Dream to Drive

It's always been a huge dream of mine to be able to drive where I want to go instead of having to plan what I do around public transportation. I started the process a few years ago but ended up getting frustrated with the vehicle they made me learn to drive with, which was a full size van with a raised roof. I had to transfer onto the drivers seat and be propped up with pillows to even see over the dash board. After completing the course and finding out that I wasn't progressing as well as hoped (due to being so uncomfortable) and needed more classes and may have to pay for them I then decided to put my dream on the back burner until a later date.

Recently I have been doing research to figure out what is available for me to drive and have even visited an accessible van dealer to see what they think I'll need to be able to drive. I have learned alot from this research and armed with this knowledge and support from friends and family I finally feel ready to tackle my dream again.

First step in my "Dream to Drive" quest is going to the Philadelphia Office of Vocational Rehabilitation (OVR) to get assistance with the driving training as well as finding out if they'd be able to assist me with the cost of the van modifications, which could be over $100,000 easily. Once I find out how they'd be able to help me, I then need to make an appointment to be evaluated to find out exactly what equipment works best for me and then begin driving training using that equipment. After passing the driving course I then start the process of acquiring a van. I will need to pay for the base price of the van on my own, but hopefully OVR will cover most if not all of the conversions.

The road is going to be a long one and filled with alot of red tape, but this time around I refuse to let that get in my way! 

Stranded in Philadelphia

It's a rare event when I am without my power chair, but like any other electrical item it does break down.

I've been extremely lucky with my current power chair but the wear and tear was bound take it's toll eventually, and last Tuesday the inevitable happened, my chair died. Unfortunately for me it happen to die right in the middle of crossing a busy intersection...one with out a light at that. Luckily for me I was traveling with my Mom and she was able to put my chair in manual and wheel me into a near by parking lot. Once there however we were pretty much stuck. The nearest public transportation to take us home was about a half a mile up hill and my Mom is just not strong enough to be able to push my 300 lbs chair that far let alone up hill. So I immediately get on the phone with the repair company for my chair and relay my dilemma. Luckily, the repair guy happened to be somewhat in the area and could swing by to attempt to fix the chair and/or take it into the shop. The catch was that if the chair needed to be taken into the shop then I needed to find alternate transportation to get home since the repair guy's van neither had the room for passengers nor had insurance to cover them. I could only think of one person that was somewhat in the area who I knew I could count on to help me get home. I contacted her filling her in on my desperate situation and she agreed to come help me without question. I felt guilty for having to ask her to take time out of her day to rescue me even though she knows I'd do the same for her if I could and I knew she'd do whatever she could to help me.

After making arrangements with the repair guy to look at the chair and my friend to pick me up all I had to do was wait for the Calvary to arrive. Ironically enough my friend and the repair guy arrived within minutes of each other. The repair guy starts checking out the chair hoping it was just a lose wire or blown fuse and he could fix it on the spot, but deep down I knew that he was going to have to bring the chair into the shop. My fears were confirmed when he's testing wires with some sort of reader or tester and goes "Huh, I've never seen that before" (not a good thing when you stump the professionals). After a few last ditch efforts to try and immediately get me mobile again he comes to the same conclusion I suspected all along. It was beyond just a quick fix repair and needed to be taken into the shop. So I watch as my chair is loaded into the truck knowing all too well that I could end up being without it for quite some time.

The next day I found out just how bad the damage was. Turns out I blew one of the electrical wires and power wasn't able to get to the remote control, rendering the chair useless until it was replaced. Luckily I work with the best repair company and instead of just wanting to replace the faulty wire they decided (and I agree) that it was best to replace the whole wiring system to ensure this doesn't happen again in the near future. This meant that all the parts needed to be ordered from the factory in California and was going to take a whole week to ship. To make matters worse Columbus day was that Monday so shipping the parts didn't ship until that Tuesday (a whole week after the chair broke down). Meaning I was going to be two whole weeks without my chair.

The idea of having to be without my power chair for two whole weeks was very depressing. It's like someone tying your legs together and saying they weren't going to untie them for a couple week. I rely on my chair for everything from getting me to point A to point B to transferring to my bed, bathroom, etc. Being as independent and restless as I am the idea of having to rely on someone for everything was painful. All I wanted was my freedom to do as I please without having to ask for permission or wait until they're not busy. Towards the end I was definitely reaching my limit...I was frustrated with everything and everyone and found myself getting angry for things that I'd usually just let slide.

So when I received a call from the repair man this morning you can imagine my excitement. I was finally able to get back to normal both mentally and physically and I couldn't be happier. Here's hoping it's a LONG time before it breaks down again :).

A Book by it's Cover

I've spent my entire life having people jump to snap decisions about my character based on where I lived, who my family was, who I hung out with etc...but the one judgement that has always bothered me the most was when people judged me by how I look. Usually these type of judgements were based on me being disabled therefore I somehow needed more help then most people or needed to be prayed for just because I'm disabled. I smiled and thanked them but silently wondered why being in a wheelchair meant I was in need of special prayers when there are plenty people out there in much worse situations than mine. In fact I feel lucky that my situation wasn't as bad as it could have been. 

So I guess when I learn that someone has an issue with me based solely on my physical appearance I get particularly defensive and feel the need to prove them wrong. For example when a really good friend of mine began dating a girl that "hated midgets because they were mean" (her words not mine) I felt the overwhelming desire to prove her wrong. Not just for my sake but for every other little person she was judging based solely on our height. Needless to say I lost that battle and I rarely hear from my friend anymore but I am glad I at least attempted to try and change her judgement.

As a result of all the times I've been judged based on my looks I often ponder  "Why do people judge a book by it's cover?" If we all made the extra effort to dig deeper than how someone looks before judging them would there be less conflict and crimes based on hate? 

Maybe growing up being so different from the norm made me want to focus on who people were instead of what made them different than me. If that's the case than I can truly say that I am thankful that God made me the way I am because I love the way I get to know people and that it has allowed me to have a wide variety of friends that all enrich my life in different ways.

Traveling Trials

I love to travel. I love to explore new places and see the beauty and wonder they hold. For someone like me in a power wheelchair traveling can have some challenges that can be frustrating.

I experienced some of these frustrating experiences while I was on vacation with my boyfriend in Boston. We'd made plans to have dinner and drinks with my Uncle at Cheers and I was excited to learn that they were actually wheelchair accessible...big plus in a historical city like Boston. When we got there I saw a flight of stairs leading to the bar entrance and my heart began to sink, having experienced similar situations where I was told the venue was accessible and upon arrival realizing that they truly are not. My boyfriend went inside to get info on how I could get in. A member of the staff comes out and points out a wheelchair lift that is attached to the stair railing and I start freaking for a whole other set of reasons...reason one, I'm scared of heights, when a short fall results in several broken bones a fall from any height is petrifying...reason two, will the lift hold my 300 lbs chair and if not will it break down half way up the stairs, which again has happened with bus lift. After grilling the staff member about the weight capacity (450 lbs) and working order of the lift I finally agree to get on it and let it lift me up the stairs, eyes sealed shut the whole ride.

So I make it in the bar, we're seated, I order up a strong drink and my Uncle meets us soon after. Everything is going great, the food is good and we're having a blast.

Then the inevitable happens, I need to use the restroom. I ask the waitress if there is an accessible restroom and she says she believes that I should be able to get into the largest stall and she offers to go with me in case I need help, which I thankfully accept knowing how challenging the bathroom situation is in most places. We get to the bathroom and my fears are confirmed, the main bathroom door is way to small for my chair to fit in. After checking with the manager the waitress comes back saying there's a bathroom on the 3rd floor which I should have no trouble fitting in. We hit the elevator button and when it arrives I realize it's one of those old style elevators with a door that opens toward you and a metal gate that closes once your inside the elevator. I also, notice this bumper on the bottom half of the elevator door that gets wider towards the bottom (which I later learned is there for safety reasons so children's hands and feet don't get caught in the gate). Immediately I'm convinced I'm not going to fit in the elevator but the waitress wanted me to try and wanting to at least be able to say I tried I slowly try to squeeze my chair into the tight elevator opening. One side got past the door frame and I thought I was home free, that is until I realized that the opposite side was stuck. After maneuvering around a bit in an attempt to free myself it was apparent I needed help. So the waitress runs to get a male staff member to lift and shift the back of my chair free. The male staff member is able to free me and I make it in the elevator...I should be home free now right...wrong. We get to the 3rd floor and not only does the door to the elevator have the same bumper but it doesn't open nearly as much as the door on the first floor and I can't get any of my chair past the elevator opening. We decide to try the 2nd floor too but discovered the same problem. Once back on the first floor we're informed by the manager that the second elevator didn't have the bumper and therefore was completely accessible (would have been nice if he mentioned that when he sent us upstairs to begin with but oh well). So into the second elevator we go, without a problem, up to the third floor and out of the elevator, and finally to the coveted bathroom. Which was fully accessible :).

Thank god for that waitress who did everything in her power to help me, including staying on the third floor and escorting me back to the table and repeating the whole process again, minus the problems, when I had to go a few hours later.

I wonder sometimes how bars, restaurants, etc get away with being barely accessible. I understand that the bar is an historical landmark and they try to keep it as original as possible but as someone who is deterred from many places for that reason you'd think they'd want to make it as comfortable and accessible for all potential patrons. There has to be a way to accomplish that while maintaining the historical wonder that the landmark holds.

"No, You Stay"

I was waiting for a bus in Boston last week and I propped my legs up on the bench next to my boyfriend. Those of you that know me know that I do this quite often when a chance presents itself both for comfort and to help with circulation in my legs. Sitting in a wheelchair for 8-10 hours a day can be murder on circulation in your legs.

Anyways we're hanging out talking and goofing off when an older woman approaches with a cart. Both of us not wanting to be in the way each offer the space on the bench we are taking up but she says she's fine and so we stay where we are. Maybe 10 to 15 minutes go by and suddenly this woman wants to sit down on the very edge of the bench dangerously close to my legs. I immediately sit myself upright and tell her that she can have the whole spot (both to be polite and I really didn't want her that close to me). As I'm backing away to give her more space to sit down she grabs my left leg firmly (big No No with my condition) and says "No, you stay". My first instinct was to punch her and curse her out for being so rude and ignorant not to mention possibly hurting me but somehow I manage to keep my composure and politely but firmly say "Please let go of my leg". She does and I immediately retreat to the opposite side of my boyfriend and we exchange a silent "What the Hell" look.

I have never had anyone do anything so rude to me before. Sure people touch my arm or pat the top of my head and say "your so cute" or "your such an inspiration, I'll be praying for you" but this one topped the cake. After the shock wore off I felt my leg and flexed my ankle to make sure everything was OK and thankfully other than the emotional scar of feeling violated I was fine.

When I was looking threw our photos later that day I realized that while I was taking a silly pic of my boyfriend looking something up on his phone I happened to get "Leg grabber" as I fondly call her in the background. I debated posting the pic along with this article but felt it would be unethical. While I am still furious over the whole altercation I feel posting her pic would be stooping to her rude careless behavior and I'm not like that...even when I should be. However I can truly say I'll never forget the face of the rudest woman I've ever encountered.

Swim Missy Swim

After the surgery on my leg my knee was locking up and giving me trouble. I talked to my doctor about it and he recommend Aquatic Therapy. I love the water but I never learned how to swim so I was excited to get started but nervious at the same time. The first session I was evaluated and in order to make me feel comfortable my therapist used a floation device around my chest, my head, and under my legs just so I could float. After a couple of sessions we began to gradually start removing some of the floats starting first with the one under my legs, then the one under my head. Now I've gotten to the point where I can do the conventional back stroke with only the waist float. Along with the swimming I've been able to do several physical excercises that are virtually impossible for me to do on land like crunches, sit-ups, sqats, etc.

The reduced pain and the strength that I've been building in my arms and legs is are obvious pluses but what I wasn't exspecting is how much of a positive impact the excercising and swimming in the pool would have on other areas of my life. My sleeping patterns, which have always been irregular, have now gotten pretty normal and I've been waking up feeling refreshed instead of drained. The swimming has also build my confidence both in the water and out. I proved to myself that even though I may need to alter the method in which I do things, I can do normal activities that I've wished I could for so long. If I'm able to conquer swimming then who knows what else I can conquer. For once I truly believe that the sky is the limit.


- Posted using BlogPress from my iPhone

Dress Hunt

I went shopping with my mother this weekend and I decided to try and look for a dress to wear to a friend’s wedding in July. Clothing shopping is always very stressful for me because I have a terrible time trying to find clothes that fit me properly and are age appropriate. I’m 2’11” with curves which isn't easy finding things that work. Even when I do find something I pretty much always have to adjust something. This constant dilemma inspired me to take sewing classes when I was in high school and has been a helpful trade to have when everything you find that you like is too big or too long.

Those were the issues I was facing while dress shopping. Everything I liked was either way too big, too long, or the bodice of the dress didn’t work at all with my body type. I ended up leaving the store very frustrated and disappointed. So the hunt is on for a dress that works and needs very little alterations. Wish me luck!

Dating

Lets face it…dating is hard. It hard enough for the average person to overcome their fears that they’re not; pretty enough, funny enough, smart enough, or interesting enough, and put themselves out there. Let’s add a major disability like mine to the equation. Not only do I have those fears too but I also have to deal with the extra oddities that come with my condition that only add to my already fragile ego. Oddities such as my severely crocked spine that not only makes me feel un-pretty but is also very painful and limits what I’m able to do, and the false joint in my right arm between my shoulder and my elbow that developed from a break which never healed allowing me to completely rotate my arm 180 degrees…just to name a few. With these extra insecurities putting myself out there into the dating world was next to impossible. When I would step out on that limb and open myself up to someone…rejection always followed.

At least that was the case until I opened my heart to a very special guy that changed my perspective on everything. Not only did he not mind my imperfections, he embraced them and saw the beauty behind them. I opened my mind to possibilities that I’d written off years ago…such as marriage and kids. Suddenly these things seemed tauntingly within my grasp…dangling only slightly out of reach.

Now I’m scared that I’ve given myself false hope. I’m desperately afraid that the rug is going to be pulled out from under me and he’ll wake up one day and see what an unappealing girlfriend he has. Why would someone choose me when there are obviously better fish in the sea…ones that come with way less baggage? These fears creep up on me like a bad cold you just can’t shake. Constantly nagging at me to just give up and put myself out of my misery. After all isn’t it easier to just give up? Sure, it probably would be but would I be happy….NO. Nothing worth having comes without a price…and right now the price is risking getting my heart broken worse than it’s ever been before.

Road to Recovery

Well surgery is done and went much smoother than I expected. The procedure ended up being less invasive then they originally planned and that made recovery much shorter than I anticipated. I've been out of the hospital for a month now and everything has more or less gone back to normal.

I'm still getting pain from the procedure but that is to be expected until I'm fully healed in another couple months. For now it's just a matter of taking things one day at a time and not pushing myself past my tolerance level...which I've never been good at. I've always plowed threw the pain with an "I can do it" attitude and while it always works for the time being...the aftershock is always crippling.

I'm working threw one of those aftershocks tonight. I spent the last three days going non-stop and now I feel like my body weighs a 1000 lbs and just moving is a huge effort. It's definitely time for some R&R. I really need to learn to balance things a little better next time so I don't get this bad.

Surgery Blues

I'm currently I preparing for the surgery on my right leg that is scheduled for next week, I find myself feeling really anxious. This will be the first time under the knife in my adult life and there are many questions that need answers.

One major question is will the hospital let my Mom stay in the hospital room with me. I'm getting this surgery in another state and my Mom won't be able to travel back and forth cause she doesn't drive. When I was a kid they always let her stay with me or provided accommodations for her to stay near the hospital, but I was a minor then and she had a lot more ammunition to fight them if they asked her to leave. Now I'm an adult and though I shutter at the idea at being in a Hospital in a whole other state without my Mom there for me, I'm trying to prepare myself for the possibility that they could just say no. Which would mean she would have to go home and only return when I'll be coming home.

As if worrying about that isn't enough I'm also freaking out about the actual surgery itself. I've never taken being put under anesthetics very well and ALWAYS woke up extremely sick and having breathing trouble. A couple of my surgery's I've even spent a week after the surgery in the ICU. My body just doesn't handle that kind of stress very well and I just keep hoping that with age and getting physically stronger I may have become strong enough to handle this surgery better than all the others.

Right now I can't do anything about either of these questions so I'm just gonna focus on packing and making sure everything is taken care of before I leave.

Hurts So Good

Sometimes I wonder what it would be like do go threw a day without any pain. And I don’t mean getting rid of pain by drowning it or masking it with drugs I mean if it just wasn’t there to begin with.

With my disease pain has always been a major part of my life. In fact I can’t recall a day when I wasn’t in pain whether moderate or severe. I’ve learned to function threw the pain, and for the most part I can get threw the average day without anyone knowing anything is bothering me.

On days like this particular day when every move feels like my bones are being crushed, I fantasize about what I would do if the pain didn’t exist. Sometimes I think I would feel weird, kind of like what I would imagine an outer body experience would feel like. After so many years of functioning with the pain I think I would feel like my body wasn’t mine anymore. Other times I think of how much I would love it and all the things I could do without getting the aftershock of pain that always follows.

In the end it always comes back to the same thing…pain is part of life. Some people have emotional pain and others have physical pain. It’s how we deal with the pain in our lives that define our character. Too many people mask their pain and try to bury it but that only ends up adding to the pain. It’s only by confronting our pain and dealing with it can we move past it.

Do I look helpless?

So I'm about to get on the subway when the cashier rushes out of his little booth and asks me which way I'm headed. Thinking that the elevator may be down I quickly ask if it's working and tell him I'm heading eastbound. He says that it's working and then asks if I need any assistance. I thank him and say I'm ok. He then asks me if I'm sure. Uhhh yeah I'm sure, I'm disabled not stupid, I think I know when I'm capable of handling something on my own. What made me even more frustrated was that even after telling him that I'm positive that I can handle boarding the train on my own...he continued to ask if I was sure. Finally I just started to move away from him towards the elevator. I understand he was just trying to be nice and make sure I would be safe getting where I needed to go, but questioning my answer when I tell people I'm capable of handling something on my own make me fell like they think I'm stupid just because I'm disabled. I'm just gonna put it out there for the record...BEING DISABLED DOES NOT MAKE YOU STUPID!