Be Magnanimous

My NF and the pain that it involves is a long and winding road, as the song goes. I have felt from the time I was 8 years old that I don’t belong here. Felt it like I’ve never felt anything else in my life. So many defining moments of knowing that coming Here on Earth was a huge mistake; maybe G-d doesn’t make mistakes, but someone was asleep at the wheel the day I came down; and all I want is to go Home. Is that such a sin? In my condition? Just a thought. 


Okay, here goes. My family supports me, but like there is a teensy part of my situation they don’t believe, whether they realize it or not. I’ve known this for a very long time, but the other day, I got an email from the mother of another NF patient. I had mentioned that my pain got worse when the weather was cold and wet, and I asked if her daughter experienced that. She admitted that she did, and also wrote that she was glad I told her because she wasn’t sure (shamefully, she wrote) she believed her.


Which got me thinking about how much my family questions my level of pain and the way in which I am dealing with it. They see me occasionally, and when they do, I pull myself together the best I can. There are times it doesn’t work very well, but they don’t see the day to day struggles that leave me flattened in agony. Now that my dad is going to be living here (either temporarily or ((hopefully)) permanently), he may see more.


But beneath the “understanding’ is an undercurrent of anger so fierce it bleeds through and they just don’t know it.  And I understand why.


At 57, I am a complete and total drain on the family’s resources. I contribute nothing financially, and though I have tried various things from home, my level of concentration and every other skill you need to make a buck is so degraded by drugs and inertia, it is no longer feasible to expect any money making abilities out of me. Which means further degrading of resources for an undetermined amount of time. And my dad, who is 86, is paying my rent and use to pay my insurance; and he has horrible expenses right now. I know I am only taking what would be mine after he passes, but I don’t want him to pass just yet and I certainly don’t want to keep taking money that he could surely use.


Of course, I have done everything possible to protect them the best I can. I applied for disability 12 years ago, and it took two years but I got it. I look everywhere for deals, I buy myself nothing unless I really need it (like underwear) and I almost never go out. I do have cable television. That is my big monthly splurge. But I’d be willing to get rid of that to save fifty bucks a month.  I make my disability check go a long, long way.  My dad asked me the other day what my expenses were.  I think he thought I just have fun with my disiability check.  I said "Dad, I have the same expenses everyone else has; food, gas, electric, phone, etc."  I made him a list and he about flipped.  He's worried sick, I know.  It makes me feel like crap.


Yes, I know people with challenges make something of themselves. I know that people suffering in pain do so as well. People with Asperger’s and every other kind of mental/emotional trial do just fine. What turned for me and why? I don’t know. I’ve had over 70 jobs, no kidding. I kept trying, that should speak for something, but I guess not.


And it’s been a nightmare for the past 12 years The pain has been unmanageable; pills barely touch it.


And now, I am forced to drop my back up insurance, which I’m sure the insurance company will be leaping with joy in knowing. It is over $600 a month for ONE PERSON. So much for healthcare reform. So I’m dropping it and will be depending solely on Medicare. The truth is, the amount of benefits I received from that secondary insurance was one third of the premiums, so it will be cheaper (if nothing horrible happens) to let it go. I’ve been asking every year to drop it but my family has insisted on me keeping it….but now it’s too expensive. It HAS been too expensive.


I have been checking into cheaper supplements (during the small window of opportunity which ends in two weeks) and everyone I speak with seems helpful but NO ONE has followed through with the promised phone call or email. Not one person. So I’m thinking all I qualify for is Part D, which is pharmaceutical, and I signed up for that. Another hundred bucks out of my disability check.


Oh well. Eating is over rated! (kidding). My family tells me not to worry, but here’s the thing. It’s easy to be magnanimous when things are going well. But when the economy tanks, people tend to blame the people costing the country the most; the homeless, the sick, etc. I know my family loves me….never a doubt. But at some level, they think I could do something with my life if I just tried.


Those are dangerous and erroneous conclusions. Someone who can express herself fairly well isn’t necessarily suited for a job that requires doing certain things at certain times. I’m in so much pain most of the time I can’t think straight. And the pills don’t help. It’s shaming enough without knowing people are thinking you’re not trying hard enough.


So those of you with children with NF, remember there are non verbal learning disabilities that are often invisible. We are often invisible.  I was a ghost in high school, and I'm a ghost now.  Can't wait to be a real one!

First Encounter: a non NF experience

This happened to me about 20 years ago, and it took me 10 years before I shared it with anyone at all. But my spiritual life is important to me, and this was such an incredible experience, it changed me completely. I think the show “Ghost Whisperer” gave me courage to go ahead and share it with more people….and now I’m ready to go public. In retrospect, it doesn’t seem like a big deal; but at the time, it was huge. I want to be clear about something since I’m posting this experienced. It all happened PRIOR to my illness becoming what it is today. In other words, I wasn’t even taking aspirin at the time….completely and totally drug free, not for medicinal reasons, and never recreationally.



1988


I had awakened at about 5 a.m., and seeing that I didn’t have to get up for another hour, I rolled over to go back to sleep. But trust me, this was no dream. Suddenly, there appeared before me three people, and they were laying down. They appeared in a kind of holographic form, on a screen that was brightly lit from behind. There was an adult woman, who was closest to me, and adult man, who was next to her, and a child, I think male. My heart was racing and I tried to make sense out of what I was seeing. I managed to sputter “Who are you” at which point the woman turned her head and looked directly into my eyes. There was also a cat in the scene, who circled around the three of them once. Then the scene dropped from view and the room went black again.


I was so scared, words cannot describe it. I was wide awake, shaking like a leaf and trying to understand what I had seen. I told no one, but of course, could not forget or understand it.


Three weeks later, I was sleeping somewhere else, (the change in venue convinced me the house I was living in had nothing to do with it) and I awoke early in the morning and saw the woman standing before me. Again, she was lit from behind. She was holding a telephone receiver, and screaming into it, though I heard nothing. She was crying and desperately trying to communicate something. This time, I was more curious then scared. Again, it appeared as a holographic image. Again, I asked “Who are you” and again, the image disappeared. When I wrote that it dropped from view, I mean it literally. Like an elevator, it simply dropped out of sight.


At that point, I was very curious and very frustrated. After the first time, I began to see images whenever I closed my eyes; disembodied heads floating by, staring at me, mouthing things I couldn’t hear. Sometimes I saw street scenes or other images I did not understand.


After that, I went to a psychic, something I had never done before. I told her the story and said I feared I had attracted something dark in my life. She did a reading and said that no, this was someone caught in the astral plane, and if I saw her again, I was to send her into the light I was seeing behind her. This was all very new to me; I had never heard of anything like it before. She said I needed to do it quickly, because time was of the essence. Of course, I had no control over whether or not I’d see her, but I promised to do just that if I did.


Three weeks after that, (why these three week intervals, I do not know) I did see her again. This time, the phone was at her side, and she was sobbing but not frantically, just in sort of a hopeless matter. I asked her to look at me. She met my eyes, and I told her to turn and go into the light. I told her her husband and son were waiting for her (I have no idea who those other people were, but those words just left my mouth before I could think about it). She looked at me for a while, and turned and walked into the light, which was fading.


I never saw her again. But I continued to see images, most of people I do not know. And it all STOPPED when I began taking pain medication. So it has nothing so ever to do with medication.


My guides are the strong women in my life who have passed. Not all of them; some are people I do not know. But most are people I do.


I wish I had taken the time to develop whatever gift I have that allowed me to do that for her. I know this was not something that I made up…it happened, it was powerful, and I know I have a connection to something I do not understand. We all do, I think, but due to my life circumstance (having a lot of time on my hands due to illness) I have been able to develop some of those skills.


Okay….well, now that I’ve become a weirdo….lolo…. I’m sure I’m not alone.

Letting Off Steam

I’m scared. Terrified, actually. My birthday was the 23rd of June; just turned 57. Never thought I’d make it this far. And oh so many times I thought of ending it. Forever. I am really getting to the end of this long, painful rope. I try and be positive and I do okay with that but then…then I realize it’s going downhill at a very fast rate and it’s terrifying.

My legs are getting numb more and more for longer periods of time. My hands too…and they cramp up on me. I had a PET scan and my hands “lit up” so now they want to do an MRI to see what that is all about. I’m not going to treat, so I thought about not doing the scan, but I do want to know. The neck brace just isn’t doing what it use to do; keep things from going numb.

And the newest is the dizziness…the ‘fun house’ (only not so fun) spinning that happens when I put my head in a certain position….and I never know when it will happen. Tonight, I was going to color my hair and I bent over to wet my head and the room spun so, when I opened my eyes the drain and the tub were on the ceiling. Very scary. I’m afraid that will happen while I’m in the shower. Then what?

The only good news this week is that my landlord agreed to write a clause in my new lease that will let me out of it should I need to go into an assisted living facility. Of course, I’ll just end it before that happens, but I can’t tell them that. They were very kind about everything, and they are putting a safety rail in the bathroom.

But I’m scared, angry and tired of hearing that I must have a positive attitude. Oh must I? My brother wrote a wonderful card for my birthday, letting me know how strong I am to chose life everyday. It made me cry. But I sometimes think people tell me that so that I will keep choosing life when I don’t want to. I can’t do this much longer, I really can’t.

And then of course, I think about what a waste of life I am….I’m so tired. So very tired. And no one gets it. People think I just need to push myself and it will ‘take my mind off it’ How do you take your mind off the fact that your in horrific pain, your going numb from the waist down, your falling, losing your balance, getting dizzy…..oh my.

My hands hurt, they wake me up at night; that’s new. I’m just waking up in pain more and more…..WHY WON’T THIS JUST LEAVE ME IN PEACE???????????????

JUST LETTING OFF STEAM HERE, OKAY????????????????????????

Silence: A Great Teacher

A woman from the local NF chapter emailed me and asked if I would contact a woman (I'll call her "N") with NF. She lives in my state, but like my other friend, is too far away to visit in person. But we gabbed for a long time on the phone. She is only 30; has four kids and frankly, I don't know how she does it!! Her husband is in the service and sounds like a doll in terms of helping her and supporting her and her challenges. I am so lucky I was able to work for 20 plus years before it got too bad to do anything much more than lay flat on my back. N has a family member who gives her a hard time about her pain. Tells her she too, is in pain from firbromyalgia but manages to live her life just fine, thank you very much. She tells her if she just would get up and move around she would feel better.


My heart broke in two listening to her describe the conversation. More like a berating than a conversation. It is impossible to describe what this is like. People just don't understand neuropathic pain issues. Telling someone to "just do it" is like telling a blind person that if they just looked harder, they could see. It doesn't work like that. First of all, we all have different tolerance levels. But that's not even the issue. The issue is, there are tumors pressing on the nerves of the spine, and it hurts like hell!!!!! I really don't know what is wrong with people; if they are just afraid that it might be contagious, or if they feel they are better then the sick person because they push through the pain when someone else can't....it's complicated and beyond me.


But this much I know; you can't educate those who don't want to be educated. When someone talks to you the way she spoke to N, you have to smile, say "thanks for sharing" and change the subject. Or stay silent. Silence is very, very powerful. When I was in sales, I used it all the time. Said my bit then shut the hell up. The person I was trying to sell something to would either pony up or not. But there is something to be said for staying quiet. More importantly than trying to sell someone something, it gives the person a chance to work it out in their own head. And silence can make the other person see something they may not have been able to see before. Talking gets in the way, and trying to convince someone that our pain is real is a waste of valuable time and energy. So, my dear new friend, save your energy. Stay silent. And pray for her. She needs your help, dear one!!

Chasing (But Seldom Catching) My Thoughts

My dad is currently watching his partner dissolve from the same disease that took my mother; Alzheimer's. It breaks my heart into pieces to watch him go through that again...and doing so 1600 miles from me and my brother and sister. It is a devastating disease. I have my own disorder that is eating away at me, but since my mother had Alzheimer's I am fearful it will chase after me. It is starting to do so already.


Yes, part of it is a menopause thing....but when I watch a thought literally vanish from my brain in a matter of seconds, it is beyond frightening. My short term memory is so bad I can't even describe it. But watching thoughts dissolve...that's just not right. It scares me to no end. I pray my NF will kill me before it becomes too much of a problem, but given my history and the things that have upset my balance, I don't hold out much hope of dying before that happens.


I mean, it's one thing to have a health problem that is killing you, but to feel like something is killing you but your AREN'T dying; well, that's just not right either. As far as anyone knows, no one in my family has had NF. It was a spontaneous gene change. I am thankful no one else has this thing because it's no picnic; I try to be strong but sometimes I just can't be. Being in crippling pain all the time and trying to smile through it is a challenge, to say the least. But if I don't try and be brave, the few people who are still in my life will probably disappear.


No one wants to hear about it and I don't blame them. But watching thoughts dissolve like condensation on a window is beyond belief. I'm scared shitless. I want to die before this is full blown. And I may make that decision on my own, if my body doesn't make it for me. I can't imagine not being forgiven for that, if there is such a thing as "someone" out there who forgives. For crying out loud, how much am I suppose to take? Breast cancer? Survived. Acalasia (another rare disease) survived. Thyroid problem? Being monitored Urinary tract infections from catheriztion due to a neurogetic bladder? Always. Always fighting that one. Can't think of them all, but you all get the picture. This is not suppose to be a 'poor me' thing. I don't even care anymore. I just need to vent, and this is where I do it. If someone doesn't like it, leave and go read something that will make you forget truth.

Angel?

All day, I’ve been having this weird feeling and vision of an angel scooping me up under it’s body; holding me under my stomach with it’s arms, and flying me away….very strong vision, very weird. Then my sister called to tell me her former mother in law passed away today….so maybe that’s all it was…some feeling of someone dying. But I didn’t really know the woman…only met her once, and her son, my sister’s first husband, died many years ago. I’m feeling so disconnected lately. My friend with NF is suffering so; he just wants to die and is trying to arrange hospice because he is so frail and so ill. I’m praying he gets what he needs, because he deserves it. I’m frightened by my feelings. My disease is progressing too, but I’m feeling like a total failure…I want to be done here.

Unexplained?

Okay, I know there are days when my pain is worse then others. Like the other day when I couldn't make it to my brother's house to watch the Academy Awards. That was horrible. Trying to get there and having to turn around because the traffic was awful and the pain was intolerable. The next day, Monday, wasn't much better but I had to get some things at the store. I usually go to the Fred Meyer nearer to me, but I went to one a little further away because I saw something there last week and wasn't sure it would be at the store I usually patron.


So I was in line at the check-out, which is unusual for me too. I generally check myself out. But I had a lot of produce and wasn't in the mood to look them up or punch in the numbers so I took it to a cashier. By then, my pain was through the roof; my legs were on fire and tingling and it felt like I was being stabbed with knives. I swear, they were about to give out on me. I tried to keep myself calm, but I was moaning out loud....trying desperately to hold it together. When that happens, sometimes strangers respond. The cashier asked me if I was okay or if I needed help. I tried to smile, I told her it was chronic and I just needed to get home, but thank you very much for your concern.


Then something odd happened. As I was reaching for my bag, she leaned over the cashier belt and put her hands on me. She said a very short prayer. Very short. Something like "G-d be with you" I can't remember. I thanked her, walked away, and the cynical me mumbled "Who?" (in reference to G-d). I was so angry about Sunday, about my situation in general, that I have been lashing out at my beliefs This is the part I can't explain. The pain started to dissipate. Within minutes of her putting her hand on my arm. Now, the intensity of the pain wavers from a 6-10. It use to stay at about "5" but not anymore. Now it's intense all the time. And I had taken a pain pill (which does next to nothing) so I kind of wrote it off as that. But the intensity of the pain has stayed a tad lower then normal since then. So far. I see a healer every two weeks and she helps a lot. The relief never lasts long, but I take what I can get. My head wants to write this off completely. My legs are burning like hell right now, and I wanted to do a few more things today (I went out once already but forgot some things).


 I want to go back to that Fred Meyer and see if I can find her. I want to ask her if she is a healer. I want to tell her what happened to me. But the stubborn me won't let me do that. Not right now. I don't trust it. I don't trust anything anymore. What I feel is that THIS is all an accident. I was born under a godless sky and inhabit a body that was never meant to live this long. I've had more diseases then there are varieties of candy. I look around me at all the pain and anguish in the world, and I have a hard time holding on to any kind of belief system. It comes and goes, just like the pain. My fear is that if I am wrong, I will be punished further for not "doing what I am suppose to do" in this life....whatever the hell that is. So I do nothing. I can't concentrate. I can't focus. All I can do is BE. To Be. I am a verb, nothing more.

My Dad and Me

What makes it possible for my dad, who is 86 years old, able to move about in spite of the pain he has in his lower back and legs? He says he just pushes himself…but he describes his pain much like what I have….tingling down his legs, etc. He can’t straighten upright very well. He can’t walk very well and uses a walker almost all the time now. But he can sit comfortably, something I cannot do for more then an hour at best. I know we suffer from different ailments…much of what he feels is due to aging, though he also has stenosis of the spine. I, on the other hand, have tumors everywhere. But I don’t push myself like he does. I do some, that’s for sure….just getting myself to the grocery store is a chore sometimes. I do it because I have to, just like him. Yet I feel horribly guilty because I think I should be doing more….and I think I should be doing everything better. After all, I am 30 years younger then him. But I know that age has little to do with it. I know that cognitively…but in my heart? All I feel is guilt. Guilt because I didn’t do more, try harder in spite of. Guilt because I don’t push harder, more often. Guilt because everyone around me is paying for the air I breathe And I don’t even want to breathe anymore. I’m just too scared to do anything about it.

Ghost

I don’t remember when I first thought of myself as a ghost, I just know I’ve always been one. It wasn’t until years after high school that I had a name for it. No one saw me, but I saw everyone and everything. It’s still that way, maybe more so because I’m a woman at the age of invisibleness. My friends and family see me, of course, but just the outer me. Not the real me. And just who is this real me? Am I the sick person, the one who has always been sick, since a very young age? Everything from scarlet fever to mono, to mumps and measles and of course, the cherry on top, neurofibromatosis (NF). The learning disabilities from NF kept me in the ‘stupid’ classes. That was fun. “I Learned the Truth at Seventeen” was a favorite for girls like me, and boy, could I relate. The question I torture myself with is did I do the best I could have done, given my challenges? I read endless accounts of how people succeed in spite of, and the more I read about them, the more depressed I get. I’m in pain that cannot be adequately described nor treated, but could I have done more? I write, but the process of sending something off to some publisher has always been too much for me, though lord knows I’ve done it. I had stacks of rejection notices at one time, but tossed them all. Now, with the Internet, I doubt I could publish my obituary let alone a story. Competition has scared me off. Life has scared me off. If you’ve ever see the movie “Meet me in St. Louis”, there is this scene where the two small girls were sitting on the stairs watching the young adults dance and party. Their little heads are peering between the slats on the banister.


That’s me. Peering at life. The closed candy store, the goodies just out of reach. My family has done quite well. My friends, and I’m blessed to have them, have done quite well. Not through the roof well, but well indeed. I’m happy for them, blessed to have them, but puzzled as to why they are in my life. I know I’m a good person and certainly deserving, but in many ways, we have little in common. And it gets worse as time goes by. Economics has made the divide smaller, of course. But educationally we are miles apart. I read endlessly and perhaps that’s made it easier for me to communicate on the same level. But the more I am alone (and I’m alone five, six, sometimes seven days a week) the harder it is for me to communicate at all. I lose the ability. On so many levels, lost is what I am.


I read the news, though I try not to, and I know that compared to most, I am indeed better off. I have a roof over my head, food in my belly and access to medical needs though the cost makes going for help difficult. Even with insurance, which my father pays, it’s horrifying. I don’t belong here on this planet, yet here is where I am. I wish to be elsewhere, I wish to be serving in some capacity. I pray that my spirit leave my body every night so that I might go somewhere to serve, to give comfort, to do SOMETHING. And I pray for death. All. The. Time. The pain is too great, the ability to bear it, too difficult. And besides, I am already, and always have been, a ghost.

My Friend with NF

I met someone almost three years ago with NF. Online. He lives in the same state I do, but is too far away for us to see each other. He can't drive anymore, and I can't drive that far. As bad as my NF is, his is much, much worse. And has gotten much worse over the time we have known each other. Now, he falls almost every day. He lives alone and only has one friend who is able to help him. He also only has one sister for family, and she lives out of state. I am worried sick about him. He knows he has to make a change, but figuring out what that involves isn't an easy task. We talk all the time, and sometimes, in my anxiousness to help him, I express myself in a way that makes him feel like I'm lecturing him. I am not, but I understand how he hears it and I try not to sound so anxious. Of course, I also fear I am heading in that direction, physically. Things are changing for me too, but not at the same rate. I fear my family will dump me in a home when things start to go south. I hope I have the strength to end it when I see that coming. All he does is pray for death. LITERALLY. He prays he won't wake up every single night, and is moritified when he wakes up and has to do whatever he has to do to get moving. But he can't do that without falling now. I am mortified.