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!

Stuck in the Middle

This whole license process has been so draining - emotionally, physically...I am just so tired all the time and I pick up the phone with the slight expectation to always be disappointed. And no one ever fails.



I keep trying to keep my head up - try with every ounce within me not to break down to tears every time I have to restate my entire story to another service coordinator or assistant to the assistant of some sort of physical therapy service of the division of something or other representing the State of Maryland. You would think it would get easier each time that I had to repeat the same story, but it actually has gotten harder. Just for the simple fact that every time I start the phone conversation with "Well, it started a year ago when the MVA put the restriction on my license once they found out I had cerebral palsy..." it just means that I am now 20 minutes farther from getting my license. 20 minutes spent telling someone on the other line a story that I know they could care less about.



Today my service coordinator (who was assigned to me through the county a long time ago) told me to call DORS (Division of Rehabilitation Services) to confirm the appointment that I had received by letter a week or so ago.



"Hello. Division of Rehabilitation Services, good day, how can I help you?" came an elderly lady's voice on the other end.



"Oh, um, hello. Good morning. My name is EJ and I received a letter about a week ago stating that I should come in for my DORS orientation this Monday at 9 AM."



"Mmmhm."



"Yes, and well, I had a few questions about the paperwork that I need to bring. It says right here: 'It will be very helpful if you being any available medical documentation about your disability to the orientation hearing' and I was wondering - what kind of medical documentation are you looking for?" I asked, staring at the letter in front of me. I was hoping that she would give me some kind of specifics. Primarily because I didn't want to have to go and dig up the paperwork from when I was originally diagnosed 21 years ago. I wouldn't even know where to begin to look for that stuff. It's probably stuffed in a dilapidated box in the attic of my parents' house for all I know.



"Anything to prove you're disabled and you need our services. What is your disability?"



"Um, cerebral palsy."



"Well I am assuming you would need something from your doctor stating that that is your exact medical condition. Now what kind of job are you trying to obtain?"



"Job? Excuse me? I already have a job... I was referred to DORS for help in obtaining my driver's license," I said a bit confused.



"Well we don't help you unless you don't have a job. If you already have a job, then you should go speak with the United Cerebral Palsy...they can help you better there," the lady said.

"Are you sure?" I asked, still puzzled. I was told that DORS would be able to help me with my dilemma. I am a little confused."

"I'm sorry ma'am, but there is nothing we can do for you here."

Click.

I hate feeling like I am straddling an invisible line. I am not involved or desperate enough to get help from the State or from UCP (because I have already tried to call them) but apparently, I am involved and physically challenged enough for the MVA to put a restriction on my license and make me run around in circles for a license.

I don't know what else to do. I am stuck in the middle, and it feels like this neverending tug of war going on. I just wish that someone would press stop on this hellish merry-go-round.