Feeling American

Last night, America showed we are ready for change, and do believe that in America, all things are possible, and you can be anyone, and accomplish anything you set your heart on.

Just for the record...

I will probably never be okay with how it all went down. And it will probably always leave this bitter taste in my mouth whenever I think about it - and me always wondering, what exactly it was that made the final taste so bitter?

There are so much of my feelings that I want to exert upon - and so many of my thoughts that I have kept to myself, mostly because I really haven't found a way to make them make sense outside my mind, but maybe one day: I'll be sitting in my house reading a book or out on the beach with the waves crashing in and I will be able to grab my journal and write down everything I feel and think at this exact moment in ways I never thought I'd be able to express. This is the act of composting. This is my way of spring cleaning for my soul.

I'd like to thank the Pre-Med student who came up with the "red-eye" coffee...

I know, I know... I first off want to go ahead and apologize for not being as diligent with this blog as I used to be, or how I'd like to be - this being partly because A. I am slightly lazy whenever I am home and B. I am rarely ever home after doing school/work/homework/workout/craziness and when I am home, I'd like some peace and quiet, plop myself in front of the television and have guilt-free junk food snacking for hours on end. If I start to feel guilty about the horrible things I am shoving into my digestive system and by digestive system I mean my clogged arteries, I do Sudoku puzzles in order to fulfill what I think of as "brain enhancement exercises".

Life has been incredibly on-going in the past few weeks. I can't collectively say that I've been "stressed", possibly because all of it has been "good" stress, whatever the hell that is. I think that just means that even though you're pressured to do 9,999,999 million things in a millisecond and you're perspiring hotter than a 500 T man, well...at the end of the day, you wouldn't have it any other way.

And right now, that's exactly where I am. Save for a few things here and there. Between work and school, I have little room for anything else, but I am super driven. And I love that that part of me has kicked in again. I always felt like I was able to accomplish a hell of a lot more as a high schooler because I was so completely driven by my future, but then I hit a few bumps in the road (Okay, who am I kidding? What I hit were more like gargantuan super-glaciers that had huge pointy icicles hanging off of them, all ironically aimed at me and artfully poised and ready for my demise.) and life began really really sucking.

I don't know what happened to tell you the truth. To this day, when I look back and I think about how I was, my thought process was, and then all the events that have happened between then and now, I have no particular one thing that I can look back at with a stern pointed finger and go: "AH HA! You ARE the WEAKEST LINK!" Because I think in the end, it all played a part, and it all made a difference in the successes and short-comings that have led me to the place that I am now.

But in the past few weeks, what with the new promotion at work (which I never saw coming) and school starting, my focus has been completely and utterly intent on actually succeeding in all the goals I was afraid of before (for whatever reasons). Does that mean I am not still afraid? Hell fucking no. I am readily prepared with plenty of adult diapers for the numerous times I feel the urgent need to pee myself out of sheer fear of all the choices, decisions and life paths I have to make. But what has changed is that I feel I am better equipped to just dry myself off, put on another adult diaper, and keep on trucking. I don't think I'll ever stop being scared shitless or be able to say I don't feel crappy every once in awhile, I am just better prepared for the aftermath that comes with it.

I am really getting down the nitty gritty this year. I'm not just trying to bullshit my way out of this one - I know my ass better work hard to get to where I need to go to be where I want to be. And I figure there have been so many amazing people that I have met in my (short) lifetime thus far that have seemed to have the confidence in me that I could accomplish whatever I set my mind to, so it's about damned time I have confidence in myself.

Bald IS Beautiful

It's an odd occurence when something so heavily impacts on your life in such ways that it's impossible to explain it to anyone effectively and then someone, something comes along, and all of a sudden - you're not alone anymore.


Robin Roberts of ABC News recently got diagnosed with breast cancer and made the decision to keep a video diary of her journey to air each morning on Good Morning America to share with America the devastating impact that having cancer has.


This morning, Robin Roberts aired a video addition to her diary: a video of her losing her hair, and also a video of her making the conscious decision of shaving it off before it all fell out.

http://abcnews.go.com/Video/playerIndex?id=3869407&affil=wmar

"As hard as it was, I knew what I had to do."

I sobbed uncontrollably while watching the video this morning, and cried just now watching it again. So much of my fear of losing my hair and the empowering feeling that I was left with once I took the plunge and made the commitment to shave my head came rushing back while watching Robin sit there in the chair staring into the mirror at her reflection as the hair was slowly removed piece by piece.

"When I finally did it, I took the power back. Because now I was making the decision instead of letting the cancer make the decision."

I cannot imagine how draining cancer and chemotherapy must be, and how much of your energy and will is tested in a time like that. I am so blessed that my emotional journey ended at just hair loss, rather than the immense physical pain that accompanies surviving cancer.

Going along even more with bald being beautiful - there was a segment about alopecia areata on NBC's local newscast at 5 o' clock news earlier tonight in Baltimore. A woman locally is suffering and wanted to raise awareness.

I have decided for sure that next year I want to put together a fund raiser for alopecia areata awareness. I believe that there is enough advance in modern medicine that with effective funding a cure can be found. I'll keep everyone posted as I slowly begin the process of putting together my first ever public fundraiser.

Coming to you LIVE, from the world of The Brave...

There has been a lot of stuff going on in the past few days. (However many it has been since my last post. Yes, I have been that busy that I don't even know.)


Let's start with the good news first:



On Monday, I received a call from Ray Noppinger from DORS. You might all remember him from my previous post.

Ray (Mr. Noppinger, after you hear this story, you'll call him Ray, too. Not worth the time spent in saying his formal name.) said that the Driving Workforce and Technology Center had finally called him back sometime last week and he had forgotten to call me when they did.

I waited silently on the phone for him to continue and he took the cue.

"So I spoke with John and he said that you don't need to go through another evaluation. They are going to be able to use the one that you got from Good Samaritan. Now, however, you need to have at least 10 hours of in driving instruction, which is what we talked about the last time you were here. Now, you see, there is that issue of the waiting list - which I told you about last time you were here, too, as I am sure you remember. It is going to be a 6-8 week wait, at most. I am not even sure if I could even tell you if you're on that list or not..."

I stopped him because he kept stuttering silently and repeating himself, "And they will be the ones giving me the driving lessons, then? What is the next step for me to do? I can't handle waiting any longer for this to go through."

"Oh, well I don't know, I just don't know about all that. Actually..." he paused and moved himself from the phone for a second, as if to be sifting through massive piles of paper. I could remember the overwhelming stacks of memos, and letters, and forms all over his desk, so overwhelming that it took him ten minutes to find the forms I needed to fill out while I was in his office.

"Here, you know what I think you should do. I think you should call this woman and find out what is going on over there. I think you should shake things up a bit," he said, as if he came up with the most brilliant idea ever: Hey!! What am I doing working and actually trying to earn a living as an advocate for people when YOU could be doing it for yourself and I could still get paid through the State?

"Me? Are you sure that's okay?" I asked, not knowing whether or not I would even be allowed to contact this Workforce and Technology place.

"Sure, sure here, here's the number."

So I did his job for him. I called over to the Workforce and Technology Center and spoke with the lady at the reception desk.

"Oh yes dear! You're the girl that Ray has been talking about - we called him last week to let him know that you would need the 10 hours of driving practice, but that we still needed a changed authorization form from him. He has never gotten it to us yet," she said. She seemed nice enough, and so I just went on my rant.

I told her how long I'd been waiting for this, how I'd been told that I wouldn't be able to get the driving lessons right away, about that weird cheap-skating woman that I went through the first time. I told her everything.

"Okay, hon, well hold on one second. We were waiting for Ray to send that authorization form but he hasn't, so let me put you on hold for just a second."

That second turned into 15 minutes, and I was at work and sort of getting impatient (feeling that my boss would walk by and write me up for being on the phone but at this point I was not going to hang up this phone).

She finally came back to the phone and said, "Well I just spoke with the driving instructor, and we are not going to require that form. So let's start scheduling, shall we? We don't want you to lose your job."

Okay, so I had told her that if I didn't get some sort of form of transportation that I would lose my job. Sounds a bit dramatic, I know but seriously, I am not joking. If you met my boss, and saw how she treats people and their problems, you would understand. She has no understanding for any issues that come up into my life - mostly because she can't believe that one person who is younger than her (she is 35 or something like that) could be experiencing other life experiences that she hasn't yet. She has that age-is-god complex, where she thinks she is better than me because she is older.

But that is for another post - what is fucking awesome is that I SKIPPED THE LIST!!! They told me that I wouldn't have to wait the time because I already had a job and that I was a higher risk because I had more to lose without transportation.

Should have mentioned that I would lose my sanity if I didn't have transportation soon...although I feel like I have already lost that.

I am so excited. I couldn't believe it while I was on the phone with her. She started rolling off dates and times, and saying that she was placing my name in their scheduling book. Can you believe that??!

By the end of October, I will have that letter that says I have gone through the 10 hours of training with the left foot accelerator. And that letter will then go to the MVA for them to process, and then I will be able to get that restriction taken off... that way I can start to get those 60 hours with my friends and family, rather than some driving instructor.

And the best part about all this? That I don't have to pay! (at least that's what they told me... so let's keep our fingers crossed)

Bad news? I have five more spots on my scalp. It's getting to the point where not even pulling it into a ponytail is helping disguise it. I am almost to the point where I am so frustrated that I have stopped caring. I don't wear make-up anymore, or try to take the time to take care of myself like I used to in the morning. My routine is to wake up, take a shower, clean up all the fallen hair, pull what remains into a ponytail and grab a hat and throw it on my head.

I have made a plan and placed an appointment to go get my hair cut next week on Wednesday @ 5:30 pm. It's at About Faces in my building. I love it there. Before all this started, I would go there to get my hair cut and I felt like Tiki (my hairdresser) really knew what I wanted. I saw her a couple weeks ago when this all first started, and I was sitting downstairs waiting for my ride to get there, right before we went to Shorty's and I had a hat on.

She came up and gave me a hug. Asked me where I had been and what I had been up to. And then she saw. She saw and she then lowered her gaze from my hairline to my eyes and she gave me a big hug.

"Oh, hon, don't worry about it. You're still beautiful and there are things that can be done. There are things out there - wigs, and a haircut can change it all."

Alright Tiki, I am taking up your offer. I am going to cut my hair short for the first time since my sophomore year of high school. We'll see how it goes. I am really sort of excited because it's something to look forward to and it's something new, and I actually will be able to apply the steroid cream on my scalp bald spots a lot better with short hair than with the long hair that always gets in the way.

Well off I go to bed, everyone. Tomorrow is Friday so I hope everyone is getting ready for the weekend!

Aiming to brave that Arirang...

I wrote a post on the forum last night after I wrote my blog. I just had to get it out, had to share my story, had to tell them that I felt just as damn frightened as all of them, and that my fear was fresh and the wound was still bleeding.

It actually was truly relaxing, and therapeutic. I don't know why I keep surprising myself every time I write and find a therapeutic calmness about it - this used to be the way that I got myself through the dark nights before. Just me, a pen and my journal. Didn't even have to be just us either, I'd crouch in a soft couch at a lame house party, a beer in hand or I'd slip into the depths of the study halls at the library and nestle my face into the blank pages of my journals that begged to hear about all my tears and all my struggles.

But regardless, it was a lot more helpful than I thought it'd be. And the people of the group actually responded. One of the women said that I was wise beyond my years, especially for being diagnosed with AA pretty young. They totally understood how I felt, and what I was going through. The denial, the separation anxiety from each and every strand of hair. It's agonizing...they know, they watched every strand of their hair fall out, too. Over the couch, onto the carpet, all over my pillow in the morning, at the bottom of my feet in the shower stall, all across the bathroom. It's like watching your dirty secrets follow you around your house, devastating you at every corner. Letting you know that there is no escape, there is only a time of recognition and submission.

They told me that over the mountain, there is hope. Over the angry slopes - there is a peace, there is a calmness that slips over you in the night - an ability to let your hair slip away, and your ability and strength to say goodbye, and never look back. So I guess that's where I am headed. Over those mountains in the distance...do you see them as clear as I do? Do they glare at you, too?

Your mountain may not be AA, it could be something else. It could be as small as that term paper that is due the first day of school in about two weeks, or it could be simple as that ugly truth that is hanging at the tip of your tongue that you have to say, or it could be as big as deciding what next road you need (want, desire, crave, depend on) to take when you hit that fork ---

Regardless, we're all on that journey. And I know that we're on it together. I am lucky to have such great friends who have encouraged and inspired me to keep writing, to keep on trekking - the journey is hardly over yet, in fact, I have yet to really get started.

So thank you so much from the bottom of my heart for your kind words and your support. I know that someday I will get to that point where I can be the strongest that I can be, and be accepting of it all. I just know that right now it's all so fresh. It just happened less than a month ago - and I am still in this state of bewilderment not knowing really if it has all sunk in yet. I know that one day in the next few months, I will probably be on the DC metro, or in the car with my friends and just break down to the realization of it all. Because that's when the reality hits me the most - when I am not really dwelling on it. But that day will come, and I know that when it does, even though I may or may not be ready for it, it will be ready for me.

I can't imagine yet what life will be like completely bald - it's still such an astonishing thing that I have all these bald spots rearing their shininess in my face every morning.

My boss told me today that her "patience is wearing thin" because yesterday I was having side effects from the steroids (it's only been a week and I suspected that I might get headaches or something of the like, because that's what the doctor assured me might occur) and had to leave work an hour early. It's almost like people like her believe that I woke up one day and thought that I would just make my hair fall out for no reason at all. She kept telling me when it first started that it really wasn't that bad, and that I should just get over it because it's just hair - how easy is it for her to say that when she has a full head of hair on her head? What if it were her? She doesn't come home with me every night - she doesn't stare into the mirror after I take a shower and see the clumps of hair that are falling all over my shoulders. She doesn't hear my heart crumbling every time I find another bald spot.

I am so glad that you guys have been so supportive and such a big help -you just don't even know. I know that I have struggled through a lot of things in my life, and this is just one more thing to add to the list. It's just the initial shock that is always the killer.

But there are still those mountains to climb. There are still those steeps slopes to conquer. I'm still on my way to braving this Arirang.

Hope Comes in Hair-Growth Bottles

I really hope that (Dr.) C can give me some options on Friday for treatment. I'll try anything at this point. Seriously.

This morning I found another spot. This time it was the size of a sand-dollar pancake at one of those 24/7 diners. I am not going ballistic today. I actually am quite calm and quite happy. It's just a little ugly, that's all.

J's Mom said that she knew a friend of hers that used some topical steroid cream and her hair grew back ten times thicker than before. She also said that she knew of a guy in the Philippines who does hair transplants.

So...if nothing comes of the cream, or anything else I try (Rogaine for Women?) then I guess I'll be hopping my ass onto the next flight to Manila!!!!

Finally, some color in my rainbow...

Yesterday I went to the Department (or Division) of Rehabilitation Services for the State of Maryland office. (Surprisingly, they had a local office just five minutes from my house in one of the two big business parks along North Point Rd.) Like I had said in my previous post, I was trying not to get my hopes up - the past year has been nothing but a road (excuse the pun) of bumps, and curves, and hazmat signs all over the place, and rather than be "surprised" again by another disappointment, I just prepared myself for the worst.



My service coordinator for the county was late in picking me up and I started thinking maybe I had thought it was the wrong day or something. But I ran upstairs into my room and checked my calendar, and sure enough, the 20th was the day.



I wasn't sure how I was supposed to dress. I knew that I had to go to work right afterwards, but if I looked too professional, they might second guess trying to help me. Sure enough, I decide on an outfit on black pants, one of my favorite tops from Benetton that I got six years ago, and a nice pair of black heels.



As my S.C. pulls up to my house and I get into her car, I feel my stomach drop. She is dressed in a turquoise colored t-shirt with seahorses and seashells all over it, and a matching bottom with the same busy, queasy-looking print and then matching bright turquoise flip flops to complete the ensemble. I suddenly feel way over dressed.



I convince myself that it doesn't matter. I should just present myself the way that I am, regardless of how that is - whether it would be in jeans and a tank top or in the outfit that I had on.



We parked into the lot of the business park and the S.C. leaned over to pull up her emergency brake and then stopped.



"We aren't parked too far away for you to walk, are we?"



The steps to the top floor (where we were headed) were only about a couple feet away from where we had parked.



There was a part of me that sort of cringed when she asked that. I know that it was out of good form - she wanted to make sure I didn't have to walk far...because of my limp. But I am used to people parking wherever we can park. I am used to J parking four blocks away from the club and us making the trek there to and from. I am used to making the mile journey from the Ft. Armstead parking lot to Starscape every year. I am just used to people not noticing or caring about whether I limp or not.



"No, this is perfectly fine. Thanks," I said, smiling as best as I could.



We got out of the car and headed towards the building.



"You know the elevator is right there...it might be easier for you to use," she said, watching out of the corner of her eye as I headed towards the steps.



"Oh, I'm fine. Really. It's only about fifteen steps anyway," I said, that tense feeling creeping up into the back of my neck. The feeling I used to get when people used to patronize me when I was a little kid growing up. But I just quickly shook the feeling away and assumed the S.C. was probably only suggesting the elevator because she didn't want to walk the steps herself.



When we finally met with Mr. Noppinger for our appointment, I was just anxious. The ponytailed man who came to greet us seemed the nervous type, his hands clammy, and shaking, and his voice a bit shaky.



"Hello E, name is Ray...please follow me to my office."



We walked into a 2x2 room with two chairs stuffed in a corner, a desk, laptop and two filing cabinets that had more paper on top of them than in them I supposed.



He sat down at his desk while I and the S.C. attempted to awkwardly adjust the chairs so that they fit comfortably next to each other, and yet at the same time, faced Mr. Noppinger.



I ended up having to sit sideways in my chair which I was totally okay with.



"So...let's start at the beginning with this, shall we?" he announced after pulling a legal pad from a drawer underneath his desk and grasping a hold of the nearest functioning pen.



So I recited. I told him the whole story from the beginning, and allowed my exasperation to seep through my words - I couldn't help it. I wondered if Mr. Noppinger knew how much I was trying to resist viewing him as my only salvation.



Once I had finished, and Mr. Noppinger was tipping the pen down after his last few bouts of notetaking, he leaned back into his chair and gave a long sigh.



"I am sorry that you have been given such a run around. But hopefully we can help you here. That is, after all, our purpose here at DORS, to provide for those who can't fully provide for themselves."


There were loads of paperwork to fill out and we got through it rather quickly. When we got to the employment section, he looked over at me.


"And you work?"

"Yes, full time."

"Where do you work?" he said, turning back to his laptop to get ready to type.

"The local bank, in commercial lending," I replied.

He stopped with his hands held mid air above the keyboard and turned to me.

"Really?" he said with the same incredulous tone as the $150 Connect-The-Dots lady.

"Yes..." I said, trying to keep myself calm.

"You wouldn't have a paystub on you, would you? I forgot to mention that if you have a job, we would need to see a paystub."

Fortunately, I am disorganized, and hadn't taken out my paystub from three weeks ago out of my bag.

"Oh wow, so you have a job," he said with the same tone again. I guess he meant that a plain old job (one without the emphasis on the word with that tone) was just a cashier's job at the local McDonald's. But seeing as I worked at a bank (proving that despite his assumptions of me having cerebral palsy and possibly being slightly mentally retarded were wrong) that constituted as a job.

It went on, the next 30 minutes, his shaky hands tapping with elementary speed on the keyboard as he asked me the basic Q & A. 'What's your mother's name? What's your father's name? What is their occupations?'

Finally, we were done, and Mr. Noppinger sat there for a minute at his desk, turning away from his laptop and folding his hands in front of him. He seemed to have found something very interesting to stare at on his desk for a good two minutes before speaking.

He unfolded his hands suddenly and pressed his fingers nervously into the nose piece of his glasses, pushing them closer to his face.

"You make a lot of money at your job," he said quietly, picking up my paystub that he had unfolded.

My S.C. spoke up before I could, beginning with a heavy sigh. I think I was too busy listening to my heart pounding and my heavy breathing, anticipating some sort of bad news.

"You don't mean to tell me that her eligibility is somehow deferred due to the amount of money her salary is, do you?" she asked out of exasperation. I think she could just feel how tense and upset I was ready to be.

"Well, yes...but not everything. She is actually eligible for free driving instruction with the left foot accelerator through the state, however..." he paused, and I knew it would have a catch. It always has a catch, "there is a 6-8 week waiting list for the free training. And it's a draw straws kind of thing. I am just guessing as to how long it could take. Could take months for all I know. But I know some of the people who work at that facility and I will give them a call right after you leave to put her on the waiting list if you're interested."

"Of course I am," I spoke up, "I'd rather wait for free lessons than have to deal with this ridiculously demeaning woman who is charging me $75 an hour to sit and criticize driving skills and NOT do what I am paying her to do which is write the letter and train me using the equipment."

"Yes, yes, of course. I totally agree," said Mr. Noppinger as he pulled out the number of this facility and placed it in front of him on top of all my other paperwork, "Well let me just go print all of these forms off of the computer and bring them out to you."

As he walked out of the office for a moment, it came to me that I remembered grabbing my mail from the dining room table that morning (I hadn't been home in about two days) and stuffed in my purse, glancing and recognizing an envelope from the MVA.

I quickly pulled this from my purse and opened it up as my S.C. looked on.

"Did you just get that letter this morning?" she asked, noticing the MVA label on the envelope.

"Yes, well probably two days ago but I just got home this morning so this is my first time looking at it," I said.

I skimmed over the letter, expecting to hear more about how there was yet another bump in the road. The first thing I read were the bullets in the middle of the letter, skipping over the main paragraphs.

They read like this:

• C, Left Foot Accelerator
• J, Must Be Accompanied by Rehab/Driving Instructor

I knew about both but I guess I should have read the rest of the letter first.

It said that they had "received my Good Samaritan Physician's Report and evaluation packet (You know, the $150 Connect-The-Dots game?) and that the information indicated that I will need to drive a vehicle with a left foot accelerator." (yes, I knew this. We all know this.)

"It is necessary for you to submit documentation indicating that you have successfully conpleted behind-the-wheel training in using the adaptive equipment." (Also, another thing that I knew. Thus, the $75 an hour demeaning training lady.)

But here came the best part:

"Please take this letter along with the appropriate identification and the required fee to any full-service MVA office of your choice and apply for your learner's permit reflecting the following restrictions:

• C, Left Foot Accelerator
• J, Must Be Accompanied by Rehab/Driving Instructor

(So that's where those bullets came in!)

"Once you complete the behind-the-wheel training and submit the required documentation (that stupid letter that is being so difficult to obtain) to your Case Manager, the "J, Must be Accompanied by Rehab/Driving Instructor" restriction may be removed. At that time, you will be scheduled for a driving re-examination and you will be further advised."

YESSSS!!! I have permission to get my learner's permit!! I know it sounds lame, because technically what the letter says is that I can only get the card but cannot use it until I get the letter which won't be for another 6-8 weeks but I actually will get the physical, tangible CARD!! To hold, stick in my wallet, and have my smiling, goober face on it!

The only thing I was concerned about was the whole point of a driving re-examination. I wasn't sure whether my Case Manager was referring to the driving re-examination that happens when a learner's permit person goes to get their provisional license (like everyone else does after they get in their 40 hours of driving practice) or whether that was something totally different for me since I have to have adaptive equipment in my car. But as time will go on - I will figure that out. I have to take the letter to the MVA anyway to get my license, so I am sure I can ask them what I should interpret from that last sentence and figure it out.

What is even more spectacular is that now I can buy my car!!! Now that I have my learner's permit, I qualify to get car insurance quotes and then will be able to take the quotes to the dealership and buy my very first car. YESSSSSSSSS

I was so proud of myself because up until this point with the driving instructor lady, I had had no problems doing everything by myself without help from the state. I tried to wait it out as long as I could and use every avenue and string I could pull by myself before asking help from them because I knew I had a chance of not qualifying since everyone kept telling me that I wasn't "involved enough" or because I made too much money.

Even my S.C. admitted, after I handed her and she read the letter herself, that I had done a wonderful job by facilitating this much from myself. Most people get letters from the MVA and freak out and don't know what to do and where to turn, she said.

So sum up:

1. I get free lessons from the state, and a guaranteed letter. They will even have someone come with me to the MVA to get the restriction taken off so that the MVA can have solid proof that I did complete the training.

2. I got the GREEN light to get my learner's permit. To see my face on my card, and say that I am able to drive...FINALLY!!!! God, I can't believe it's all actually happening. It's really, really happening.

Now I just need volunteers for the 40 hours of driving practice before I get my provisionals...any takers? :-)