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.
~~~
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.
beautifully written, kathy. thank you for such a gift.
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