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…
I stood for 103 seconds yesterday. Standing for 1 minute and 43 seconds may NOT sound like a lot; but it IS… to me. I started out on Monday (the first time I worked out after my “setback” got better) standing for 43 seconds and I increased today after walking on Wednesday for 20 yards. I really feel that I have turned a corner in my journey to walking. Jesse told me that yesterday. He said it’s just like with pro athletes. You build them up and then you have to break them down and then you’ll build them up again. I told him that I was glad it was him who broke me down the past two times. Jesse’s leaving Barwis for a better opportunity for himself (I’m HAPPY for him and wish him the BEST) so he won’t break me down again if I need it.
I worked with Phil yesterday as I did on Monday. My second try at standing, he flip-flopped his hands on my lap as I was sitting in my chair and told me that it was good luck and to stand up. I laughed and prayed while I was standing. I told Phil that I’m religious so I was praying as I was standing and because I need the utmost concentration as I am doing something SO difficult; I close my eyes. I stood for 43 seconds the first time and 30 a piece the last two times. After that, we did the normal hamstring leg curls and extensions.
I only have been thinking about how difficult something so easy as standing up is because I was thinking about my recent setback. In this recent setback, I had a huge bruise on the back of my right thigh and my right leg didn’t work. I couldn’t put weight on it. It felt like my thigh and my calf were dipped in acid water. They hurt, I was stretched out on my last “Walking Wednesday” because it was obvious I wasn’t getting steps off easily. My right leg was really tight and needed to be stretched out.
I got a great stretch which was needed (that caused the bruise). I showed a colleague at my school (the PE teacher). He said it was the muscle fibers tearing from the stretch and because they really haven’t been used in a while. It HAS to HURT if it’s to HEAL; I understood that but I really couldn’t walk. My right leg got really swollen and my Mom wrapped it in one of my Dad’s old compression wraps. That was on October 30, 2013. Since then, I have just had Jesse work my legs and ankles to get the swelling down and then I started doing squats in my wheelchair. Just standing up and down in my chair. Jesse knew that we had to wait out my leg being swollen and this huge bruise on my thigh. He told me today that I was finally getting the better of the setback. He fist bumped me and Phil had to put me in my car when we were done working.
It has been really hard work since I came here but as I said in my interview that Connor put on Facebook, I’ll do anything to walk. I am doing just that. It is extremely hard as Chris said to me yesterday, but completely worth it! Chris said that you would never become a doctor or a lawyer by just giving 50% so I have to give this my ALL. I am lucky that my Mom understands the principles that they use at Barwis and she has helped me through both of my rough times. I didn’t know how long the rough times were going to last; but I am happy that my last one is coming to an end. I didn’t cry this time. I just was REALLY frustrated! It’s frustrating not to be able to straighten your leg when you sleep and when you try to, the acid water burns more. It’s frustrating being confined to your house on the weekends. And it is frustrating needing help with things you have done by yourself for over 20 years. I am glad that this frustrating time is finally coming to an end. Everything worth having is HARD to get. I’m going to get it!!!
Yesterday at work, I was nervous how “Walking Wednesday” would go for me. I felt extremely tight in my legs and my hips were turning in oddly – making it hard to stand. I didn’t think it would go well. I asked Phil to “warm it up, Kris” (I always say that to him). He stretched out my legs while I sat in my chair. Then it was, “go time.”
I told him that I get 4 downs regardless of yardage. After 4 downs I usually am exhausted! Phil and an intern named Lindsay were working with me. I stood on my own and they handed me my crutches. I was able to get 7 yards. I sat and rested and Phil asked how it was feeling. My left leg felt strong but my right leg (I call that one my “poop” leg) didn’t feel very well or strong at first but it was slowly feeling better.
My second down, I was able to get enough yardage for my conversion but Phil and Lindsay had to pick me up from out of my chair. I talked with Phil about “technique” and standing tall. He told me to get my butt underneath me and to push my hips forward. He said to put a lot of my weight on him and just to get steps off. I’m not sure of the yards I got on each down after that but the biggest thing that sticks in my mind is that even when I could not get any more steps off; I remained standing. I didn’t collapse on the turf or into my chair. It wasn’t because I wasn’t tired, because I was! With Phil coaching me and encouraging me to continue to remain standing until my chair was pushed up behind me; I was able to do it. I was standing tall! That felt REALLY good!
This “Walking Wednesday” wasn’t the MOST yards I have clocked but it felt the BEST so far!
Yesterday before training, I was hoping to hear my “walking” song; but I didn’t. I heard the song to my Mom. (Makes me cry EVERYTIME I hear it!) For those of you who know her… this song is me singing about my Mom.
