Saying Goodbye

  
How do you pack for your brother’s death?

I stood in my closet last night looking at a row of hanging clothes and feeling as if the most trivial thing in the world was my wardrobe in coming hours and days. My husband started to give a practical answer to the question I had asked aloud, then thought better of it. “Maybe you didn’t actually want an answer,” he finally said. 

I received the call soon after I walked in the door at 6:20 yesterday evening. It’s one of those calls where you’ll remember exactly where you were sitting and what you were wearing when you received it. Brown sofa. Blue scrubs. No power to affect the situation. What did the call tell me? My brother is on the west coast in a coma and on life support after becoming critically ill during a work-related trip. We were first told that he wasn’t expected to live through the night, but we learned a few hours later that he would likely survive with full medical support long enough for family members to arrive to withdraw it. 

The hours since then have been a blur. A frenzied online search for tickets with my vision impaired by tear-filled eyes. A struggle to think about my own needs long enough to pack. Phone calls from family members wanting a medical opinion I feel ill-equipped to provide—I haven’t even seen my brother once this year, let alone since he became critically ill yesterday. A five-year-old who understands what’s happening and recounts every memory she has of her uncle, starting at age two and a half—and a picture of him that she creates with crayons, asking “Will you give it to him before he dies?” A text to my upper-level in the ICU I’m working in. His sensitive phone call in return—he has lost a little sister and a son. An hour-long drive to the city of my departure—an autopilot drive I have no memory of until I pulled into my best friend’s apartment complex. I only remember that because my car had black smoke pouring from the hood and smelled like burning rubber when I arrived—no time to deal with that now. We napped for a few hours before we left for the airport, and I write now from a plane that will take me to the city where my brother will die. 

Or perhaps it won’t. I’ve been trying to hold myself together. I made small talk with the friendly flight attendant who seemed unaware that people might travel for tragedy and not care to hear about how “crazy” her morning has been. I wasn’t offended—if anything, I was thankful for the distraction of her light-hearted way of speaking, and I didn’t let on that my heart is breaking…until the announcement came on over the loud-speaker 20 minutes into the flight. “Ladies and Gentlemen, you may have noticed that we have leveled out and are hovering over the departure city. We are experiencing an equipment malfunction and must return to the airport at this time. We fully anticipate a safe landing and will work to provide you with travel arrangements upon our arrival at the gate.”

A flight attendant noticed the stream of tears that poured down my face as if they had been building up pressure all morning. She rushed to reassure me, assuming that I was overwhelmed with fear. I was, but it was a different kind of fear. Would I get there in time? I explained where I was going and why, and that every minute counts. She assured me that agents would be available to assist me with travel plans as soon as we disembarked. I didn’t trust her—I’ve had difficult travel days before. 

I just boarded my second plane of the morning. I was savvy enough to know that if I wanted to get out of this city, I had to do it myself and before anyone else had a chance. I had my finger on the airplane mode switch on my phone as we made our final descent, and I switched into full service and googled the number for the airline the moment we landed. I called and went through many verbal menu lists, saying “other options” every time until I was finally able to speak to a human. The agent gave me the last seat on the flight before I even had time to deplane and arrive at the gate counter. A crowd from my first plane had already gathered there by the time I arrived, and more passengers quickly filled in the space behind me. A woman at the counter made an announcement: “Unless you are the passenger who just made a reservation by phone, I cannot help you. Our plane is full.” I stepped up. “That’s me.” “Smart girl,” she said as she printed my new boarding pass. Not so much smart as driven. I want to hold my brother’s hand while he still has a pulse. 

So now I write from the plane that will take me to the city where my brother will die. This morning I scrolled through Facebook messages between my brother and me. We are kindred spirits—both writers and identical as children except for his bright red hair and freckles. He is also an atheist, and I had recently shared my doubts with him for the first time in writing. We wrote about faith and living without it. We wrote about the tumultuous family life we both knew, even though at 43 he is 15 years older than I am. We wrote about forgiving those who hurt us. We wrote about writing and our projects and aspirations. He is a professional writer and a wealth of insight for me, and I am so proud of him for his accomplishments. 

In a later exchange, he told me that because of the deep connection he had felt with me in our written words before, he wanted to share something with me that I was to keep secret. His marriage of 18 years had fallen apart. I promised to keep the secret (and did until he openly announced it weeks later), and I wrote back with love and support. He received my supportive words with gratitude, but he didn’t say “I love you” back. Now that I think about it, I don’t think he ever did. It never bothered me at the time, but now that I am almost certain he will never speak again, I would give so much to have those words. The whole reason I opened our messages was to see if they were there.

Now I’m being selfish. I told him that I loved him, but I failed him in a way I will never forgive myself for. He’s a bit of a narcissist, and he often posts attention-getting statuses on Facebook or on his blog. We share dramatic tendencies, but I try to keep mine hidden. He doesn’t, so I was not surprised to read a social media update from him two months ago saying that he was in the hospital. Many of his “fans” (he’s a celebrity in some geek circles) commented with their concern, and he assured them that it was not a major issue—that he would be fine. I was curious, but I decided not to pry. I figured that he would tell me if he wanted to tell me, and I didn’t want to feed his ego by begging him to expound on his vague updates. I knew about his divorce before almost anyone else did—he wouldn’t keep big secrets from me.

Shame on me. He did keep a secret. He was dying, and he knew it. Why didn’t he tell? I may never know, but I suspect it was because the disease he has is strongly associated with lifestyle choices. He needed a liver. He found out four months ago, and he told his doctor that he hasn’t had a drink since then. His doctor believes him—but the damage has been done. In two more months he would have been eligible for a liver transplant. His hospitalization in April was due to complications from his chronic disease. He came into the emergency department the night before last with yet another complication, and at some point yesterday he was “found down” by nursing staff, with dangerously low levels of oxygen for an unknown period of time. He is not medically sedated, but he remains in a coma on a ventilator, his pupils fixed and dilated. That is all I know, and I’m not sure that I can trust it. The doctor spoke with my other brothers who spoke to my father who spoke to me—so what I tell you is fourth-hand at best. He had been living with his wife again for the past three weeks for “logistical reasons,” and even she knew nothing about his disease. His five brothers and sisters didn’t know. His parents didn’t know. He could have died alone.

What if I had asked? Would he have told me if he thought I cared? Could I have helped him find the courage to reach out and ask for help and support from the people who love him unconditionally? I’ll never know, because I never tried. I can’t stop thinking about his last moments of awareness being spent alone in a hospital room in a distant city. I can’t stop blaming myself—the sister with the deep connection. I should have known—and when I didn’t know, I should have asked. 

I am painfully aware of my mortality. And I haven’t given much thought to heaven or hell. And I think that’s the way it should be. My brother will not die alone, but he was alone when he slipped into oblivion. If he hadn’t been alone, he might not have gone there at all. He was alone because we all thought he had half a lifetime left to live—I saw him twice a year at most. He was alone because he didn’t tell anyone that he was sick—perhaps he felt he couldn’t. He was alone because I didn’t see deeply enough to know without being told, and I didn’t care deeply enough to ask when I didn’t know. 

I’m not sure if I believe in heaven. I know that I don’t believe in hell—that’s a choice I’m making to get through this day. But eternity, if we exist in it at all, is in the future. Eternity is dimly lit from here and viewed through a foggy glass. Since I cannot prove it, eternity is not a promise—and every moment we spend dwelling on it is a moment taken away from the precious promises in front of our eyes. 

I can promise that people often die before they’re ready—don’t assume you have 80 years to be involved in the lives of your loved ones. I can promise that someone in your life has a secret that they fear they cannot share—assure them of your unconditional acceptance. I can promise that you don’t know everything about everyone you love—so never stop asking questions. I can promise that people die alone every day in rooms full of people who love them—alone because they were never truly known. That is my greatest fear. 

So the pain goes both ways. My heart hurts because my brother didn’t return my affection before he might have run out of chances. And it hurts more because I didn’t invest in knowing his secrets, even if he thought they could never be known. 

Readers, do you have secrets? Share them here—do not die alone because you fear the consequences of being known. Is there anyone you love who needs to hear those three words from you? Tell them now—don’t break their hearts or leave them questioning your love if you suddenly run out of chances to tell them. 

I covet your thoughts, your prayers, and your words. I am alone for a few more hours, but not lonely. I have not known grief like this—thank you for being with me on the journey.

Photo copyright lcsnaps “Sunset Sadness” Dreamstime.com

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31 thoughts on “Saying Goodbye

  1. J,

    You know you’re in my thoughts (I hope), as are the rest of your foursome. I don’t know that I have any words other than: The two of us hold the four of you very dear, in spite of the short time we’ve known you. Much love, from the Toad and the Tammy…

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  2. So sorry. I’ve just started following your blog and so I doubt my words will mean as much, but still, I’m thinking of you and hoping you get to him in time. I also wanted to say, don’t feel guilty for not prying over his illness. I mean, if this is one of those cases where you want to feel guilt, when it feels right to regret and hurt because this is the time when things should feel bad, by all means go ahead. But for when you’re ready for it, please know that any of us would have done the same in your place.

    Liked by 3 people

  3. I’m sorry, so sorry. Thank you for sharing, so that we can be there for you in the way we can be, with hugs, words, prayers.
    Please know you aren’t far from my thoughts.
    I hope for you strength, peace, grace and moments where you can allow yourself the time to grieve, accept, forgive and love yourself.

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  4. I’m a stranger. I don’t know that my words deserve to hold any weight here, but after reading your moving post this is what I find myself thinking…

    I have appreciated your candour in the short time I’ve been coming here, and this whole situation just feels so unfair. Now, why would I feel that way when the universe is indifferent to our joys and suffering? It just IS. Isn’t it? And yet… we find ourselves emotionally invested. How could we not be? (This all feels like a bad dream some days.)

    I’m sorry that this is happening. I hope you get to hold your brother’s hand. Truly.

    Liked by 2 people

  5. I just wanted to update all of you…

    My brother is still alive. Yesterday was a roller-coaster. The neurologist told us to expect no meaningful recovery. To the family, he said the coma could be due to a specific potentially reversible condition or to a likely worse irreversible one. To me (alone with my brother in the room), he said he was almost certain based on an EEG and the physical exam (his reflexes) that it is due to the irreversible cause. I told him that to the family, he had painted a more hopeful picture and some of my other siblings were delaying their arrival. He told me he doesn’t have that hope in reality and that family needs to get here today.

    I relayed that information to my family as it was told to me. Two hours later, the ICU doctor came to talk to us with a completely different story. She is almost certain that his coma is due to the potentially reversible cause, and that by treating the consequences of his organ failure and his severe infections, he may recover. I asked specifically about his neurological signs, and she said “I’m not a neurologist, but I would disagree that his physical exam indicates irreversible brain damage. He moves on his own from time to time.”

    It’s true; he does. He turns his head back and forth and sometimes picks his arms up or jerks his leg. Never on command—it seems random (although if you hold his hand for an hour and say “squeeze my hand” every few seconds, you’re bound to get a well-timed spontaneous hand movement eventually. I don’t have enough experience with these patients to really know, but my understanding has always been that it is not uncommon for patients in a persistent vegetative state to move like this. I hope I’m wrong—I’m not a doctor.

    But I will be soon, and this experience has opened my eyes to what families go through. Watching my family hear devastating news and process it with raw emotion and so much grace was hard to do. Watching them regain all that hope after a second doctor completely contradicted the first was even harder, because I knew what it would do to them if the outlook changed later on. I truly hope it doesn’t…but I am realistically mindful of the difference between “pulling through” and “living well.” We likely have several days before major decisions have to be made—they are reducing some of the IV meds that have been supporting his blood pressure because he is able to do it on his own at this time. But I want those decisions to be about my brother, not about our desires for his heart to keep beating whatever it takes.

    Also, I watched a doctor speaking to my family yesterday literally give four medical abbreviations in two sentences. They turned to me after she walked away. “What is coags? What is FFP?”

    We have to do better.

    I’m on my way to see him now. We appreciate your continued thoughts and/or prayers. It is so hard to see him like this.

    Liked by 4 people

  6. I really can’t believe I’m writing this. And maybe I shouldn’t. I don’t know if it’s exhaustion overcoming my clarity of thought or if it’s adoration for my brother overcoming my objectivity…or if this is realistic hope.

    But I think he might make it out of here alive.

    Soon I must buy a plane ticket for Sunday. That’s not true—soon I will use a small portion of the tens of thousands of dollars donated by my brother’s friends to buy a plane ticket for Sunday. Why Sunday—is he no longer critically ill? Oh he is…but my responsibility is also to 15 or so other critically ill patients who give me the privilege of learning from them as living textbooks. I will have used all illness/bereavement days and all weekend days for my current rotation (without requiring remediation) except one day—and I’m saving that one in case there’s a funeral. When I go home, I will work three weeks in a row with no break.

    I’m dreading leaving. I miss my little family at home so much, but I know that my presence here has been such a relief for my siblings and parents who are staying behind without me—and I am the medical decision-maker until my brother wakes up (and maybe even after). It seems selfish to put my career first right now, and I wonder if I’m doing the right thing. There is a very high possibility that they will let him try to breathe on his own the day after I leave.

    This breaks my heart—but it’s a much better reason for my heart to break than the one I had on Wednesday. Just wanted to let all of you know that our hope is growing as my time here comes to an end for now. For those of you who are praying—please continue to. And pray for me if you think about it—it hurts so much that I can’t be near him.

    Later on I’ll update you on what it has been like for 5 estranged siblings, their divorced parents, and their parents’ new spouses to all be together in one tiny room. Nothing short of magical—I’m truly starting to believe in miracles.

    Liked by 4 people

    • Not sure how that came across. Leaving will be so difficult, yes, and as you go, focus on the fact that you were able to be there, you were a big help, thankfully for all concerned such a relief to have you there, your brother won’t be alone, the family came together, and you’re still involved though far away. Focus on all your great positive moments, those “miracle” moments. ❤

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  8. Thinking of you as you move into this week knowing your mind is with your family and brother. But working and being present in your own life also. x

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  9. A more thorough update is coming soon—but I wanted to let you all know that my brother is alive. I was the only one in the room with him when he awoke on Saturday, and I was there with another brother a few hours later when he had his breathing tube taken out. His first words were “that sucked,” and then he asked for his mom and dad. He’s back in the ICU after an uncontrollable bleed yesterday, and he’s scheduled for a risky procedure today or tomorrow…but overall he’s stable now and completely “himself.” He hasn’t changed a bit…but everything else has. More to come.

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  11. coming up on the 1st anniversary of my own twin brother’s passing. July 21st, 5 something am on a sunday morning. awaken by a call from the ER doctor on my brother’s cell phone.
    I had ‘seen’ his face in my dream maybe 5 mins before I woke up. I’m in az, he lived in Kansas.
    48yrs old and left behind three adult kids with 4 grands. miss the guy.
    I’m praying for your family. you’ll get thru this. -mike

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