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.     

Of Tim and Cicada Song

My friend Tim is going to the hospital tomorrow. He's going to have a tracheostomy. Tim has ALS - amyotrophic lateral sclerosis - and needs a tracheostomy in order to breathe.

Tim's voice is not as strong as it used to be. This is in part due to the fact that he hasn't the lung capacity to support the mechanics of talking. But it is also part of the degenerative forces at play in ALS. After his tracheostomy, Tim will be unable to talk for a time. But there is the possibility that he will never be able to talk again.

It was a bittersweet evening last Wednesday when I hung out with Tim and his wife Kaylan at a friend's house. We sat around having drinks and food, talking, singing and laughing against the backdrop of cicadas' song. As the night drew to a close and I said my good-byes, I realized that I may never again hear Tim's voice, as it is currently. While this realization saddened me, I was completely grateful to have had this time with Tim.....to have shared one of his last nights before the tracheostomy with him.

Today, Tim's dad, Hugh, came into Planet Care. He had just arrived from Florida and had stopped in to pick up some food prior to going to Tim and Kaylan's. I was in one of my self-absorbed states. My body has not completely recovered from its bout with cellulitis. It has been a struggle for me to do the usual things required of me at Planet Care with an attentive smile. In fact, my smile feels more like a grimace these days. Part of my brain is in worry mode as I contemplate all the things that either are wrong with me or could be wrong with me. And when customers come through my line, I acknowledge them with a curt nod and grimace-smile.

Hugh appeared to know me. But I was lost in Hypochondrialand. Until he spoke to me.

"Hi Kathy. I'm Tim's dad."

I looked up at him through bleary eyes, allowing them to slowly gain focus. In the time it took my eyes to focus on his face, all proper connections were made in my brain and I understood who this man was.

Tim's dad. Hugh.

We had met several months earlier at Planet Care when he had brought Tim in with him to do some shopping. This was when Tim could still use his arms and hands. I was happy to see Tim. I was happy to meet his father.

Hugh told me that he spends 8 days in Greensboro with Tim and Kaylan, then returns to Florida for ten days, then comes back to Greensboro for 8 days. I don't know why this impressed me so.

I told Hugh that I would be holding Tim and Kaylan and himself in my thoughts and in my heart. I am unable to say "I will hold you in my prayers." For whatever reason, those words are less concrete, less genuine. It feels much better to say exactly where I will be holding a person. Plus, it offers them a visual image to hang on to.

~~~

I am limited in my ability to ease suffering. This much I know. I witness my limitations over and over again. It is a disagreeable sensation to realize that I can do only so much and no more.

For example, there was a woman who came in a few weeks ago. I had just been describing my floater turd epiphany to one of my favorite customers - the old guy with the drawn on eyebrows and overly dramatic nature. The former concert pianist who spent a summer at Haight-Ashby living with members of Jefferson Airplane. I enjoy entertaining him. He enjoys entertaining me. Meanwhile, a woman patiently waited for me to turn my attention to her.

I apologized for the self-indulgent description of my epiphany. "But," I said to her, "once you realize your life mission, it is cause for celebration after all."

She began to look agitated. "I wish someone would tell me what my life mission is," she said.

I watched her countenance darken and offered a meager, "Well, it is important to have compassion for yourself while you're on your quest." She then described to me the feelings of immense sorrow and rage she has been experiencing about the Gulf Coast oil catastrophe of 2010. She feels the death and devastation on a personal and organic level. Her co-workers have grown annoyed with her for talking non-stop about this atrocity. She cannot understand why no one shares her pain. She feels helpless in the face of it all. And her helplessness is causing a deep psychological and existential crisis.

In an attempt to help, I offered this: I approached a Native American wise woman/healer in a very similar state and asked her what must I do, how must I focus my energy and thought? She responded very simply, "The sea beings need us to express our gratitude for them." Upon hearing this, I experienced a stabbing sensation in the pit of my gut. But as I absorbed these words more fully, I understood that to fret and worry about the situation in the Gulf Coast only adds more toxicity to the environment. This is not what is needed at this time. It is necessary to put some love into the environment. And the best way to do that is to focus on the feeling of gratitude.

I shared all of this with the woman in crisis and her eyes filled up with tears. Her face turned bright red from the sheer force of having to hold in the tears that wanted to be unleashed. She nodded in recognition of the truth to these words. And she thanked me.

While it seemed like I'd been able to help this woman, I know that it was only a temporary fix. She will continue to experience her suffering. Because suffering of this nature is habitual.

A few days ago, a woman came through my line. She looked as if she had been ill - thin, frail, a greyish pallor. I asked her how she was doing. That question alone seemed highly invasive to this fragile being. She struggled to be remotely positive. I could tell there were immense volumes of despair locked away in her private library. I caught a glimpse of one of the tattered covers. I wanted her to know that I heard her, that I read the title of one of her books and it resonated as familiar. All I could say was, "I hear ya."

I hear ya.

Her purchases totaled five dollars and fifty-five cents. I commented that her total was three fives, and that had to be lucky. She said she could use some luck right about now. She handed me a ten dollar bill and I made change. As I handed it back I said, "I think your luck is changing. I can feel it." She told me that I was very kind and thanked me. She headed into the cafe to have some food.

It grew busy and I did not notice this woman go to the back of the store. But I noticed her return to the cafe. She had been crying. She had just engaged in an absolute emotional collapse cry, presumably in the bathroom. And she had braced herself up enough to go back out in public. She had attempted to put on the immovable warrior face. But her inner dissolution shattered that mask.

I wanted to chase after her. I wanted to hear her tale. I wanted to just listen. Really listen. And allow her to rail against God and the Universe. But customers were lining up. I fell out of my heart and back into automatic functioning.

~~~

I had been functioning in a similar automatic state when Tim's dad Hugh appeared. I had mentally checked out while the repetitious task of checking customer's groceries ensued. Hugh awakened me from my unconsciousness, and I was greeted by a person whose personal suffering - not to mention the suffering of his son and daughter-in-law - is too great to measure. The significance and implications inherent in Tim's decision to have a tracheostomy are staggering to ponder. As an outsider, my pondering is merely philosophical. There is no way I can understand the nature of having to make the decision to prolong my life by way of a mechanical breathing device.

~~~

It is half past midnight. The cicadas tease me with their night songs - songs that echo restless teenage summers. My heart is restless still. But rather than self-indulgent teeny bopper fantasies, I now entertain the notion that the words that I write make a difference. The cicadas' power is potent. I believe. Yes. I believe.

The World is Not a Cold Dead Place

I've developed the capacity to gauge the employment status of people who come through my line at Planet Care simply by their countenance. I guess it's a skill that reflects the current state of affairs in America. Maybe it's an evolutionary adaptation. Or maybe the reduced capacity to comprehend everything that goes on around me has freed up the sub-conscious space needed to excel in Extra Sensory Perception. I have experienced several ESP moments of late. They are mundane insignificant moments. But I'm listening to an inner knowing and trusting it is right and that is all that matters.

Case in point: today a woman who used to work at a tutoring facility in the same complex as Planet Care came in. I hadn't seen her in quite a while. In the past, her demeanor has always been extremely pleasant. She has one of those radiant smiles that seems effortless. She has a spunky, energetic gait. The atmosphere around her is relatively clean. By that I mean she doesn't seem to have a lot of psychic baggage which she carries around with her.

Today, her countenance seemed dark. An edginess permeated her atmosphere. Her smile seemed much more forced. She looked as if she had gained weight and her energy level seemed greatly reduced. I asked how things were going "down the way" but felt I already knew the answer. She told me she'd been laid off. And then the anger and frustration revealed themselves.

She's been without a job since February. She's collecting unemployment, ("Thank God!") "But," she says, "I need a freakin' job! I applied for the Community Coordinator position here. But the lady never got back with me. I emailed and emailed and never heard from her. Has that position been filled?!"

It has.

"That pisses me off! She never got back with me! Man! That really pisses me off."

The heaviness grows as the day progresses. People are tightly wound, quick to react negatively to any incident that conveniently presents itself. And as I ward off the onslaught of harshness, I contemplate the events of yesterday: of taking food to a friend with ALS / Lou Gehrig's disease, Tim LaFollette and his wife Kaylan Szafranski LaFollette. Tim's legs have stopped working. His right arm has stopped working. His left arm still functions but it seems like fine movements are difficult if not impossible to maneuver. His face twitches now, an indication that the muscle movements there are on their way out the door.

Tim has to be hoisted by way of a crane-type device and positioned onto a toilet every time he needs to eliminate the contents of his bowels or bladder. This is an elaborate process that involves the application of a body sling which is hooked up to the crane device. The crane is then manually pumped to lift Tim's body. After Tim is in the air, the crane is rolled to the desired destination. In this case, the destination would be a bedside toilet, much like a training potty for children only larger.

Kaylan demonstrates the entire process for me. And Tim eliminates his bowels. And he says, "Welcome to the Human Condition, kathyclark."

And the lady from down the way is out of work.

And I am acutely aware of the fact that with every breath I take, a new gush of oil enters the delicate oceanic ecosphere. And I seriously don't know what to do with that awareness. With each passing moment, life is destroyed. Our most generous Earth Mother has been raped and pillaged for so long and now her wound bleeds openly and steadily in the name of Greed. Our most benevolent giver of life now takes it away. Because we have misused and abused her resources. It makes me want to weep.

And I stand at the check-out line at Planet Care and must pretend this is not on my mind and that I am happy and enthusiastic about my job. Because so many people don't have one. A job.

And I must listen to the mundane complaints of the people around me as if they matter. As if weather matters. As if feeling bad mattered. As if personal indignation matters. People talk all day long about the most trivial shit. This is what we do. It's another aspect of the Human Condition. We no longer know how to be grateful.

The world is far from perfect. But I have not abandoned all hope.

A girl came through my line with her father. She was amusingly garrulous and self-absorbed in the way that teenagers should be. She brought a happy vitality to the scene, like a ray of sunshine on a cloudy day. Her curmudgeonly father tolerated her in a good-humored way. When she mentioned her upcoming birthday and how she wanted a gift card from Planet Care, I asked her the date of her birthday. And an odd thing occurred: immediately upon asking, in my mind I heard the answer. June 28th. I was surprised and I spontaneously high-fived her in celebration of my ESP moment. This was a very cool sensation. Like catching a wave at just the right point and riding it all the way to shore. But then I became greedy for that vibe and asked what time of day she had been born. I was thinking it must have been around midnight. She wasn't sure, but she thought it had been 10:30 in the morning. And this is what happens when greed rules your thinking. You miss that wave.

These moments of supreme reality and the interactions that occur during them are all that currently matter to me. Well, these and the act of making things. The Earth needs creativity now more than ever. And creativity can manifest in a simple greeting or casual exchange. That's the fun of it, you never know exactly how it will manifest.

So while I observe the results of people motivated by greed and the quest for power, while I watch people destroy the planet and tear each other down with words or violence, as I feel increasingly powerless in the face of atrocities, I look for ways to put something of value into my immediate now. It isn't always easy. But I maintain hope in the simple awareness that wherever there is real human interaction, there is hope.

Which brings me to the title I selected for my blog. It is the name of a record by the band Explosions in the Sky, which I have on vinyl. It is a double album with music on three of the four sides. The fourth side has birds etched into the surface of the vinyl. The label on side one reads "The Earth is Not a Cold Dead Place." The label on side two reads, "Because you are listening." Side three reads, "Because you are breathing." In the blank area between the etched birds and the label on the fourth side, the following words are etched in a circle so that they can be read infinitely: THE EARTH IS NOT A COLD DEAD PLACE BECAUSE YOU ARE LISTENING BECAUSE YOU ARE BREATHING THE EARTH IS NOT A COLD DEAD PLACE....."

And that about sums it up. All hope is not yet lost....as long as I keep writing.....as long as you keep reading......all hope is not yet lost.