CONVERSATIONS WITH GOD:

I pray and I pray and I often write my prayers, and when I am moved to hear an answer, I write that too. Here is the answer I got to my sorrow over this almost-40-year-old-body which is increasingly... well...almost 40.

GOD SPEAKS:

This is beauty. How can you not know that? Every dip and every valley in that skin you stare at so sadly. Those wrinkles, those scars, the bends and kinks in your swelling joints, the fleshy curves at your hips and waist. These are a map, every line and every shading a testament to all the places we have been, you and I together, as I led you on this journey that is your life. 

Did you not know? Do you not see? I am a painter! I paint with oils, thick and deep, mixing, pitting, brushing onto your canvas in colors brilliant and subdued. But it is the textures, the texture which is the key. My medium is not a simple color, flat and 2-dimensional. It encompasses height and weight, the oils thick or thin or sporadic from my brush. This is the beauty of my work. You are an oil painting. How can you long to be flat and smooth and shinny as you were?

I am a painter. Is a blank canvas the beauty that you crave?

I created you long ago, a blank canvas, as I create many whom I love. As any painter, I love a canvas, blank and white. To see it there fills me with excitement, with joy. It fills me with love. 

Do you think that this love comes from the whiteness of the canvas? Should I hang it then, on my wall as it is, unmarred, untouched, smooth and sleek? Would I love it if I did? No. What I love is not not the canvas. It is the potential, the excitement of the creation which is to come. Do you think this love, this joy would exist if I did not paint? If I did not intend, anticipate something better that is to come, something better than the smooth surface and bright, perfect face? 

Upon you, once a blank canvas, I have created. I have practiced the glory of creation. Each brushstroke has added texture, color, form. I have added, every day for forty years, another layer, another dip and valley, here and there, and your body has changed with my brush, colored and deepened, textured and shaded. 

Your wrinkles are deeper, the lines in your skin are longer and more pronounced. Your hands are rough and calloused. There is a scar bellow your right wrist. Smaller scars and transient cuts mar your arms. There are freckles here and there. Is that a sun spot beginning to appear?

What do you say to someone who has just disclosed to you that their life is a constant struggle with pain and illness?

You are talking with a casual friend; you just met someone and are hearing about their life; you ask a question of an acquaintance and it leads to raw details you didn’t expect. You are uncomfortable and wish you could get away. or you are moved to really care and want to say something that will make their pain less. 

What do you say? 

How do you respond? 

COMMON ANSWER ONE: “It’s going to be alright.” “Everything will get better.” “You’ll be doing better soon.”

Assurance that everything is going to be alright is okay for close friends and family who have lived this illness with me day after day and changed their lives to help me through. It is not an appropriate response from a new acquaintance or a friend whom I don’t regularly share the intimate parts of my life with. And with this kind of response, even the intimate friends probably need to watch out.

In most situations and from most people, such a response is designed to make you (the speaker) feel better, not me. You may think that your desire to reassure me that everything will be alright comes out of the burning compassion and love you feel for me when you hear how difficult things are in my life. But most of the time, those words actually come from your desire to alleviate the discomfort you feel at my pain. It is uncomfortable, even intolerable, for you to think of me suffering, day after day with no reprieve. You want to force all the loss and pain that makes up my life not to be true, or, at the least, not to be true much longer. You grope around for some way to do that, and what you come up with is, “Its not that bad, it will be okay.”

The truth is, it probably will be okay. Because I am a strong person who can find a way to love my life no matter how painful the path I am given. But that doesn’t mean it is not “that” bad. It is every bit “that” bad. I’m just every bit that strong. 

And no matter whether I’m okay or not, the fact is, you have no way of knowing whether I will be okay or not. You have no way of knowing whether I will break under the pain of things or whether my body will continue to deteriorate until I cannot walk or go to the bathroom by myself or speak clearly anymore.  You have no way of knowing whether my pain will increase until I am unable to bear it, or I will become too weak to lift my head off my pillow, whether I will gain weight uncontrollably, become ugly and develop neurological twitches which people will stare at in public. All of these things are possible and the reality of my life is that I have to consider them, worry about them, be aware of them, every day. 

Flying

     I almost got kicked off of a United flight today. I didn’t - I’m still on that flight as I write this, somewhere over Kansas, I believe.

     I arrived at the airport, traveling alone after visiting my husband who is working out of state. I hate traveling alone because this illness makes a day with that kind of energy output miserable, and because, if I begin to have problems, I am very much alone in dealing with them. We’d ordered me a wheel chair, but I didn’t go get it because a) I wasn’t sure where to go for that and b) I thought I could get by without it. I began to question that decision at the first long line I had to stand in. Standing for very long is difficult for me. But my gate wasn’t far away, and, while I was feeling ill and shaking a bit by the time I got there, I made it to the gate. I told the woman at the desk that I would need to pre-bored, as I didn’t think I could handle standing in another line, and she got me on the plane first thing.

This Is What Living With A Chronic Illness Is Like (Installment One):

[The following is one piece of a collection I am working on both to help people understand the experience of living with a Chronic Illness, and to explore (creatively) my own life experiences. This is being written in bits and pieces, and I will share them as they come.]

This is What Life With A Chronic Illness Is Like:

“One day you feel relatively great...the next day you can hardly move or get out of bed...One minute you’re straightening up the house or garage and the next instant you’re exhausted.”

Coping with Chronic Illness by H. Norman Wright and Lynn Ellis

    Note the word “relatively” before the word “great.” That right there shows that this was written by someone who understands what this kind of illness is like. 

I regularly find myself so pleased that I am in less pain today than I was yesterday or so much less exhausted than I have been, that when someone asks how I am doing today, I tell them, “great!” And they say, “Good! You’re not in pain today!” And I’m thrown for a loop by that, and stutter, “Well, no..I mean...some...I mean the pain in my legs is bad enough that I’m having a little trouble walking, and it hurts to breath, and my hands burn and my head aches, but...you, know, its not that bad...”

    Its all about “relatively.” My standards for a good day are drastically different than anyone else I know.

This is What Life With A Chronic Illness Is Like:

    Once you’ve lived with an illness long enough, a number of things happen. 

    First: You toughen up. Simply feeling sick is not enough to slow you down. A moderate level of pain is hardly noticed anymore. You may be laughing and bustling around and you look like you’re fine. But 90% of the population would be moaning and in bed if they felt like you do right now. 

    Second: You smarten up, and this enables your illness to hit a slightly more even keel than it once did. You know how to balance your energy, eat the right foods, and you have found a treatment or two that helps. So, unlike the beginning, you now have some days when the illness is not as sever as it can be, when you can, for a short time at least, live some of your life. 

    Third: You do neither of these things. Sometimes. Some days. You’ll go months toughing your way through pain and exhaustion, at peace with how many of your dreams you have lost, loving each day simply because the sun is shinning or your cat loves you. Feeling somewhat proud of how well you deal with such a hard life. Feeling spiritually enlightened and strong. And then, suddenly, you are undone by the smallest little pain in your hands (not nearly as sever as usual, not even enough to prevent you from picking things up). You cry, and you huddle on the couch and feel miserable and sorry for yourself beyond all description. And you want pity and you want everyone around you to know how hard it is - the pain, the exhaustion, the loss of everything.  And you’re petulant and childish and overwhelmed with sadness, with anger, with grief. 

    It builds up, you see, the pain. Putting up with it, day after day, hour after hour, pushing it back in your awareness so that you can live your life (at least a little bit) and its always there, and its always wearing away at you, at the wall you put up to block it out that never really does. And eventually the shear weight of it is too much and you crumble, if only for a little while, you crumble beneath it and you curl in a ball and quiver because you cannot handle one more minute of being in pain. And the thing that tipped the scale was a small thing, compared to most of your pain: A straw added to the camel’s back.

    And exhaustion is exhausting, you know, over time, as much as any pain. It wears away at your reserves, gets heavier and heavier every day until it crashes down, all at once, and what you handled for weeks with a smile suddenly leaves you sobbing in bed and throwing things. You don’t know why your family can’t understand how wrong this is, how miserable your life, how hopeless all that you are facing. You want them to feel it, to recognize the horror of it, and never mind that yesterday was ten times worse but didn’t bother you half this much.

    The reality of chronic illness is that, no matter how well you usually deal with your struggles, the constant stress of dealing with such a difficult life, day after day, periodically catches up to you, and you find, at least for a little while, that all of a sudden you are not strong, you are not smart, you are nothing but angry and sad and incapable of dealing with this life one moment longer. But, of course, you don’t actually have a choice in the matter, so eventually you finish your tantrum and go back to being strong, smart and spiritually enlightened, at least for a little while.

This is What Life With A Chronic Illness Is Like:

“Sometimes you feel almost well, while other days you’re incapacitated.”

Coping with Chronic Illness by H. Norman Wright and Lynn Ellis

One of the biggest problems of life with a Chronic Illness is how variable it is. I tell people that I am too sick to work and unable to take care of myself. Then they see me shopping at the Sat. market, zipping down a hiking trail or re-organizing my garage. How are they suppose to make sense of that? 

    They don’t know that this is the first hike I have been on in three years and that I will likely be unable to handle this kind of activity again for another three. They don’t know that I am shopping my heart out now because it feels so good to do something, but that in five minutes I am going to crash and will be unable to drive or even get myself back to my car.

Its the same with using my handicap parking flag. I get out of the car and I find myself affecting a limp, or exaggerating any aches and pains in my body. I’m embarrassed to be seen using it unless it looks like I need it.

But looks or not, I do need it, even though, most of the time, I’m not using the flag because there is anything wrong with my legs. Most of the time, I use my flag because my energy is so limited that I know I’m likely to crash and be unable to drive home without a moment’s notice, and every little savings of energy may make the difference between my getting home or having to sleep in my car. Or because my energy is so limited that searching for a parking spot or walking an extra 30 feet, is likely to tip the balance between me being able to run an errand on my own or having to wait (again) for someone to do it for me. In the city, where finding parking is a real challenge, that parking flag is the deciding factor on whether or not I can ever leave the house on my own. It is my independence.

But I am use to pain and I am use to exhaustion. And by now, I have trained myself to smile and hold up my head and look normal unless things get really bad. This isn’t because I am trying to hide from reality. Its because moping around, limping and looking miserable makes you miserable. It makes you feel needy and pitiful and weak. And I can’t live like that. Oh, don’t get me wrong, looking like hell has its place, and its important to honor the way you feel. Its important not to insist on hiding it all the time. But sometimes you have to smile and put on a good face because when you are sick all the time, too many days of looking the way you feel just perpetuates depression. And I can’t live like that.

So, I smile and hold up my head and put a spring in my step for as long as I can, not for anyone else’s comfort, but because it is essential to my own self esteem. And it helps me get through the day. But then I use my parking flag, and I don’t look like I need it. And people glare at me, or shake their heads and make a pointed comment to their neighbor, or even walk up to me and say, “Some people really need those spaces and its disgusting that people like you would take advantage of that.” And, while part of me thinks that I ought to feel grateful to those people for being so committed to protecting the rights of people who (like me) desperately need such help to get by. But really I’m just so furious I can’t see straight. And its so upsetting that the next time I use the flag I find myself limping or putting on my most pitiful, sick-person persona and I cary a cane or lean heavily against the side of the car, not because I need to, but because I can’t bear to deal with another person who is convinced I am taking advantage of easy parking because I am lazy, self-centered and dishonest.

Love and Death at the Ranch

[WARNING: This story is upsetting and raw. If you are not up for that, skip this one for now.]

I killed a horse today. Held a 45 to her skull and shot her through the head. She fell so fast I hardly computed that she was dead - but there was the hole in her head as proof, pulsing out blood like a broken pipe, thick and red and pulsing. She was dead before she had time to notice the gun. The hole was simple and neat and clean. There was no splash, no mess, not even any dust on my shirt. I just reached up and pulled the trigger, heard a pop, and she was down. 

I had expected the killing part to be harder than it was. That somehow the gun would be heavy, the trigger would take strength to pull. I thought I’d have to hold her head and struggle to keep her still. But I didn’t. The gun was light in my hand. It rested exactly where it was suppose to go. The trigger was easy to pull. I squeezed and it was done. She pitched sideways as her legs collapsed and hit the ground while I was still standing there, expecting to have something more to do. 

I had ear protection - good, professional grade shooting headphones that cancel the sound so well it is hard to hear the voice of a person standing two feet away. They dull the sound of a gunshot (even a 45) from a thundering explosion to a remote pop. I had known that the sound - the percussion of the explosion - would make the killing all the more abrasive, painful, lasting. Would exacerbate the violence of the act. So I thought ahead and brought my headphones. My good ones. And the sound, even standing right there, less than a foot away, was nothing. Remote. 

I talked to her before loading her into the trailer, and after unloading her, and before walking her into the woods. She struggled to walk those first few steps, hobbling on legs that shook and stuck in place with pain. I stood for a minute, my face resting against her forehand and called her, dear child, in a quiet, gentle voice. I told her it was almost over. She had only a little way to go. I just need you to walk a few more steps and then I’ll take care of everything. That’s all you need to do.

Come baby-doll. Come my dear one. A few more steps. That’s all.

She followed me, trusting, into the woods, no longer hesitating despite the pain in her legs. She walked willingly through the trees, over the downed branches and the undergrowth and down the overgrown remnants of a trail. When we reached the place that I had chosen, I stood for a minute and thanked her again, told her she was done, told her I was going to take care of things and the pain would be over soon. It was like she’d been in a trance, these last few hours, her big eyes fixed on me, calm and trusting. Trusting me to do what she needed to have done. 

I floundered for a moment, looking for the right words, the right ritual to send her on her way. And I sensed right away her trance begin to slip. Her eyes left my face and she began to look around. She shifted uneasily and lifted her heard. In a second of clarity it was clear to me that the ritual, the something more, was something I needed. She didn’t need it. She needed me to act quickly and decisively and do what had to be done. She needed me to continue with confidence while she still rested in her trust in me, before my hesitation and emotions brought her back to fear.

I stopped talking and lifted the gun. I placed the barrel against her skull, against the perfect white star in the center of her forehead. And I pulled the trigger, just like that. No stopping to reposition, no rehearsing the lifting of the gun. No careful evaluating of the angle or position of my arm. Before she could register what I was doing, I pulled the trigger just like that. And she was down.

I had thought out the method, picked out the place, been talking to Stormy for weeks, asking her to tell me when it was time for her to go. I had known for most of a year that her time was coming soon. I knew that I wanted her body to give back to the world - feed the wild animals, fertilize the ground. I thought this would feel beautiful to me, that the killing itself would be hard but once her spirit was gone I would be at peace to let her body take its place in the circle of life. But the killing was too easy and I stood over her body, and she did not look at peace in the wilderness, she did not look like a natural part of the beauty of the land. She looked like a beautiful body that I had loved, brushed, smelled, laying twisted on a hill. 

She had fallen almost on her back, her leg splayed over her face. I moved her leg aside to look into her eyes. I needed to be sure she was truly dead and gone. The glossy, empty eyes felt of peace and death, but when I looked away from them again, at her body, awkward and tangled, it did not feel of peace at all. It felt like one I had loved, dead violently in a pile at my feet. 

I found myself wanting to lay her out so that her legs rested gently on the ground and her head lay peacefully, as though asleep. I was quite sure that this did not matter one bit to her. But it mattered to me, and I wished that the last picture of her with which I was left was of a peaceful, sleeping death - not this mangled, strangled, picture of violence and stress.

Her coat still shown a glossy black and her muscles still gleamed, and I wanted to run my hands over her hips and legs and back. But her lips were pulled back and her tung lulled out and her legs stuck up at an awkward angle and she didn’t look like part of the wilderness at all. No hiker, stumbling into our thicket in the woods, would find her a peaceful sight and be comforted by the beauty of her body’s journey as it returned to the earth. She looked dead and there was a hole in her head and blood pooled beneath her face and gushed out of the hole as though it would never stop. And soon the bear would come and the coyotes and the wolves, maybe a mountain lion or two, and the flies and the worms, and none of this would be the graceful, gentle merging with nature that I imagined it to be.

The fact is, there is nothing graceful about a bullet in the head.

Nobody taught me how to do this kind of thing. Killing, in the city world from which I come, is a cruel thing, evil, to be shunned at all costs. Nobody told me that sometimes killing is is a kindness, or that even so, the killing itself is never kind. 

Who, in my city world, prepared me for dealing out death? Who told me that being responsible for the lives in my care would eventually mean arranging for their deaths? Who warned me that a gun, bought for protection, would be used to kill a thing I loved because it was my job to see that she could die?

Stormy was in pain. She had rallied and recovered many times. It was clear to me that she would not recover again. My horse, the dear, quiet girl with the long face and sleek black body, who never refused a person’s request but ruled the other horses without a second thought, was at the end of the life she was meant to live. For years she graced my pastures, raised my weanling foals, and ate the food that I provided. Now she couldn’t walk without pain. She had stopped leaving the barn to find food. She wouldn’t graze, she was hardly willing to walk twenty feet to drink water anymore. In the wild she would have been left behind long ago, taken down by an animal that was younger, stronger, at the beginning of its time to live. But this old girl was not in the wild. She was in my care.  She had long ago made the deal with my kind that she would obey and serve, in return, would provide for her that which she needed but could not provide for herself. And today the thing she needed but could not provide for herself was death.

She stared at me when I came into her stall, big eyes calm and deep, looked right into me, and waited for me to do for her what she couldn’t do for herself. And so I did the thing that was mine to do. I slipped the halter over her head and whispered to her quietly while I stroked her neck and scratched her ears. Then I led her to a trailer and drove her to the woods and I shot her in the head. I left her body for the wolves and bears to eat and I went home and cleaned my gun.