Integrity

I often ask myself just what is it I’m contributing to the world, given my primarily house-bound situation.  Apart from the writing I do here, it feels rather like nothing.  But then I think about what my niece said to me (see "Greater Truth" post below) and I’m reminded about the one thing I have that no one; not the doctors or the disorder can take from me: integrity.  Personal integrity, that elusive oft times difficult thing we either strive for or ignore, make excuses for when we miss it by an inch or a mile, dismiss it when it’s convenient to do so and most often, forget about entirely.  It’s easy to do so; after all, we tell ourselves, how important is it that I missed that appointment (without calling) I was suppose to be at, broke that promise I made to a friend, came late to that dinner party my family had.  How important is it, really?

Here’s what I think.  It’s important beyond measure.  Beyond anything we previously thought, beyond all else because it’s tied to everything else. It’s tied to love, to work, to our children, our business acquaintances and our friends.  It’s tied to everything and everyone and every time we miss it, be it by that inch or that mile, we lose a bit of ourselves.  And eventually, there is no one home.  We walk around as empty shells, some of us thinking our money or our feeling of integrity's unimportance is protecting us from that very thing that is killing us.  Not keeping our word.

We think perhaps, that if we go to our place of worship, or our private prayers of asking for forgiveness (if in fact, we are aware of our indiscretions) it is enough, enough to keep us in G-d’s good graces, enough to get us through another day without thinking about what our actions or inactions did to the person we disappointed (at the least), disregarded or disgraced (at the most).  But it’s not.  Not by a longshot.

And when you are in the kind of situation I am in, you develop a keen sense of knowing; an awareness that integrity is often the only thing we have going for us.  And in a sense, it really is the only and therefore, the most important thing we can take from this life on Earth.

Truly, every single time we fall short without an apology or an amend, we break hearts, sometimes bank accounts, sometimes marriages, friendships, relationships with family and countless other things that make life worth living.  And sadly, we are often too unaware of it even happening.  Hence, the empty shell syndrome.

I am far, far from perfect in this regard.  But I have, if I listen, friends and family who gently set me back on track when I fall short.  And if you don’t listen, they stop telling.  Talking to an empty shell becomes tiresome.  We all have tried to have conversations with those people, so we all know.  But it’s far, far easier to spot it in someone else than in ourselves, just like everything else.

I hope I am never become that empty shell.  If there is one thing I can take away from my time here, it’s knowing that I did my best to keep my word, my best to be aware when I mess up and above all, my best to acknowledge and correct the mistakes I make along the way.

Integrity.  We must live with it in mind, even if our world leaders don’t.  They are not the examples we want to follow.

Greater Truth

Today is the day I write something new, having been in hiding for way too long.  The pain and other physical challenges makes me not want to write….in reality, that is when I should be writing, as it saves me from going mad.  Instead, I read, watch movies, whatever it takes to take my mind off my woes.

One of my nieces came by the other day to say goodbye as she goes off on an adventure for a year, having finished high school.  She’ll be getting credits that will transfer (she’s studding abroad) so that’s good.  She is wise for her 18 years, and said something that I shall never forget.

I was telling her that sometimes I feel like I must have been a horrible person in another life to deserve the kind of life I have now; unable to do much of anything, fighting pain and other physical challenges.  I don’t like to complain to my nieces and nephew, but it comes out sometimes.

She looked at me and said “Auntie, I think you are looking at it backwards.  You are so strong.  Everyone sees that.  But I think that all your challenges are preparing you for the world to come; perhaps you will be sitting beside a king!”  At the time, I kind of laughed, but the more I thought about it, the more I appreciated her words of wisdom.

So the next time I’m on the pity potty, feeling sorry for myself and wondering what kind of ghoul I must have been, I’ll think of her and her words.  And maybe, just maybe, I’ll find the greater truth lies within them.

Parking Spaces and Other Disasters

Years ago, I had a friend (now deceased) who had MS and was in a wheelchair. In spite of this, she got her degree, taught school, changed her own tires and generally amazed me. Once, we pulled into a restaurant next to someone who took the last disabled spot. In a sports car no less, got out laughing (not at us) with his friend and walked without a problem, inside. I was angry beyond words, and wanted to say something to him. She said forget it, it’s not worth it. And she meant it. She just didn’t care. When I got out of the car, I noticed that the spot he was in was just next to the disabled spot we were in, but was not a disabled spot after all. I felt like an idiot. She laughed.


I share this because I have a disabled plaque now due to being unsteady on my feet.  I should really be using the walker that sits in the corner of my room with clothes draped over it. But I’m needlessly too proud. I tell myself it’s too much work getting it in and out of my trunk. I seldom go anywhere anyway except the grocery store, and their shopping carts are fine. But every once in a while, I get “the look” from people who think they know me and because I look “fine” I must be taking advantage of those who REALLY need that placard. What I’d like to say to them is this:


First and foremost, I have a genetic disorder called neurofibromatosis (NF). It’s a complicated, many layered disorder that wreaks havoc on the host body, in this case, me. I have inoperable spinal tumors that leaves me in pain that you personally would not be able to withstand for five seconds, but I’ve grown accustomed to it.  And my other health problems, some related to NF, some not, are too many to list.


 These are the things I sometimes want to say. But I say none of these things. There are times I want to teach “them” a lesson by spewing out all the above. (It's funny because when someone realizes they made a mistake they say "Sorry I didn't know" which is of course, the point)  But it isn’t worth getting worked up about them. Because I don’t know them….just like they don’t know me. I have no idea what they are up against either. I just need to remind myself of that, when I find myself boiling over from looks which I have interpreted as personal. But it can’t be personal if they don’t know me. And that is what my friend Staci knew all those years ago.

G-d, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. And all that!

The Choice

Often when dealing with my health problems with neurofibromatosis, I see myself sitting on the small ledge tucked away on the side of a mountain. Beneath me is the endless abyss of darkness and fear so deep it takes my breath away. There is only a small branch to hang onto, and there are days I am clutching that branch with all my life. But the flip side of that is this: I sit very still and look all around me. I see the most amazing vistas you can imagine; mountain views, sparkling ocean off in the distance, rain squalls on one side, a rainbow on the other, eagles and other birds flying above, squawking and diving....at night the stars are endless and I am never too hot or too cold. I can almost hear Louis Armstrong or Willie Nelson singing "What a Wonderful World"

 So that's the choice. And I make it every minute of every day. Sometimes I'm so close to the abyss it terrifies me, but when I think of my family and friends, I'm on the other side. And that's what we ALL have to do, every single day, often many times during the day. Whatever your vision of the choice is, that's what we have to do in one way or another.

 The abyss is a very seductive, cunning lover. But it isn't the inner partner in life that is good for us. The true inner partner is quieter....it needs to be courted consciously. It speaks softly and it waits patiently

A Teacher

A friend sent me the following:




The most beautiful people I have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These people have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen. - Historian Roy Nichols




Pain is a great teacher, but most of us would rather learn some other way. We think that happiness comes from a perfect childhood and avoiding mistakes. We don't like that patched-up feeling that comes with each survival. We would like to be seamless, no patches, no scars. Cherish your hard-won depth and understanding. Some pain is required for the journey. The gifts you seek are often disguised as problems. Patches bring strength, whether on our knees or in our hearts.


Don't know who wrote this one....

Outlook

When I am alone with my thoughts I sometimes realize how fortunate I really am….but when I start to write about living with NF, all the negative aspects of this condition come rising to the surface, like a bad vapor. Yes, there are some real life challenges with this disorder. But life is full of challenges, whether you are healthy or not.


I often tell people I am luckier than most people simply because I have a roof over my head, food in my belly, and friends and family who love and support me. When you look at the planet as a whole, that is huge, folks. Not to mention that I have access to healthcare, remiss though it can be at times. And the challenges I have with certain providers pale in comparison to not having it at all. I get that.


I know some things to be true. I know, for instance, that the body I was born into is not a reflection of who I am. How I handle having this body is. Sometimes I handle it well, other times, not so much. It’s like that with everything and everyone, no? Whatever the challenge, be it relationships, career, money, family dynamics, dieting, whatever….it’s not about the challenge per se, it’s about how we handle it.


Kind of like the difference between pain and suffering. It took me a while, but I have known for quite some time now that there is a HUGE difference between those two things. Pain, and I mean the kind of horrific neurological pain (which no one can seem to figure out how to help it) that people with NF and other neurological disorders endure, doesn’t necessarily mean suffering. I don’t even connect those two things together anymore. Suffering is a choice. The pain is just there, doing it’s thing, trying to get my attention and usually doing a pretty good job at it. But suffering? That’s different.


You know how you can tell that’s true? If you’re pain is particularly high and there is something else going on in your life; your lonely, bored, angry, etc., boy do you suffer! I mean the screaming kind of suffering. I once wrote a piece on it which I put in the post below this one. We all have those days. But if you are distracted, if you have a friend over or you’re reading a good book, or you just had your favorite meal, the pain lessens a little bit. It doesn’t go away necessarily, but it recedes to the background. At least it does for me.


I haven’t posted much lately because I’m tired of being so negative all the time. I have had so many physical challenges lately, it’s almost laughable. The NF, of course, cancer in 2005, and in 2007 I had surgery for another rare disorder involving my stomach and esophagus. Shortly after that, I fell and broke my foot. and was in a boot and have a walker. And you know what? I thank G-d everyday that I didn’t break a hip or my neck. In my condition, either or both could have easily happen. I give thanks for it every single day.


Now it's 2011 and  I am dealing with more medical problems...ones I don't want to even write about here.  But I will keep you posted.  Yikes

Which Voice Today

For the last five years or so, I have heard, and felt, a small voice in the back of my head, pushing me forward. Behind it, there has always been a smaller voice, urging me to let go. That voice, in horse-racing terms, is coming up from behind…and loudly.


I have always acknowledged, but at the same time ignored, that smaller voice. It scares the hell out of me, because if I listen to it, I fear I will be dead very shortly. The conundrum for me is that I always say that I want to die, that I want to go Home. So why then, does this voice frighten me so?


The stronger, “pull yourself up by your bootstraps” voice is the one keeping me alive and independent. It’s who, or what, I credit my ability to function at all. I hang on by my fingernails, so scared of facing letting go. Because I know what it means. It means confronting all the anger, all those feelings that I keep so bottled up inside.


People always tell me how incredibly far I’ve come in the last five years or so….how I’m not the person I was when NF struck me down, finally, 11 years or so ago. But I lost a lot when I lost that person. Anger, yeah, I got rid of a lot of my anger, and that’s what people refer to when they talk about how I’ve changed. But I also lost that part of me that can feel to the marrow. If I let myself feel that way, I will die.


Because I’ve lost so much, it takes my breath away. Yes, I have a lot too, in the way of friends and family. But any rational person will admit I’ve lost a lifetime. And anyone who thinks I’m playing a “poor me” scam can go jump off a bridge. Ask yourself if you would change places with me, or what you would do if you were in my position, and your teeth would rattle. That’s if you answer honestly. Or think about it for more than two seconds. Hell, if someone had told me many years ago that’s this is where I’d be right now, I think I would have killed myself. One can’t even imagine.


The endless, chronic, intractable pain that is so in the stratosphere of discomfort no words can describe it nor pills control it, adequately. A friend recently told me, after I said I deserved an Oscar for my performance of being okay, that she knew it, I didn’t fool her. She said I wasn’t that good of an actress. She laughed I didn’t respond, but I smiled to myself, thinking, that statement in itself told me how good I was. You see, no one can even begin to imagine, though this person thought herself capable. She thought herself capable because she is my friend, and couldn’t imagine that I was going through something awful enough for her not to know about. Because she herself went though some unspeakable things. But it’s not the same.


It’s not the same for many reasons, but mostly it’s not the same, and this is what people really can’t get, because there is no end to it. Ever. No ‘getting through’ no other side, no ‘bad period of time’ thing. Never ends. Never, ever, ever. So you don’t get to experience an end to it. Not until you die. Hopefully.


Which brings me back to the small voice that is pushing itself to front and center. The one that is so tired of pretending, so tired of hanging on, so tired of the pain, so tired of no answers, so tired being tired and so afraid to look at all that she’s lost. So lost herself. So ready to let go. So ready to go Home. So ready to die.


I’m scared to let her in, to win the race to the front of the line. To really let go would mean more than I can get my mind around. Because I would be giving up who I say I am. I would need things that I’m afraid my family wouldn’t or can’t, give. They give so much already, and no question they are there for me emotionally and financially. But if things progress for me physically, there is no question I wouldn’t be living with either of them.. They would put me away somewhere ‘for my own good’ and come visit on occasion. Don’t mean to sound angry….I just watched my mother move in a nursing home, and I’d sooner die. Hopefully, I will.


They always say that my NF is teaching them, too. Perhaps so. They are good people, they help me a lot. But we never did talk about how our mother’s constant illnesses effected the family, even after I brought it up specifically at the meeting with the social worker. They won’t look at it. They wouldn’t acknowledge the similarities. They always tell me I’m ‘nothing like that’ meaning needy. So I hang on. I pretend. I can’t be needy.


But I am sick, and dependent as well. Those are loud, desperate similarities, and best they look at them or this lesson of illness will come up again and again.


And I best let go and hope for the best.

Social Services vs Social Networking

The question “What’s wrong with this picture?” has reached new heights. We are “cutting back” on much needed social services to the point of non-existence, while a social networking site on the Internet is worth incalculable amounts of money, based on future advertising revenues. Which means the privacy this social networking site claims isn’t so private, or why would advertisers back it? My mind can’t get around it. I live on disability due to NF, and I lost my health insurance due to the price tag: $650 a month for me…one person. I don’t even want to think about what will happen to me as my health continues to deteriorate, which it promises to do. Many doctors won’t see people on Medicare; I will be able to continue to see the ones I have (so far) but I always need more. Perhaps the answer, down the line, will be to euthanize those that need medical help. We seem to be heading in that direction. Survival of the fittest.


When will we learn that the net worth of air (the Internet site) does not compare to the net worth of our “friends” that use the social networking site. Probably never. I can’t even begin to understand how air can be worth so much, even with advertising revenues. The greed just never stops. Bernie and all that he did to his investors is a fast faded memory, as new Silas’s rise to the surface. And those in need are buried under it.

Americans and Frogs

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?

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.