Saturday, September 24, 2005

Charles E. Anderson Memorial

My Beloved Brother Charles Eugene Anderson

Charles passed over into the next realm of existence and left behind the painful world of the flesh sometime during the morning of June 22nd, 2005. He was 47 years, 3 months, 1 week and 5 days old.

Charles, we miss you terribly but are also joyous that you are free of your pain and humiliation and suffer no longer in your new body in your new land. I know you now grok in fullness and are happy beyond all our human-limited imaginings. We love you and know you are waiting to greet us one day when our times are come to cross over and be with you in the next great adventure. We value the lessons you've taught us through your experience and remember the good times when the horror of cancer did not overshadow us. We regret our inadequacies to bring you comfort and hope but we also know you found true comfort and peace that passes understanding in your own way and time and that surpassed anything we could have given you.

Your life and death were more far reaching than you ever knew or accepted. Many people have been positively affected and will never be the same all because of you and your contribution to our lives. Your sphere of influence was much more broad and encompassing than you gave yourself credit for, Charles. People from all over the world are aware of your struggle to live with dignity and choose your own path to end your days here on Earth. You have left us all with an example and a gift that goes far beyond my ability to write about effectively. Thank you for that.

Thank you for being you and for showing us how we can be ourselves without fear or intimidation. Thank you for sharing our lives.

We love you, Charles. Always.

Tuesday, August 09, 2005

What Dreams May Come

The sun. The sun was touching my face and it wasn't burning. In fact it felt good. It felt sort of healthy and warming not scalding and hurtful like... like... like it really does to me.

Ah, this was a dream. My first clue to the subconscious that I was actually asleep and experiencing one of my livid dreams. Interesting. Interesting was the fact that I was feeling the sun and enjoying it versus shying away and seeking shade to protect myself from its burning rays eating my skin.

I turned my face upward and squinted my eyes against the sun's brightness and let it warm my face more. I noticed I was sitting in long grass with a gentle breeze blowing. On the side of a rounded downward sloping hill that overlooked a large field of green grass. The grass seemed conformly about a foot long swaying in the gentle breeze like waves on water. The field of grass was surrounded by thick woods that gave the whole area a feeling of containment yet hinted at adventure beyond.

There was a haze. A haze like those in the old movies when the camera would do a head shot of the heroine and she was supposed to look beautiful and all hazy and dreamy. You know what I mean... sort of out of focus a bit as if to hide her imperfections. Well, that's the kind of hazy this was, too. But when I was dreaming it I wasn't thinking about what the haziness may be hiding. I wasn't thinking of why it was "out of focus". I didn't think about that at all because soon after I noticed the haze and was looking around at the hasiness of everything that's when I heard Charles' voice.

"Sorry I haven't come to visit you like I promised, Bone." he said as if I knew he was sitting right there beside me all along.

Sitting beside me on the hill overlooking the waving grassy field below us and he wasn't there a moment ago. I wasn't startled. It seems like I should have been but I wasn't. I turned to look at him and he was smiling while he examined the fluffy head of a dandelion gone to seed. He was young and healthy and so very alive. I suddenly knew I was young, too. Let's say we were probably both in our teens or early twenties. He continued to examine the dandelion and looked so happy and contented. He looked at me out of the corner of his eye and then blew the dandelion parachutes into the wind in a single burst of white fluffiness that was swept away from us and out over the field of waving grass below us.

"Sorry, I haven't come to visit you," he started again.

"That's okay," I interrupted. "I understand." But I didn't. I just didn't want him to have to apologize for anything. I wanted him to stay here with me like this in the hazy sunlight sitting on the hill by the grassy meadow. It felt so right. It felt so real. It felt so peaceful.

"I will do it but it's taking longer than I had thought it would," he began again as if I hadn't interrupted at all. "But I thought I would come this way and tell you that I hadn't forgotten and to make sure you were all right."

"I'm okay." I said without thinking and I meant it at that moment.

"Are you?"

I didn't answer and looked away from his eyes for a moment. This was only a dream, I reminded myself. This wasn't real.

I looked back up from picking a blade of grass from between my crossed legs and he was looking intently at me and still smiling with a single blade of long grass dangling from his lips as he chewed it. That silly impish look he could get about him that made him look like a mischievous devil in a blond-headed innocent boy's body.

"Yeah, I'm making it," I lied. He knew. I could see it in his face but he didn't press me on it or even stop smiling but only looked out over the meadow to give me a chance to blush privately.

"Charles, can I ask you some questions?"

Was that a twinkle of delight in his eyes as he turned to me? "I knew you would have lots of questions," he said with a definite twinkle of delight. There was understanding and love beaming from him. "Yeah, it's okay to ask me questions."

And I began to ask my questions. All the questions that would come flooding out of me about what was it like and where was he at and was he happy and was there really a heaven like we thought of it and what was God really like and and and and and


I don't remember a thing he told me.

But he did answer every one of my questions very openly and without hesitation. We laughed and he assured me it was all so much better than I could imagine and that I didn't have anything to be afraid of. I don't remember the words he told me even though the whole time I kept thinking I needed to remember all of this because it was so awesome and would change my life forever. I don't remember the exact words, but I remember the feelings.

The feeling of peace. The feeling of love. The feeling of a cumbersome burden of pain and sorrow being lifted off of me because there was nothing to be pained or sorrowed over. It was all great and just dandy, according to Charles. Even though I don't remember his words. He still got the message across.

Then I woke up.

I woke up like this for the last three nights and each time have experienced the frustration of not being able to remember what Charles was telling me about the mysteries of the great beyond. I work all day to regain the feelings of peace and love and loss of burden that Charles gave me but have failed miserably. Why can't I remember? Why can't I retain the blissful feelings he brought me?

Monday, July 18, 2005

The Light Goes On in the Dark Closet of Despair

I wonder how many other bloggers are afflicted with the same blog-related illness I suffer? You know, the one where all my best blog posts are written only in my mind while I am taking a shower, mowing the lawn, cleaning out the catbox, or even sleeping. That's not the bad part. The bad part is that once I sit down at the keyboard sometime later, anxious to type my thoughts for all the world to see.


My brain goes "sProIng!BoINk" and it all evaporates into the god forsaken ethereal mists of blog purgatory or the Twilight Zone or where ever all the masterfully conceived yet never written blog entries are snatched to. It is so damn frustrating. If I happen to start typing then it all ends up sounding like crap and I delete it and pound my head against the monitor in hopes of jarring loose just a tiny morsel of the vision I had. All for naught and BMNB goes another day without so much as an original creative grunt to grace it's page.

Oh, I could fall back on some logical and sane reasons for my lack of creative spirit but it would be giving in to the denial that I just have not put forth the sincere effort. Count this post as being maybe a tiny first step in the right direction to coming out of my dark closet of despair and once again entering the world of creating original blog content. I am not guaranteeing anything except I am doing my damnedest to live in the Now and Here one clock tick at a time. We'll see what comes out of that.

Wednesday, June 22, 2005

The Call Has Come

I just received the call that my little brother Charles has just passed away. The call has come and I must go for now...

Saturday, June 18, 2005

Sitting on the Beach

I'm sitting on the beach at Tybee Island. I am under my little pop up tent protected from the harmful rays of the sun and the occassional drizzle of rain and typing madly with both thumbs on my Treo smartphone.

I love listening to the surf and watching all of the "normal" people frolicking, drinking, sunning and escaping their "normal" mundane work week lives with the dark Atlantic ocean as their surreal backdrop. All the while I remain tucked away under my nylon SPF 10,000 (I have no clue what the SPF rating really is but I like big round numbers so we will pretend for now that it could be true) canopy. Thus, I am somewhat distanced in geography and physical barrier as well as attitude. I may even appear a tad aloof and mysterious in my Panama Jack hat and black glasses. Maybe they think I am cursed with some dred sun related disorder (very close to the truth). Or maybe they think I am an eccentric with a sun phobia or even a modernistic wannabe vampire on holiday? More likely they think of me not at all and that is fine with me and probably as it should be.

Last night I dreamed of Charles. He was trying to tell me something as if he were instructing me in a matter of some importance. I knew I was in the dream realm, as I usually do, and made a conscious effort to make sure I remembered what he was telling me. But when I awoke that bit of information was gone from my memory. Most of the rest of the dream was there but the part I wanted to remember the most eluded me. This is the second time in as many weeks that this has happened. I am becoming frustrated but think he will keep coming back to tell me whatever it is until it sinks in enough for me to remember it awake.

The ocean breeze feels so cooling and smells of salt and the indescribable scent that is uniquely ocean. It brings its spirit into my heart and mind and I cast my cares into its waves and seek its primal healing caress.

Sunday, June 12, 2005

Nashville Cruise

I am still feeling the buzz from my Nashville cruise to see my best friend, William Payne. You know, that "buzz" you get after a long drive returning home from a weekend you don't want to end? The special buzz of driving four hours in a Corvette cruising down the highway with its sexy powerful thrumming rumble flowing through your whole body? Yeah, that kind of buzz. It makes me want to stop typing this post and get back out on the road and just go nowhere real fast. But, I digress...

William called me early last week and asked if I would meet him in Nashville since it is half way between us (about 4 hours drive). It sounded like fun and something I would really like to do but I hunted for every excuse in the book not to go. Poor William, I was on again off again with each new phone call or e-mail all through the week. I've got to be a lousy friend with my wishy-washy behavior. But hey, this adventure suddenly tripped a lot of triggers inside of me and I found myself actually fearing going. Fearing to let myself go and experience something besides the stress and anxieties I've been shouldering for so many months. How ridiculous is that? His request for a getaway challenged me to shake loose from the perceived responsibilities normally planned for my weekends and do something totally different and that brought about additional anxieties. I guess I am really a basket case afterall.

Anyway, I slogged through the week from hell at work and ended up with a middle of the night anxiety attack that made me sit up and take notice that I was about as close to going over the edge of sanity as I've ever been in my entire life. I had to do something and since I don't believe in coincidences I suddenly saw William's invitation as the life-jacket thrown to me as I bobbed in the ocean of my own fears and it could just possibly save me from sinking beneath the waves of despair and drowning. Wow, that was a pretty tall order of expectations for a simple overnight buddy trip.

My 1996 Collector Edition Corvette had been giving me fits with random idiot lights and bells going off for about a month and me with no time to investigate what was going on. I was uncertain if I should take the risk of driving it to Nashville but that turned out to be just another excuse for not going (William hadn't had the pleasure of seeing her yet). She performed fantastically and the problem of the random warning lights never gave me an issue the whole trip. Again, I was worrying for nothing. I guess she just needed to get out and blow off some of the city driving steam and crankiness... sort of like me.

The weekend ended up being just what the doctor ordered and I found myself quickly feeling so much better emotionally and physically that it was almost magical. I will comment on it further in some later posts as I am still digesting a lot of what we talked about and I just realized I am exhausted and need to get some rest.

I had the chance to introduce William to the world of blogging and helped him set up his own blog. You can check it out at Bill's Cruise Through Life. I am very interested to see where he goes with this blogging opportunity. When you visit, go easy on him... he's still a BlogVirgin.

Friday, June 10, 2005

Panic Attack

Jason pulled a total freak out and destroyed two of his vehicles with a baseball bat then threated my step-father with it. Said he was going to kill Carroll because Carroll had disrespected his woman and was stealing money and morphine from Charles. The police showed up and escorted Carroll away from the house. Charles then found himself where he always wanted... under the primary care of his idiot and dishonest son. That was about a week ago. Today my step-father showed up unexpectedly and found Charles being "cared for" by one of the neighborhood drug thugs who can barely change his own underwear and Jason and Crystal no where to be found. The hospice aide worker showed up and immediately contacted her office to apprise them of the situation. Charles may be forced to go back to the hospice. That's all I know at this point as updated in a two minute phone call from my step-dad. My Mom told me last week that she had intentionally been hiding information from me so that I wouldn't worry because she wanted to protect me and my sister. What utter bullshit.

I have had the week from hell at work and my body is starting to rebel with all sorts of bizarre reactions. I had my first full panic attack in the middle of the night last night. It was horrible and I thought I was dying of a heart attack but couldn't move to wake my wife to take me to the hospital. It was if my whole body was numb and tingling and electric fire enveloped me. My heart was racing and I was sweating and lights were flashing before my eyes in the darkness. I was able to understand what was happening to me and willed myself back under control. This shit has to stop. I will not give in to this. I refuse to be beaten my own emotions.

I am going away for the weekend to meet up with my best friend, William, in Nashville. We are going to cruise coffee houses and wine bars and talk. Call it therapy. Call it running away momentarily. I just know that I need it.

Sunday, May 29, 2005

I'm Normal?

I've discovered I am considered normal. Well, at least I am normal in what I am experiencing concerning my little brother Charles' losing battle with head and neck cancer. In fact, it may be the first time I am really normal in any sense of the word with any part of my life so far. It is almost a sense of relief that fills me when I realize I may have finally and inadvertently obtained a place of "normalness" in all of this pain and craziness that surrounds me and permeates my daily existence.

How do I know I am normal? My baby sister, Teresa told me so. She religiously reads this blog and often comments that I write about the very same things she herself is feeling and experiencing. To her, it is uncanny and almost synergistic. But to me, it is validation that we are only experiencing a clinically recognized progression in the cycle of mourning. Of course, knowing this doesn't make the journey any easier.

But I wonder. How could it be "normal" to suffer extreme emotional detachment, mental exhaustion, near debilitating physical anemia, undeniable guilt and remorse, uncertain and unrealistic fear, feelings of abandonment and betrayal, inability to focus, misguided or misdirected anger, altered perceptions, overwhelming sense of my own mortality, and more?

Maybe that is the wrong question.

Normal doesn't mean "okay". It just means it is something most people go through in this situation and that experience itself is the normal I wish I wasn't at the moment. For once I don't want to be considered being normal. I want someone to tell me that all of this is not normal and I can be delivered from it easily with but a single magic pill. Or maybe I could undergo hypnosis or some quackery psycho-babble to wipe my mind and start fresh tomorrow just as if the last year had never occurred.

But that's not going to happen.

Just as Charles has to live through his horrific trial to the inevitable end, Teresa and I must play our parts and compassionately suffer in another form along with him. Thus, balance and normalcy are kept in the universe and one more thing that separates us from beasts is revealed. Or is it?

So this is what it is like to be normal. No wonder I've done my best all of my life not to be normal. Being normal totally sucks!

Monday, May 23, 2005

Burst of Lucidity

You, my readers, know me better than I thought or would have imagined. The comments here on BMNB have been insightful for me as some of you have let me know you have a level of understanding and compassion that exceeds most of my acquaintances in the "real" world. I thank you all and am grateful for the newfound camaraderie and network of support I've discovered through blogging.

A few of you have pegged me for the obvious dodge I've done over the last week with posting very little substance here in a weak attempt to bring my blog in line with the rest of my life. In other words, to sink to a level of emotional and psychological numbness that allows me to succumb to the fog in my mind and heart and pretend I don't have a life of my own to live. I don't think I had realized this until a couple of my commenters called bullshit on me (in a loving and compassionate way, of course) and verbally slapped my inner child on his bare ass. I can run but I can't hide because wherever I go there I am.

I have been ignoring that voice in my head that keeps telling me to wake up and rejoin the land of the living instead of continuing to stumble around in a poor facsimile of every day existence. It is almost like an out of body experience that I have no control over. I am viewing my own life as if I were someone else peering through my eyes. I’ve become a shell of a body possessed by a trapped alien entity who doesn't know how to function properly in my world.

Over the months I have either intentionally or inadvertently distanced myself emotionally from almost everyone I know and interact with. I found myself not wanting to put forth the effort to maintain day-to-day relationships as they were too tedious and I just didn’t have the energy to pull out of my funk long enough to communicate anything of any real importance other than to talk about Charles. Hell, most days I didn’t even want to get out of bed.

I feel like a part of me has died.

The only exception to the distancing has been with my baby sister, Teresa. She and I have grown closer than ever through Charles’ illness. She seems to be the only one I can really talk to about anything and everything in my life. I am grateful for her and am so glad that we’ve discovered each other. The growing relationship we are developing is but another gift Charles has given me.

I have enjoyed spurts and even bursts of lucidity over the months that have carried me through getting my job done and taking care of my family responsibilities. Thankfully, it seems that I am having many more of those lately. Maybe I am starting to find the end of the rope that I can use to pull myself up out of this dark well of anxiety. I just hope that rope is long enough to make it all the way out of this well.

I hope and pray it is strong enough for me to hang on to when I get the final word that Charles is really gone…

Tuesday, May 10, 2005

Talking To Myself

Write, damn it!

I need to just frickin' get off my mental butt, sit down and start typing. Let the words fall where they may and don’t stop to consider what damage I may or may not be causing. Don't fret about style or logical sequencing development or entertainment value or any of the other barriers I hide behind as excuses for not posting what I've been thinking and feeling. Just write and get these gooey thoughts out of my head and heart. Capture them once and for all in my virtual journal and expose them to the light so they will stop haunting my sweaty dreams. Who gives a flying bleep what I think or feel anyway? Do it for myself without hesitation or forethought. Let it flow freely without restraint even if it is a bit messy and runny around the literary edges.

Why have I not been writing about the things that have really been in my head instead of posting the more inane things like “News of the Weird” and “The Week”? Well, primarily because it hurts to keep picking at that scab on my heart and reopening the wound labeled "Charles" only to be faced with trying to stop the emotional bleeding once more. It is slow to heal and painful beyond belief. But I find myself going back to it daily and contemplating on the unfairness of life and my helplessness to make any sense out of it. Of course that is the cruel irony of the whole matter. There is no sense in it and life has never claimed to be fair.

Someone commented about my blog on their site and said that they were touched by what they had read and had come to a realization that they had so much to be thankful for and were grateful for my sharing the experiences of my brother dying of cancer. One of their avid readers and friend commented that they had also visited my site and recommended that that person stay away from it because it was “too f**king depressing.” Sorry, I sincerely don’t know how to make the drawn out agony of my brother’s loss a happy event and less depressive.

Hey, what the crap am I apologizing for?!? It IS f**king depressing!

Another reason is that there has been no real new news. If Charles is too ill to chat or write e-mail then I exist in a communications vacuum that makes me feel as if he's already gone from this earth. I get nothing but frustration in talking with Carroll over the phone because he is too complacent and out of touch with reality to say anything much other than, "He's doing fine. He's about the same. There's no real change," and then he acts as if I am challenging his manhood if I ask for something more specific. I guess the thing that really raises my hackles is the fact that he acts like it is all no big deal. He’s even made the asinine comment, “Well, we’re all gonna die,” as if Charles’ pending death has no real significance or relevance to him. And this is the person who is Charles’ primary caregiver and will most likely be the sole person in attendance at his time of death. Sheesh!

Charles is on the verge of giving up the fight. The masses have grown rapidly over the last several weeks and are obvious in the grotesque swelling of his face and neck. The pain has increased to the point that he is more heavily medicated and spends most of his time lying on the couch. The pain meds cause acute nausea which he attempts to quell with anti-nausea drugs with varying results. He grows weaker and his coordination makes it difficult to move around. His ability to even write is dwindling as he is unable to focus his concentration long enough to make complex sentences on the paper or in a chat session. His nourishment intake has decreased due primarily to the nausea but also because of his body not processing the nutrients sufficiently. Sunday, he told my step-father that he thought it would be his last day. Monday he said he was feeling better and the nausea had subsided somewhat allowing him to once again take food. By taking food he means injecting cans of a Boost-like substance into a tube dangling outside his stomach. Today I’ve heard nothing from him or any of the family members that are near him.

So, it is most likely a matter of days or even hours before Charles passes to his new life beyond this existence. "One day at a time" sincerely takes on much more significance in waiting for death's embrace. I have the comfort of knowing that he and I have said our “official” heartfelt goodbyes and he has promised to be waiting for me on the other side. Now it is only a matter of waiting for the phone call that will inevitably come telling me that he is gone.


He’s never been close to giving up before. This is so different. He tries to live each day as if he is going to beat this shitty disease and refuses to give in to it. But now he’s saying, “Today may be my last day.” It’s wearing him down. He’s tiring of the fight. His body is betraying him further. He’s beginning to acknowledge defeat.

Have I mentioned that there are no plans for a memorial service of any kind? Charles didn’t want one because he doesn’t want anyone making a fuss over him. I’ve tried to talk with him about this with Teresa but he insists that it is up to Jason. That basically means that it will not happen because Jason still hasn’t lifted a finger to help his Dad in any way and continues to pilfer his money and waste it on trivial toys and guns then lie about everything.

Memorial services or funerals are not really for the dead but are a means of bringing closure in the hearts and minds of those left behind. Teresa and I have told Charles this and he seemed to realize that we are right but still won’t relent on saying anything about it to Jason or anyone who will see to it happening. So, it seems there will be no memorial service and Charles will die and be cremated and his ashes spread in his backyard garden just beyond the septic tank overflow lines. Within days of his passing it will be as if he never existed. That’s the way Charles wants it, I guess. That’s the way most of “the family” wants it, too. Convenient and cheap. No fuss and no mess so they can quickly get on with their dysfunctional selfish lives.

There are other reasons I haven’t written honestly. Reasons that I haven’t put a name to but are best defined as dark creatures clawing their way up through the deeper recesses of my memory. Creatures that have been chained in the dungeons of my mind and kept at bay by sheer will to break the cycle of victimization that I have suffered at the hands of cruel people most of my life. Creatures that materialize in my dreams and taunt me now seek to slither through that small vulnerable opening I’ve created by writing about Charles. The creatures are gnawing at the edges of that opening and eating away fleshy chunks to make the opening bigger so they can squeeze through.

I have attempted to exorcise some of these creatures by giving them names in my secret writings. Writings that have been printed and burned and deleted but still find a way to resurrect themselves from the ashes. Creatures bearing names like Physical and Emotional Child Abuse, Neglect, Betrayal, Manipulation and Deceit, Hatred and Ignorance. The creatures were spawned from a long standing curse that has been passed from generation to generation on both sides of my family, both blood and non since before anyone can remember. My siblings, cousins and I were brought into this world under the bondage of this curse and have endured the consequences all of our lives and some of us will die under its influence. I refuse to do so. I refuse to continue to make excuses and propagate the curse by acting as if it doesn’t exist.

What does this mean for me? I think it means that I will eventually write about the events that gave birth to those dark creatures in my mind. I may do it here in my blog or through stories that may end up published elsewhere. “Published” because that is really the only way I can see of ridding me of the curse once and for all. By naming the creatures and boldly pronouncing their existence I will expose them and take away their power. I haven’t done this before Charles’ fight with cancer because I had become comfortably numb and found a status quo of ignoring their existence, claiming that I had put all of that behind me and forgiven and forgotten. I was lying to myself because the creatures were still there. Lurking just underneath my consciousness and waiting to once again victimize me. All they needed was the right situation, the right vulnerable moment to manifest themselves and regain their footing enough to re-launch their attack.

If anyone is really reading this besides me then they are probably thinking they have stumbled into the ravings of a lunatic about to go postal. Well, that is far from the truth and is an unfortunate side effect and misperception of the honesty bubbling to the surface of my writing. Rigid honesty is not easy and those without the ability to be honest with themselves will find fault in my doing so here. So be it. I will make no apologies for it.

See, the words and characterization are not now as concise and definitive as they will be in the future. Striking out on this path means taking “baby steps” and what is now seen through the glass murkily will some day be revealed for what it really is so that all may understand. In other words, naming creatures inhabiting my psyche and alluding to childhood events may be the best I can do for now, but it is the first real honest step to realizing my dream of breaking the curse and freeing myself from the inhibitions that have kept me from truly being who I am meant to be.

Talking with Charles over these last months has brought several things home over and over. Like I’ve said elsewhere in this blog, he has taught me a lot through his dying.

Don’t give up on your dreams.
Always be the best person you can be to your fellow human.
Don’t put off for tomorrow what you can do today.
Stop talking about it and just do it.
Always give help to someone who really needs it and that’s when you will feel most alive yourself.

So, now here I am over 1,900 words later and feeling like I have finally made a genuine effort at saying some things that have been on my mind for weeks. As is my “style” I have wandered through a maze of emotions and topics in a single post and baffled some readers as to what the hell am I really talking about. That is, the readers who have made it to this point. Most of the others quit after the first paragraph and wrote me off as a waste of their precious internet surfing time. That’s fine by me. Like I said in the title of this post, I am talking to myself and writing to my inner man in hopes of discovering something about me. It just so happens that I have chosen to do so here and not for the approval of anyone but me, myself and I.

Thursday, April 21, 2005

Rereading My Own Words

It is sort of funny to see how others end up interpreting something I've posted here. For instance, the previous post that included the chat session with my brother Charles was meant to show how little "real" information I get from him or his current caregivers since he's taking hospice care from home and I am not able to be there and see things firsthand myself. Instead, I have people telling me how moved they were and how they've been ministered to through the sharing of that "private" conversation. I've reread it many times and it is now different for me, too.

However, in the rereading of that post I've realized how inefficient the written word is for truly transferring the emotional moment on to others to experience with me. Missing from the conversation are the labored pauses waiting for each line of Charles' part of the conversation as he hunts and pecks with a single finger. Gone are the thoughts that ran through my head as I waited for each line from him. Thoughts of the questions that never got answered because they were never asked but only existed in my heart.

But obviously the real message came through. The message I didn't even know myself at the time that was being conveyed. The message that there can be peace in dying. There can be love in the midst of fear. The message that blessing can come from the most unexpected places and family members during this time.

The blessing of the alcoholic brother that remains as sober as possible and sleeps in the same bed as his dying brother so he can hear him if he stops breathing in the night.

The blessing of the immature delinquent son who sacrifices his self-centered ego and greed long enough to plant a huge vegetable garden under his father's gaze and direction. Just like the garden Charles would have planted himself as he has done every year at this time. The garden he will not see harvested.

He had to have known that the whole time the soil was being tilled, the plants were being purchased and each one placed just so in the ground and watered. He had to have known and had to have considered it in his mind as the final plant was put in and his son stood up sweaty and dirty and told him he was going fishing for the night.

Yes, I do read my own blog... over and over. That's what it is here for... me.

Sunday, April 17, 2005

Charles is Home

I have not been able to openly discuss Charles and his current condition since I really am somewhat in the dark on the details. The reason I am in the dark is because the people (family) currently responsible for his caregiving are not as verbose on his condition and I usually get something like, "He's about the same," or "He's doing fine," or "He's looking good." Sheesh, what kind of information is that when I've been informed by the doctors that he was only given between two weeks and one month to live and that was nearly a month ago?!? Even Charles himself only tells me he's feeling good. Hey, I'm not complaining that he's feeling good but my gut tells me that "feeling good" is a deceptive description of the reality we face.

I am sounding like a blabbering idiot here so I will tell you what I know. Charles went home last Thursday and has been ecstatic ever since. He spends much of his time outside sitting and resting and looking over his property which is a nice country setting. Carroll seems to have risen to the challenging occasion and, as Charles put it, "He been a surprising blessing." Jason is still somewhat missing in action as he goes about being worthless and self-centered. Using MSN Messenger, I chat with Charles daily. I would call but he can't talk and has limited minutes on his mobile phone (he has no land-line) and complains about using them "needlessly". Anyway, here are some excerpts from a chat we had last night that will give you a better idea of what's going on.

Charles: Hey Bone
Tony O: Hiya, Bro'!
Charles: Whatcha doin'?
Tony O: Just surfing the net and blogging
Charles: blogging?
Tony O: Remember, I told you about blogging. Sort of an online journal that other people can visit and comment on.
Charles: o yeah
Charles: been nice today and I'm feeling good
Tony O: Just how good are you feeling? What does it mean when you say you are "feeling good"?
Charles: means I am surprised how good I feel. I thank God every day that I wake up breathing
Tony O: I thank God every day I wake up breathing too! (winking smiley)
Charles: after my pain meds kick in I am usually pretty good for the rest of the day
Charles: my legs and feet are swelling so I keep them elevated
Charles: what did you do today?
Tony O: yard work mainly
Charles: Carroll cut some grass today. Jason and Hank went fishing and will be gone all night
Charles: I am really glad to be home. It has given me extra energy, I think.
Tony O: I hear you spend a lot of time outside enjoying nature
Charles: as much as I can. Do a lot of sitting and resting mostly but yes
Tony O: sitting and resting are good
Charles: Carroll has surprised me and is a blessing with how he's really pitched in
Tony O: I guess you are proving the doctors wrong
Charles: wrong in what?
Tony O: In how much longer you have
Charles: What did they say?
Tony O: I feel stupid or bad for telling you. I thought you knew all along. I thought you knew when I was there with you.
Charles: I don't know. All they said to me was they weren't sure how much time I had when I asked.
Tony O: I probably shouldn't be talking about this
Charles: tell me what they said. don't lie to me. you promised.
Tony O: I have never lied to you, Charles and won't start now. Teresa and I have been the ones telling you the truth all along
Charles: I know
Charles: tell me what the doctors said
Tony O: after they removed your respirator and put in the trache and discontinued all treatments because the tumors weren't responding and the new growths had appeared Dr. Kyassa said you had two weeks to maybe a month
Charles: doctors don't know everything. It's in God's hands not theirs. God must have let me stay for a reason.
Tony O: You are teaching me so much, Charles
Charles: how
Tony O: you are teaching a lot of people a lot of things. How to be strong and not give up. How to have dignity in dying. I am so grateful for your example in my life. I think you still have a lot of things to teach some people. Maybe Carroll and Jason?
Charles: I think so maybe
Tony O: You are God's messenger
Charles: the message is love
Tony O: that's all there is... love or fear and you are bringing love
Charles: I need to rest. I love you, Tony
Tony O: Okay, you have a peaceful night, Little Bro'. I love you, Charles.
Charles: I will catch you tomorrow on chat
Tony O: I'll be looking for you... Love ya', Man!
Charles: xoxoxo

So now you all know as much as I know. I wish I were with him.

Wednesday, April 06, 2005

Charles Wants to Go Home

I'm giving up.

Charles has made it known from the very start of his ordeal that he wanted to die at home. He is quite different from I in that respect. I personally wouldn't want to die at home but would want to be in a hospital with the best care possible and chance for the greatest drugged comfort from pain that my insurance company could buy. I wouldn't want to put my wife and children through the emotional torment of watching me die in their house (because it would be solely their house once I was gone). However, Charles doesn't see it the same way I do and feels his "last request" is to be in his own home and free from the prison of the hospital or hospice. I mean, I can see it his way to an extent. If things were different. If things were the way he's fantasizing.

Charles has a son, Jason who is 21 but acts all of 12 on the best of days and still lives in Charles' home. He's a druggie trying to become an alcoholic who has been robbing his daddy blind as he trashed his business after Charles could no longer work it. He lives in filth and trash and lies with every breath he takes. He's seen his father twice in the last two weeks and always has an excuse for why he can't make it to the hospice even when Charles begs him to come. Jason is Charles' primary caregiver. I can just hear you saying now, "WTF?!?", but it is what Charles wanted. He had Jason promise he would take care of him and Jason looked directly at him with a room full of witnesses and said, "I will, Daddy." Like I said, he's a habitual liar but Charles refuses to see him for who he really is.

Thus the beginning of the problem I have with Charles going home to die. In the past nine months, Jason would leave Charles all day every day and walk past him lying on the couch without so much as a word as Charles lay dying from starvation and dehydration. When he was home, he was locked in his bedroom with several of his buddies playing with guns (one of his fetishes) and other "secret" things. Hell, one night while I was there taking care of Charles, the idiot shot a thirty-ought-six deer rifle through four walls of the house from his secret dark filth pit he calls a bedroom. "It was an accident, Daddy! I didn't know it was loaded." Famous last words of many a fool who shot themselves or others playing with guns. What pissed me off more than that was his moronic laugh afterward while he joked about not being able to hear because of the loudness of the gunshot. I was so angry and also so afraid for Charles. Jason himself is a loaded gun waiting to go off and I don't want him pointed at Charles when he does.

Jason was the primary reason I have tried to convince Charles that he needed to stay at the hospice where people would care for him and make him comfortable in his final hours. Because I knew (and Charles really knew too) that Jason wouldn't no matter what Charles wished were true. The fantasy of sitting quietly in his easy chair, Jason holding his hand, watching the sun set over his country property through his patio double sliding doors, contentedly drifting off to a peaceful sleep... never to wake up...

Pure fantasy. Oh how I wish it could be like that fantasy, though. How I wish I didn't have to see in Charles' eyes the disappointment in his son and the disbelief that he cannot count on him to honor him and care for him and love him in his dying moments. How sad. How inhuman and cold of Jason. How helpless I am to ensure that Charles gets to live that fantasy.

Second reason for trying to convince Charles to stay in the hospice was he thinks that if Jason doesn't step up to the plate and accept his manly responsibility of taking care of his dying father then perhaps his own Mom and Dad will. In fact, my Mom has promised him multiple times that she would ensure that he didn't die in the hospital and would take care of him. She lied, too. She would cry, "I know, Baby," and tell him she promised he wouldn't die in there and she would be with him and take care of him. Then she would walk out into the hall and cry to someone else how she couldn't do it and that Charles couldn't go home because no one could "handle it" to take care of him. She usually then launched into a long list of lame whine-filled reasons why she and Dad couldn't be there for Charles when he needed them the most in his entire existence. Seeing and hearing this behavior made me sick to my stomach. Such is "the family" and such is what I have come to expect of them. Absolutely nothing.

Ah, but there's still more reason for concern...

Enter Carroll, our youngest brother. Carroll is a gutter bum drunk and will sniff, smoke or swallow anything to keep a continuous high going. He has mooched off of family and fleeting friends for food and shelter much of his last 15 or 20 years. I can't paint a terrible enough picture of his life as an addict. His bottom must be lower than whale shit at the bottom of the Mariana Trench because there's no sign of him ever sobering up. He will die either at his own hand or at the hand of someone else because he's also a nasty foul-mouthed drunk that loves to verbally abuse women. We always thought that Carroll would be the first of us siblings to die. We were wrong.

Anyway, Carroll moved in with Charles recently to help out around the house. He can do this fairly well since he's always been good with building repairs and maintenance. When he can stay sober enough to work. Charles and Carroll have had several past altercations over his drinking. Once Carroll put Charles in the hospital by beating the living hell out of him when he went berserk in one of his blackouts. Another story for another time, maybe.

So, Carroll moved in with Charles just a few weeks before this last and most likely final episode of hospitalization. Carroll was the one who told Charles "the family" was going to "pull the plug" (not my words) a few weeks ago, remember? Well, before I left I mentioned to Charles that he might ask Carroll to spend time with him at the hospice since he doesn't work and usually needs a place to stay. Charles' eyes lit up and he had me call Jason to ask him to come visit and to bring Carroll with him. Jason said he was too busy. Charles had me call him again and this time "beg" him until Jason said he would try to make it up there. He never showed up.

This was the way I left Charles that Saturday morning when we looked each other in the eye and said goodbye. My heart was filled with mourning and grief knowing there was nothing else I could do for my brother because my own life could no longer be put on hold. Charles told me that he liked the hospice and would stay there as long as he didn't feel abandoned by the family.

Every day I see Charles' skeletal face and toothless mouth silently forming the words, "I wanna go home!" as he looked at me pleading for understanding. No words come out because he can't talk any longer but he may as well be screaming because that's the impact it has on me. Night before last I went to sleep with that image in my mind and ended up dreaming for the first time about Charles since this ordeal began. "I wanna go home!" was all he kept trying to say to me. "I wanna go home." I woke up weeping.

My sister, Teresa called me the day after the dream (yesterday) and told me that Charles and Carroll were "plotting" on leaving the hospice next week. Charles still hasn't figured out that he can just tell the hospice staff he wants to leave and they can do anything about it. He can have home hospice care but that is only a few hours a day and not nearly the level of care he would receive at the hospice itself. So, plotting is unnecessary and only adds to the stress of everyone concerned.

I tied my Dad and Teresa into a conference call and we all three discussed Charles' desire to die at home and the current situation. It was decided that we would no longer encourage him to stay at the hospice and would not stand in his way of going home if that is what he really wanted to do. However, we didn't want him to do so without properly setting up home hospice care in advance. We all want him to have his last wish but we want him to have it with the best chance of being comfortable when his time comes.

My Dad said he was going to see Charles in a few hours and would talk with him about it and I could hear relief in his voice that this was something he had needed help in deciding. Teresa still has concerns about the weekends when no hospice aide workers will visit and suggested she and I take turns flying in to take care of Charles on the weekends. We'll see. I have a feeling shared by her and Dad that Charles may be stubbornly holding on to life to "prove" to the hospice that he's well enough to go home. And then very shortly after arriving home he will allow himself to die. Home at last. Free at last.

The call I received from Dad as I was leaving a business dinner was good news. He told Charles that we would no longer offer any resistance to him going home and if that's what he wanted to do then so be it. Charles wrote that he would do whatever the doctors wanted and it appeared that for now they wanted him to stay in the hospice until at least the antibiotics for his staph infection were through. What he doesn't know is that the doctors are expecting him to be too weak and too drugged for pain to go home by the time his antibiotics are completed.

His body is continuing to rebel against him and is taking less and less nourishment from his feedings. He continues to lose weight and is now probably around 87 pounds or less. He's getting weaker with every passing day. How long can he survive strictly by sheer will power alone? He's been amazing, so far, in his stamina and hard-headed attitude that he wasn't going to ever give in to the cancer. I think Charles will choose his own time and place to die no matter what the doctors say.

Thursday, March 31, 2005

Nightmares of Death

Nightmares of me dying. Why do I dream I am the one dying? I have been dreaming that for months. It's not Charles, it's me. Maybe I wish it were me instead of him. Maybe I wish I could make some sort of deal with God or even the devil to exchange my life for his. If it were only possible. If it were possible would I really do it or am I just playing some sort of sick psycho game in my own head? I have but one life to lay down for my brother. Didn't someone famous say that? I know what they meant now.

Or was that, I have but one life to LIVE for my brother?

I know I've done all I can for Charles, but I keep hoping there is something I've overlooked that can make everything right and that I discover it before it is too damn late. I know I am grasping for miracles and bearing unnecessary and realistic "blame" and even guilt. Knowing that doesn't ease the pain or confusion, though. Knowing that only causes me to fear further that I am slipping over the edge.

Keep smiling, Tony, and telling the world you're okay. Maybe you can fake it till you make it and believe it yourself. Maybe you can force those death nightmares from your restless sleep.

Peace and Pain. I have both and one doesn't negate the other. Peace that I've said goodbye and have done all I humanly can. Pain at the loss of a dear brother I never truly got to know and enjoy the way I should have.

Tuesday, March 29, 2005

Last Week I Was With My Brother Charles

Okay, I've tried writing a summation of last week's events several times but have refused to post since none of it makes sense. I am still trying to work through it all in my own head let alone get to the point that I can tell others in a logical narrative what the hell happened. I am feeling lots of anger and confusion still. As I wrote I found that I was revealing a lot of "family secrets" about the asinine and terrible dysfunction my family suffers. Secrets, that if revealed, would doom me and my sister Teresa to be even further outcast from their ranks, if that is even possible. Jacklegs (interlopers) are what we are considered.

None of this is making any sense either. Maybe I should just give up and not try to relate what happened. No, I am writing it all elsewhere. A sort of stream of consciousness recounting of the week filled with pain and joy and fear and peace all at the same time. Maybe it will appear here in this blog and maybe not. I don't know. There are too many family secrets revealed. Too many personalities exposed for their true selves. Personalities that have remained hidden till the glaring reality of the hospital death bed revealed them for who they really are. Who they have been all along. Who I've known them to be most of my life.

This reads like nonsense. Like the sweaty hallucinations of a madman. I am not mad. I am angry. I am angry at people and their ignorance. I am angry at doctors and their inadequacies. I am angry at Charles for smoking. I am angry at myself for living so far from him. I am angry at myself for being weak and helpless to save him or comfort him. I am angry at myself for having to come back to Atlanta. I am angry at myself for not being able to write my thoughts clearly. I am angry at myself for being a coward and not telling the straight facts about what happened. I am angry for the fear I have of sharing the truth. I am angry at Death. Fuck you, Death, you filthy rotten bastard!

No, that didn't make me feel any better. In fact, it makes me a little bit scared.

All of this and yet... and yet, I have peace.

"A peace that passeth all understanding."

I got to spend quality time with Charles. The kind of time that only two brothers can share. Honest (finally) quality time with honest (finally) talk and honest (finally!) love. We held each other. I kissed him again and again and he never made a single crack about questioning my sexuality. We never could have done that before. Before this. Before Death stood in the doorway waiting for Charles to give up. For Charles to go "home". We wept together often and yes, we even laughed together. Especially when the thunder storm rolled in outside the hospice window and he reminded me of when we were kids all sleeping in the same room and we would claim the next thunder boom as our "fart" and giggle... quiet, stifled giggles so we wouldn't arouse our father's anger... late into the night stifled giggles under the covers between thunder boom farts. He laughed in Death's face with a childhood remembrance.

At this moment (and isn't that all we really have?) Charles is still breathing on his own with a trach (tracheotomy). He has new cancers attached to his brainstem, he has new soft tissue masses blocking his airway, the "old" cancers have not responded to the additional radiation and chemo treatments. There will be no further treatments and his remaining time is short. There are signs of his organs and bodily functions shutting down. Maybe only days or possibly weeks left.

But, he does have some time he wouldn't have had if the plans of last Monday had come to fruition. Had "the family" had it's way and "pulled the plug" at 1 p.m. Central Standard Time. Had not the doctors wanted to hear from Charles himself and administered a "narco" shot to counter the sedatives so they could present him with a possible alternative to suffocation I may be writing a totally different post now.

So Charles continues his fight for life. He refuses to cave in and let the cancer beat him. He moves along his spiritual path and has become an even greater blessing than before his illness. Charles is a good man and people have come forth to thank him for saving their lives in various ways. Charles wrote, "That's what made life worth living for me. I never felt more alive than when I was helping someone else better their life."

If the doctors hadn't awaken Charles I would not have gotten my chance to share what has been probably the most traumatic and wonderful week of my life with my brother. A week I will never forget and will always be grateful for. The week that ended with us both finally saying a real "good bye". I will still fax and call Charles every day but we've said our good byes and I have a peace that all is as it should be.

Charles isn't giving up even though his body is. Today he went fishing at the pond on the VA grounds with his son, Jason and his little brother Carroll. He was telling me how much he wanted to go fishing and catch one of those big ones that all the other Vets were talking about. Stocked pond, catch and release enforced, lots of big fish waiting for Charles. Can't wait to "hear" his fish story tomorrow. He can't talk... just taps on the phone once for yes and twice for no or has someone talk for him while he writes. I can just see him now being wheeled down to that pond and anxiously waiting for his fish to bite.

From ICU to hospice in a week. From pulling the plug on life support to a trach tube and breathing on his own in a week. From emotional hell to blessed heaven, "There are no tears in heaven," he reminded me. I cling to the hope that he is right. He told me that he would figure out a way to let me know that he got there alright and he would be waiting for me when I arrived myself. He told my sister to be looking for him in her dreams because he would do his best to be there. Oops, there I go talking silly craziness again. 'Scuse me, folks.

So, I couldn't write all the gory but factual details at this point in time, the way I really wanted, because of my fear of riling the demons of family dysfunction and causing further emotional destruction. So be it. What has come out here is what will remain here for now. The rest will surface over time as I exorcise my own demons in writing as I deal with the thick ugly scars of my past as revealed in the present behaviors of some "family members" during this trying time. Somehow I am looking forward to that.

Yeah, none of this rambling makes any real sense, does it?

Tuesday, March 22, 2005

Things Change

I am sitting in the ICU waiting room writing this on my Treo 650 mobile phone. Charles is still with us and is breathing on his own. He came out of surgery this morning from having his trach installed. All treatments have ceased as nothing has been effective on the tumors. In fact, the respiratory distsress was caused by a new soft tissue mass restricting his airway.

Doctors are giving him less than two weeks. Of course, no one knows what to expect. We are attempting to arrange hospice care to get him out of this hospital and let him die with dignity. What am I going to do? I don't know. All I know is these are the last moments I will ever be able to spend with Charles on this earth. Nothing else matters.

I walked beside his bed holding his hand on the way to surgery. He kept looking up at me with his one good eye and squeezing my hand. "This is as far you can go, Sir," said the med tech pushing the bed. Charles and I looked at each other, "I'll be waiting for you when you wake up, Little Bro'." He nodded his head yes.

They wheeled him through the big double doors of the surgery ward. He looks so frail yet he is very brave and courageous. Greedily clinging to every last moment of life he can squeeze out of this existence. All day yesterday he was focused on CNN and the Terri Schiavo case. I think he empathizes with her plight that is so similar to his own at this moment.

Just before the surgery doors closed between us he gave the thumbs up sign...

Sunday, March 20, 2005

Charles' Final Hours

Charles will be removed from life support tomorrow (Monday, March 21, 2005) at 1 p.m. CST. Doctors expect he will transpire any where from a few minutes to 24 hours after the respirator is removed. I am leaving soon to make the 10 hour drive to be there in time. My heart and mind are filled with all sort of emotions that I don't have the time to discuss here now and probably couldn't do justice in conveying them anyway. I have only slept an hour in the last 48 but will try to grab a couple hours sleep before departing.

I want to thank all of you who have offered your support and kind words of encouragement before I am absent from this blog for at least the next few days. You don't know how much some of the simplest comments have meant to Charles and I. Remember, your words and thoughts have power beyond what most people imagine.

I will return as soon as I am emotionally capable.

Wake Up Call About Charles

I couldn't go to sleep last night. I was so tired but couldn't make myself go to bed and stayed up surfing blogs till about 2 a.m. I made several half-hearted attempts to write a post that has been in my mind for a week about Charles, but each time I ended up deleting versus posting because the content just didn't seem like what I really wanted to say. I wanted to call Charles. In fact, I felt an uncanny urge to call him but mentally talked myself out of it several times. I justified not calling him by the facts I had already talked with him earlier in the day and that he was hopefully resting and didn't need me to wake him up. I wanted to talk with him but didn't know what I would say even I did call him at such an odd hour of the night.

At 3:25 a.m. our house phone rang. I had been in and out of sleep but never reached that sublime state of rest where I am oblivious to the real world. Deep and restful sleep. I was instantly wide awake before the first ring was completed and fumbled around my nightstand in the dark with my heart pounding while thinking, "This is it." I answered and the voice of a strange woman who was obviously at a party said, "Doug?" Realizing that it wasn't "the call" I kindly told her she had the wrong number. After her apology I hung up the receiver and snuggled under the covers spooning against the backside of my wife feeling like I needed additional comforting but not knowing why.

Again, I went through the insomniac's ritual of trying to force myself to go to sleep and began the roller-coaster in and out of acute consciousness and semi-dream state without ever achieving the unconsciousness I so desired. Then I heard my mobile phone ringing downstairs and rolled over to look at the clock and see that it was 4:30 a.m. and thought, "This is it," but then quickly adjusted my thoughts to, "No, it's gotta be the Message Center calling because they cannot find my on call engineer for a customer problem." That made more sense... didn't it? By this time the call was missed and I knew I needed to get up and head downstairs to see who had called and probably end up calling the Message Center back to get the facts of what was going on and who I needed to chase down at this ungodly hour. Customers... sheesh.

Before I could get my robe on the house phone started ringing. My heart stopped... "This was it," I sensed. No one would call my house phone after missing me on my mobile unless they were family and it was an emergency. No one else had both numbers. "This is it," I kept repeating in my mind, "This is it." I grabbed for the cordless handset on my nightstand for the second time tonight only to find its battery was dead. Damn it! "Screw the robe," I thought, as I headed naked down the hall and then down the stairs in hope of getting to the phone before the answering machine kicked in. No such luck was with me tonight.

The answering machine picked up the call. "Hello Georgia," came my Dad's voice over the speaker. "This is Arkansas calling and it is around 3:30 a.m. our time." His voice sounded wide awake and almost cheery. What the crap was going on? "Don't know when you Georgians get up on a Sunday morning but when you do, give me a call." And just as I picked up the cordless downstairs phone and pressed "talk" he hung up.

Damn it! Why was this happening like this? I immediately got my mobile and clicked on "Return Call" to my Dad's mobile phone. He answered in the middle of the very first ring.

"Hello, Tony OH," he answered cheerfully just as if it were the middle of the day and we were having a scheduled conversation versus what I knew was going to be a disturbing call.

"What's up?" I asked. The strained relationship he and I have had for most of my life was making this more difficult. More about that maybe some other time some other post.

I won't go into the details of the needless banter that was exchanged between us until he got around to saying what was the reason for the call. Charles had been moved back to McClellan VA hospital and was in ICU on a respirator. His lungs were filling with fluids and they were trying to pump them clear. He appeared to be conscious but not truly responsive due to the extensive drugs they put him on.

I found myself surprisingly calm with no emotion in my responses. That strangling feeling of helplessness wasn't scrambling up my throat and I was, at least for the moment, in control of my emotions without much effort. I listened to the assessment of Charles' condition and the only thing running through my head was if I should load up the car and hit the road to be by his side. I caught myself only half listening as I realized that leaving immediately wasn't necessarily the right idea.

"So, that's about it for now," I heard my Dad say. "I'll give you a call when we find out anything else."

"Okay," was all I could eek out.

"Okay, have a good day," he said and disconnected.

"Have a good day?!?" flashed in my brain. "Have a good day?"


It is now several hours later and the update that just came in is no better than the original call. Is this it? Who knows? I find myself praying that some miracle happens and Charles makes an amazing recovery and baffles Science, yet another voice is praying, "Father, please let him pass over in peace." I feel gnawing pangs of guilt when that voice rises within me.

Thursday, March 10, 2005

Us Kids Back Then

(Left to Right - My littlest brother Carroll, My Baby Sister Teresa, cousin Tiffany and Aunt Paula. Back row left to right - Charles and Me)
Squinting into the sun not knowing what the future held. (around 1968)

Wednesday, March 09, 2005

How Do You Say "Happy Birthday" to Someone Who's Dying?

Tomorrow is Charles' birthday. He will be "celebrating" it in between radiation therapy, stomach tube cleaning, eye bandage changes, pain medication administering, and whatnot. And that's if it is a "good" day. If it's not a good day, then he will be laying in agony and exhaustion in between bouts of vomiting and constant waves of nausea. You definitely don't want to know what it would be like if it is a worse day.

So, with all of this in mind, how do I call him tomorrow and tell him "Happy Birthday"? I have dreaded this for over a week already and am not any closer in my mind to pinning this monster fear to the mat. There has to be a way for me to convey to him that I am glad he's alive for another day of life even if he is in torment and losing the battle with cancer. How glad I am that he's still fighting. Surely I can find some way to put a spin on the whole conversation so it isn't obvious that both of us know this will be the last birthday.

No, there's no easy out for me. No softer way. No possibility of avoidance of the uncomfortable "chore" before me. I have to call him, just like I do every day, and tell him once again, "I love ya', Little Bro'." And then I need to tell him how much ... how very, very much I wish ... No, I WANT ... how very much I want him to have a Happy Birthday.

God grant me the serenity.

Tuesday, March 08, 2005

Grief Counseling

Tonight I attended my first grief counseling session at the insistence of my wife. I don't think I will be going back to this particular group. Everyone there was dealing with loved ones who had already died, some recently and some from several years in their past. I am dealing with a different type of grief. A grief that is tough to define as I am grieving someone who is suffering and dying not already dead and gone. I am not at a place where I have the luxury of trying to put it behind me because the actual death part has yet to happen. I am grieving because I know the inevitable is coming and there isn't a damn thing I can do about it. I am grieving because I am helpless to ease his suffering and unable to give him hope. I am grieving because I cannot be by his side attempting to comfort him or to just be there when he awakes alone in the middle of the night.

I am suffering from all the classical signs of grieving and severe depression. Unable to focus, unable to sleep (and when I do I dream I am the one dying), feelings of my own mortality, numbness to the realities of daily living, misperception of time and more. I may need "assistance" in coping with what I am going through but I doubt it will be through this group tonight.

Thursday, March 03, 2005

Time is Running Out

Okay, I've been avoiding writing about what's really on my mind the last few days. Of course, what's on my mind is Charles, my brother who is dying from cancer. I tried calling to talk with him tonight and we couldn't have a conversation over his vomiting. The last thing he said to me between heaves was, "I love you, Tony" and then the retching sound before the click of the receiver in my ear. I just sat here with the phone up to my ear not wanting the conversation to be over and wishing that he wasn't living through the hell he is on the other end of that disconnected line.

Charles has now been declared terminal with zero percent survivability chances. At least, that's the third hand information I am getting from those on the front lines with him, namely my Mom and Dad. They are not the best at relaying medical information in an objective or concise manner. But that's another story that may never be told in these posts.

Charles is declining further and has lost more weight. His body is rejecting the tube feeding of the Ensure drink they've been feeding him from a drip bag so now they have moved him to Similac in hopes he can keep it down... yeah, same thing I thought... that's baby formula. Well, from the way our conversation went tonight I would say that the Similac isn't working too well, either.

They are continuing to give him radiation hoping to reduce the size of the tumor mass to relieve pressure from his brain and to keep it from shutting down his heart and lungs. It is a lost cause and the doctor says is mainly a gesture to Charles to encourage him not to give up. Prolong his agony? He is scheduled for another round of chemo in two weeks. There is question if he will make it that far. My question is why keep poisoning him further if it isn't going to help him and only makes him sicker?

I'm not making much sense right now. Need to rest.

Good night, Charles. May the angels comfort you in your sleep tonight.

Saturday, February 26, 2005

Palliative Care - Waiting To Die

  • "Palliative care is an interdisciplinary model that focuses on the comprehensive management of the physical, psychological, social and spiritual needs of patients with all types of progressive, incurable illnesses and their families. Palliative care ensures that values and decisions are respected; comfort is a priority; practical needs are addressed; psychosocial and spiritual distress is managed; and opportunities are available for growth and resolution."

Charles was transferred to Fort Roots VA Hospital, North Little Rock (NLR), Arkansas last Thursday. We grew up in NLR and Fort Roots was always known as the "Nut House" where insane people (veterans) were kept. How it came to be known as this is hard to say but the stigma still holds true in Charles' heart. Fort Roots was spoken of in whispers and images of decrepit, slobbering, child-murdering maniacs made us steer far clear of the old buildings that always looked vacated to me. Jokes and threats of "be careful or you will be sent to Fort Roots" were common.

Now the jokes are no longer funny or just scary stories to make children obey or stay away. The reality of Fort Roots in our lives today enlivens those childhood horror stories and engulfs us like the glowing green gelatinous blob devouring everything in its path in those old 50's horror movies. Devouring Charles. Devouring and suffocating our hopes.

  • "Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families."--World Health Organization. Technical Report Series 804, Cancer Pain and Palliative Care. Geneva: World Health Organization 1990:11.

Charles was distraught to find out about the plan to transfer him to Fort Roots because all he could think about was that it was the end of the road for him and that he may never come out alive. That he may never go home again. He fretted over it daily and pleaded with family members to not let him die in the hospital. To promise him that. And not to die alone.

I tried to hold to that promise and lived in the hospital 24 hours a day most of my stay there, even sleeping by his side. A few nights I shared with my "little sister", Teresa who was down from Indianapolis but the sharing did little to ease the pain of watching what was transpiring with him. Sleep is impossible whenever you are awaken every few minutes either by alarms on the IV pumps, or nurses giving scheduled meds or pouring more anti-nausea and liquefied morphine into the tube protruding from his emaciated stomach, or by the wet gagging upheavals of the mucositis that threatens to choke him and drown him in his own fluids.

At some point during one of those agonizing time slowly slipping through molasses nights, I realized my own limitations, commitments and life responsibilities would not allow me to be the one who ensured his requests were met. I too was bound to fail Charles when he might be needing me the most.

  • Palliative care specialists typically work in teams and usually are needed when the disease is advanced, life expectancy is short, and problems become complex and more urgent. In practice, these problems most often relate to uncontrolled symptoms, conflicted or unclear goals of care, distress related to the process of dying, and increasing family burden.

When Googling Fort Roots I was hard-pressed to come up with much on what is really going on inside. Charles is miserable and describes it as "the pits". He says, "It's a f***ing nursing home!" and gets angry with me when I ask him about the care he's receiving versus the care he was receiving in the primary care facility he was in while I was with him in Little Rock. He gets angry because he feels helpless and trapped. I get angry because I am helpless and trapped.

I feel guilt that I should have stayed just one more day to have been with him as he transferred to Fort Roots so I could see firsthand the difference between the two facilities. So I could have cornered his doctors and made them state explicitly if he was now considered to be under palliative care. If now, we are all just waiting for him to die without hope of a miracle recovery.

  • The dying patient requires medical care for a variety of physical symptoms and needs. Medical treatment is now focused on making the patient as comfortable as possible. This treatment includes managing pain, fatigue, shortness of breath, and nausea and vomiting. The medical team should monitor the patient's treatment plan closely and review it to make sure that it is in the patient's best interests and in line with the goals of the treatment plan. This process may involve revising the drug regimen and discontinuing any unnecessary medications, deciding whether to continue nutrition, determining whether hydration (giving fluids) is appropriate, and providing comfort without artificial ventilation. The patient should be monitored by a nurse who can help to make him/her more comfortable by treating pressure sores (bedsores), bladder and bowel needs, immobility, and secretions. In some cases, when symptoms are unbearable and cannot be relieved, sedation may be offered to ease patient suffering.

That pretty much sums it up where we are today. At Fort Roots waiting. The one hope that I hold out for is the promise of Charles' primary care oncologist that told him that if it ("it" being death) became an inevitability then he would release him (at Charles' request) with pain medications to keep him comfortable and send him home. He told him that right in front of the entire family. Promised him.

Why do I have the feeling the doctor is lying? Why do I, in a way, hope he is lying? Why do I feel that my family doesn?t want Charles to come home even though they all promised Charles they would support that and not let him die in the hospital? Maybe because, in private, they have all reneged and told me they can't handle Charles being at home and dying and no one can care for him as he will need.

Who am I to bring into question or expose their secret (secret at least to Charles) whenever I myself cannot afford (in time and money) to be there to take care of him the way he will need to be taken care of at the end. Who am I to sanctimoniously criticize or question their love or devotion of Charles by their unwillingness to sacrifice and watch him die in his or their home? I can't. I simply can't, though it angers me to know I am hiding from him the obvious truth of the broken promises made. But I can't because I too am guilty and realize that not all promises can be kept no matter how sincerely pledged.

Friday, February 25, 2005

Emotional Twilight Zone of the Brain Dead Zombies

After driving back to Atlanta from Little Rock through the pouring rain I finally arrived home around 11 p.m. EST feeling like I was drained of all capabilities to think or feel anything. Yet, I was up by 5 a.m. the next morning going over the nearly 300 work e-mails that have accumulated during my absence of the last 11 days. I found myself merely clicking and staring without comprehending much of what was being said. The only things that stood out were the glaring lack of apparent support I've had from my staff while I was gone. More on this later, I am sure.

I went through the motions of getting ready for work and dreading trying to concentrate beyond my own skull. I spent much of my day shuffling papers in an attempt to organize an overwhelming workload and unable to pick up my phone to talk with anyone for fear of getting too involved or being unable to speak without choking up. Staring blankly at my computer screen and counting the ceiling tiles doesn't get a lot accomplished, I found.

I also discovered I was more tired than I think I may have ever been in my life. Tired to the bone, as they say. Tired and drained emotionally (how many times have I cried over the last several weeks? How many times SHOULD I have cried over the last several weeks?). Exhausted to the point of mental shutdown beyond the basic functions necessary to keep my heart beating and my lungs breathing. Seriously tired.

My loving wife recommended an early bedtime after drinking some chamomile and valerian root tea and I took the opportunity without hesitation. I slept better than I had in several weeks and am feeling much better today. However, the work is still almost insurmountable and intimidating but I think a lot of that is because my head still isn't screwed on straight. Hopefully, I will make some headway today and use the weekend to do some more catch up and resting. Is it possible to catch up on work AND rest at the same instance?

Tuesday, February 22, 2005

Ayden Harper Stowell Arrives

My first grandchild, Ayden Harper Stowell, born: February 22, 2005 @ 7:25 p.m. CST in Little Rock, Arkansas USA. 6 pounds 14 ounces and 19 3/4 inches long. Mother Shannon Marie O'Connor-Stowell and Father Mark Stowell are doing well and are jubilant at his arrival after a worry-free delivery at Baptist Medical Center.

The irony isn't lost on me of the potential for losing my younger brother while gaining a beautiful new life in my grandson. My emotions are so balled up in me right now that I cannot really comment too much further but will only say I am blessed beyond measure.

I am opting to be called Papa and hope this sticks. Seems a bit more dignified and "classy" as compared to "grandpa" or some other such moniker. I am still amazed that my little girl has grown up so quickly and is now a mother herself. I had constant flashbacks of her own birth while awaiting Ayden's arrival.

Life is so short...

Monday, February 21, 2005

The Normal Life

I am sitting in the waiting room of CARTI waiting for Charles to have his first radiation treatment with this new bout of cancers. He continues to decline and weaken. This morning he told me he didn’t know it took so long to die. I had no response for him and my mind searched frantically for something positive I could say. “Maybe you should be thinking about how long it takes to live, Charlie,” I was finally able to whisper. He looked at me and smirk spread across his partially paralyzed lips. “Yeah,” he croaked. “Yeah.”

Dr. Pena (not his real name but because his real name is so hard to pronounce he tells us all to call him that), briefed us on the results of his evaluation. There is a “slight” overlap of soft tissue that was the uppermost area of his previous treatments that will be exposed to radiation again during these treatments. He is concerned over this but feels he can reduce the impact by only giving ¾ of the dosage recommended in hopes of shrinking the tumor enough to be able to retarget the radiation cone outside of the overlapping area. He wanted us to know the risks of radiating this overlap area. It may mean anything from surgery or antibiotic treatments to correct the problems that could occur… or even possibly death caused by the very radiation that we are hoping will save (or at least, extend) his life.

I am sitting in the waiting room of CARTI waiting for Charles and praying. God, are you really listening? I am sitting here wondering what I am going to do as my time draws closer to having to leave and go back home and try to live a “normal” life. Back to my wonderful wife and 9 ½ year old son and the life of being father and husband. Back to my job that I have tried not to think about for over a week while all of my emotions and thought processes have been consumed by grief and grasping for hope in the slightest signs of improvement with Charles. Back to being out of the loop and only hearing second hand updates on Charles’ progress that never seem to contain the answers to the questions I would have asked had I been there in person. Back to waiting for that phone call that I don’t want to answer that will tell me that Charles’ suffering is finally over and he’s gone. Back to the life that I have so often taken for granted and now cannot allow myself to do so again.

Things must be different for me. I must take the soul searching lessons I have learned these last months and apply them to my own life so that when it is my time to face death I can do so knowing I have given it my best shot and will leave the world somehow better than when I was born into it. Honestly, I have not done that to this point in my life. I have half-stepped when I should have leaped. I have procrastinated when I should have been proactive. I have complained when I should have praised and counted my blessings. I have sat when I should have been running. I have dreamed when I should have been making those dreams a reality. I have been depressed when I should have been filled with joy and awe of life. I have succumbed to fear when I should have had bold courage. I have remained silent when I should have been shouting from the rooftops.

God forgive me for I have not lived or loved as I should have. God forgive me for I have sinned in what I have done but more importantly, in what I have not done.
I have a lot of internal rewiring to do…

Charles’ biggest fear is dying alone. I am powerless to promise him that that will not happen. All because I must soon return to my “normal” life and leave him to whatever his destiny is in my absence. I can never have a “normal” life again. Of that I can indeed promise him.

Sunday, February 20, 2005

Smoke In My Eyes

I just walked back inside from having a cigarette. The guilt and shame of smoking hangs over me even more than the stench of the cigarette I just put out. I have quit smoking many times in the past but have always found some lame excuse for picking back up the habit and continuing just as if I had never stopped.

Mark Twain is quoted as saying,

“Quitting smoking is easy… I’ve done it hundreds of times.”

It would be funny if it weren’t so damn true and so tragic of an assessment of my own experiences with quitting.

Here I am struggling with the emotions and fears of my younger brother fighting to live through his experience with throat cancer that most assuredly was caused by his life-long habit of smoking (mixed with alcohol) and I myself am exposing my body to the cancer causing agents of his disease. What stupidity and ignorance… what a fool I am when I know the risks and dangers of something I should be able to control. How weak I am and what a poor “witness” to him in a time when he needs my utmost support and considerations. God forgive me. God help me.

I picked up a flyer at the hospital yesterday on one of my breaks from my bedside vigil. It was a positive piece on the benefits of quitting smoking and how your body heals itself beginning as soon as you snub out that last cigarette butt. Maybe contemplating it here in my blog will be an encouragement to me and others who are battling the demon of tobacco. (I don’t use “demon” here as a spiritualization or personification of tobacco but only as literary license to personalize my own struggle with this nasty habit)

When you stop smoking, your body begins to heal itself immediately. If you are thinking about quitting, you should know:

20 Minutes After Your Last Cigarette
Blood pressure drops to normal
Pulse rate drops to normal
Temperature of hands and feet increases to normal

8 Hours After Your Last Cigarette
Carbon monoxide level in blood drops to normal
Oxygen level in blood increases to normal

24 Hours After Your Last Cigarette
Chance of heart attack decreases

48 Hours After Your Last Cigarette
Nerve endings start to regrow
Ability to smell and taste is enhanced

72 Hours After Your Last Cigarette
Breathing becomes easier
Lung capacity increases

2 Weeks to 3 Months After Your Last Cigarette
Blood circulation improves
Walking becomes easier
Lung function increases up to 30 percent

1 to 9 Months After Your Last Cigarette
Coughing, sinus congestion and shortness of breath decreases
Your body’s energy level increases
Your lungs are better able to fight infection

5 Years After Your Last Cigarette
Lung cancer death risk decreases

10 Years After Your Last Cigarette
Lung cancer death risk drops
Risk of other cancers drops

Fighting the Good Fight

Over the past week, nearly 24 hours a day, I have stood by my brother Charles’ bedside in a VA (Veterans Administration) hospital called John L. McClellan Memorial Veterans Hospital in Little Rock, Arkansas. In July of 2004, Charles was diagnosed with throat cancer. That cancer had a hideous and horrific sounding name of Squamous Cell Carcinoma and the family was devastated.

Over the months I have observed Charles decline in health from an approximate 160 pound healthy man to a 94 pound skeletal wraith barely making a huddled mass under the rough government issued hospital blankets. In fact, it is hard for me to focus enough to even consider the husk of a human lying there as being the same person I know as my younger brother.

Charles is an Air Force veteran and thus qualified for treatments through the VA. He was a part of a phase II experimental protocol clinical trial that consisted of large doses of a three drug chemo cocktail and 35 consecutive days of concentrated radiation treatments… the last two weeks of which were two-a-day treatments. The treatments were considered the best hope of beating the Stage IV cancer even though it was unknown if he would survive the treatments themselves. The last radiation treatment was just before Halloween of 2004 and the following December he was declared “cancer free” after his CT scan. Charles and the family were elated and whispers of a miracle circulated even though there were some who felt uncomfortable with such a pronouncement.

Charles struggled with recovering from the treatments and continued to lose weight and fight dehydration and malnutrition and trying to control his pain. Several more stays in the hospital to keep him hydrated finally led to one night when he burst a blood vessel in his throat and found himself once again back in the hospital with complications. Emergency surgery to cauterize the wound ended up revealing that there was what looked to be new tumors and the nightmare deepened.

That brings us to this week and the long hours I’ve spent at his bedside as we all wait for what is to come next. A two inch tumor as been discovered behind his nasal passages and is pressing dangerously against his brain cavity. He has partial paralysis of his face and right eye. It is unknown if this is new cancer or a metastisization (to spread to another part of the body, usually through the blood vessels, lymph channels, or spinal fluid) of the old tumor. He has already undergone another round of standard chemo and they are pumping him with steroids and electrolytes to prepare him for radiation in hopes of reducing the tumors in size and thus relieving the pressure on his brain.

He will be treated at CARTI with the rare and famous Three-dimensional (3-D) conformal radiation therapy. This treatment is an innovative high-technology radiation technique. Computer simulation produces an accurate image of a tumor and surrounding organs so that multiple radiation beams can be shaped exactly to the contour of the treatment area. Because the radiation beams are precisely focused, nearby normal tissue is spared. CARTI is one of only four locations in the United States that has the equipment and technology to do this sort of treatment. I believe this is also called Tomo-Therapy (also read this and this) and is considered a second great hope for those who have a recurrent cancer or one too large to remove with a gamma knife treatment near the brain.

All of this is a severe over simplification of what is going on with my brother and what he is facing in his battle with this insidious disease. I thought that maybe putting some sort of verbal “face” on it here may help me to cope with what’s going on. It doesn’t. The tears and fears are all still here in my heart.