thoughts with substance

Erin,I had a chance to view your blog late last might and I must tell you that at first, I thought you were terminally ill. Your thoughts and feelings and isolation are so similar to what I go through, and I am young, and I am terminal. When I continued to read and read as you spoke of 'friends', I too could relate and unfortunately, this IS human nature and people just do not like the idea of having to deal with their own mortality.I believe it takes a courageous person to participate in a study, for what ever reason and hope that your intentions are pure and that you will NOT forget the isolation. You in turn, will walk where few want to, less understand, and too many have been before. Keep blogging! I have a site that I am creating about being terminal, my thoughts, my journey called: a complete piece. Soon I will invite the world into mine and I invite you as well.
With great respect,
thewarrior


I just got this comment, read through the entire blog all at once. It made me cry, question myself, and be thankful all at once. It gives me a lot of perspective, if only in a removed sort of sense. Or rather, it reminds me of a perspective I used to have, but selectively removed myself from it. At age nine, I watched my father go from what we thought was completely healthy to permanently hospitalized in a matter of days. He just never left. It's hard to think about, it's hard to watch happen. Like you said, Eric, no one wants to be reminded of their mortality. I've pushed this out of the forefront of thought and was in denial for so long that somedays I questioned whether or not it had actually happened. The mind is very strong, for better or for worse. I'm very lucky to have my health, I'm doing this study voluntarily and only because I'm so healthy. I had to be screened head to toe looking for everything from kidney stones to heart problems before I was cleared to participate. But I'm experiencing a significant amount of isolation, the extent of which I won't easily forget. The amount of empathy I'm gaining from this is astounding though.This has touched on a lot of raw nerves and hidden triggers, which I'd like to elaborate more on... but not now. My brain is too disjointed to really write any more for now. I'd like to take a nap, but I'm not allowed to. This would be a good naptime. -sigh-I shall return.
posted by Erin at 17:26

Try to be reasonable in the way you grow, and don't ever think it is too late. It is never too late. Even if you are going to die tomorrow, keep yourself straight and clear and be a happy human being today. If you keep your situation happy day by day, you will eventually reach the greatest happiness of enlightenment.-Lama Thubten Yeshe, The Bliss of Inner Fire

the black crow

saturday 29.04

It is becoming an addiction, daily, sometimes half days, that I log onto and into and I change a post, the appearance, before I send out the invitation for viewing and I wonder, why, I hesitate and invite people to see and discover. I use the telephone and talk freely with confidants and sometimes a less than active listener about my plan to release thoughts, random, but my thoughts and I explain, almost rationalize my purpose.

The fear prevents me from inviting, the same fear that I convince myself I have battled and lay claim to. The fear to whom I standing with, a sword pointed high to the sky and a boot, larger than size ten, smashing its existence. I stand statuesque. The same fear that keeps me up at night, well into the night, night after night and finally, my body releases and I release and I sleep for a while, an upon awakening, assess my medical and reach for my assortment of pills and shake my head furiously and fast, wondering and calculating and predicting how many more days I can endure, I will be forced to endure. And over and over again, thoughts and conversation are played and the record skips, but continues to play and I listen and cannot shut it down nor off and the sound, the scratching sound is senseless and mine and permanent.

I look deep inside and wonder why, medical science has failed me, why there is no concrete answer, no hope to cling to and I sit with my feet planted, in loose soil, waiting to be transplanted into something more permanent so I can once again be nourished and appreciated for me. I wait, anxiously, and look at the calender and knowing that I am in the moment I try to refocus, but the past and the future stings and the bite tears through the first layer of flesh without hesitation and continues to destroy down further and further.

No phone calls, the phone stops and those that call have become so distant and the excuses, pity excuses sadden me and I know I am alone.

I have been here before and felt this before when I was a teenager. I lost control and punished myself for the loss. I stopped eating and when I did, forced a finger and sometimes three to four times a day, down my throat until the food emptied before me. I played a game for awhile and then it was no longer a game, it was real and I could not stop and my self esteem diminished, my body skeletal, I rose, dusted the dirt of my shirt and put tea tree oil and band aids on ME, my heart and continued without ever really knowing why I hated me so much, why I had no will to exist, but I had will because I wondered and did prosper only to find myself in a situation today, my today, that is eerily reminiscent of the past only this time, there is nothing to bandage and the wounds continue to bleed and slowly but surely, I will be forced to succumb to my eventual mortality. And if only I would here one, not two, but one word of hope, the notion of or a hint in that direction I would start to run, sprint somewhere from nowhere and I would not look back and I would run, destination unknown but it would feel fine.

each day is different but the feeling persists over and over and over...Constant, somewhat amusing to Warhol I believe, as he lived the feeling too.

friday 28.04

I tell the story of the trees today, oak I think, and speak of energy, knowing that during the winter a tree goes dormant, appears dead but blossoms in the spring, showing a new growth with renewed texture, standing tall as it signals the change of the blow wind. The energy in the tree is constant and changes only to reappear in a different form season after season. And then I wonder about the single tree I notice out of my peripheral vision that is different. It has no new growth, appears frail and weak and upon closer examination, is dead. A question arises and I have no answer. Where did the energy from this frail tree, the dead tree go? Is it fertilizer for the soil? Is it split into pieces by another human, to frail to stand on its own so now rats and squirrels will call it a new abode? Is it kindling to create warmth for the next winter season? Is it fuel for the elements of nature to cause a fire? Is it food for the beetles and spiders and roaches and ants and bacteria to feed off of or is it simply gone...

And as I glance back at the tree again I do not ask why this tree, but understand it takes energy to answer my probing questions, energy my body must now conserve...

G-D is a paradox

On January 17, 2006 at 9:23PM, Submissions wrote:

Dear Eric Scott Lane
Thank you so much for your letter. It means so much to us to know that Rett has a positive impact beyond his life on earth. I am so sorry to hear of your illness, and we will remember you in our prayers. God may not cure you, but he will walk with you through the journey, and can bring moments of great joy out of the pain. May you abide in his peace and love.
Dana Nearburg
On January 16, 2006 at 3:13PM eslane wrote:

16 January, 2006

Charles and Dana Nearburg,

You do not know me nor did I know your son. I was not a friend nor a mere acquaintance. I read about your son in this Saturday's Dallas paper, which itself is a rarity, as I am not one who is known to read the paper, let alone the section pertaining to a Memoriam. However, something, that deep place inside we go for comfort, begged not only to read about your son, but experience his website.

What an awe inspiring visual and emotional display of works, thoughts and remembrances. After finishing, I felt I have known your son, from a spiritual place and I felt and feel a connection. One deeper than being an artist (abstract figuratism, mixed media on canvas and paper) and one beyond having a distant relative teach at MICA. One deeper than residing in Dallas and one deeper than recently returning home to be with family while I battle a terminal illness. It is one that re-confirms my belief that G-d is a paradox.

I was sent to Rett's site for a purpose and thoroughly enjoyed you and yours allowing me to experience a part of your son's life, his thoughts and his creations, both good and bad. What an interesting way to display a remembrance. It is powerful and speaks to the soul. I have been spoken to.

With great honor and respect,



Eric Scott Lane

thursday 27.04

My thoughts are clear this morning although my body aches. My urine burns and I realize that I continue to walk this path, with torn blisters and infection spreading, alone, in shoes that provide little comfort on my journey...I walk alone. I do not desire much socialization at the moment and revert inward, as I did while swimming laps for years prior to competition and I sing, and I ponder and I pass time and I try to gain strength and ignore the distant future and remain focused on the here and the now and all the tasks at hand: my upcoming trip to California, Ashley and the other dogs and briefly, but with convention, I speak with my parents, only to be interrupted by a ringing telephone (and this time not mine) and walk away promising to finish my thought, and I will eventually, but not today.

...the cubicle

a place to rest weary eyes, ponder deep thoughts and prepare to surrender my soul.

wednesday 26.04

Today Eve, the registered nurse from hospice was here. She called and shared her intentions, explained why she was running late and arrived late, keeping me from accepting an invitation to join my parents for lunch...They returned before Eve arrived and this too showed upon their faces.

My space has been situated, now, so that Eve can speak with me in the room where I stay, a room half surrounded by objects of sentiment and Ashley's bed and a remembrance of who I am, internally and externally, as I take step after step in this foreign land, the land of my parents. In the room, in the land, I can sit and talk and invite Eve in and the mood created, seen by a keen and patient eye, is for the purpose of understanding me better, a shrine of sorts, and although it is NOT my room, a borrowed room, it reminds me that I am here, in Texas, on borrowed time and terminal.

As Eve is speaking with me and our conversations become deeper and deeper, her thought process alters. I take her hand, with conviction, and step her out of the box and demand answers, not assumptions or textbook, but answers as to my physical wellness, as she is 'schooled' to recognize symptoms and I provide her the blanks that she must fill in, to answer my questions, often complex, but asked with great passion and wonderment.

And as she looks at me and I say 'in the eye' and show her by pointing to my eyes and leaning toward her with passion, bearing my heart, shedding a tear and another, she is forced to look at me with her schooled eye, see what I feel, hopefully or at least more distinct, and provide me an answer. And I tell her a story, a truth, about me that only two others know, don't believe, but know and she smiles and I realize for the first time, she, understands as best she can, the process actively dying is putting me through. Past the physical, but raw emotion as I too begin to reflect emotion past her surface, but into her being.

The outlook not being good, she looks at me, again, 'in the eye I shout, I need to know, it is my G-d given right to know', and tells me a story that only I can understand and I know her intention is for me and the feeling is good and well received.
She describes my demise as a painting as I am 'schooled' in art and choose my painting medium with thought. I know whether, she says, if someone brings me a canvas of work, the piece is 'art', not based on whether I like it or dis-like the period it has been painted in, but because I have been taught technique and composition and can assess the painting's worthiness on this. Eve bases here assessment of me and my dying process the same way, metaphorically speaking, as a person 'schooled' in medicine.

And I knew, when she spoke and I listened that her metaphor was thought about and expressed with consideration and dignity toward me and only me, that she had learned about me and was comforted and saddened to have to share with me her opinion, knowing I could handle it, with dignity and a positive attitude. Only this time as in all others in the future, I was teaching her medicine and 'schooling' her in the process she can empathize with, the process of MY death and dying.

And I watched her and she listened to me as she thumbed through my medical documents and I offered her a copy and she accepted, never looking up from the pages she was studying. Eve was now but a student that, like me, was trying to understand and put meaning behind what it feels like to be terminal. And as she spoke in language that only I can repetitively do, she mentioned my disease as 'surreal' and I smiled with heart and knew, as I did previously, that I was not long for this earth, but more important, Eve was human and knows the end of a friendship that is beginning to blossom out of need, not want, will never be complete, but everlasting in a moment.

She will move to another patient and come to see me again, and again if it is meant to be, and learn from me, the teacher, and begin to feel, slightly, what the teacher feels, beyond comfort and toward dignity. As she watches me 'actively die', knowing her 'school of medicine' failed me, my soul teaches her something deeper and gentler about humankind and the drive of the human spirit.

I will smoke a cigarette in the backyard, careful not to allow the smell to pierce the house's interior, listen to a song on the i-pod, figure out how I will simply, but powerfully, explain to my mother and father the result of the visit and I will cry to my creator ( in private) and ask with raw emotion, to be spared too much more physical pain and hope, only hope, that my spirit gets ready to soar as I grab another pill and try to make sense of the last months...

hospice care with Sharon and Eve

the truth about 'wellness drugs'

Sparky the dolphin, in captivity as a 'breeder' for 19 yrs. at Sea World San Diego


Out of sheer curiosity, definitely not boredom, I asked the trainer what happened to sparky's (the dolphin) mother and father. She told me that the father had deceased and that the mother remained in Orlando, in captivity, and had not seen her son in 19 years. She said her name was Sharky. It so happens that in October, 2005 I swam with Sharky at Discovery Cove. I had no idea she had a son, let alone that sooner, rather than later, I would feed her son sardines and visit with his trainer on a behind the scenes training session with a dolphin at Sea World in San Diego...serendipity.

So Michelle asked me one day, when my mind was spinning and there were more questions than answers, and too many tests and I lay curled up in pain, bloated from fluid and fear, what she could do to make me feel better and I told her just asking was more than I needed. She was concerned and saw, through her past experience as a caretaker, the need to comfort and mother and befriend. She contacted her friend Matthew, who did not know me, but was told of my plight and Matthew and Michelle allowed me to escape, for a day, and just be, with the dolphins, my thoughts, my awe and their time and money spent. I felt a connection and a lifetime of worry lifted and I knew my purpose was large and although I never forgot my disease, I escaped from behind it and removed my mask and shared who I was, in detail, with Matthew and Michelle at discovery cove, florida..in tow by a dolphin on her terms and my comfort.

eric and sharky

tuesday 25.04

The silence thickens and the air remains heavy. I say no 'hello' nor put a smile on face as that too would be forced, analyzed and improperly dissected.

thoughts continue to race, time continues to tick and tock and I continue to wait and watch and wait a little more as I stumble, meaningless, without hope or resolution to that which makes me uncomfortable, moody and impatient. The routine is daily and the final cost, priceless. For as the clock continues to tick and the sound I hear resonate, another knot develops within, stomach I think, and adds to the complication I try to deny anyway.

So after a few minutes I move, with no forethought, only to return no more refreshed to that place where I started.

The cycle spins and correction appears to be a distant acquaintance with an unlisted number, remembered, but unreachable today...

fins

fins at sea world san diego

san diego

salon zaine

frank, susan,norman,eric and jackie in 'the little door'

jackie and eric in los angeles behind 'the little door'

mud bugs

mud bugs 04/22/2006

eric at the Steeple Chase Bayou2006. invitations were sent, neighbors and friends and even a stranger or more, gathered, met, socialized, laughed, ate, drank and ate again only hoping to see one another again next year, if time permits and the 'bayou crew' decide, another year is want they want to share...

sunday 23.04

Yesterday and this morning I attended the crawfish festival, one that I had heard about over a television show or dinner, a yearly event with set invitations, pounds of crawfish, neighbors and friends of the party givers. I knew not what to expect, only reflections made by family members of years past. I took pictures and gave of my time, but with an objective.

I wanted to meet the neighbors, for my satisfaction, but to know that if one or two, as they have, offer their time or assistance, unconditionally, to 'if there is anything I can do', my family during this a rather dark hour, they are here for, not by word of mouth, but by love and out of respect. It is my, I want my sympathy and condolence casserole while I am alive, to enjoy it and know there will be more after my surrender. A large expectation I was asking for and much emotional work to be completed, in a period of time that IT was not expected and alcohol could and most definitely would affect others intentions that I would take as literal, them not remembering this morning I write this.

So with fore thought I went and met and greeted people, slow at first, and decided who I thought was 'good people' and who, with a nice smile, I would say hello to upon passing, but certainly not invest in conversation. And still others were just there and I saw them as colors in the background, not to be spoken to, treated no less kindly, but as they were, my background colors.

And as the day fell into night and I had meeted and greeted several, returning home to throw a frisbee to Ashley, take a morphine pill, more diuretics and re-align my energy, I listened and watched in all directions as I was spoken about and my decline was mentioned, my terminal illness sparking curiosity and another opening of an alcoholic beverage. Distance was among us and this I knew from the onset. We sat by the pool and watched the children swim and we, as adults, laughed and joked, taking fond memory with music of days gone by, prom for some, grade school from others and shared life stories and realized that six degrees of separation is not a coincidence, but fact.

The conversations deeper as a small group remained, numbers where exchanged and a handful , or a mere one or two, asked me questions and thoughts about my illness and the disease process, but more important, asked me how I felt and I tried, as I always do, to add laughter, to decline pity and provide a sense of security, that seemed false due to the amount of processing that had to take place between the brain, the bottle and a clouded mind of the questioner.

And by nights end I had received a phone number, entered, into my cell phone and warned the givers as did my sister and brother, that I would call, and expect to the invitation to get together as real, and would wait for that next time to meet their acquaintance at a different gathering with undoubtedly different people and most likely in their surroundings. The one that I spoke with the most continued to speak way into this morning and painted and shared stories about life that I later would ask to share with family members and close friends, as he tried to understand me, wanting to know what others took 40 years to understand, in an instant.

Finding comfort, I spoke and answered with no shame and love, hoping too, that we would see one another again and socialization would become me on a day clearer than today, but sooner. And as I threw up obstacles or warnings to keep a distance, I was assured that we would talk again, by a soul trying to be pure, but sharing wants with me, illogical in a logical mind, and that by chance we were to meet as purely promised, I would enjoy my time, my space and give.

The others extended invitations as well, to me, and without giving specifics, encouraged my battle worn armor to continue to fight and when I extended the invitation toward my space there was a pause and simply stated, it became obvious that the intention was good, but the effort would have to come directly from me to them and I would be welcomed, possibly unexpected, but welcomed on another day, knowing that those offering would remain silent until I initiated their call to action and possibly they each individually or collectively, would remember that THEY offered to help and I did not expect it but might possibly ASK for follow through, more than once, and challenge their generosity, not out of spite, but pure want and need of assistance.

will people be receptive to the idea of accepting a cherished token from me or will they be more receptive to moving forward, to find a noble cause?

companions of transition...

AshleyMarie, my absolute source of comfort when my inside turned outside from 'wellness formula', my blanket for warmth, my treasure and loyal fantasy, my gift from a power stronger than I. knowledgeable, wise and all loving, in the moment, any moment, all the time. speaking in tougue from kindered spirits to guide me home.