I have had such a great visit with my folks and brother that I don’t want to go home today. 🙂 And Adam doesn’t either, so we’re staying until Monday.

This is the way that visits with family oughta be. 🙂 I hope that everyone else has had a good Thanksgiving too.

There’s an awful lot that I’m thankful for this year.

Obviously, I’m thankful for family and friends. I try as often as possible to let everyone know how much I love and value them, but sometimes it’s tough to really get it across because I’m complaining so much about my body or about what I can’t do.

My family and friends are so empowering and kind and loving and accepting of all the stuff that goes on with me. You all wrap me in a cocoon of care that lets me get through anything no matter how bad it is, and I can never thank you enough for that with just words. So I just love you big bunches, and keep on keeping on. Some days are pretty freakin’ awesome. 🙂 It’s always worth it, and I can never possibly thank you all enough for the love, support, friendship, fun, hugs, silliness, and awesome times I get to share with you. Thank you all for putting up with my bitching and whining and moping and yelling and crankying so we can all enjoy the good times together too.

I’m extremely thankful to be American and protected and lifted up by the support of everyone who is able to work in the country. SSDI is extremely helpful. Medicare is on its way in March. I know that I must have sounded terribly ungrateful when I first got it because I was hoping for more than $758/mo (That’s what they give people whose earnings prior to disability are only minimum wage, and having completed graduate school, I thought I’d have at least $1200/mo to live off of.)

I’m totally thankful for the high quality of medical care I’ve received this year. All bitching aside, we’ve come very far with controlling my seizures and pain. This is the 3rd day in a row I’ve been the first one awake at 8 a.m., made coffee, and started working on my book. The seizures I have now are all pseudoseizures and most of them are flashbacks. I’m able to admit the shit that happened earlier in my life that is causing this stuff and deal with it. That’s megahuge. I don’t know that I would have been able to heal this much without the care of such good doctors.

I’m deeply thankful that I am alive and mostly well. As you all are well aware, I struggle with suicidal thinking and existentialism from time to time, but there is nothing good about death. I celebrate life and even recently, when asked if I get resentful of having to take so many pills everyday, explained that I see it like an affirmation of life. 9 am and 9 pm are times to pray at the altar of modern medicine. 🙂

I am so thankful for my husband, Adam, who understands everything going on (both in life and with me) on a level that I don’t. When people talk about your spouse being your “better half,” I had never understood what that meant before — but he understands damn near everything I don’t understand, and does a damn decent job explaining to me or having patience with me when I just can’t accept, understand, or have patience with myself or the world for not conforming to the way I think things “should” be… and I’m coming to find that there is an awful lot of things in this world that simply don’t work the way I think they do. I’m immensely grateful that I have his hand to hold while I walk (or stumble) through this life.

I’m incredibly thankful that I took the month of November off of Facebook. I was on it all the time, and wasn’t living. I wasn’t playing guitar or piano. I wasn’t cooking. I wasn’t living. I had let myself spend all my time trying to keep in touch with my friends. I had actually let myself believe that my Facebook friends were real friends.

But really for really-real friends read blog posts, talk on the phone, email, stuff like that. Facebook friends are acquaintances. They’re the folks you chatted with in the halls in high school – not the folks who hung out with you for real. There’s a significant difference. Keeping it real is important. And so is keeping your personal drama to the handful of people who really care, as opposed to the 500 or so of your closest judgmental acquaintances. I know that even though this is public and will be posted to Facebook, the only people reading it care. And that is significant.

I am thankful for limitless opportunity. Despite all the challenges I’ve gone through and have yet to hit, life is full of opportunity. Berklee alumni stuff happens all the time. Sam (an old friend of the family) has opened the door for me to his publisher, for the MS book that I’m writing, and the future has not eclipsed the possibility of me taking another bar exam in CA or another state. And that is just off the top of my head. When I’m not so busy having seizures out of fear of the past, a beautiful future is ready to open up for me. You really can’t ask for better than that.

My life is wonderful right now, aside from the scary, painful seizure here and there, the unexpected freakouts, and spontaneous numbness/tingling/pain. When I let myself just roll with it, I’m incredibly happy. And when I’m not… well, I just deal with it as best I can. And really, that’s what life is, isn’t it?

I hope you’re all having a good Thanksgiving weekend. 🙂

Here’s a link to a really yummy soup that we had last night (and that Adam and I like to make with chicken sometimes) that uses up leftover turkey meat well!

Tex Mex Turkey Soup on AllRecipes

Enjoy! 🙂

So, it’s been a while since I last posted. There’s a reason for that.

Somewhere along the line I got it in my head that I wasn’t helping anyone with this blog, and that, at worst, it was really just an exercise in narcissism, and at best, it served only to prove to me that I exist in some tangible way, and that my thoughts and experiences may or may not eventually become something worthwhile, like a book. Because books are valid publications that have the approval of others with money, and blogs, well, they’re just verbal vomit that others get to read for free.

I’ve realized the sad truth of the world that I’m living in… that I’ve learned that money = worth in the minds of the masses, and in the minds of most people. In the mind of me.

I guess that’s why when I filled out the forms to get out of my federal student loans stating that there’s no way for me to make money, and my doctor filled out the paperwork to go with it, as well as the paperwork for SSDI, saying that I am incapable of work to support myself, I started sinking in a way that I didn’t really know how to fight.

Over the last several weeks, I’ve received, for the first time in my life, letter after letter, asking me to explain, in detail, why I cannot work, what paid work I’ve done since being diagnosed with the seizure disorder… and every time that I fill one of those out, I get this horrible knot feeling in my throat and churning in my stomach.

I’m 29 years old, and I cannot work. My psychologist left me high and dry by saying analysis was really the only thing that could help me at this point, and none of these places that offer it is getting back with me. So for almost 2 months now, I’ve been going through this and wedding planning (which is an emotional fun time all of its own) all on my own. I think it’s time to find a new therapist, but I’m trying to get into analysis, which is getting a new therapist… but I think I am doing well on my own, all things considered.

I feel a lot better about the suicidal compulsion stuff I’ve had going on, because scientists have been able to track suicidal compulsion over EEG and notice beforehand. This suggests to me that it’s seizure related. In other words, not my fault. Not a personal failing of Rachael Renee. That’s why, despite the fact that I keep having thoughts about it this morning, I can shrug them off because I’m like, “whatever, seizure.” just like when my body ticks. It’s a lot easier for me to deal with. A whole lot less drama. It’s still annoying as all hell. I’d be lying if I said I was in a bright and shiny mood from it, but at least I can call it what it is, and medicate for seizures instead of going on some deep, psychological journey into why I would want to end my life.

Truth be told, I hate myself right now. I’ve always prided myself on being professional – since I was a kid even… professionalism is huge in music — and now, I am anything but. I feel like I’ve lost my identity entirely. There are a few spots in my life where I caught myself liking me, but then I’d get rejected or rebuked by someone I loved and find out I was wrong for liking myself. So that means that I’m only right for liking myself if someone else agrees. The really hilarious thing is that seeing that typed out makes me laugh. I mean, it’s ridiculous. How ridiculous is it to hate yourself? What a waste of personality. Why on Earth would God bother creating a Rachael Renee if she’s just supposed to do what everyone else likes and agrees with?

You know, all my life, everyone’s said “Be Yourself.” and I think I just got it. Because they say that when you’re young, and they don’t really mean it. They really want you to be good. I was good. But now that I’m worthless, there’s no reason that I shouldn’t dress like a weirdo in my own house and play electric guitar in the middle of the living room when I can, at whatever hour I want to, with or without headphones. But I’ll wear headphones when it’s night time because that’s the kind of person I am. A kind person.

And there’s no reason for my hair or makeup to be normal. I can Lady Gaga it up, but do it my way. I feel like I shoulda been doing it for my whole life. But I’m not brave enough to even do it alone. I have problems even practicing, to be honest. And I can lie and say that it sucks to hear myself sound bad, but the truth of the matter is that it’s a question of bravery. Am I willing to let myself learn a new instrument? If I learn a new instrument, does that mean I can earn money? What happens if I do? I don’t want to get in trouble for doing well.

I must be crazy. Look at me acting like I have enough energy or ability to get myself in trouble. Ha! Let’s worry about things as they come. I should TRY to get in trouble like that. Let’s HOPE for me to be doing well enough for me to have to pay back all my law school loans and not need SSDI!

At least I can have that hope now that I’m not having seizures all the time! They started disappearing while I was staying with Adam’s family in Worth, IL. (The irony of the name of the town just tickles me.) I had a lot of time to spend with his family and friends, and Adam and I went out and did a lot of things to plan for the wedding. But what I realized, when I came back to CA, is that being surrounded by family and friends was important and helpful to me feeling better. I feel lonely out here, comparatively. I know that I just need to contact friends though. I have to build a family. Adam’s family made me feel like one of them, and like they wanted me around. It was really nice.

*sigh* So what have I learned? To like myself I have to be able to earn money and receive validation from others. *knocks head on desk* That is the opposite of healthy thinking. I know the ideal is self-validation, and that worth can’t be measured in money alone. Why is it that you can know something logically and educationally, but your psyche can’t get it anyway? I wish I could talk with someone who had some answers for me… any kind of direction for me… but that’s just dodging more of the responsibilities of being an adult – hell, of being alive.

Really, I’d just settle for having someone to talk to, where the conversation isn’t how bad the economy sucks or the obligatory “So how are you feeling?” question. I wish no one ever asked me that question. I will almost always say “fine” unless I’m feeling real bad. The real answer is always the same: crappy. Varying degrees of crappy. Better than usual at the moment, but the devil disease still isn’t letting me go out at night and party. Best I can do is chill out on a couch and watch TV or play games, which to me, is actually a pretty good time with other people. I miss social interactions so badly.

Anyway, in that direction, and towards finding worth in my life, I chose to write today… and apparently, to write quite a bit. Thanks, those of you who have read. I don’t know how this could help anyone, but if I continue to get a bit better every day by being brutally honest with myself, and anyone gets to see my growth through this and it helps them, then that’s cool.

And if not, and it helps me, then that’s cool.

And if it doesn’t help anyone, and I’ve just wasted my entire morning, well, at least I felt, for a few hours, like maybe I was doing something that mattered, at least, for a little while.

All that it takes for me to get rid of the majority of my student loan debt, is to print out this form and get the my doctors (who are being contacted about SSDI stuff anyway) to help me here. It will be no shock to them to have this form there. It will require no additional information than that which they will already have gathered for Social Security.

But it freaking makes me feel awful to read the line “Diagnosis/explanation of the borrower’s present medical condition (identify the borrower’s condition and explain how it prevents the borrower from working and earning money in any capacity).”

…in any capacity.

*sigh* any.

There is a part of me that rages angrily against that. It’s the same part that writes this blog, I think. And the same part that pushed me to take the bar exam. Twice. The same part that believes there will be a cure sometime soon for MS.

But it doesn’t stop the pain in my wrists or my ankles or knees. It doesn’t un-numb the left side of my chest. It doesn’t keep me from falling over from seizures or from a sudden lack of feeling in my feet.

And somehow, my sense of self-worth is so tied up in the ability to make money that even though I know the Social Security office will be contacting all my doctors for the purposes of determining a claim for SSDI, I am hesitant to ask them to help me with this.

Making money… making businesses… It’s been such a part of my life before.

And now, this is something I never comprehended. Now, because there’s no way that I can work at the moment, I’m asking my doctors to tell the government that I won’t ever be able to do it again.

*I* have to be the one to ask them.

I don’t want to admit the loss of that part of myself. It feels like a punishment already having to endure it.

But what’s one more humbling event, right? At least this one acts to cancel debts I cannot pay. At least I know I’m helping my family.

Well, it’s official. As of March 1st, 2010, I have swallowed my pride and admitted that I need the system’s help.

That’s right, boys and girls. I applied for Social Security Disability Insurance (SSDI) today.

Now, I know what you’re thinking: I haven’t worked long enough. Well, I’m under 30, so there are some different rules. There’s a chance I could get it.

I also need to apply for SSI and food stamps. But I can’t do that today because it’s too late in the day already. I’ll have to jump on that gravy train to survivable poverty tomorrow.

But don’t let that make you think I’m being pessimistic. I know that Vimprat’s out on the market now and that there’s a snowball’s chance in hell that it could work on controlling my seizures. So who knows. I mean, I did apply for a job that reads like my dream-job today…

…the job I hope I’ll have