It’s been over a month since I started doing physical therapy and occupational therapy at the Day Rehab Center and it’s been a lot of hard work. The work has been tough but I’m enjoying myself and having a good time. While my therapy has been success, I’ve has to once again put my film on hold and that’s something that has bothered me.
I was upset that I couldn’t finish my film because I had put myself under a deadline to have The Wheelchair Chronicles completed and sending it in to different film festivals across the country but that’s not gonna happen. At first, I was pissed because that meant I had let a lot of people who have supported me and this film down but then after getting some words of wisdom, I realized that my supporters will completely understand that due to working at Day Rehab and dealing with other issues, people will understand that my film is not finished.
I forgot that I have the best supporters in the world. People who love me and actually care about me and they are very understanding as well. I have to remember that and now I’ve also gained a whole new set of supporters from Day Rehab. I’m no longer putting myself on any unnecessary deadlines. My film will be done when it’s finished. Now I can relax and focus on giving you all a great documentary about my life in a wheelchair.
So Monday I started my first full week at RIC and my therapy was typical of the first couple of sessions but during Monday’s session I got a chance to get to know about my therapists. In my first session of the morning I got a chance to meet Allie, a new therapist that just started that morning. We hit it off very well, I found out that she was from South Carolina and had just moved to Chicago just five months so she was still getting use to the city. We talked for a little while and she was telling me that she was preparing for winter and I told her that winter here ain’t no joke so you better have all of your equipment to handle winter in Chicago. Well she told me she was “ready” but we’ll see as we get closer.
My second session was with the torturer Megan who once again put me to work. This time we were doing sit-up type exercises to work on my back and shoulder. Then we did forward sit-ups first with a medicine ball that worked my forearms and then second set of forward sit-ups were assisted by Megan and I’m glad she did because this second set involved bending completely forward (something that did frighten me because I rarely do that) and using my back muscles to bring myself back up, it was rough but I did it. To finish off my session we did a couple of transfers back and forth between the mat and my wheelchair and that ended my session with the torturer. I call Megan that but in all honesty she works me hard and I always feel sore after working with her and that’s a good thing.
My final session was with one of my favorite ladies Grace (no Bridget this time *sigh*) and Christina and for this session we did some simple tasks like working with buttons (buttoning and unbuttoning) and using my hands to roll coins in my hand and put them in a bank. During this session I found out that Grace is originally from Northern California and moved to St. Louis before coming to Chicago. She told me a funny story about experiencing her first winter in St. Louis where she mistakenly used table salt to actually salt the sidewalks. We both shared a laugh and I told her it was an honest mistake but you did learn your lesson the hard way and now she knows. To finished off the session I showed Grace and Christina how I put my jacket on and that was the end of our session.
I put in a lot of work yesterday but I got a chance to know my therapists and I had fun and I look forward to continue my therapy sessions.
Day 2 and they’re already trying to kill me! I worked a lot harder today than my first day as expected. This time I was able to get here thirty minutes early so that really calmed me. I was more comfortable being around everyone and that made me feel good.
This time I started with occupational therapy and met Joanna for the first time to do some arm stretches. I was once again put on my back and I wasn’t hurting like I was the first time but it was still painful. Joanna made me feel very comfortable by helping me relax my legs (which were all over the place). Once that was all over, I had a quick break (still on my back by the way) and waited for the torturer Megan.
I know that when she shows up I’m gonna be put to work and the fun truly begins. Today we worked on rolling on my side and that was tough as hell. It’s difficult for me to roll from one side, then laying on my back and doing the same process over and over.
The torture was just getting started as I was rolled onto my stomach and had my back stretched out fully. The pain was excruciating but as time went on the pain went away little by little. Megan continued the previous stretches from last time and our torture session was over.
After a short intermission, then it was time to work with my two favorite ladies Grace and Bridget. We did some arm exercises that were tough as hell. I was laying on my side and alternating between my left and right arm which made the exercises a lot tougher.
I’ll tell you all something, after my three hour workout I was very sore but I wanted to keep going. I felt like I still had more to give and I want to get stronger. I understand that I have to rest in between therapy sessions. I can’t wait to get up on Monday to do it all over again.
First off, I am so sorry for not posting anything in a long while. A lot has happen in my life and I just didn’t have the time or energy to write on my blog.
On Wednesday I started a new journey that’s separate from my film. I started my first day doing physical and occupational therapy at the Rehab Institute of Chicago. I’ve trying to do this for some time now and after years of holding off on it, I took a big step in improving my life. After talking to my doctor at rehab a few weeks back, she thought that this would be a good idea to get back into therapy especially after I told her about the pain I’ve been experiencing.
The first day kinda hit an early snag when the transportation was an hour late in picking me up (I learned later that he wasn’t late at all and that they wanted to make sure I was ready early). When I arrived there with my mom, I was really nervous because this was my first time there and I didn’t know what to expect. However, when I arrived I was welcomed with open arms and it helped ease my fears.
When I got there I immediately met my two physical therapists Grace and Bridget, two very lovely women who gave me the tour of the place before sending me into a room. The early part of my time there was spent answering questions (you know the usual stuff when you register for the first time). Most of the questions were kinda silly but I had no trouble answering them. I got a chance to get to know them and explain to them what I can and can’t do.
After the Q&A session was over it was time to start my occupational session with my therapist Megan. It was time to get down to business. After a similar Q&A session, Megan started on a few tests to see how flexible I was. It started off with a simple check of my ankles and then it was time to get out of my chair and lay on the mat right on my back. After getting a few pointers on how to maneuver out of my chair, I laid on my back and experienced a sharp pain in my lower back because I haven’t laid straight on my back in a long ass time. Megan did a few stretches and tests on both of my legs, I was thrilled when it was all over to sit back up and relax. Oh, during that time I met a lovely nurse named Sue who only took my blood pressure and I told her I liked her because she was gonna be the only person that’s not gonna put me to work.
After a quick break and signing a lot of paperwork, it time to work with Grace and Bridget again. Thus they worked with me on getting back in my wheelchair (which was a huge mission by the way). After we got back in the chair we did a couple of interesting tests. The first was the hand strength test. They give you this like gold handle and you have to squeeze it very hard (by the way this thing came in this protective black case for some strange reason like it was some rare treasure). The next test was to see how quickly I could put these tiny round sticks and put them in a hole and take them out as fast as you can. I did it with my hands and it seems that I’m more faster with my left than my right. Once the test were over my first day came to an end and it was time for me to leave.
My first day was a success. I was a little nervous at first and they worked me kinda hard, it was great. I know there’s a lot of hard work ahead of me but if anyone can do this and succeed is me.
While I’ve been dealing with my wheelchair problems the past couple of months, I’ve learned that the majority of wheelchair manufacturers don’t test their power wheelchairs before they’re distributed to the public. This makes no damn sense! So basically I’m playing the role of wheelchair tester in the city of Chicago and I think I need to be paid for being a tester. Now it makes sense why my wheelchair has broken down on me only after year because no manufacturer took the time to make sure everything is in working order.
Today is 9/11 and for the past twelve years this has been both a sad day and a joyous day for me. It’s been sad because of the tragedy that took place on this date and the many people who lost their lives. But, however, I’ve always seen this day as a joyous one because this was the day I got my manual wheelchair for the very first time. It’s one of those days I still remember and won’t forget.
On that day in 2001, I was a student at Senn High School on the north side of Chicago and I didn’t want to be there in class at all. I was taking a science class that morning and one of the teachers who taught a class next door would always come in after class to talk and joke around with some of the students. Well on that day he comes into class and starts talking about a plane went into the towers (World Trade Center) and blew it up. The remaining students including myself just dismissed it because he was always joking around and we thought he was plain crazy and I left to head to my next class which was on the other side of the building.
When I got to my next class, I found out that what that teacher was talking about wasn’t a joke and I witness it live on television what was transpiring and everything just stopped. As I’m sitting there in the class with the other students watching this horrific attack, I realized that I made an appointment at Children’s Memorial Hospital to pick up my wheelchair and with all the stuff that was going on I wasn’t gonna be able to leave the school because it was on lockdown.
As I sit in the classroom, I’m worried because I know I can’t leave the school but yet my mom is coming back to get me and has a ride to take me to the hospital. Well the security at Senn found me in class and escorted me towards one of the many exits the school has and my mom is waiting for me and we headed to the hospital. I think I was the only CPS (Chicago Public Schools) student in the city that had permission to leave school while it was on lockdown to get to my appointment.
I arrive at Children’s and the mood is very somber at that time because it still a very chaotic time across the country and you didn’t know what might happen next but the staff at the hospital had to keep working like it nothing was happening. I met up with a guy named Rick who worked at the hospital and who I had gotten know months earlier before getting my chair (He always said I look like a young Muhammad Ali). I was so excited that I was getting a wheelchair that would belong to me and no one else. I was using a borrowed wheelchair at the time that wasn’t comfortable for me at all because I was a tall guy and so getting this wheelchair that would be made to my body’s specifications was a joy for me.
Twelve years later and I still have that manual wheelchair that has definitely seen better days but it still works for me and I’m able to do a lot of things at home thanks to that wheelchair. 9/11 will always have a place in my heart not only because of the lives that were lost on that day but it will have a place in my heart because it gave me a wheelchair I could call my own.
What is a wheelchair? I know that’s a silly question to ask, but it’s an important question to ask and give a legitimate answer to. I spent some time looking up the definition of a wheelchair and I saw few definitions that didn’t give me the answer I was looking for but then I came across the Oxford dictionary online and gave me an answer I could work with.
According to the Oxford dictionary a wheelchair is “a chair fitted with wheels for use as a means of transport by a person who is unable to walk as a result of illness, injury or disability.” Okay, so that’s the dictionary version of what a wheelchair is but I would like to add-on to that definition because I feel that’s just a basic, straight to the point definition. But I don’t feel and I know many others who use wheelchairs don’t feel that way either.
I want to define what a wheelchair is to me; I can’t speak for anyone else in a wheelchair because our experiences are completely different from each other so I can only speak on how I define it.
To me my wheelchair is an extension of myself as a person. I use it to get around Chicago whether riding through the various neighborhoods of the city or using it on public transportation. It helps me to go places around the city that would’ve been impossible for me if I didn’t have it.
My wheelchair is the first thing people see when they meet me for the first time and it’s understandable. What I don’t like are people who pretend they don’t see my chair. You know the ones I’m talking about, “oh when I met you I didn’t see your wheelchair, I only see you as a person.” That’s bullshit! People can clearly see I’m in a wheelchair.
My wheelchair has given me a chance to do things in my life I never thought were possible. If it wasn’t for my chair I wouldn’t be a film director and that means The Wheelchair Chronicles would not exist today. If it wasn’t for my wheelchair I wouldn’t have met all the great people who have made an impact on my life and I wouldn’t have developed relationships with these people.
I’ve been in a wheelchair for 12 years now and I’ve finally gotten to understand more about myself sexually and as a man. I’m 31 and I’m comfortable with being in a wheelchair. Now I do want to eventually want to walk again but as of right now I’m in my chair and it will continue to be an extension of what I can do and who I am as a person.
Over the weekend I was talking to a friend of mine and she asked me an interesting question. “What’s the first thing you do when you come outside?” I told her that when I go outside, the first thing I do is look up at the sky.
Why is that the first thing I do? Well I spend most of my time indoors and while I’m indoors I feel closed in, like I’m suffocating. I feel that I have no space to be free and move around the way I want to. When I’m in my house I have to navigate through tight spaces just to get around and is frustrating (at times).
When I roll outside for the first time I pause and I look up at the sky no matter if it’s sunny or dark and gloomy. I take that pause for a few seconds to take in my surrounds, to get fresh air in my lungs and prepare myself for whatever comes my way.
Let me tell you, when I step outside I feel liberated, I feel like I’m free. Being able to go outside means that I can have fun and be adventurous and experience life. That’s one of the reasons why I put together The Wheelchair Chronicles so that the world can see what I see when I ride outside. I want people to see the total freedom I have when I’m riding in my wheelchair. I want people to see the joy I have being able to ride around the streets of Chicago.
When I look to the sky, I’m grateful that I get to see another day and to get a chance to do something new. When I look to the sky it gives me hope.
Normally on the weekends I like to get early in the morning, get in my wheelchair and just ride around the city. I hate being lonely but when I travel around the city, I like the solitude, I love being by myself just me and my music. I don’t know why I do this but there’s something interesting about riding in Chicago when no one is around with the exception of a few people and cars. You can’t get this during the weekdays when people are going to work early in the morning. I like getting a different perspective of the city when no one is around. I know this seems weird but it sort of puts me at peace with myself. It gives me a chance to clear my head and figure out what I want out of life.
Earlier this afternoon I had a doctor’s appointment with a neurologist at Northwestern to figure out what’s going on with my legs and it was a rough experience. I’m not saying the doctor and his assistant were bad (they were actually great), it was just the test I had to go through to determine if there was a weakness in my arms and legs. My case is so weird to begin with because when they were doing the test, I have some weakness in my arms but have some strength as well and the same goes for my legs. I’m guessing that my strengths in those areas are compensating for my weaknesses.
While I did these test, the neurologist couldn’t figure out why I was sent to him because the reason I came to him was my primary doctor referred me to this guy because of the three muscle enzymes tests I’ve taken since May have been extremely high and it was a cause for concern. Well the neurologist suggest I see another doctor who works with muscular dystrophy that could give me answers.
So I have to see another doctor and it’s beginning to be really frustrating for me because I’m just tired of seeing doctor after doctor to determine what the hell is going on with me. This day has just been tiring and I’m so glad to be home so I can rest and relax.