Ponderance

A morbidly obese man comes into Planet Care from time to time. There are periods in which he comes regularly.  Then there are stretches of time in which I never see him.  For a while, he came in nearly every day.  He would be wearing workout-type clothing and look flushed and sweaty as if he'd been exercising.  He would carefully select food from the salad bar, purchase it and sit in the cafe to eat.

Over time, I could tell that he was losing weight.  I knew it was an immense challenge for him.  But he seemed to be on the right track. I felt compelled to tell him that I noticed the results of his efforts.  But I never found the courage to do so.

He came into the store the other day.  He looked as if he'd gained some weight since the last time I saw him. He seemed to be having trouble walking.  He leaned onto the shopping cart in front of him, walking slowly through the store.  He came up to the juice bar and I was overly nice to him.  He would not look at me.  He pondered the selections and asked for a sixteen ounce vegetable juice containing carrots, kale, beet, cucumber, garlic and ginger.  I promptly made this juice for him and handed it to him with all the love I could muster. He never looked at me. 

I watched as he walked to the nearest cashier.  He wore shorts which revealed the dark red of his calves from above his socks nearly to his knees. I know this to be a bad sign.  One of the many complications occurring when one's body cannot handle the excess weight.  I know that obesity could kill this man.  I know it is making his life extremely challenging.  I know that this man has a beautiful starry-eyed daughter who seems to love her father. I know he has everything to gain by working very hard to improve his health.

I know this: I am rooting for him. 

~~~

A woman comes into Planet Care from time to time.  She carries with her a dark cloud.  She speaks as if she is constantly exasperated.  She rolls her eyes in disdain without even realizing she does this.  She orders me to make her a smoothie drink.  She watches as I put the ingredients into the blender and corrects me when I put in too much of one ingredient or too little of another. I feel her exasperation permeating my atmosphere and I sigh rather loudly.  In my imagination, she feels victorious by having made me exasperated like her.  In my mind, she feels vindicated by my exasperation.  And I remember a meme I ran across recently on fecesbook: 

I delivered the smoothie drink to the unpleasant woman and smiled, graciously thanking her and saying, "I hope you enjoy that." 

~~~

An elderly man, very smartly dressed, was walking towards the doors of Planet Care.  On his way out of the store, he paused to pick up one of several free publications on display.  As he paused, I heard him sing, "Que sera, sera.  Whatever will be, will be.  The future's not ours to see.  Que sera, sera." 

For some reason, this struck me as a bit menacing.  I imagined Nick Cave doing a version of this sweet little ditty.  And I thought how very true to life this juxtaposition is.  

The sweetness and the menacing are all but a razor's edge apart.  Darkness in all its myriad forms threatens to envelop us.  But the fundamental sweetness and delicacy of Life permeates even the most menacing darkness.  

Allow the darkness.  Allow the light.  Do not deny yourself the experience of either.  There is no use pretending that darkness does not exist and there is no use pretending that the darkness never ends.  We can deprive ourselves of joy just as we can deprive ourselves of sorrow.  Both will nourish us.  But only if we can allow them to be what they are: temporary states.  And no more. 

Once in Love

I saw the ex-husband guy last night. No matter how much time passes, seeing him is awkward. Maybe the awkwardness arises from the realization that love doesn't die. No matter how much you wish it would. Or possibly it arises from the embarrassment of the memory of a certain time in which I lost control.

This morning, I am filled with a vague sadness. I long for a sense of peace or resolution that I believe will never come.

A wise woman once told me that we are born with a very particular need for a very particular kind of love. No one knows how to give us that love. Not our parents. Not our partners. Not our friends. The only person who knows how to give us the exact kind of love we need is ourselves.

In keeping with that notion, maybe certain relationships arise out of the need to manifest a very particular expression of love. Steve and I definitely created our own world. And for a time, it was a lovely world. Two truly beautiful and amazing beings came onto the planet as a result of that world: our daughter and our son. And this is an accomplishment. No matter what became of the relationship.

Still, it surprises me that there is a lingering grief. When will the grief die? All that I know to say is that Steve and I made a life together. And we created a forum in which to express a very particular kind of love. That expression was unique. It will never have another forum. Because Steve and I together were unique. And even though we cannot be together - because we just can't logically figure out how - the heartstrings are still entwined. And unfortunately, always will be.

I say unfortunately because in this moment, I feel a huge regret for losing the ability to manifest love with Steve. It seems there should be a lesson here. Probably it is so blatantly simple I just can't see it.

Another wise woman told me recently that no matter what your spiritual beliefs, the reality is this: we must move towards Love, towards acting from a place of Love. The opposite of Love is fear. So whenever we experience fear, remember that we want to operate from a place of Love. Choose Love over fear. Love is all you need.

One might say I chose fear over love in my relationship with Steve. But maybe a greater Love was calling me in its direction. By abandoning that relationship, I was forced to walk alone for a while. Over the years, a love and compassion for my self have unfolded. I think it was necessary to be alone to do this. And I think that through striving to know and love my self better, I found an important teacher: Danny Bayer, whose absolute love for, acceptance of and patience with me have helped me grow in ways unimaginable.

I believe it is still possible to summon Love from the ashes in which I attempt to smother it. I'll uncover it a little, dust it off, and see what I can see.

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!

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.