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.     

Five Unsolvable Problems, One Moral

So my mom calls me up to tell me about a special family get-together and wants to know if I can be there. I tell her I can be after I finish my work day. She seems pleased.

As an afterthought, she asks, "How are you doing, anyway?" It's been a few weeks since we've had a substantive conversation, so I tell her that it's been a challenging time for me. Two women I knew died of breast cancer recently. And my friend Tim is in the hospital. He's really sick. And I can't visit because of my compromised immune system. This makes me sad. It's just been difficult processing all of this.

My mom says, "Well Kathy, you need to find some healthy friends!"

I guess my mom wasn't in the mood to have a substantive conversation.

This remark has been rolling around in my brain ever since that night. I am relatively certain that my mother intended it to be a joke, a tactic to lighten up the conversation. But I took it much more deeply to heart than that. Because I've learned from experience that hurtful remarks designed as jokes or jabs reflect a reality that honestly exists in the mind or heart of the deliverer of such jokes or jabs. So in a sense, I believed that my mother was suggesting I find healthy friends.

This comment made by my mother presents various problems. Problem #1: I am part of the care-giving team that supports Tim LaFollette during his challenging battle with ALS / Lou Gehrig's. Am I supposed to say sorry Tim....I can't hang out with you anymore because you're sick? Maybe when your ALS goes away, we can be friends?

Problem #2: I'm sick. I have an auto-immune condition that will never ever go away. The treatment that I undergo weekly for this condition is basically a band-aid that covers up an issue no one knows how to fix. And I had cancer last year. Does that mean I can't be friends with myself? Does that mean that healthy people can't be my friends?

Problem #3: I go to the cancer center every week for treatment. I encounter a lot of sick people in the communal waiting area. I usually talk with them briefly while we wait for treatment or for a doctor's visit. I try to be kind and compassionate. Because I know what it's like to be in their shoes. And I want to help them feel a bit of happiness, a bit of hope, even if only for a second. Am I to stop interacting with these folks? Would I not be hypocritical to call them sick when I, too, am sick?

Problem #4: How does one define "healthy?" I would venture to guess that most everyone has something wrong with them. Whether it's hemorrhoids, depression, arthritis, a bum knee, a bad back, a lung disease or a headache: we all have an ailment of one kind or another.

Problem #5: What does one do if a "friend" gets a cold or has a headache? Does one stop being their friend until the temporary ailment passes? And then how can one be sure their ailment has totally passed and they aren't just saying they're well in order to be one's friend?

My mother's remark made me angry. But I was only partially angry at her. Mostly, I was angry at myself for not having the presence of mind or the wherewithal to call her out on the hurtfulness of it. Rather than take care of my feelings in the moment by saying, "Wow Mom. That hurt," I choked. My throat closed up. I sputtered out a defensive response, "I have healthy friends, too, Mom and we do fun things together."

I vow to be more vigilant about calling out a hurtful moment in the moment that it transpires. My happiness is far more important than my hurt. Life is just too short.