Bumped...

For almost 2 years now, I've been dealing with a pretty severe chronic pain problem. It showed up literally over night in July of 2005....All this time and still no concrete diagnosis, despite countless tests, visits to the ER, and too many pain killers to count. I don't talk about it much because people just don't need to hear about it. Plus it tends to evoke pity from people, which I don't need. I'm only bringing it up now because I think I might FINALLY be close to getting some answers...failing that, I'll at least have it better controlled soon.

I received a phone call yesterday from the pain management clinic, informing me that my original appointment date of July 5th has been bumped up to May 28th. I know it doesn't sound like blog worthy news and normally it wouldn't be, but the new date just happens to fall during the time when my best friend and her family will be visiting from Georgia. She'll be coming with me to this appointment, which is good because doctors seem to have this thing about not taking me seriously when I'm alone. I'll be nice to have her there to make sure that I'm not treated like a doormat, or worse...an addict. Originally, I had thought that my mother might come down, but with my best friend being in town then, she won't have to...She can't really afford to miss work anyway. The other major upside to my best friend going with me (other than I get to SEE her finally) is that she's a Christian. My mother isn't. As much as I love my mother, I feel like having someone there with me who shares my love of Jesus will make the day a little less stressful.

To those of you who have known about this pain issue for a while and have been praying for me...THANK YOU! This may be the answer we've all been praying for...

I just find it really interesting that this news came on the weekend of the anniversary of my baptism. This weekend seems like it could be VERY interesting...maybe even somehow miraculous...

Resurrection...

This Sunday is Palm Sunday. This is the day that marks Jesus' triumphant entry into Jerusalem in the days prior to His suffering and crucifixion for our sins. Palm Sunday holds a very special place in my heart this year (as I'm sure it will in years to come) because it marks the one year anniversary of my water baptism. I truly believe that what I did that day symbolized much more than just my willingness to follow the words of Jesus...I believe it was, in a sense, a symbol of MY resurrected life in Christ.

As I look back on some things that have happened over the course of this year, I can't help but be truly awestruck by the incredible love of Jesus. He has taken me from a place of complete and utter darkness, and truly shown me what Light really looks like. Although, if I'm being totally honest...I think I've let darkness over run me lately.

If you've read my previous post, you have a pretty good idea of the situation I'm facing...things are not going well right now. Since I posted that blog last night, I've had some time to think and I started wondering...Jesus' disciples were overcome with a similar sense of overwhelming fear and anxiety when they thought they were doomed to die on the stormy sea. (See Luke 8:22-25). As I read this story, Jesus' response hit me like a brick upside my head... "Where is your faith?" That's a good question...Maybe it got lost in the fear of failure, or just slipped away when it got too hard to hold onto...Of course, it could be buried under the rubble left by the question "Did God really say this to me in the first place?"

Hebrews 11:1 (NKJV) defines faith this way: "Now faith is the substance of things hoped for, the evidence of things not seen."

How can we say we truly, faithfully trust God if we doubt? Doubt is the enemy's greatest weapon. One false prophecy is sometimes all it takes to shake someone...Or maybe it was something bigger, like a step of faith that looks like it's failed...Maybe it has. Or maybe it was never intended to work out as YOU planned it. Maybe I'm not supposed to finish this course at all...that's a possibility. But what if I'm just not supposed to finish it the same way everyone else is. I haven't got a clue which is right to be honest. All I CAN do is take this one year anniversary to re-discover my Father, and my faith.

After all, He did open doors for me to be able to sing on the platform for the first time this weekend. A year ago, when I up on that platform re-committing my life to Jesus, I would have told you you were crazy if you told me what I would be doing a year later. I never thought it was possible.

Do you think it's just a coincidence that my first week up falls on this particular Sunday? I don't believe in coincidences...

Stripped....

Lately, I've felt as though God has slowly been stripping me of everything I thought I knew...

I've got 3 weeks to make up over 100 hours of field experience, or I can't go on to my career program in the fall. I had to leave my original placement due to serious problems with transportation. Since I left there, I have been waiting for my field placement coordinator to find something new for me, but I can't get a straight answer from her about anything. I'm starting to feel like I'm just being pacified..."I'm doing the best I can to find something new for you, and as soon as I do, you'll hear from me..." I hear this every time I meet with her, and still I have nothing. I'm starting to think that I don't matter...Like, because I have a disability I'll never be taken seriously enough to get hired anyway, so why should they do anything more than the minimum required to keep me quiet?

Meanwhile, it's MY life that's falling apart...I have no placement, and thus no degree, certificate or job, no money, no family, no relationship...just an overwhelming sense of loneliness What really bothers me is that I KNOW I heard from God about going down this path (I did doubt initially, but after searching my heart I felt I truly had), what I don't understand is where I went wrong...Like I said, I KNOW God told me that this was my path, so the only logical explanation for the situation I find myself in now is that I screwed up somewhere. Of course, the other explanation is that, despite my confidence, I really didn't hear from God...This brings up the question...Have I ever truly heard Him? I never usually admit this in public, but I feel like I've failed...again. Why does everything I touch seem to eventually turn to rubble?

I'm scared...I have no clue where to go from here...I have no options...nothing. What hurts the most is that I thought that I had finally found something that I was good at, that made me think that, disability or not, I really could have a positive impact on someones life. I've lost my sense of purpose.

I'm singing in the church services this weekend. At least there I can hide behind the music...Get away from the intense fear and hopelessness...for a little while anyway.

All I've ever wanted is to be taken seriously...to prove that my disability is nothing more than a circumstance...That dream seems a bit too lofty at this point.

A friend asked me a question a few days ago: If given the chance, would you want to be healed of your disability? I said no. But that was before I realized that my mother had right when she told me that it probably wouldn't matter how good I am at something...I'll probably never be given the opportunity to do it because of my disability.

I'm taking my "no" back.

Another question....

Here's another question that my best friend asked of me regarding the way some people treat someone with a disability. I'll admit, this is a difficult question for me to answer...but I did say that NO QUESTION would go unanswered, I'll give this one my best shot. Hopefully, I'll be able to answer this in somewhat of a generalized manner, without allowing emotions to play too big a role.

My daughter gets really angry when people talk to her like she's in preschool because of her disability. Does that end as you get older? If not, how do you handle it?

Unfortunately, no. This doesn't end as you get older. In fact, it'll probably get worse in some respects. While she may not necessarily get too many people speaking to her as if she can't really comprehend much (pre-schooler), she may end up experiencing something that I have experienced personally. In fact, it's been happening to me on a fairly regular basis lately. Here's what I mean: Anytime I have ever had a male friend, there always seems to be someone who will inevitably ask the question, "Is that your boyfriend?" or worse yet, the more presumptuous form of this question: "How's your boyfriend?"...and other various "boyfriend" related comments.

Sure, there may be some people who may actually think that I am in a relationship with someone they see me with a lot, but in my experience, that's rare. Most of the time, it's just someone being "cute", because they know perfectly well that "someone like me would never have a boyfriend" (I've never had those exact words said to me, but something similar). The first couple of times I hear this from people I've corrected them and said "He's just a friend", but if it continues, especially if it's from the same person, I may just laugh it off and try to change the subject, because I know that nothing I say will stop this from happening. Yes, it bothers me to a certain extent every time it happens, but it doesn't REALLY bother me unless my friend happens to be within ear shot (I have had people make these comments when a male friend is around intentionally). In my experience, guys will only hear these things "x" amount of times before they start thinking that maybe I have said something to encourage such comments. This results in one of two quite painful things happening:

1) An awkward conversation takes place where this friend will give me the standard "I'm flattered...but" speech. You know the one..."I'm flattered that you care for me, but I just don't see you that way...". This conversation has always been unnecessary 95% of the time (the other 5% of the time, there may have been feelings there, but let me make clear that I HAVE never, and WOULD never solicit such comments)...Why? Because I always go into friendships with guys, knowing that nothing more will ever develop. I could go into why I know this, but I won't for now...

2) The friendship will end because he doesn't want others getting that kind of idea about us. For me, this is something I fear every time I make a male friend. I don't have many friends to begin with, so I deeply value all of them. As far as I'm concerned, no one (not just the guys) are dispensable), so losing a friend over something like this is extremely painful for me...even though I can clearly see his side every time it happens.

I guess the only over all advice I can give your daughter, is to just be who she is proudly, and to not worry about those who don't speak to her in an age appropriate manner. In my experiences with such people, correcting them is fruitless MOST of the time. Generally, these people are so set in their ideas about people with special needs that nothing anyone says will change it. Eventually, she'll learn to just ignore these people, because she'll be surrounded by people that see HER. You watch...at some point, these people will become something for her and her friends to laugh about, because they'll know how utterly ridiculous such behavior is.


Keep the questions coming...I hope that even though there aren't too many people asking questions right now, that everyone who reads this is at least learning something. I didn't think I would enjoy doing this as much as I am...so the learning curve here is totally inclusive.

One last thing...For those of you who are uncomfortable posting questions in the "comments" section, the option is now available for you to submit your question to me via e-mail. Just click my photo on the right-hand side of the page, then click the "E-mail" link on the left-hand side. Please keep in mind that I will be the only one able to see your name (if you submit via e-mail only...anonymous posts in "comments" do not require any identification). Names will NOT be published.

Let the Q &A continue...

These next few questions were asked of me by a friend who'll be coming to see me for the first time this summer (YAY!!!!!! Man...blogger really needs some emoties..heh), and she had some very good, logistical questions. I thought her questions applied to anyone that I would hang out with, not just to her visit....Here's what she wanted to know:

When we go out together, what things should I do to assist you?

The answer to this question depends largely on what we decide to do. For now, let's just assume we're going to a movie. If we're all going to the movie in a car, I would need to bring my manual wheelchair (my power chair weighs somewhere in the neighborhood of 300lbs and it doesn't fold). In this situation, I require assistance with getting from point A to B to C, etc (power to manual chair, chair to car, and possibly chair to movie seat...but we'll make that last one optional as it is not necessary). To assist me in this one of two things is possible...I can give you a quick tutorial on a basic pivot transfer (so easy...basically all I require is a hand to hold in most cases, because I will often use another surface to help support my weight. It's a little hard to describe in writing though). Option two is to do what my friends from church do and just lift me from place to place (this method is generally preferred my the men in my life, dad included, because apparently it's faster). I really have no preference to one or the other...I just do what the person helping me is most comfortable with.

Once at the theatre, I don't think much help would be required as we likely won't be gone long enough for me to require use of the facilities. Generally speaking, if a longer outing is anticipated, I will arrange the necessary transportation so that I can bring my power chair. I can't transfer out of my manual chair independently, because it's not stable enough to support my weight during the transfer, unless someone that I REALLY trust follows me in and holds in steady. However, since that situation is awkward for all parties involved, I avoid extended manual chair outings wherever possible. Other than that, the only other assistance I require is with pushing (if I did it, we would never get anywhere. I never had a gift for maneuvering in manual chairs).

What types of things should I expect you can do for yourself?

Again, this is dependent upon the situation...More specifically, the chair I'm in. The short answer goes like this: Power chair= 95% rate of independence (give or take 3% depending on the "accessibility" of wherever we decide to go). My time in college has allowed me to sharpen my chair moving skills extensively haha! Manual Chair= well I can't put a percentage on this, let's just say it's not very high (in large part because this particular chair is not customized and is rather old...Frankly, I'm surprised I still fit in the thing! It was with me through my awful middle school years. I think it came out less scarred than I did...LOL) The upside to this particular chair is that it is easily portable...

If there;s anything else you'd like to know--any of you--just ask. Let me reiterate that there is no question that will be considered "dumb, insensitive," or anything of the like. This is an educational experience for ALL of us...even me...I'd like to know what people wonder most about....Even if it's something totally mundane. I'm notorious for asking people I want to get to know better questions that, to most people, seem rather uninteresting...What can I say? I like to know as much about the people around me as I can.

My hope is that, over the course of this "series" of blogs, those of you who read this will become comfortable enough around me to ask me anything without fear.

Growth spurt...

I guess that's the best way to describe what has happened to me over the last few days, both emotionally and spiritually.

For as long as I can remember, I have struggled with friendships in the sense that I'm always sort of waiting for something to go wrong somehow. I've always figured that if I kept my distance until I felt that had "proved" to me that they were a true friend, that there was less chance of me getting hurt. This strategy has served me well...or so I thought until a few days ago. During a conversation with my best friend, I realized that, although this strategy was necessary for me for a long time growing up, things have changed now. Now, I'm blessed enough to have a good group of friends around me that like me for me, and aren't just being nice out of some twisted sense of obligation because I'm "different". The thing that hit me the hardest about this conversation was the realization that I was being really unfair to these people. They have done nothing but love me from the beginning. I feel I should apologize for this. It was wrong, and probably hurtful of me to doubt the intentions of any of you, and I'm sorry.

I know now, that each of you are gifts send to me from God for different reasons...Not because of the things you do or say, but because of WHO you are.

Open Book...

Over the last week or so, a few people have asked a number of questions about my disability and just my life in general. Because of this, I thought it might be a good idea, over the course of the next few entries or so, to make myself an open book as it were...to give those interested the opportunity to ask me any questions you want. I have gone back and forth about doing blogs like these for fear that they may seem somehow narcissistic, but previous experiences have taught me that there are those who are curious, and naturally so, when it comes to a person with a disability...they want to ask questions, but they fear offense. That's why I've chosen to do this. I believe God gave me a heart to teach for reasons such as this, to destroy incorrect stereotypes and to just plain tell you whatever you want to know (I do mean ANYTHING. I can answer pretty much any question regarding my disability in a way that won't be embarrassing for myself or anyone else...Try me...

For now, I thought I would post a couple of questions that someone asked me on a message board a few days ago.

How could something like Cerebral Palsy be a gift?

First, let me start by saying that not everyone considers their disability a gift...In fact I would bet that I am in the minority on this one, but let me assure you, my perspective has only recently been changed. For a long, LONG time, I hated myself because of my disability. I was just sick and tired of people never really seeing ME, but only seeing my disability.I started to see things differently after I re-committed my life to the Lord early last year, but not completely...Not until one day last summer I believe it was. Once again, I had been hurt by something because of my disability, and I found myself lying in bed crying, BEGGING God to tell me why He "did this to me". I was shocked at what I heard Him say, so much so that I will never forget it as long as I live...He said, "You may not be able to stand in your physical body, but you can stand in your spirit." Well there it was...my purpose....To lead by DOING. To show the rest of the world what God showed me that night with that one simple, seemingly non-sensical, phrase. I am not defined by my disability, no more than any of you are defined by the color of your eyes. Neither one of us can change those things. My disability is merely part of my circumstance, it is NOT who I am. I like to say it like this: I have a disability, my disability does NOT have me.

Why would God do that to someone?

God didn't do this TO me, He did it FOR me. I know in my heart that if I were born able-bodied like my sisters, I would probably be just like them....a single mother of 2 by age 20 fighting just to get by, or doing anything and everything I could think of just to be accepted. And one thing's for certain...I would NEVER have come to the Lord. I am the way I am, because I feel like God wants me to teach those around me. It's my responsibility, I feel, to break down every single negative stereotype and pre-conceived notion that I come across. I have a voice, and I have a duty to use it on behalf of those who want to, but CAN'T. Can I do it alone? No, of course not. But then again, not one of us can truly come into our full God-given destiny on our own right? I am blessed to have great friends who, when necessary, will sit on the phone with me for hours while I pour out my dreams, fears, hurts, and many, many tears. There are others who will meet with me just to listen to me ramble as I work through yet another battle with self-doubt. There's no doubt in my mind that I would not be as confident in my direction in life right now without friends like these as sounding boards. To me, they are living testimony that God makes provision for EVERYTHING He asks us to do...all we have to do is trust Him and follow.

That's all for this post, but if there's anything you want to know about my life, or just some general question that you've always wondered about, leave it in the comments section. Please post anonymously if you would prefer not to have your name attached to your question.

The Light Switch...

This afternoon I received confirmation that I have been accepted into the 3 year Child and Youth Worker program starting next year. That means that I am one step closer to my goal of becoming an Educational Assistant. Most people ask me why I don't want to become a teacher...Well, the answer to that is simple...There's nothing like the feeling of working one on one with a struggling child, and watching them finally get it. Somehow, I have been able to switch on a light for them that has been shut off for years because of frustration, anxiety, and fear. Having the opportunity to do this for the next 3 years in some capacity has triggered some memories of the last time I filled this role:

When I was 18, I was working this job in a Learning Skills classroom. There were about 12 kids from grades 3-6 in the mornings on their math and language. In the afternoon, the teacher would pull other children from any of the grades (K-8) that required additional resource with any subject. How I ended up there was a bit of a fluke really...I was part of an apprenticeship program for Early Childhood Education in my final year of high school, and rather than put me in a daycare or a kindergarten class, my teacher felt that since this Learning Skills class had fewer kids, it would be easier for "someone like me" to handle. NOT. It was the most challenging experience of my entire life, given that most of the students I worked with had pretty severe behavioral problems on top of their learning difficulties.

Though there are many things about my time with these kids I'll never forget, one student in particular had the greatest impact on me because of the time we spent working together. When this student (whose name I will not mention for privacy reasons) transferred to our school at the start of his 3rd grade year, he could not spell or do any kind of math at all. If I remember correctly, he even struggled to count past 50 and recite the alphabet. When I asked about why this student had been moved ahead academically, I was told it was more for social reasons than anything. They wanted to keep him with kids his own age. I remember, he would come in first thing in the morning and sit at the back table with me, where we would work on his reading spelling and math. It would take weeks sometimes just to get him to read a book intended for a first grader. There were days where we would literally get nothing done because he refused to work (on those days, he would end up with me most of the day, even when he was supposed to be with the rest of his class, because his behavior was so out of hand). These were the days that I felt like all I was doing was handing out detentions, and making no real positive impact on their lives. But then there were days where he would come in ready to work, and he would surprise me, the teacher (and even sometimes himself), with the progress he made.

I did the best I could on the bad days (and the good ones too) to make sure that I stayed as positive as possible with them, while at the same time not tolerating any kind of disrespect. I was strict, even by the other teachers' standards, but I had to be. They needed to see that I deserved the same respect as the teacher even though I was in a wheelchair. I remember getting on them quite a bit for negative self talk. I wanted to show them that just because they were struggling, that didn't mean they were "stupid".

They're all in their mid-teens now...high school. I've wondered recently if they remember me as fondly as I remember them. I hope that, in some small way, I was able to have an impact on their lives.

After all, I was just the person who spent time with them, trying to get that light switch in their brain to turn on.

Since I won't "officially" get a chance to be this person again until January of 2008, I have asked a teacher friend of mine from church if she wouldn't mind asking her principle about any possible volunteer positions at her school between May and June. I'm doing this for 2 reasons: 1) Because I miss it terribly!! 2) Because I want to have some possibe carry-over hours for next year, in case there is another situation like the one I'm facing now, and no placement can be found for me. I'd just like to have a Plan B next time. Makes sense right?

The good, the bad, and the just plain wrong...

The Good...Yesterday, I attended my first rehearsal with the music team at GTA, and I must say, I had a blast. I've always loved music. It's actually served as an equalizer for me throughout most of my life. Like, when I'm part of a theatre production, talent show or choir, my disability matters less....For those few minutes on that stage, I'm the girl who sings instead of the girl in the wheelchair. I do want to make something clear however, I did not join the music team in an attempt to be "normal"...I did it because I felt God calling me to. I'm not sure exactly why He did, but until I find out, I'm content to know that I'm walking in complete obedience. Things went well overall I think, aside from a few times where I felt I was really struggling to jump to the higher octave. I'll get it eventually...Hopefully before the end of the month....Here's hoping I don't sound like complete trash! HA HA!

The Bad...I heard back from my professor on Friday, and it turns out that she wasn't able to find me a placement in the college like she hoped. I had a placement at the beginning of the semester, but because of problems getting a ride there (this place is clear across town from me), my professor and I thought it best that we try and look into another placement option. She told me that I should ask the lady I worked under at this place if she still has the time logs from when I volunteered there last year. If she does, then my professor said she would just give me credit for the hours I have. Nice huh? I just have to wait to hear back from this place to know whether or not the logs still exist...

The Just Plain Wrong...I called the Registrar's Office at my college today to see if my bus pass had been turned in yet. Nope. I'm still holding out hope that it will be turned in, but since I lost it on Wednesday and it hasn't shown up yet, chances are it won't. That means that I have to somehow find $50 to replace my student ID card and bus pass ($25 each). Not too mention have my SIN card replaced. Oh and did I mention that the college only replaces bus passes on Fridays? That means that I need to shell out more money for bus tickets for school this week...Another $10. Here's what I'm having a problem with...What kind of thought process does it take to pick up something that doesn't belong to you and keep it rather than doing what any person with a conscience would do, and turn it in to somebody and say "Hey...I found this. Can you hold onto it until someone comes asking for it?" Is it really that hard to do? Oh but wait...Here's the real kicker...He didn't touch any of my money, which he could have easily done since both my credit and debit cards were in there. On top of that, my NAME and STUDENT ID are clearly visible as soon as you open the pouch. I dunno about you, but I'm thinking' that would have been a teeny clue that IT WASN'T HIS PASS and to turn it in. I don't get people. I was sure the "finders keepers" law didn't extend past the 3rd grade schoolyard. Some people are so far beyond self-serving, it astounds me.

Lost and Found...

As I mentioned in my previous blog, I lost my bus pass at school on Wednesday along with pretty much all of my other identification. Most of the things I lost can be replaced for free, with the exception of my student ID card and the bus pass itself. To have my student ID card replaced will likely cost around $40, while the pass will be re-issued for around $25. I just don't have that kind of money. As things stand right now, I have no other option other than to use LTC tickets to get where I need to go...those aren't cheap...$8.80 for 5 tickets.

This creates a bigger problem for me than just getting to and from school. What about church? Thankfully, I have a friend that has generously offered to pick me up a couple of times a month. On the other weeks, I would just take the bus. Since that is not financially feasable right now, i have no idea what I'll do. This week isn't a problem. I have a ride because we both have music team lunch/rehearsal tomorrow. After that, I'll have to figure something out...I don't plan on asking my friend to go any further out of his way than he already has...that would just be burdensome.

The hope, however, is that the person that picked up my pass was a genuine enough person to have turned it in as soon as he realized it wasn't his. I'm going to check on Monday and see...Until then, all I can do is pray.

Loss of identity....

Well, okay that might be a bit dramatic, but I have lost every card to my name...Debit, credit, SIN, Student....all lost. Gone. Best I can figure is my red pouch that holds my college bus pass along with the afore mentioned cards, fell out of my jacket pocket in an elevator. What's worse is that I saw it fall, but because it fell so closely next to the other person in the elevator with me, I just figured it was his. I even pointed it out to him and watched to make sure he picked it up and put it in his pocket before I rushed off to my last class off the day.

I didn't notice anything was missing until I left my class and started towards the bus stop to come home. Nothing in my pockets...I panicked. Had someone in the disability office call the security office to see if it had been turned in there. Nothing.

From there, I went to the registrar's office. By now, I'm about ready to loose it right there in the hallway. I wait 20 minutes just to have the lady tell me that unless they've called me, they don't have my bus pass or any of my ID. I lost it. Fell apart right there in the registrar's office like a 5 year old who lost track of her Mommy. Thankfully, the lady I dealt with gave me enough change to get home.

So tomorrow, I need to cancel all of my cards. I'm hoping the bank can give me a temporary card in the meantime so I can get some money...Girl's gotta do laundry somehow. From there, I can only pray that someone calls me and tells me that they have my bus pass...Otherwise, I have no idea how I'm gonna get to school on Friday...

I would appreciate any extra prayers you could send my way.