The story of Paul’s last day.

Friends, this post will be difficult for all of us. If you’ve had a very recent loss, it’s probably not the best time to read this one. Save it for later when you’re stronger. I am not even sure I should be sharing this. I don’t know who it will help. Maybe you, but maybe just me. I do know that I feel called to share it, and I am very sure that it is a necessary part of the healing process.

Modern medicine has essentially removed death from our everyday lives. People today don’t experience the number of personal losses to death that people did even 100 years ago. Death used to be common place in our homes due to wars, illnesses that now have readily available treatments and cures, accidents, and the prevalence of livestock in people’s everyday lives. We had so many rituals and social structures around death that supported and ushered people through the process. Mourning jewelry that contained images and remains were prevalent. People do still wear mourning or remembrance type jewelry, but it is typically disguised as regular jewelry so that no one but the wearer knows that it contains ashes, a lock of hair, or is actually a finger print or the impression of the electrical impulse of a heart beat from an electrocardiogram. Death has become something to be handled discreetly, privately. I believe that has made it more difficult for those who are grieving, and we are all grieving. We need to talk about it! Candidly. But we don’t. People don’t talk about it when they have been witness to the final moments of life. It’s painful. It’s intensely personal. It’s packed with conflicting emotions that are difficult to describe in words. Perhaps it’s not considered polite to share the contents of that experience. Honestly, manners—superficial, defined social structures—don’t matter that much to me anymore. People, feelings, experiences, being totally present, deeply listening, understanding, and questioning are the things that I care about and pour myself into these days. Transparency, vulnerability, truth. These are the conduits to healing.

The last two weeks leading up to Paul’s last day had been a constant effort to keep him comfortable. The cancer was pervasive. It was everywhere, lungs, brain, abdomen, colon, liver, intestines, everywhere. Our chief concern was, of course, managing pain. We soon arrived at a crossroads where, in order to manage the pain and keep him comfortable, we would have to relinquish his ability to remain conscious. This was an insanely difficult decision-making process for us to navigate. We knew every choice we made about the medications that were being used could mean that we were interacting with the essence of what made Paul Paul for the last time. Some of the drugs being used to manage pain could, in fact, lead to his death. During this time, Paul would have what we described as long pauses. There would be periods of time when he would just stop breathing. We would all huddle close to him thinking that the moment had come. Then, after up to two or three minutes (an eternity!), he would start breathing again. These long pauses happened multiple times a day for days on end. It was traumatizing. Because our son and I would frequently take turns going home to sleep, shower, changes clothes, and walk dogs, there were several times when a period of long pauses occurred when one of us was not at the hospital. When this happened, we would call the one who was not there and stay on the phone while we hurried to get back to the hospital terrified that we might miss Paul’s final moment. Like I said, traumatizing.

He had not been conscious in over a week. The Paul we knew was gone, but his body remained. It was hard to understand what was keeping him tethered. A member of the palliative care team explained that sometimes the dying have a need for privacy in their final moments. So, our son and I left the room for several hours at a stretch, both of us, for the first time since Paul was admitted to the hospital, but it only seemed to agitate him. Even unconscious, Paul rested more comfortably when we were in the room. I asked a member of our palliative care team why Paul was lingering when it was so difficult. I just didn’t understand how his body could possibly be enduring. I think what I was really asking was why Paul had to suffer. I know now that to be human is to suffer. We are human. Suffering is the human condition. For the rest of my life, no matter what happens to me, no matter who I love or who loves me, in my last breaths, I will be in that hospital room with Paul in his last moments. I will see what I saw. I will hear what I heard. I will feel what I felt, and as brutal as that was, it was a privilege.

The palliative care team member I was speaking to was an older doctor, and he gently explained to me, in the most beautiful way, something that had never occurred to me before. He said that, in his career, he had been present at countless deaths and countless births. He said that not all people arrive easily. For some, the birth process is difficult, a struggle, and that the same is true of the death process. For some, it is difficult. It is a struggle. I’m not sure why that had never occurred to me. Again, I think it might be because we as a society do not talk and share enough about the ubiquitous human experience that is the dying process. It makes sense, though, right? Birthing is called labor. There is pain. Then, so, too, dying is also a labor, and some labor more than others just as in the birthing process. Paul was in labor, struggling to be born into the next life, and we were witnesses, but after talking with the doctor, I saw myself as a coach as well and began to think about what Paul needed from me, how I could come alongside him as his partner in the process instead of merely his care-giver and advocate.

On morning of the last day, I arrived at the hospital early. Our son had been with Paul through the night and headed home for a little while. Shortly after our son left, Paul’s breathing became labored and noisy, loud. It was difficult to be in the room. It was brutal.

I sent this message out to family and friends. “We are on our knees this morning. This road is very, very difficult. But we are not alone. We feel the love and prayers of family and friends near and far. Any strength you perceive in us, I have to tell you is not us, but Him. I am running on His Grace alone. There is nothing left but His Grace. Everything else has been stripped away. We are laid bare in the pain and struggle of it. I have honestly never experienced anything worse than this, and yet I rest in the comfort of my Savior’s embrace. We love you all.”

In desperation, I cried out to God to be merciful. This was my prayer that day, “Please, Lord God, have mercy on your servant, Paul. He belongs to You. He has always belonged to you, Lord, and now I am begging you to have mercy. I am thankful for the days you have given us. I am sorry for the many ways I have fallen short. Please, Lord, be merciful.” Then, I had a heart-to-heart talk with Paul, the way a wife talks with a husband. I told him that we were trying everything we knew to keep him comfortable, but we were failing. I told him that we could not heal him, but God could. After 30 years of complete and utter love and devotion, I told Paul for the last time that I loved him but God loved him more. Yes, God loved him more. That was an important realization for me. I had always thought that I loved Paul most and best, but that was actually never true. God always loved him more. I also talked to Paul about all the wonderful, fun, sad, difficult, normal, extraordinary things we had done together. We were always together, but this was different. He would have to do this last thing on his own, and I told him I knew he could do it. He had to go on ahead of me, and he had to do it by himself.

Our son arrived back at the hospital about noon, and the labored breathing continued throughout the day. In the evening, he was suddenly quiet. The three of us spent the rest of night together peacefully. I awoke at about 1:30 in the morning. I don’t know why because on the surface nothing had changed. Paul was still quiet and peaceful. So, I just sat there with him holding his hand. The pace of his breath quickened, and I spoke with the nurse about a medication change. She administered the medication, but his breathing continued to be erratic. I woke our son up. He and I surrounded his dad with love and joy and gratitude and saw him traverse the threshold from this world to his eternal home.

When it comes to cancer, everyone prays for a miracle. Well, we did have a miracle. It was not a happy ending in the traditional sense as in a cure, but it was a peaceful, dignified ending. The miracle is that, given what we were facing, Paul died peacefully and with dignity surrounded by family, friends, and so much love.

I have used this picture in a previous post, and you may have thought, as I did, Why am is she (am I) smiling? When I saw myself in this picture, that was my first thought. Why am I smiling? Initially, I didn’t have an answer for that question. Over time, I realized why. For me, the hardest part was watching Paul in pain, watching Paul die, and that part was thankfully, blessedly over. I could not even cry. I felt so ridiculous, not being able to cry, but I was so happy for Paul, that the pain and suffering was over. My grief was delayed by relief. I recently saw a picture of another young widow, an acquaintance of mine from high school. Her husband died of cancer, 49 years old. In the picture, the day of her husband’s funeral, she is smiling, just like me. I know why.

Be blessed, Malia

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The Keeping-it-Real Post: Part II, or The Elephant in the Room

The Elephant in the Room? Seriously. I’m running an elephant sanctuary over here.

We’ll start with the baby elephant, anxiety.

In the early weeks and months after Paul died, it was difficult for me to leave the safety of the house. I wanted to be where he was. Paul and I did everything together. We enjoyed each other and enjoyed doing even the smallest activities together. I don’t even remember the last time I was in a grocery store by myself or pumped my own gas. Now, just riding in the car by myself feels like a foreign country. I am not sure I fully realized it until Paul was no longer by my side, but he made me feel safe, emotionally safe certainly, and, in some cases, physically safe.

I admit that I have long been a bit of a “nervous Nellie”, a little hypersensitive even from my childhood, but going through my days alone has caused me anxiety like I have never known it before. It is at its worst in the morning. Big surprise <insert sarcasm>. Sometimes I can’t get out of bed. It’s a struggle just to get my feet on the floor. Sometimes I get stuck in the kitchen. I’m dressed. I’m ready. I’m standing in the kitchen, and I can’t move from that spot. The other prime locations for getting stuck are in the driveway and at the traffic light as I’m trying to leave neighborhood. When I’m stuck in the driveway, I just sit there and watch the garage door go down trying to decide if I’m actually going to leave the house or not. If there is no one waiting behind me at the traffic light, I will often just keep on sitting through the next cycle or two. If I’m forced out the neighborhood by people waiting behind me, then I make my way to my destination but struggle to get out of the car when I arrive.

I’ve attempted to deal with this anxiety in several ways because what I’ve really learned about anxiety like this is that it’s not going away anytime soon. I have to manage it. There are times when I am able to confront it. I can muster my courage and force myself to take the next step. That works. Sometimes. Other times, I find it best to avoid that which I know causes anxiety. I order my groceries online, and go pick them up instead of doing the shopping in-store. That is a reasonable, acceptable avoidance that does not impact my quality of life. I have used interventions such as medication (short term), controlled breathing, meditation and prayer, exercise, connecting with others, and counseling. I doubt I am going to be anxiety free any time soon, but I have enough strategies at my disposal to manage. For now.

So, that’s anxiety. Next up, anger.

Anger has always felt wrong to me. Wrong on a sinful level. I have always tended to be less expressive, even stoic. It’s hard for me to remember many times in my life when I’ve been out-right angry. It is also useless, honestly. It’s not productive or helpful in any way as far as I can tell, but anger is a very natural, biological emotion, and it’s present very early on in life so it must be important. Even babies get angry. Anger in its basic form is used, I believe, to draw attention, to demand attention. And perhaps that’s what anger in the midst of grief is all about. A demand for a wound to be attended to. Anger can be sneaky. For me, anger over my husband’s death comes out as irritability, being short-tempered with others, having impatient outbursts that take me by surprise, and I think to myself where did that come from? My anger forces me to attend to something within myself that I have pushed aside for too long. The message to me from me is…..Deal with these feelings, or they will deal with you. And, by the way, I’m fed up with all the feelings. It’s exhausting, and I’m sick of it.

The anger usually abates when I acknowledge what I’m angry about. So, what am I angry about? Here goes. I am angry that Paul left me here by myself. No, he didn’t do it on purpose. I am angry about the way Paul died. No, there was nothing that could have been done differently. I am angry that I was completely helpless to do anything for him. Yes, I did everything I could. I am angry that I have to do all this grief sh*t (excuse me). Yes, yes, the grief work has helped me grow. So, do you see? Do you see how senseless anger is? And, yet, it is there.

I think the best way to sum up anger in the midst of grief is with this clip from the movie Steel Magnolias. It’s not perfect, but it’s pretty darn close.

These elephants are getting bigger. Ugh. Next, the twins, hurt and guilt.

Marriage, any relationship for that matter, is not all goodness and light, my friends, as I’m sure many of you well know. Conflicts occur. I suppose it is inevitable in any relationship as we are all flawed. Old arguments come to mind. I think of things that I said or did that hurt Paul and things that Paul said and did that hurt me as well. Some of the arguments were the ridiculous kind that all couples seem to have, but some of them were more serious incursions, and the hurt and the guilt are deep and impossible to forget. I have to say here that I think it’s really important to remember the love and the good times, the happy memories, and to remember the difficult, hurtful memories, too. It’s not good to over-romanticize the relationship. While it is painful to remember the hurtful things I did and how I was hurt, it also allows me to continue to learn how to improve my current and future relationships with those I love. Guilt is good. It’s a gift from the Holy Spirit that hopefully(!) prevents us from erring repeatedly.

And, finally, Jumbo makes his entrance. Regret.

I most regret the missed opportunities, missed opportunities to be more attentive, patient, to be a better listener, more accepting, to know my husband in deeper ways and to be more open so that I could be fully known. I regret the times that I fell short of being the wife he wanted and/or needed. I don’t mean to say that I wish I had necessarily agreed with him more because sometimes that is genuinely not what a person needs although it may be what they want. I just mean that I can think of times when reacting differently to what was happening in our relationship would have been the more loving and honorable way to be my husband’s wife. One of my deepest regrets came in the weeks and days before Paul died. I was in full caregiver mode. Decisions about his care had to be made every day and had to be made quickly. I so wish I could have stepped away from my caregiver role and could just be with him in those last days, but it was impossible. I was being Martha because I had to. I wish I could have been Mary.

So, how does all this junk get resolved? Three words. Mercy, forgiveness, and grace. Mercy is when we don’t get what we have coming to us, when we have behaved wrongly and should rightfully be punished but are spared. With forgiveness, we can surmount the anger and resentment. We can let it go. And then there’s grace. Grace is the clincher. It’s the life changer, the freedom bringer. It is completely unmerited, cannot be earned and is the highest form of love. It takes all three of these to make a relationship work. Marriage is hard, but a promise is only a promise if it is kept. The following passage was read at our wedding as it is at so many, but it remains, for me, a guidebook to being in a right relationship with others.

The Way of Love (1 Cor 13:1-13)

13 If I speak in the tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal. And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not love, I am nothing. If I give away all I have, and if I deliver up my body to be burned,[a] but have not love, I gain nothing.

Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful;[b] it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things.

Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away. For we know in part and we prophesy in part, 10 but when the perfect comes, the partial will pass away. 11 When I was a child, I spoke like a child, I thought like a child, I reasoned like a child. When I became a man, I gave up childish ways. 12 For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.

13 So now faith, hope, and love abide, these three; but the greatest of these is love.

Our wedding day, Dec 14, 1991

So, go ahead, dear ones. Talk about the elephants in the room. Call them out by name. Mountain climber, adventurer, and completely blind for most of his adulthood, Erik Weihenmayer says, “You lean in to the thing that sort of scares you, that overwhelms you, so that you can kind of get up close to it and you can experience it fully and then it kind of loses its power over you.”

Get up close to your elephants, friends, and the room will be yours!

Blessings, Malia