I wrote this one in 1995, but things are worse now ((the world))
We all make choices everyday. Some crucial, some not, and sometimes the ones that didn’t seem significant in the moment turn out to change our lives forever. We choose based on the best information available at the time and either live with the result or try to correct the mistake. When you know you have something like neurofibromatosis, the choices are different.
Making choices about our health care may seem insignificant when we are young and healthy. We may think we don’t need the best of the best—until the worst happens. But regardless of our choice, ill health can impact us for the rest of our lives. Sickness may leave us destined to the never-ending challenge of fire quenching and racing at 100 rpm’s in neutral while attempting to procure what we need to help make us well or at least make us feel better.
Fighting health institutions that are meant to protect us would be a daunting task for anyone, but for someone sick and in pain, it is indescribable, especially if one is fighting alone. With no one to help make the calls, write the letters and do battle with the powers that be, it is always tempting to give up and withdrawal into the very private hell of pain, despair and hopelessness. One just doesn’t have the resources to spare when ill.
While the responsibility of taking care of ourselves is certainly ours, the responsibility to provide the best possible care for those that who fall ill lies squarely on the shoulders of the purveyor of health services. The people that promised to be there if the unthinkable happens: the insurer and the provider of care. Unfortunately, we have reached a new low with regard to the quality of health care. And while there is plenty of finger-pointing to go around, we must try to tease out blame from responsibility.
The inurer's responsibility is to pay what they promised to pay, in a timely manner without causing more pain to the patient. The provider’s responsibility is to deliver the best care possible, apart from whatever the surrounding politics of the facility may be. If the facility’s objectives are not in the best interest of the patient, they best re-examine their motives and mission statements or open themselves up to more and more lawsuits. Frivolous lawsuits, especially the class-action type that cause institutions to scream for tort reform year after year, have made it difficult for those with legitimate complaints of wrong-doing.
And there are plenty of legitimate complaints. Plenty of wrong-doing. Plenty of turning a blind eye to those that are ill. It is bad enough when the general public looks down it’s nose at those in need, but when the very people in charge of helping the hurting do the same, it’s disgraceful. When a healthcare provider is more interested in their politics and policies, when patients are not the first, second or even third concern of the administrators, that attitude trickles down to the doctors, nurses and other care-givers, leaving patients with no where to turn for whatever problem that brought them there in the first place.
Which brings me to the story of the frog. When dropped in boiling water, it will hop out of the pot in an effort to save it’s own life. But if the frog is in water that is room temperature and the heat is slowly increased in small increments, it won’t notice when it’s about to boil to death. Is it me, or is it getting hot in America?
Thursday, January 13, 2011
Wednesday, January 12, 2011
My NF Helpmates
This was written in 2005, just before my mastectomy. I wanted to re-post it as a tribute to the son of a friend of mine, whom I just discovered passed away in November. Steven, I never met you, but your mother bragged about you the few times we spoke over the years. She and your dad loved you very much; they knew you were hurting, and I know they wished they could have done more. And I know you know, they did the best they could. God rest your sweet soul
. They surround me always, even when I don’t know it. Especially when I don’t know it. Being unaware of them is, perhaps, when they have the most powerful hold on me, helping me through life, unasked, but knowing what to do and when to do it. I knew many of them when they were alive. Then too, I disregarded their advise many times, but unlike now, I knew when they were around, meddling, as it were. At least, that is what I called it, and in fact, that is what it was to me. Now, I see them only when I close my eyes and call upon them. Now, unlike then, I am in great desire of their services.
Lost is what I am, mostly. Ida seems the most vivid for some reason. I’m guessing it’s because she was the only one who spoke honestly, openly about death and dying. Though very ill in her last years, she was unafraid of the mystery that we all face every day of our lives, though seldom, if ever, speak of it. The same mystery that surrounded us before we ‘came to’ in this consciousness, and came into being. Is it what we go back into, after we cease to exist in our bodies, blindly groping our way to what we once knew? Why does the thought of dying, when we know we are, send so many of us into panic? Is it because it’s unknown, or because at level, we remember something awful? Ida spoke of it so sweetly, so softly and so confidently. She didn’t fear death, and told me not to either. When her husband, Phil, died four years prior to her, I was only eight years old, too young, my parernts thought, to go to the funeral. But I clearly remember gazing out my bedroom window up at the night sky, wondering what ‘eternal’ meant, wondering where my grandfather was now, unable to fathom, as I still am unable to do, what forever is.
I knew I would never again see him as he was, but could not imagine what he is now. So now, when I close my eyes and ask for help from any one of them; Ida, Rose, mom and Bunny, I see them all so clearly. Mostly, women. I once knew. The male figure isn’t anyone I ever knew. And Phil and Joe don’t appear to me, even though I was close to both of them. I shooed them all away Tuesday, after leaving my sister’s house and saying my goodbye’s to my dad, who was here for a visit. I had slipped into the deep sadness I use to visit so often, a darkness I don’t allow myself to dip into any longer, for fear of not being able to crawl out anymore.
So I asked them back on Friday. I was on one side of a chain-link fence, like one you’d see around a house. The grass was all brown and burnt and patchy, almost no yard at all. I could see Ida on the other side of the fence. She was smiling at me, her arms stretched out. The rest of ‘the gang’ was there too, and they were all respecting my earlier request, not to go near me. I was crying, upset once again that I was always on the outside looking in. That is how my life has felt; being surrounded by all the good things life has to offer, but unable to get any of them. I’ve always seem myself as the little girl on the stairway, clutching the bannister and watching the ‘adults’ as they enjoyed the party downstairs. I am always in my pajamas, having to go to bed early with the rest of the children. Never. Growing. Up.
So again, I was feeling lonely, abandoned, empty, scared and useless. Ida just smiled, and came through the gate. She held me, and I could actually smell her as I laid my head on her soft, ample breast, knowing that my breasts would soon not be. I could inhale that talc smell of her, and bring her into my body with my breath, just as I did with my mother when she took her last breath here on Earth. She asked me to look up, and when I did, I could see this bright light on the other side of the fence, the side she had been standing on before she came to me. She swept her hand in front of me, out toward the other side, and as she did, the light moved with her hand, sweeping from one horizon to the other. She then asked, “What side of the fence to you want to be on?”
At first, I thought she was asking if I wanted to live or die, but she could read my thoughts, and clarified that she meant what side do I want to live on. I understand you can live in darkeness, or you can live in light, but it’s a cognitive knowing. It comes and goes in and out of my heart. I must choose each day. They are always there for me, my helpers. What I struggle with is whether or not they are real, or just the fruit of my imagination. And even if they are only in my thoughts, is that so bad? What does it matter, if they help me? And what is imagination? Now that I know I’m having a mastectomy…not sure about whether it will be a double or not yet, I’m getting a bit freaked. I’m trying to remember that if I got this information about my breast cancer a year ago, I’d really be a mess.
But whatever shifted took place for me over the past eight or nine months that made me stronger has helped me stay focused. I see the rabbit hole and venture near the perimeter, peeking down into the darkness and feeling like I want to jump in and just surrender to it’s depth, but I haven’t yet. I saw Ida in my mind’s eye when I was with my therapaist. We were in her apartment, the one she shared with her husband Philip before he died. She was showing me something out her window, and when I looked out, it was me, as a child, playing around the bird feeder I use to play around as a child. She reminded me again, about the diamond necklace. (Before she died, she willed a diamond to me from her wedding ring. It was to be given to me on my 16th birthday, and my parents had it set into a pendant. I wore it around my neck until I was 22, and then it was stolen out of a changing room in a hospital when I went for a chest Xray.
I sobbed all night long that night, and that was the first time I “heard” her voice in my head. She told me I didn’t need the necklace to be near her. She was reminding me of that now). I know it’s my rational voice that dismisses these experiences, but I can’t help but think of all the mentally ill people who hear voices. Why am I different from them? I know I don’t actually hear a voice, but maybe they don’t either. Maybe they just can’t explain it the way I can; that it’s a thought more than an actual voice, it just has a face to go with it. My therapist says there is a saying that goes: “Mystics swim in the waters schizophrenics drown in” I’m no mystic, but maybe I’m in between.
. They surround me always, even when I don’t know it. Especially when I don’t know it. Being unaware of them is, perhaps, when they have the most powerful hold on me, helping me through life, unasked, but knowing what to do and when to do it. I knew many of them when they were alive. Then too, I disregarded their advise many times, but unlike now, I knew when they were around, meddling, as it were. At least, that is what I called it, and in fact, that is what it was to me. Now, I see them only when I close my eyes and call upon them. Now, unlike then, I am in great desire of their services.
Lost is what I am, mostly. Ida seems the most vivid for some reason. I’m guessing it’s because she was the only one who spoke honestly, openly about death and dying. Though very ill in her last years, she was unafraid of the mystery that we all face every day of our lives, though seldom, if ever, speak of it. The same mystery that surrounded us before we ‘came to’ in this consciousness, and came into being. Is it what we go back into, after we cease to exist in our bodies, blindly groping our way to what we once knew? Why does the thought of dying, when we know we are, send so many of us into panic? Is it because it’s unknown, or because at level, we remember something awful? Ida spoke of it so sweetly, so softly and so confidently. She didn’t fear death, and told me not to either. When her husband, Phil, died four years prior to her, I was only eight years old, too young, my parernts thought, to go to the funeral. But I clearly remember gazing out my bedroom window up at the night sky, wondering what ‘eternal’ meant, wondering where my grandfather was now, unable to fathom, as I still am unable to do, what forever is.
I knew I would never again see him as he was, but could not imagine what he is now. So now, when I close my eyes and ask for help from any one of them; Ida, Rose, mom and Bunny, I see them all so clearly. Mostly, women. I once knew. The male figure isn’t anyone I ever knew. And Phil and Joe don’t appear to me, even though I was close to both of them. I shooed them all away Tuesday, after leaving my sister’s house and saying my goodbye’s to my dad, who was here for a visit. I had slipped into the deep sadness I use to visit so often, a darkness I don’t allow myself to dip into any longer, for fear of not being able to crawl out anymore.
So I asked them back on Friday. I was on one side of a chain-link fence, like one you’d see around a house. The grass was all brown and burnt and patchy, almost no yard at all. I could see Ida on the other side of the fence. She was smiling at me, her arms stretched out. The rest of ‘the gang’ was there too, and they were all respecting my earlier request, not to go near me. I was crying, upset once again that I was always on the outside looking in. That is how my life has felt; being surrounded by all the good things life has to offer, but unable to get any of them. I’ve always seem myself as the little girl on the stairway, clutching the bannister and watching the ‘adults’ as they enjoyed the party downstairs. I am always in my pajamas, having to go to bed early with the rest of the children. Never. Growing. Up.
So again, I was feeling lonely, abandoned, empty, scared and useless. Ida just smiled, and came through the gate. She held me, and I could actually smell her as I laid my head on her soft, ample breast, knowing that my breasts would soon not be. I could inhale that talc smell of her, and bring her into my body with my breath, just as I did with my mother when she took her last breath here on Earth. She asked me to look up, and when I did, I could see this bright light on the other side of the fence, the side she had been standing on before she came to me. She swept her hand in front of me, out toward the other side, and as she did, the light moved with her hand, sweeping from one horizon to the other. She then asked, “What side of the fence to you want to be on?”
At first, I thought she was asking if I wanted to live or die, but she could read my thoughts, and clarified that she meant what side do I want to live on. I understand you can live in darkeness, or you can live in light, but it’s a cognitive knowing. It comes and goes in and out of my heart. I must choose each day. They are always there for me, my helpers. What I struggle with is whether or not they are real, or just the fruit of my imagination. And even if they are only in my thoughts, is that so bad? What does it matter, if they help me? And what is imagination? Now that I know I’m having a mastectomy…not sure about whether it will be a double or not yet, I’m getting a bit freaked. I’m trying to remember that if I got this information about my breast cancer a year ago, I’d really be a mess.
But whatever shifted took place for me over the past eight or nine months that made me stronger has helped me stay focused. I see the rabbit hole and venture near the perimeter, peeking down into the darkness and feeling like I want to jump in and just surrender to it’s depth, but I haven’t yet. I saw Ida in my mind’s eye when I was with my therapaist. We were in her apartment, the one she shared with her husband Philip before he died. She was showing me something out her window, and when I looked out, it was me, as a child, playing around the bird feeder I use to play around as a child. She reminded me again, about the diamond necklace. (Before she died, she willed a diamond to me from her wedding ring. It was to be given to me on my 16th birthday, and my parents had it set into a pendant. I wore it around my neck until I was 22, and then it was stolen out of a changing room in a hospital when I went for a chest Xray.
I sobbed all night long that night, and that was the first time I “heard” her voice in my head. She told me I didn’t need the necklace to be near her. She was reminding me of that now). I know it’s my rational voice that dismisses these experiences, but I can’t help but think of all the mentally ill people who hear voices. Why am I different from them? I know I don’t actually hear a voice, but maybe they don’t either. Maybe they just can’t explain it the way I can; that it’s a thought more than an actual voice, it just has a face to go with it. My therapist says there is a saying that goes: “Mystics swim in the waters schizophrenics drown in” I’m no mystic, but maybe I’m in between.
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