all of you do too.
    Love to all,
    Michelle

    Liked by 3 people

    1. Michelle we both thank you for this and think of you often. Today has many battles, yet each one seems to have the most simplest seconds of peace and appreciation. So many have opinions, meaning well, and some get it so right. It’s hard to shelter people from the real life pain and struggles. I just want to yell “you know nothing but what you see” and that is from brave fronts and wanting to assure some so they feel better. The reality is too raw and strong to be comprehended. Bobbi gives so much of herself at the cost of herself. I get angry seeing her drain herself in assuring their feelings are put at ease over her need to heal and be. Some can be the anchor the article touch’s on. I sit back silently and quietly watch. Each day’s passes with unsureness and living in a state of in between the here and now and knowing little of tomorrow. The magic lotions, the “think positive”, the “ I have a friend whose lasted such and such a period”. Bobbi spent 40 years in the medical field and knows what the realities are. There is no quit in her DNA. But there is an awareness of quality verse quantity that guides her. I support whatever she chooses to do with each day and in the future. We talk about everything. What’s mattered greatly to her is wondering if her life has made a difference on this earth. Which it certainly has. We all hope our lives have made a difference. Sometimes there’s just so much white noise and static disrupting the simple peace desired. Long hours in cars, storms, mountains of paperwork, bills. The most simple things matter the most to her. Letters, calls, having nails done. Being shown she is loved. Concerns for myself I have none except in her having a good 24 hours. That’s all I care about. I’m the one that sees and holds her at the end of grueling days. Brush the tears aside and comfort. This is a gift for me do be able to do and would scare the hell out of some. When we rode motorcycles I could feel her lean into me on turns and rough roads. My steadiness, even when scared myself, I wouldn’t let on. She now leans into me for that comfort during this. I gladly accept it. We can hope for months or years. What we keep going back to is today. That’s all we really have. So many tests, so many chemo cocktails that take a little more from her each time. Yet she is cheerful and sharing pictures of our kids and grandchildren. At night, when I help her to bed it’s a gift. I’ve never loved like this or been loved like this. Tonight we simply watched TV and it was so peaceful. Rubbing her sore muscles with oils each night is intimacy that can’t be matched by anything. There are some very stressful days but we get through them. We have today, and she is loved by many. A long ways from conceding anything. Thank you again for sharing your life and battles. She will always be my person of beauty. We will continue to share the same trail. There’s a real peace in knowing this. Have rambled on some but know you know what the words mean. Again thank you our friend.

      Liked by 1 person

  4. Very poignant….thank you.

    If love could buy a cure, happiness, solid remission…whatever, know this. You both would be crazy healthy for all the love that surrounds you❣️ 💜💜💜💜💜

    Liked by 2 people

  5. Thank you for sharing Mike & Bobbi, this woman stated it eloquently. Those of us who have been fortunate enough to have not experienced a terminal illness are quite clueless. Not knowing what to say, we say too much, or not enough, simply being quiet & present, letting one lnow you are thinking about them & care is quite enough versus offering 101 different opinions. Humans can be quite thoughtless, most often not intentional, but non-the-less, thoughtless.
    Love you guys. Tobes

    Liked by 2 people

    1. Susan: I HAVE been there….and my experience makes it no easier, no more eloquent, no perfect words or phrases. All we can do is be present, express love and be there.

      Liked by 1 person

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