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 Monsters and Money

I had a bad dream last night: a dream with terrible monsters. It's rare for me to have bad dreams and even rarer to have monster dreams. Needless to say, this rare phenomenon gave me cause to ponder the meaning inherent in the work of my subconscious.

I was with a team of investigators exploring a derelict old house. Our hope was solve a series of strange disappearances which had yielded remnants of human tissue but no substantial body parts. Foul play was definitely at work. And a grave sense of evil loomed over this ramshackle structure.

We wandered about the house finding residues of human blood and tissue. We collected samples of everything we found. But when we entered a room that was covered in gore, we stood paralyzed, wondering where to begin.

It soon became apparent that a supernatural force much greater than a mere mortal was running rampant - yet contained in a single house. Once a human entered this house, she was at the mercy of this force. This force - whatever it was - threatened not only to extinguish the life of any human in its presence, but to consume her soul. Thus, this person would be completely obliterated with no trace of her existence remaining.

The monsters that manifested in my dream had human form. But they were grotesque and hideous exaggerations of humans. They were zombie-like: mindless eating machines.

The monsters were organized into different strata, creating a monster hierarchy. Labor was divided into The Grunts, who mindlessly ran amok maiming and mangling humans. Then there were The Overlords: the monster supervisors. There were a couple of tiers of supervisors, kind of like middle management and upper management. Then there was the big CEO monster who was slightly deified by the middle and upper management monsters.

The Grunt monsters were the most immediately threatening as they were the ones responsible for actually killing the humans. But they had no reasoning faculties. So it was easy to confuse them. Once befuddled, they became ineffectual.

The middle and upper management teams plotted their evil take-over of all things good and pure, but were interrupted when the Grunts were stymied. It became necessary to motivate the Grunts anew. Overseeing this massive cluster fuck was the CEO / Deity monster, who lost patience and reminded his workers that the goal was complete devastation, loss and despair. Total annihilation.

In a moment of clarity, I realized that I was in a dream and I could change the course of my fate. I could, for example, conjure the power of flight. This awareness propelled me to climb onto a cement window frame and prepare to leap into the void and soar to freedom and safety. But as I perched on the window frame, I prevented myself from doing this. It was as if I had decided that total annihilation was my lot in life and I must accept that grim reality.

In trying to piece together some semblance of meaning to this bizarre dream, I wondered today whether a fear of death might be at the root of it all. Not my own death. I am actually not afraid of dying. I am, however, afraid of losing the presence of loved ones.

I cannot comprehend death. I cannot accept that the life of a beloved will one day cease and all evidence of their existence will remain in objects. But the quality of that being - their essence - will forever be removed from my experience.

For example, I have been thinking of Lee Wallace a lot lately. He is quite ill with pulmonary fibrosis. And there is nothing to do, apparently. Lee will die as the result of this illness. This awareness creates a great deal of distress at the core of my being. I met Lee just this year and have become incredibly fond of his unique manifestation on this planet. I selfishly wish to benefit from his presence for a while.

I am afraid of Lee Wallace's death. Because it would mean a cessation of his expression. His Voice - the manifestation of his Creativity - will be extinguished. Material artifacts reminding us of his Creativity will remain. But the experience of running into Lee at random places, conversing with him about nothing in particular and listening to him play guitar will be no more. This is inconceivable. It is just wrong.

I have a fear that all Truth, Beauty, Freedom and Love will ultimately be snuffed out by all the ills of the world. The ugliness, prejudice, pestilence and fear of this material world perpetually threaten the fragile beauty of the Creative World. Monsters annihilating Humans.

On a different level, it is curious that the hierarchy of monsters in my dream parallels the hierarchy at Planet Care. This begs the question, "Am I annihilating my soul by working at Planet Care? And am I resigned to this fate, unwilling or even unable to change my it?"

I frequently become frustrated with my life as a Grunt. I feel the need to free myself from the confines of the corporate artifice - not that anything is wrong with the corporate artifice. It can exist within the walls of the derelict old house. I would just rather soar into the fresh air and daylight of expression, allowing the manifestation of my own Voice and my innate, yet dormant, Leader.

But if I were to fly, where would I go? How would I make money? How can I justify leaping into the void when there are bills to pay and health insurance to be kept? I cannot answer these questions. And so, I step back into the house of carnage and accept my fate. Total annihilation. The stifling of my creative voice.

I suppose this dream may have been created out of the dread of an imminent customer service training class at Planet Care.

Periodically, the Grunts of Planet Care are expected to attend Planet Care pep rallies in which they are praised for a job well done and encouraged to do their jobs even better. One such rally is fast approaching. In a few days I will attend a mandatory two hour-long customer service training session. During this session I expect to be taught how to better serve the public. I expect to be taught how to be cordial, welcoming, helpful, and most of all, how to sell more products. Because the bottom line is this: by giving good customer service, we will increase sales.

I will subject myself to the stultifying effects of corporate jargon and attempt to escape alive and unscathed, soul intact. Yet as I sit for two hours, aware of the erosion of my mind, it will be difficult for me to avoid thinking of monsters that want to annihilate me. And me, perched on a window frame, free to fly away, but choosing not to.

Lee Wallace

Lee Wallace became my hero the night of Joe Garrigan's Cover Band Explosion- a biannual charity event in which local musicians become their favorite rock stars. Lee was the guitarist in a Bauhaus cover band which also featured my pal and fellow dj, Chuck Carroll as vocalist Peter Murphy. I was excited to see Chuck's rendition of this Goth Lord and watched the band set up with eager anticipation.

I noticed the guitarist earlier in the evening. He had striking features and a particular presence that suggested depths of experience. I asked a friend standing beside me if she knew him. "Oh that's Lee," she said. "Lee Wallace." I did not know of Lee Wallace, I told her and she seemed surprised. He's been a constant presence in the local music scene for years. Until he got sick.

"He has some terrible lung disease. Pulmonary something.....pulmonary fibrosis, I think. He's been really sick for a while. "

When I hear of a person struggling with some bizarre health issue, I suddenly become largely fascinated with this person - probably because of my own struggle with a bizarre health issue. How is their day-to-day life affected by this condition? How do they cope? After being poked and prodded and tested by doctors, after hearing bad news, after taking treatment after prescribed treatment, how do they push forward? How do they maintain positivity? How do they continue to live?

The Bauhaus cover band played a brilliantly spirited set. My attention was partially focused on the sheer wonderfulness of the overall vibe. But part of me studied Lee Wallace, this person who had somehow escaped my local music radar until this moment. I watched the intent with which he focused on playing. I observed the ease with which he maneuvered the guitar. And periodically, he would giggle uncontrollably. It was the juxtaposition of his intense focus and immense giddiness that made me adore him.

After their set, I rushed over to Chuck Carroll and gave him an enthusiastic high five. I spotted Lee sitting on a piece of equipment low to the ground. I approached him, extended my hand and introduced myself. I gushed some sort of starry-eyed garbledy gook. And he graciously smiled as he struggled to catch his breath.

He could not speak to me. He was bent over, sweating profusely, trying to breathe.

Lee Wallace has pulmonary fibrosis: a disease which impedes the lungs' proper functioning by replacing healthy working parts with scar tissue. This diminishes the lungs' capacity to distribute oxygen to the body. The act of breathing - which most of us take for granted - requires a lot of effort for him. Exerting himself on stage, as he did at the Cover Band Explosion, taxes his body and literally takes his breath away. Lee Wallace rocked out with sheer abandon that night, even though this is the case. This is how he became my hero.

About a month after the Cover Band Explosion, Lee played a solo set at The Green Bean. He was seated with an acoustic guitar. The songs he played were quieter, more deliberately paced than those I'd previously experienced him playing. A 17th century English traditional, a Richard Thompson cover, an early Emerson, Lake and Palmer piece that blew my mind. As an aside, I have to tell this tale:

All week I'd been collecting songs for my radio show on WQFS. The theme was: songs to play for a friend at the end of her rope. I'd asked for suggestions from lots of people and was in the midst of tracking down songs. On the Friday before my show, I randomly thought of Emerson, Lake and Palmer's "From the Beginning." I thought, "Hmm. That could work. I wonder whatever became of my Trilogy album." And then the thought passed.

That night at the Green Bean, I was watching Lee Wallace perform. In the middle of his set, he paused to dedicate a song to a friend of his who was present. A barely noticeable tremor of a giggle rippled through his body as he launched into the instrumental introduction of "From the Beginning." He proceeded to give a fabulous rendition of the song. And I was catapulted back to a year during a tumultuous teenage summer when I listened to Emerson, Lake and Palmer a great deal. And every thought, every feeling and every insanity-provoking crush I ever experienced when I listened to that song in particular flooded my psyche. It was then that I realized Lee Wallace is my psychic sibling.

After his set, he gave me a copy of his cd, The Sea, The Sea, which I took home with me and listened to right away. The clean lines of melody embellished by Lee's technical prowess transmitted an honest and direct beauty. But a tension built inside of me from song to song. And by the time "Clair de Lune," the final instrumental piece, played, I was weeping. I didn't know why.

I lived with this cd in my car and home stereo for weeks. I felt there was an important meaning in it. I would only garner this meaning after listening to Lee's cd repeatedly. I'm quite sure I drove my lovely boyfriend crazy. One afternoon, I was listening to The Sea, The Sea with my headphones on and I heard something I hadn't noticed before. In "Clair de Lune," Lee's sharp, labored breathing is audible in the background. I understood why I'd cried the first time I listened to this cd. I was subliminally aware of the fact that Lee's love of music pushed him to play guitar, violin and sing despite his body not having adequate breath to fully support him in these endeavors.

I'd been wanting to converse with Lee about all manner of things for a while. I finally invited him over for some quality front porch time at the local 504. To my amazement, he graciously accepted. I was waiting on the porch when he arrived. He slowly crossed the street, climbed the few front steps and lowered himself onto the comfy vinyl couch which we proudly use as outdoor furniture.

I immediately became aware of Lee's quick and shallow breaths. His entire upper torso seemed to be violently contracting and expanding in an attempt to provide his lungs with oxygen. I wondered if there was anything I could do to help him. I asked if I could bring him a beer or glass of water. If I couldn't help fix his physical ailment, at least I could be a proper host. Lee politely declined. He needed to simply sit and stabilize.

Pulmonary fibrosis, or IPF, and the condition I have - ITP - have a lot in common. The predominate commonalities are: no one knows the cause of or the cure for either one. The major difference between them is that pulmonary fibrosis is fatal while mine is only potentially fatal. Lee Wallace, my new hero, will die from pulmonary fibrosis or from complications related to it.

Lee and I sat on the front porch watching my housemates come and go while we talked about our respective conditions and our corresponding tendency towards morbidity. We talked a lot about music. I introduced Lee to my guitar. I really didn't need to coax him into playing it. Lee draped his body around it and commenced to making magic. It makes my guitar happy to be played by people who actually know what they're doing.

I wanted to know how it feels to perform music when you have pulmonary fibrosis. I could think of no way to adequately yet diplomatically formulate the question. So I just asked him. He told me about the cover band show in which he played guitar and sang as part of Echo and the Bunnymen. He told me that it was too tiring to stand up, play guitar and sing. It took days for him to recover. In the Bauhaus project, he played guitar only. That was still tiring but much more manageable than standing, playing guitar and singing. At his solo shows at The Green Bean, he sits and plays guitar, which allows him to sing. Lee told me that when it becomes impossible to do this, he will be ready to go.

Lee underwent an extensive application process in order to become a candidate for a lung transplant. This is a risky operation but it is the only way to potentially extend the life of a person with pulmonary fibrosis. It is incredibly difficult to qualify for the procedure. And if you do qualify, you have to find a way to pay for it. There are lots of obstacles in the medical establishment that make this difficult disease even more difficult. Lee and his wife Leslie are in the midst of negotiating all these obstacles.

I suggested that Lee and Leslie move to a more civilized region of the world where health care is a priority. Paris. Geneva. Havana. For God's sake.

Lee said the typical life expectancy of people with pulmonary fibrosis is three years from the time of diagnosis. He was diagnosed two years ago. The doctors tell him that he probably had it for a year before he was diagnosed.

Lee finally had a beer. An Old Chub that I borrowed from one of my housemates. He delighted me with his musical musings via my guitar. Then he shoved the guitar my way and had me play something. Terrified, I played one of my silly songs for him. He politely listened and didn't throw anything at me when I finished.

It was a delightful evening. And I would like to think that there is an unlimited supply of front porch time with Lee. But the reality of the situation is: there is not. Lee will leave the planet much sooner than those of us who know and love him would like unless he receives a lung transplant. But Lee is at the mercy of circumstances beyond his control: an incurable lung disease and the medical establishment.

For the time being, Lee continues to do what he does best: make beautiful music, share it with the people close to him and love his incredible wife Leslie and beautiful dog Stella. The folks at the Duke clinic say that Lee gets around remarkably well for someone with his particular variety of IPF. They do not understand why this is the case. His doctor, who Lee says "is pretty awesome," attributes it to a combination of his "relatively young age, general good health habits, and smart ass attiitude."

Long live Lee Wallace, The Smart Ass!