This picture is my favorite!!! It looks like I’m being stretched before a sprint. Or before my floor exercise routine. Or maybe I’m a dancer! Sadly, none of the aforementioned scenarios are true. But my wheelchair is NOWHERE in sight. I look like I’m an able-bodied person! Maybe even an athlete. I remember this day vividly. It was a Friday in July and my Mom had accompanied me to Barwis. I was going to start back to work the next week. It would be a change of routine for me and I wasn’t coming to Barwis the first week I went back to work. Going back to work after my summer off is a big adjustment for my body and we didn’t want to overload it. Since my Mom had accompanied me, Jesse told me that we could get a good stretch in because I would not be coming the following week. I was nervous to NOT come. I didn’t want to undo all of the progress I had made. And I had made progress! I wasn’t walking yet but Jesse had told me on numerous occasions that there was “no question” that I would walk again. I still had difficulty wrapping my head around this idea but I had and have COMPLETE faith in Jesse.
So that day after squats and standing, Jesse took me over to a large open area and he stretched me. It “hurt so good” as my Dad used to say. Jesse had told my Mom that he has to “break the ice” around my muscles. The muscles in my legs have not been used in a VERY long time. They are atrophied (shriveled and knotted up if you will). The stretch really DID feel good if not a little bit foreign. I knew to just breathe through it and it would be okay. Both Jesse and Jon had asked me before if I was flexible before my diagnosis. They both would stretch me pretty far without me complaining of pain. I told them that I have 4 older brothers. I was used to not complaining. Messing around with my older brothers, If I said it hurt, my brothers would push a little more as I was a child. I knew that there was a reason these men were stretching me so much. I didn’t want to stand in the way of progress.
This is my other favorite picture even though you can see my wheelchair. When I student taught, my cooperating teacher taught a yearbook class. I think of that 9 years later when I look at this picture. He would tell the students to think the acronym APEER (Action, Perspective, Eye lines, Emotion, Reaction) when shooting pictures for the yearbook. I think this picture embodies that! At least for me.
When we left Barwis, my mother had to help me into the car. Thank God she was driving! I was SPENT! My entire legs felt warm and loose. It was a feeling I had not felt in so many years. My legs were two entities. Instead of one shriveled mass, I had two legs! It LOOKED as if I had TWO legs! My knees were not touching and my feet were not turned in. I had been working on that for over a month and now I was conscious of the fact that it was working! My legs felt a tiny bit “burn-ie” but in a good way. My Mother had to help me A LOT over the weekend. I was nervous as to how I would be able to handle things by myself at work come Wednesday.
It was Monday, August 19, 2013 that I cried. These tears would not be happy tears. I was at home and my Mom STILL had to come over and help me get into my bathroom. My house was built in 1951 and it is NOT wheelchair accessible. In 1951, apparently people in wheelchairs did NOT own houses. But in 2013, I DO own a house and I AM in a wheelchair and I own THIS house. Given how my legs were feeling now, I wasn’t able to get out of my chair (my bathroom doorway is not wide enough for my chair to fit in) and take the few steps with the aid of the sink and bars on the wall necessary to use the bathroom.
At this point, the feeling had progressed from a good “burning” to it feeling like my legs were frayed rope. My ENTIRE legs felt this way. From my thighs all the way to my ankles. I laid down in my bed hoping to get some reprieve from how my legs were feeling. As I lay there staring at my bedroom ceiling, I am having a text conversation with a friend. I tell him how my legs feel and how now it feels as if someone has set the rope on fire. I then text him saying that I feel like I’m going to cry! He replies with a simple “Do it then and then suck it up and keep working hard.”
His simple response helped me more than he could know. I continued staring at my ceiling and could see the posts of my bed as tears welled in my eyes and started streaming out of the corners. They were hot tears and they were falling into my ears and soaking into my pillow. I didn’t sob. They were “strong, silent” tears as I call them as if somehow that is the better of the two kinds of crying. I don’t know how long I cried but I felt better afterward. Not that my legs were hurting any less but my perspective had changed. I had just finished crying. Check. Now I was on to the second item on the list. I have to suck this up and item #3 I have to keep working hard. Things seemed clearer to me. I knew what I had to do.