A Metamorphosis: The Death and Life of Tim LaFollette.

September's end brings a desolate loneliness. I feel adrift, without anchor. The waters are calm on the surface, but I can tell a storm is brewing. I haven't much stamina left. Still, I must weather the storm.

Tim LaFollette's body died on a Tuesday. I was driving back to Greensboro from Carrboro listening to Nick Cave and the Bad Seeds' The Good Son, a particularly mournful record filled with songs such as "Lament," "Sorrow's Child," and "The Weeping Song." Melodramatic, self-indulgent and beautiful. I had just finished meeting with a naturopath, who helps me with physical and emotional maladies.

I had spoken with her about the news that I'd received the previous Friday that Tim was in a coma, not being fed and not expected to last past the weekend. She asked whether I'd been to see him yet. I told her I had not. She recommended that I go see him, that I hold his hand, kiss his forehead, tell him I love him so he'll know. Because people in comas can hear, can sense what is going on around them, she said.

Once home, I was filled with an overwhelming fatigue and laid down for a brief nap. A knock on the door awoke me. By the time I rose to answer, the visitor was gone. Very soon after, I received a text message saying Tim was gone.

One more man gone One more man gone One more man......

The news spread like wildfire on the social media outlet to which we all have become addicted. My friend, Lee Wallace, called to say he'd heard the news and to see how I was doing. I told him that I might need some Stella time.

Lee Wallace has a dog named Stella that I take on walks. Lee will be able to walk Stella again after he gets a new set of lungs. But for now, I enjoy the pleasure of her company whenever I decide I need a jaunt and when schedules align.

I picked Stella up from Lee's house and we proceeded along one of her favorite routes: down by Lindley Park Elementary school, briefly along Market to the Arboretum. It was a particularly beautiful day with the sky a vivid hue of deepest blue and clouds aggregating in what appeared to be regular patterns throughout the sky. It seemed as if they were worshiping from their perches on church pews. The shadows had that depth that comes only at the end of summer. Delicate fragrances of fading flowers hung on the air. Everything was a miracle to behold. And I thought, what a great day to die.

Stella and I walked for a very long time. And when I decided it was time to head back to Lee's house, I began to cry. Depths of emotion were welling up and I could not allow their ultimate release. I cried as much as I comfortably could and took Stella back to her backyard paradise.

Lee reclined in a hammock under an immense spread of trees with a book propped on his chest and music by his side. Stella and I joined him for a while: Stella, digging a hole in which to cool down from her walk, I chatting with Lee about nothing in particular.

An earthquake occurred. Neither Lee nor I felt it. Lee's wife, Leslie, called to alert him that this had just happened. At this news, I planted my feet firmly on the ground as if expecting any residual rumblings to reveal themselves to my soles. I breathed extra deeply as if there might be a trace of a quickening of the air. But there were no revelatory sensations.

For the rest of the day and a few days after that I felt slightly off balance. I kept bumping into things and was more forgetful than usual. I wandered around in a confused state wondering if the earthquake had tilted the earth on its axis a bit.

Tim's memorial service was to happen a month from his death. Like so many people, I use the formal funeral format for official grief processing. In this instance, I would have to postpone this process, which is a lot like taking a shit. You just need to empty your emotional colon. Often, there is lots of shit built up and you must undergo a series of prolonged shits. Eventually, in theory anyway, all the shit comes out.

I was constipated for a month.

At last the day of the service approached. By this time I'd endured a couple of additional unhappy incidents in the month of September and was still reeling from the most recent. I felt, almost, like there was no grief for Tim, like I had somehow miraculously processed it all without really crying and going through the usual grief-like sensations. However, I realized that there was a very real grief hanging out in my emotional colon and that it might be expeditious to use the forum of Tim's memorial as a sort of emotional enema. A colon cleanse was needed.

I went to the service directly after work in extremely casual jean, plaid shirt and tennis shoe attire, which I think was indicative of my recklessly non-intentional attitude towards this event. I was, almost, disrespectful. Yet I played the part of the participant with a modicum of small talk and a friendly smile upon greeting people I knew.

I did not expect to be overwhelmed by grief. I did not expect to experience a sudden realization that death is final, that Tim is gone, that I will never again be able to converse with him, that I will never offer him comfort in the form of a foot rub or a kiss to the forehead. I did not expect this surge of emotion to present itself so powerfully. You'd think I'd be an old hand at these matters. But no. The brilliance of this life is that just when you think you've got it all figured out, the earth quakes without your realizing it. And you have to make heads and tails of everything that's just been flipped.

In a Quaker-style service, people sit in silence and speak only when moved to do so. I sat in silence trying very hard not to break into hysterical sobs, not to wail aloud with the sort of primal abandonment I enjoy. I attempted to maintain dignity. Likewise, I tried very hard to prevent myself from saying anything at all, thinking that responsibility should reside with those who were closer to Tim than I was.

I controlled my urge to have a primal wail. I maintained a degree of dignity. But damned if I didn't get on my feet and start talking.

Words came out of my mouth with very little intervention from my brain. I remember having the desire to speak concisely. I remember having the desire to keep myself from crying. But the emotion came rushing forth. I stopped myself to regroup. I paused and looked down at the ground as if to say Support me harder, dammit! Hold me up, here! I'm caving! And I continued to speak. But my voice grew higher in its pitch and I realized it had become that stereotypical Mary Tyler Moore voice that betrays emotion when trying to be so strong. I somehow finished what needed to be said about Tim, about his generosity and kindness, about my feelings of inadequacy in the face of the tasks that needed to be met for his care, about his patience with me while I grappled with all this inside myself as he taught me, he himself, how to more accurately suction the phlegm from his lungs.

I sat down. I received a gracious pat from the people on either side of me. And I sat. And I thought the wall had broken and the emotion had been let out. Or to revert to a previous metaphor, I thought the poop had vacated my bowels and the toilet bowl had been flushed. But then I saw Lis, who is my sister, my heart - one of those rare beings with whom one connects so completely that words are not necessary to achieve understanding.

We hugged. And I shuddered with silent sobs against her shoulder. I felt as if shock waves of grief transferred into her delicately defined frame from my crude one, but somehow they reverberated back and forth until they dissipated. I confessed to her that I had not seen Tim for six months, that I had decided to take a break from doing my weekly home care visits in order to focus on some of my own challenges. Lis had done the same. She said that Tim understood. That it was alright. She conveyed a sense of love through these words and I felt absolved of my sins.

The saga of Tim LaFollette is not over.  His entire journey with ALS is documented in the "Often Awesome"  web series.  People continue to watch it, share it and be inspired by Tim.  The Often Awesome Army continues to raise funds to help those living with ALS, it continues to raise awareness about this wretched disease, and it continues to be bound by the love of one great man.  But beyond that, Tim left an indelible mark on my psyche.  He taught me about love and service.  He taught me about generosity of spirit and courage.  I have no choice but to carry his teachings with me for the rest of my journey through this life and hopefully pass them on to someone else.

Tim LaFollette lived a life and died a death of transcendent beauty.  In this way, he is eternal.     

Blood

The Cancer Center makes me feel like crying.  Often, I am numb to the experience of being there.  But days like today, I have to stuff my feelings way down in my gut to prevent myself from making a larger-than-life spectacle of myself.

I enter the lobby and check in with a desk person.  I wait in the lobby for a phlebotomist person to call my name.  I go into the lab.  The phlebotomist person swabs my arm with alcohol and stretches a thick rubber band around my upper arm.  Depending on who my phlebotomist person is, we may chit chat about metaphysics, gardening, motorcycles or simply jab each other with good-natured jokes.  Then my arm gets jabbed and blood gets extracted and collected in a tube labeled with my name and other identifying factors like my birth date and probably a case number.

My little vial of blood travels to a room where people with microscopes and other machines count my platelets - as well as other things like my hemoglobin, white blood cells and absolute neutrophils.  My neutrophil count is 3.4, which appears to be low, indicating I am at greater risk from "infectious
agents both inside and outside the body."  Great.

But I digress.

The stats are entered into a computer.  A nurse person in the treatment area/chemo room, takes this information and delivers it to the pharmacy.  The pharmacist person analyzes the data and determines the weekly dosage of NPlate for me to receive.

Around this time, I am called back to the "flush room" to wait.  The flush room is a cubical tucked away in a corner of the chemotherapy treatment area.  Directly across from it is another cubicle where patients receive chemotherapy.  On either side of that are other cubicles. And this is how it is: each patient is in her own cubical.  Each patient has a television to watch in their own cubicle.  The cacophony of televisions is disconcerting at times.  Why doesn't the cancer center supply headphones?  I am glad I do not have to lie around and receive chemotherapy in that environment.  What a complete drag.  I used to have chemo treatments at a cancer center in Kernersville.  It was much smaller and not as busy.  There were no t.v.'s.  I was pretty comfortable there.

Again, I digress.

I wait for the pharmacist to mix up my dose of NPlate.  Meanwhile, a nurse takes my temperature and my blood pressure and makes chit chat before excusing him or herself.  I usually wait ten to twenty minutes for the pharmacist to deliver the NPlate.  Once it arrives, the nurse swabs my arm, the same one I had blood drawn from, and injects the NPlate.  Wham bam and it is done.

This is the ritual in which I participate weekly.  It rarely varies.  There was one week in which my platelet count was so low, I was admitted to the hospital on the spot.  That only happened because I missed my treatment the previous week.  I had the brilliant idea that I would give myself a break from it and go to the beach.  It was a nice break.  But it had ramifications that lasted a couple of weeks.

The emotions vary weekly, however.

One week, I sat in the flush room waiting for my shot and the woman in the cubby immediately in front of me starting throwing up.  I couldn't help but watch.  She sat in her chemo chair with a big plastic bag held in front of her and tossed her cookies.  In all the years of being in a treatment room, this was the first time I have ever witnessed a person lose their lunch.  And as I watched this, a strange feeling crept into my psyche that manifested in the following thought: 'I am not sick!  I do not belong here!  How can I ever get better when I am constantly subjected to the vibe of sickness?!  It was a form of indignation propelled by rage which soon manifested as depression.  I am not sick.  I am not sick!'

Today, I watched an elderly woman across from me as she received a bag of blood.  Her husband sat with her.  They were both thin, though the man looked solid whereas the woman looked frail.  The man had a kind face.  He smiled sweetly at the nurses as they darted in and out.  But he never spoke.  His creased forehead betrayed a worried mind. His eyes betrayed a weariness.  But he patiently sat by his wife.  She was tired, barely able to hold her eyes open.  Every once in a while a sound would cause her to open her eyes and she took in the world around her.  But she soon closed them again.

There was a rural aspect to the couple.   I tried to imagine what they did for a living, if they still work.  They appeared to be in their early 70's.  The man wore a flannel shirt and jeans.  His shoes were nice leather shoes.  Probably his Sunday best.  I imagined he put those on specifically to wear to the Cancer Center. His work shoes, he thought, were not suitable. The woman wore a bandanna around her bald head and an over-sized t-shirt.  A blanket covered her lap.  She wore oval-shaped wire framed glasses.

I watched her and wondered about her life, about their life together.  I was overcome with the urge to get up from my seat in the flush room and go talk to them.  About nothing in particular.  All for the sake of giving them some love.  Just that.  Just hope for their future together.  Just hope for a bit of ease in life.  But I sat there.  Watching the bag of blood slowly empty into her arm via the long line of tubing. Mesmerized by the process.

My platelet count was low today.  It had been holding steady in the normal range for a few weeks.  And I'd actually begun, once again, to hope that I'm going to get well.  That a day will come when I won't need these weekly treatments.  My platelet count today shot that hope down.  Dashed it against the rocks.

I will never be well.  I am not sick.  But I will never be well.

Is it any wonder why I have trouble planning things in advance - why, for example, I cannot entertain the notion of going back to school in pursuit of training for a viable career? Something that I'll be able to do when I'm 60? I have no guarantees that I'll be here that long.  The drug that is injected into my blood weekly has numerous side effects, one of which is increased malignancies.  Since I've already had cancer, this sounds like a raucous cancer party waiting to happen.    

After my injection today, I walked out of the flush room, past all the cubbies filled with people receiving some treatment or another.  I walked down the long corridor from the treatment room to the lobby.  The front door is inhospitable.  I do not care to pass through it.  In a way, it's easier to remain in the cancer center where it is automatically assumed that something is wrong with me than to go out into the world at large where I am perceived to be normal.

I am far from normal.

I have a body that wants me dead.

I have no ambitions in the monetary realm.

I have a vivid imagination that takes over my logic center more times than is useful.

I immerse myself so completely into my creative realm that at times I sacrifice going to bed at a reasonable hour or leaving for work in a timely manner.  My creative realm is much more important to me than time or money.  And that's fine.  It's just every once in a while, I'd like to feel "normal" by other people's standards.

Additionally, when I pass through the doors of the Cancer Center, I must again walk among the senseless violence that plagues the world.  War mongers.  Spree shooters.  Blood runs freely in streets and movie theaters.  The precious source of life that we all take for granted gets emptied out of people against their will.  I willfully allow blood to be drawn from my arm once a week.  But victims of guns did not consent to have their blood emptied out of their bodies. 

Once I pass through the doors of the Cancer Center, the careful environment arranged around the sick falls apart.  And the world at large is perceived.  And it is hard to bear at times.  

I'd like to feel a bit of ease in my life.  I guess I was just projecting my own desire for ease onto the woman directly across from me in the treatment area of the Cancer Center.  Or maybe not.  Maybe there is a universal desire for ease that we all experience.  Maybe I am merely finding this universal desire a bit too compelling to ignore.

I hammer on my keyboard as if the words that come out of my brain matter a damn.  I know that in the larger schematic, they don't.  But for the moment, they are keeping me alive.  They are the long line of tubing connected to the bag of blood running into my veins. They are my medicine.  I allow them to flow forth, hopefully bestowing a bit of lifeblood upon the reader.