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!