I've been inspired lately by a few good women who are making their way through a tough time by sharing it. This is something that has always been extremely difficult for me. This step isn't easy. Not for me. Sharing who I am is scary, but dammit, we all need a little scary in our lives and this is the good kind of scary.
This blog is an exercise in getting-it-all-out. I'm open to comments and questions, but make no promise that I'll have the answer (I'm not really a Wizardress... shhh).
Be warned: I will use profanity and probably lots of it.
A little background on me:
I was raised in Omaha, NE in a nice Jewish family. A nice Jewish family that happened to own a restaurant, two bars, a grocery store, and a doughnut chain, among others. I grew up spending much of my free time in the basement of a mall in Nebraska wherein The Deli and The Revolving Door Lounge were housed. The bar was first a piano bar, then the first karaoke bar in the Midwest, possibly outside Chicago, but whatever, that's how I like to think of it. I spent many an after-school afternoon serenading the dinner-time drinkers with classics such as "The Leader of the Pack" and "Da Doo Ron Ron." The Deli was first just that and then a 50's diner called Babes. We had roller skating waiter/resses who would pour your shake for you while the glass rested atop your head. It had its downsides, but boy was it fun (the fact that my school mates never knew most of this is a testament to how hard sharing anything with anyone is for me). At 9, my dad joined up with the ADL (adl.org) and that gave me a whole new somewhat-frightening perspective on life on top of the way-adult stuff I was privy to at the businesses. Through these experiences, I developed a desire to be a working person. To be a fruitful person who contributes, significantly, to the moving and shaping of society, on however small a scale that might be. I wanted to have my own restaurant, bar, and hopefully, music venue. I would have done charity events there. I would have volunteered my brains out. I would have performed there. I would have created some practice space in the back. See, if you don't already know me, growing up in a karaoke bar had the nice side effect of honing my singing skills very early on and my Bubbe, the most amazing woman to ever walk the face of the earth, made for damn sure that I knew business. I would have done it too. Give me energy and I'll show you how things get done.
That's who I am, or more accurately, who I wanted to be; I believed it to the point of tunnel-vision. See how MS is? Before I can even get to the Story of How, you get a taste of the what-came-after.
Fast forward a little to 18; I'd started college, had some trouble with depression, but nothing that was going to keep me down too long. In and out of school a bit, went off to live in Bloomington, the first college and I attended, to establish residency with the goal of mitigating the expense of an out-of-state institution. Besides that, I had gone in thinking I wanted to be a music teacher and it was somewhere around then that I came to the conclusion that I wasn't a big "kid person." So, that was that and the disillusionment began in earnest.
I came back to Omaha and started taking classes at the community college. I was interested in sign language and was on my way to class one evening, a bit of a drive up Dodge to the Elkhorn campus of Metro, and on the drive I noticed my eyes were funny. I wear contacts and was never blessed with good vision, so I just rubbed my eyes and went along. Got to class, but by the end of it couldn't see out of my left eye (my good eye). At all. I was terrified. My parents were in Israel, so I couldn't call them. The next best thing was my grandparents. I called them, they took me the next day to the eye doctor, who sent me to a neuro-opthamologist, who told me I'd need steroids and that I should check with a neurologist because optic neuritis is a pre-cursor to MS. Great.
My parents got back, and in true Jewy-nervous form took me directly to the Mayo Clinic. I had an MRI and it was clean. Woo hoo? Yippee? Somehow I knew better. I really can't tell you how, but though at the time, they weren't wrong, I felt no relief. I knew something was wrong with me.
About a year later, my legs went tingly / numb. If you know, you know. I just dealt with it for 6 weeks (little did I know I'd be dealing with it so-far-forever), because, of course I just wanted to delay the inevitable answer. I had an MRI. Lesions. I had a spinal tap. Oligochlonyl bands. Rebecca, you have MS. I wasn't even 22. It's really so upsetting to write this, even now, 11+ years later. What do you do when you've just begun your 20's and you're told life as you knew it, which hadn't been so great in the first place and all you could do was hope for a better future, is over? How do you even comprehend that? You can't. I didn't. That which happened in between then and now is a whole
different entry (not a whole nother one).
I'm 33 now, and I definitely don't have it all figured out. Not by a long shot. A few weeks back, I was exercising regularly, losing weight, starting the couch to 5 K program (because I'm trendy), and now, I'm sitting here with Solu-medrol induced fuck-you-you're-not-sleeping-ever insomnia and an IV in my arm. Worst relapse of my life. My legs don't work right, I'm fatigued and weak, my balance is off, and that doesn't count what the treatment itself does to a body. It's scary. I wish I could be all upbeat and say "it gets better!" For some, it does. For me, it never really has. I've struggled up and down. I've tried every job under the sun. It still breaks my heart that I don't have the energy for the restaurant business or a career as a singer -- the things, when, at 10, I KNEW I wanted -- but I'll be damned if I didn't try and I did. I crashed a couple months later every single time. For me, the real heartbreak set in after a series of bad things a couple years ago (another entry!) and I haven't really been able to get above water since. I was laid-off, for one, now three years ago. The job market is terrible, my resume looks crazy, I'm competing against out-of-work Ivy Leaguers for 35K/yr jobs and I don't have oodles of real "office experience," mostly because office life sucks. Every time someone has ever told me to "ping" him/her, I want to scream, but this is what I'm left with for options, really. I tried real estate, but the market slump combined with my inability to run around in the summer, (or ever?) it didn't work out. I took a consulting job for $10/hr (my rent alone is $1500/mo). I think of myself as very smart. Capable as hell. I have a great, no, STELLAR, work ethic. Not being able to get a job as a receptionist or an incoming customer service rep for a dog grooming place, things I was doing successfully at 16, is maddening. I'm obviously willing to do the work. I'm not too good to flip burgers or mop floors or wipe ass for those who can't. Been there, done that. I just can't anymore. In the meantime, the relapses make it even harder. It's not so easy to explain gaps in my resume, etc., without disclosing and as I discussed, that's a bad plan pre-employment.
As I've written this, I realize how much I have to say. This one will turn into a book if I don't stop now (maybe not such a bad thing to think about, just... not yet). I kind of can't wait to write another page though.
This blog will not be cheesy (very often) or cheerleadery (like, ever). It will be honest. It will be bold. It will be me.
