I DON’T normally listen to anything but Christmas music in December but the fm Christmas station is ALWAYS on a commercial and that drives me NUTS! So I am diggin’ these songs in between Christmas music.
“Safe and Sound” Capital Cities – I don’t know that I dig this one but my son says it’s his friend’s favorite song and then he (my son) dances like his friend. He told me that it reminds me of 2 people so I have to post it. So…
I was reminded of this NOT COOL experience TWICE this weekend. I am aware that this world is NOT fully handicapped accessible. I get around the best I can in spite of these obstacles and/or barriers. The NOT COOL part comes when able-bodied people take advantage of the accommodations made for disabled people.
There is a reason restroom stalls are larger to accommodate wheelchairs or parking spaces are wider to allow for the extra room needed to get in and out of a car and into a wheelchair. Or even dressing rooms. They are bigger because wheelchairs need the extra room, not so multiple people can try on clothes together. If I didn’t need the extra room; I wouldn’t use it. If I didn’t need to park closer because it is SO hard to get in and out of my car/chair; I wouldn’t. But I DO. But I CAN’T when someone who doesn’t NEED TO does. I don’t like it when there are 9 empty stalls in the restroom and I cannot fit in to any of them but the 1 stall I can fit into is being used by an able-bodied person. So I have to wait.
The reason these accommodations are made, is so disabled people can use the parking space, the restroom, or the dressing room. If you are ABLE to use a smaller one, PLEASE do. I wish I didn’t need the extra space and I am working on NOT needing it. In the meantime, PLEASE leave the spot available for anyone who does NEED it.
Last night, my son and I picked up some A&W. We chose to eat-in (my son LOVES to ring the bell when we leave). Our parking was a little bit strange (goes along with my NOT COOL Stuff #3). My car has a chair topper that houses my wheelchair on top of my car when I drive. An arm comes down and picks my chair up as I am seated in the drivers seat. My car is also equipped with hand controls. Upon getting into the car, we were able to get my chair topper in the down position and then it stopped working. It would not go up or down with the control switch. I imagine it was some sort of electrical short but I did what EVERYONE does in situations where they do not know what to do. I called my Mom. She was sick and could not help me. I had already called the after-hours emergency number and left a message. My Mom suggested calling AAA. I could not drive my car with the chair topper in the down position; I couldn’t even get out of the car. The chair topper didn’t allow me to get out of the car or to shut the door. I was listening to the automated list of what number to dial for AAA when I thought, they really can’t help me. My car is running. I just can’t get the chair topper to work.
Then I thought of a conversation I had with my brother this past summer who is a Sergent for the Detroit Police. He told me to “call the cops, they will come. You live in Dearborn.” So, I called the non-emergency phone number for the Dearborn Police. Two officers showed up and I explained that there is a manual way to engage the chair topper to close it up but I didn’t know how to do it. I called the after-hours number again. As these two officers were looking at the chair topper trying to figure it out, another car with two more officers pulled up.
One officer popped my hood because that was were the hand controls are routed through, another officer was google-ing how to work the chair topper manually on his phone, a third officer was shining his light into the chair topper trying to figure out how to work it. I wasn’t sure where the fourth officer was. I was sitting in the car with my heat blasting, not sure what to do for work the next day. The forth officer starts telling the other officers walking them through what to do. I turn my head and see that he is on the phone. It sounds like he is talking to someone who knows what to do. As he is about to hang up the phone, he asks if I got the modifications done to my car at Advantage Mobility. My eyes light up and I said “yes!” No wonder Arnie wasn’t answering my calls! He was talking to this police officer!
The officers were able to get my chair topper closed for me (my son had already stowed my chair in the trunk). And then we were good to go. As we drove away, I looked at my son and said, “It pays to live in Dearborn.” I have lived in Dearborn my entire life. My parents lived (and my Mom still lives) in East Dearborn. We moved into our first apartment when Sean was 3 also in Dearborn. When he was 5, we moved to a larger apartment in the same complex. We moved to our house in West Dearborn when he was 7. It’s times like this one when I am reminded why I truly enjoy living in Dearborn. But I think this whole ordeal happened because this is what I get for cheating! I’m not supposed to have root beer floats! (Even though it was really good).
When the weather gets cold, I wear gloves because I “walk on my hands.” My wheels get cold. Even before I got the really cool looking ones, they still would get cold. Constantly grabbing something cold makes you cold. I am both heat and cold intolerant so I melt in the heat and I can’t stand being cold. I normally start wearing gloves in mid to late October. I wear them whenever I go outside and going to communion at Mass. I also don’t like the feeling of lotion on my hands so my hands get extremely dry in the winter. I know I will never be a hand model and I’m okay with that.
This year, I began wearing my hat and gloves in mid-October. Not long after I started wearing them, they looked like this:
Obviously, it’s NOT COOL because I use my hands so much! I go through at least one pair of gloves a season. Two years ago, my Mom offered me a pair of really nice cotton gloves. I told her that I only wear leather, no thanks. It was when she looked at me a little aghast that I realized that NOT doing things very handicapped accessible isn’t necessarily mean. It is just not knowing. After I explained that I need leather because my hands WILL get wet. Leather acts as a barrier. I get snow on my gloves when I wheel through it. Snow melts. Then she understood.
So, it’s not even December and my gloves look like this! Cold and wet seep in and that is NOT COOL! Some manufacturer should reinforce them in places that are constantly on the wheels. I would be a hand model for that!
This NOT COOL stuff is not in any order. It’s just me acknowledging that something is NOT COOL when it happens to me. I have owned my house for a little over 4 years. I wasn’t completely dependent on my wheelchair when I bought the house as I am now. I’ve had 3 contractors come to the house and tell me that the only feasible solution is new construction. I can’t afford that! I’m a teacher and a single Mom! My son was able to get me into the house but we are having difficulty getting me into the house now when it is just the two of us (MOST times it IS just us two). It’s understandable because I still outweigh him by like 30 pounds. I usually fall backward on him but this time he was able to shimmy out. I told him to get my phone and call my Mom. He agreed and told me that first, he was going to take pictures of me. I told him “No” because the Lions game was going to start but what could I really do in this situation?! Nothing! So I chose to laugh. I missed 10 minutes of the game because of this! They won anyway. My Mom got to our house and was able to get me back into my chair.
Today, it was just me and Phil walking. After we figured out the logistics of how we would work it, I got walking. My first down, I got 8 yards. My second down, I got another first down for a total of 9 yards. I was spent after that. I got 17 yards today. Denied on my third and fourth downs. I was so tired!
Grand Total = 101 yards.
Today was Jesse’s last day. I’m glad that I got a 100 yards for him to be there for it. I told him that he has to tell his Grandma about it and I have to buy a camo shirt. He walked me out after I worked out and he told me he doesn’t do goodbyes. He gave me a hug and wished me luck and walked away. I called after him “thank you so much!” I called my Mom when I was in my car in the parking lot because she had my son. I felt a little choked up. I don’t do well with change; I never have. I missed my exit on the freeway going to my Mom’s house to pick up my son.
Phil took a picture of Jesse and me. I look really tired because I was. I told Jesse that I would send him a pic of my camo shirt when I get one. I promised to wear it every Wednesday like I do my socks. I told Phil that our photo opp will come at 200 yards.
I walked for OVER 100 yards and for that, I am thankful.
As I am teaching my kids (the last day before Thanksgiving break), I am thinking of being thankful (obviously!) I am thankful for many things: my Mom, Sean, my family, and my friends. I have a job and I think I am MOST thankful for everyone at Barwis Methods! I am SO glad that I have found them! I see them three days a week and they have become my pseudo-family whom I love!!! EVERYONE there encourages me and lets me know that it is OKAY to hope for a life beyond this [wheel]chair because it IS possible.
Today is “Walking Wednesday.” On Monday, I stood for 112 seconds. I just need 16 more yards to clock 100 yards. All this, on Jesse’s last day. I told Jesse I would get a camo shirt when I get 100 yard so I hope to get that 100 yards when Jesse is there to see me do it.
Regardless if I make those 16 yards today or not, I am already thankful for the strides I have already made and will continue to make.
I remember as a kid, seeing this Disney World commercial.
This commercial stayed in my mind as I thought about meeting Brock. He was my inspiration! It was his story that made me believe that Mike could maybe help me too. His story was the reason that I really started thinking about walking being a possibility for me.
Yesterday I was having a rough morning. As I was teaching (I’m the Reading Specialist at Cesar Chavez Academy Middle School and I run two reading programs), I was sitting with a student who was about to start a timed reading with me. Before we started, I took a deep breath and thought, “this hurts!” I didn’t know how training was going to go and I was nervous as the day wore on. I get into Barwis Methods and I am greeted by the guys who work there. I tried to be upbeat but I think I’m one of those people whose emotions show on their face so I was thinking the guys could see through my smiles and “I’m alright” responses to how I’m doing. I was sitting in my chair waiting for my time to start watching the high school kids working out. I am amazed at all the high school athletes and how much they can control their bodies. Walking around seems effortless to them because it IS for them. It ISN’T for me.
As I was sitting watching them, I turn my head because I knew someone was sitting in the chairs to my right. I probably did the double take, mouth gaping, eyes bugging out thing because it was Brock Mealer sitting in those seats!!! I wheeled over to him and shook his hand and told him that I watched Mike’s TED talk about 30 times and cried every time! I was so excited to finally meet and talk to him. I was a little bit embarrassed by how rough my hands were when I shook his hand but he knows what it was like “walking on your hands” by being in a wheelchair. I asked him a bunch of questions and I wished I was a college freshman with one of those recorders to tape everything the professor says in case it is on the test. Like that college freshman, I wanted to remember everything he said to me. He said it was “crazy” walking again and that it IS a transition to go from a chair to walking. He said he just asks people to carry things for him. He said some things were easier being in a chair but… and trailed off with a shrug.
Phil (I was working with him today) came over to sit as Brock and I were talking. It was so COOL talking with Brock!!! I needed that boost today. I needed that reminder that it IS possible! Brock told me he does back pedal at times (like I feel like I am right now!) but he said he comes back stronger. After Phil called me, “chatty Cathy” I said my goodbye to Brock and went over to start working. Phil could see that I was so star struck having seen Brock, he asked why I didn’t take a picture? I told him that I didn’t have my phone so he calls Brock over said he would take the picture and send it to me.
It was SO cool to see him! I needed that and now I have a picture to remember this day! Like that commercial I remember as a kid, he’s my Mickey Mouse.
Last night, as I was standing and attempting to take steps, I felt my body resisting me. I felt it in my legs. It was the first time that I consciously felt this feeling. I wanted my legs to take normal steps. They had a different plan. They wanted to turn in when I wanted them to turn out. It was a fight. Is resistance really futile? It didn’t feel that way. I feel that their will is stronger than mine at times and that STINKS!
It felt that way this morning as well. Sometimes, I fall asleep thinking I will wake up in the morning and my body will feel normal. It won’t hurt. It won’t resist when I want it to move a certain way. But then I wake up in the morning and things are the same. It was more pronounced this morning. My legs were painfully stiff this morning. Everything was more difficult this morning. No wonder I wake up at 3:45! EVERYTHING takes a bit longer when I feel this way. Mike told me my first day at Barwis that I would always have MS but getting me more mobile is the goal. This morning was not a cool morning to have MS.
I don’t want to give the impression that it is all “rainbows and butterflies” all the time because it is not. Who wants to focus on that though?! I don’t. There were 2 instances while Parker worked on me where my body felt completely normal. But then I moved; and it was gone. I had that feeling once so far at Barwis when Jesse was stretching me out. But that feeling too, was fleeting. I just have to take the day as it comes and deal with it accordingly. I hope it is a GOOD day at training today…
