This is a piece about my friend. For the purposes of this piece, let’s call him Dan. I met Dan through an organization which we were both brought to via the glorious gift of desperation. I showed up quite a ways before he did, though I understand that as nothing other than the fact that my trajectory of self-destruction gained traction and built speed a little faster than his. Basically this means that I have more clean time and, in terms of what makes for a powerful recovery, I don’t understand the accumulation of time to be a key component. With that said, the concept of time, in terms of its application to the number of days we get to spend on this big blue spinning rock we share is of rather great importance. Our days are limited. We all know this. At some point we all experience expiration. Yet, some of us, as the result of physical challenges well beyond our control, come to find that our sell-by date is set to arrive far sooner than expected. One of the first things I came to learn of Dan is that his time was running very short.
Brain tumor. That’s what I was told. Not by him. The information was provided by a close friend of his who I had come to like and trust. Granted, it was third-party communication, which I have assuredly learned to be wary of, though something like cancer does not leave a whole lot of room for ambiguity. When first informed, my reaction was mostly one of surprise, peppered with a bit of pity, as Dan and I knew each other well enough to say “Hey” before or after a meeting, but little more. And yet, I saw Dan quite regularly; at least two or three times a week, and with the information of his condition at hand, I found myself more and more interested with who he was and how his potentially imminent demise was sitting inside of him.
It’s difficult to locate exactly how we came to know each other. We’re not a natural fit by any means. I’m an extrovert; charming, talky, some even might say smothering. The theory of my “too-muchness,” I imagine, is held by others no less than I pin it on myself. Dan is quiet; insular to the point of seeming non-existence at times. Folks like this, measured and cautious, tend to generate two core reactions in me. The first is fear. The regressive part of me which obsessively attempts to navigate who will make room for me and who won’t, tells me that their caution generates from a sense that I am dangerous; that they need be wary of the big ball of passionate, insatiable energy pulsating before them. The secondary, and healthier reaction, is fascination. Like a puppy watching an experience beyond its understanding, I can feel my head tilt ever so slightly to the left wondering, “What are they doing? What is that? What’s happening in there?” While, intellectually, I understand that the general affect of restrained insularity is nothing more than the affect of unrestrained gregariousness dressed up in different clothes. I’m a believer in the notion that the general affect we choose has all to do with an unconscious response to the particular flavor of our family of origin damage. Still and all, my curiosity persist, with the desire to cautiously approach then like an ornithologist trying to snap a picture of a Marquesan Imperial Pigeon. I slowly approach them, seed in hand, softly cooing, “Hey there, quiet person. It’s okay, I’m safe.”
Suffices to say, at some point, Dan twitched his head, lowered his beak, and began to nibble. He began attending the meeting I run out of my heated, detached garage on Tuesdays and Fridays. He’d call and check in from time to time or just drop a quick text. In addition to recovery, we found that we shared a love of music, more specifically, the music of the great Tom Waits- which, in and of itself, is nearly enough for me to commune with anybody. Dan had recently completed the program at a local rehabilitation center. He had a particular passion for sticking needles in his arm, and after a cursory pass or two at getting clean in the past, it appeared that he become entirely willing to do the work necessary to walk free from the prison of self-destructive insanity. He asked if I would help him.
As I’ve had the privilege to do with so many, I led him down the path to a new design for living. He recovered. In doing so, he found his voice and began carrying a message of courage and hope- inspiring all lucky enough to sit in a room with him. Most certainly, anyone with our illness who finds their way home from the incomprehensible demoralization is a miracle. And yet, there are some who overcome odds, or, as in Dan’s case, carry forth with those odds still in place, who demonstrate a wherewithal nearly unimaginable by most. To watch Dan, sitting with his fellows, speaking of being blessed and cared for by his higher power and feeling a level of gratitude he never though possible; and all the while housing a tumor the size of a softball in his frontal lobe with the promise of death no more than three to five years off, was, for me, utterly mind-blowing. I regret to admit I have some questions about whether I possess that same fortitude. I pray that I never need to be put to that test. Though, one of the many gifts Dan has granted me is the knowledge that it can be done.
And yet, the nature of our spiritual program of action is that once recovered, there are some basic actions which need be taken on a daily basis to maintain and grow what we’ve been granted. Dan, for reasons known only to him, failed to properly tend his garden. Slowly, the soil dried up and the flowers began to wilt and one day, after not hearing from Dan for a week or so, I got word that he had made the choice to venture back behind the bars from which he’d obtained freedom and do some further research. God’s eternal grace was extended in his direction yet again, and rather than a phone call from the police informing me that they’d found him, stiff and blue, with a needle sticking out of his bicep; I got a call from Dan asking me if I’d pick him up and escort him to detox. I did so, frightened that, regardless of his temporary desperation, he’d hit the point of no return. And sincerely hopeful that I was wrong.
Over the next few weeks, I saw Dan a couple times and he seemed as well as could be expected; though it did little to quell my apprehensions. Again, the combination of an addiction which had, once again, reared it’s ugly head, and the cancer- only added to by his having no stable home and a young son with whom he had very limited contact- made it challenging for me to hold the space that God’s love was far stronger than any of these human world impediments could ever be. I know that to be true- but sometimes, in moments of great pain, my heart loses it’s grip on the truth.
He showed up at the garage meeting once, and then the communication lapsed yet again. I had a part in this, as I had not reached out to him either, but it still unnerved me. As each day passed, my not reaching out to him slowly shifted from being a product of forgetfulness to being one of purposefulness, as I had very real misgivings about hearing what he might have to say should he pick up. Then, after the eighth day, I was relieved of this issue. I was sitting in the garage doing step work with two men when my cell phone rang. It was Dan.
The sound in his voice had me quite sure that he had relapsed yet again. He told me that he was sitting in the hospital; now I was sure of it. Then I found out that I was quite wrong. He said that he’d had a doctor’s appointment that morning to check the current status of his cancer. The doctor informed him that the tumor was growing rapidly, putting immense pressure on his brain, and that surgical measures were an immediate necessity for his survival. As to why the phone call to me, specifically, was critical; it had to do with a conversation he and I had shared just after his relapse.
We were sitting outside a meeting when the subject arose. Previous to this conversation, I had been made aware that the tumor, which was rapidly expanding, had now been surgically mitigated twice. The first time, they had removed about 98% of it only to have it grow back to the size it had been just before the surgery a year or so later. In the second surgery, the surgeon had, once again, removed nearly all of it (having made clear that there was a small percentage of it which was essentially irremovable as it too closely resembled his basic brain matter to distinguish the difference). As we sat and talked, we, of course, did not yet know that the tumor was to return yet again:
Dan: I’m scared
Me: I know. Addiction is a bitch.
Dan: Not of the addiction.
Me: Oh. Right. I’m sorry. I shouldn’t have made that assumption. I can’t imagine how frightening the prospect of losing your life must be.
Dan: It’s not that. It’s the prospect of being kept alive in a state that I don’t wish to be in.
Me: Well, if that’s not what you want than it doesn’t have to happen, right?
Dan: Ideally, yes. But you need to have someone who will honor those wishes.
Me: Like a power of attorney, right?
Me: You don’t have one? No one in your family will do that for you?
Dan: No. Anyone of them probably would. But I don’t trust that a single one wouldn’t counteract my wishes to keep me alive at any cost.
Me: Oh; wow.
Dan: I don’t want that. I can’t tell you how much I don’t want that.
Me: So let’s see to it that it doesn’t happen.
(Then we shared about a minute of silence)
Me: Dan, do you wish me to be our power of attorney?
(His eyes welled with tears)
Me: Listen, I’m not trying to insert myself, I’m just saying that I’m willing to do that if you wish.
Dan: I can’t ask you to do that.
Me: You didn’t ask me to do that. I offered. If you want for this gig, I am all in. Just say the word.
The tears began to fall. He nodded his head yes. I embrace him and, as I did, embraced this new and powerful role which I had no doubt my higher power had decided was my next right action.
And so, the reason that, upon his being told that another surgery was imminent, Dan needed to call me immediately, was so that I could make my way over to the hospital that evening, in advance of his surgery the next day, and sign the requisite papers investing me with the power to carry out his medical desires.
I stepped into the room on the fourth floor and there he sat- on the hospital bed with the mother of his little boy- looking frail; worried; lost. I knew, above everything else, that my role here was to hold a space of hope which I initially took on by declaring, “Well, between the dope and the tumor, it certainly seems that we have the data that you are pretty fucking hard to kill.” It brought the touch of levity I was shooting for and we hugged tightly filling me with a deep feeling of warmth.
It took nearly three hours for the nurse to arrive with what is referred to as “The 5 Wishes” paperwork. This document contains within it every single inevitability, possibility and seeming impossibility that has ever, does ever or could ever arise as a product of the surgery he was facing.
As she began to delineate the questions, it initially felt mostly logistical. The first wish series was exclusively informational asking for person the patient was choosing to advocate for them, that persons information (name correctly spelled, address, phone, etc.), and the role they will play.
In the Wish 2 series, things got a bit more challenging: at least for me. This is the place where the patient is taken through a long list of possible scenarios and what they wish to be done, or not done, should these scenarios play out:
- If my doctor and another health care professional both decide that I am likely to die within a short period of time, and life-support treatment would only delay the moment of my death, I wish to ________
- If my doctor and another health care professional both decide that I have permanent and severe brain damage and I am not expected to get better, and life-support treatment would only delay the moment of my death, I wish to ________
- If my doctor and another health care professional both decide that I am in a coma from which I am not expected to wake up or recover, and I have brain damage, and life-support treatment would only delay the moment of my death, I wish to ________
And on and on and on. While Dan seemed to be rolling along with the cavalcade of questions in a competent and unemotional manner, I was finding myself dizzy and overwhelmed with imagining my friend cease to live in every horrible way under the sun.
Then she moved into the third wish series dealing with personal comfort.
- I wish to have a cool moist cloth put on my head if I have a fever.
- I wish to be massaged with warm oils as often as I can be.
- I wish to have personal care like shaving, nail clipping, hair brushing, and teeth brushing, as long as they do not cause me pain or discomfort.
This gave us all an opportunity for a bit of lightness, even levity. I wondered whether the warm oil massages might come along with a happy ending. He asked if he could choose the toothpaste, preferring Aqua Fresh, or might he get stuck with the very disgusting organic Tom’s of Maine. We needed a giggle, and it felt healing; like a little bit of air had been let out of the balloon.
At this point, I surmised that the worst was past, as we shifted into the fourth and fifth wish series, focusing on the patients desires for his loved ones. I knew that Dan had difficult relationships, and quite a bit of distance, with the great majority of his family members, and correspondingly assumed that what these folks would do or not do would hold far less importance than some of the previous scenarios posed.
We reached the final question in the fourth series just before launching into the fifth:
I want to die in my home, if that can be done.
His eyes began to water immediately upon hearing this question. It was then that I understood what I had somehow managed to miss up until then. It wasn’t the illness that was undoing him. It was that he didn’t have a home. He felt the disconnect with his family was past the point of no return. He felt like an orphan. He felt that he was alone.
And he was terrified that he would die alone.
As the questions in the fifth series began to come fast and furious, the tears began to pick up their pace:
- I wish to have my family and friends know that I love them.
- I wish to be forgiven for the times I have hurt my family, friends and others.
- I wish to have my family, friends and others know that I forgive them for when they may have hurt me in my life.
- I wish for my family and friends to think about what I was like before I became seriously ill. I want them to remember me this way after my death.
It was excruciating. Just as the glassy eyes had given way to tears, the tears had now given way to sobs. And it was really not so much the crying that did me in; it was the look of desolate terror which had overtaken his entire visage. It was undoing me. And believing that what he needed more than anything was someone to continue to hold that space of hope and love, I sensed that I was on the verge of failing that task miserably.
I rose and walked to him. I asked him if he was available for a hug. He nodded as the capacity to form words had completely abandoned him. I took him into my arms and he clung to me with a grip which suggested that if he possessed the power to crush me into dust, he surely would have. I hugged him back, matching his level of force. The power of the moment is indescribable. As his body jerked and spasmed in my arms, I was overcome with gratitude that he trusted me enough to allow himself to mourn with such painful transparency.
I whispered in his ear, “I got this. This stuff I got. Regardless of the outcome, I am here. Every step. Every moment. It may not be much. It may not be enough. But the surety of it is iron-clad.” I kissed him softly on the side of his head and then I released him.
I wanted to hold him forever. The depth with which I hungered to take away the fear bordered on voracious. The insatiability of the desire momentarily blinded me from my complete inability to do it. And so I released him. For me, it was a physical manifestation of what I knew full well was demanded of me spiritually. I needed to give him back to who he belongs to. God had done nothing but take care of him to this point, and I needed to silently remind him that God would continue to do just that. And that my thirst to fix could only serve to block his work.
I asked him if he wished me to stay. He responded that he had burdened me enough. I said:
“That wasn’t my question, Dan. Whether you’re burdening me or how much burden I can bear is not yours to decide. More importantly, the burden you are fantasizing is non-existent. What you have requested I do here may well be the most important and blessed thing that another human being has ever graced me with. I am fourteen years sober, yes. I am happier than I ever believed a person like me could possibly be. And yet, nary a day goes by that, at some point, if even for a moment, I don’t fall back into the theory that I carried as truth for the first quarter century of my life; that I am worthless; that I am a fraud; that I am shit. Today, another human being has literally placed their life in my hands. What better evidence could my higher power ever give me to help me see that I matter? You’ve given me a gift, Dan. A gift that I get to have and hold long after your time on this planet ends. A piece of you that is mine forever. If you must hold this truth as a burden, I honor that. Just don’t ask me to join you there.”
I told him to sleep well and that I would be back to see him before they wheeled him in to surgery.
That was approximately twenty-four hours ago. I arrived home about midnight. I walked up the stairs to see Lorri. She was asleep, but awoke at my presence. She asked me how it went and the tears came immediately. I had known for hours that I needed to weep but found myself entirely unable to find the trigger to release the grief. This happens quite often. And, in the end, the trigger that brings me what I need is always the same. Lorri. It’s always the loving eyes and the compassionate smile that gives me permission to go there.
This morning, the love and support of those about me, and I have such an overabundance of that, presented itself yet again in the guise of two fabulous women; both mothers from the school my daughters attend, more than willing to pick up the girls from school and take care of them until Lorri returned from work, freeing me up to give my day to Dan and attend to his needs.
As I sit here in the outpatient recovery center waiting room, it has been about 20 minutes since the doctor emerged from the operating room to report that the surgery was a success and that Dan was resting comfortably.
I don’t know what to think. I don’t know what to feel. But I know this. The power that watches over and undercuts the machinations of this mysterious world in which my spirit sits, constrained in this temporary shell, is magnificent.
I revel in the unknowing. I reel at the glory and the grace and the mercy and the miracles that lift me up and propel me forward as each remarkable day goes by.
Sometimes, in the absence of anything else I can think to say, the only words I need are…