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.