Author: Jen Rios

So yesterday, Phil told me that we were just going to stretch.  I really didn’t argue with that but I was hoping to do squats and do MORE than 21 reps so I could say that Clowney has nothing on me!  (yeah right)  I was down for a stretch though instead.  He asked how I felt and I told him that I haven’t felt as bad as I have been feeling.  (If that makes any sense) This prolonged cold is REALLY getting to me!!!  I could feel my body resisting as Phil started stretching me.  It bothers me that I can’t control that.  That inability to control your body really is humbling as my friend with RA has told me.  I wasn’t going to think about that for to long though.  I was just going to “relax” as Phil always tells me.  I told him yesterday that I actually visualize him saying that in my head.  He is sitting at the Keiser machine and says “just relax” like he always does.  He kind of smiled and said, “good.”  If only the relaxing part was that easy for me, right?!

I asked after Sherrie and Amanda.  I’ve decided that they are my “girls” even though I have never met Amanda.  Both Sherrie and Amanda understand things that I try explaining to other people and it always falls short.  They understand because they also have MS.   Sherrie, Amanda, and Kimmy all know things that I can’t ever put into words or come up with a fitting analogy because they KNOW how it feels.   As my cousin Kimmy says, “MS sucks!”  I’ll agree with that.  But what else am I going to do?

Phil was stretching my hard-core and it “hurt so good!”  I could feel my body resisting less and less and that was nice.  I always think of  it as me being clay and it takes awhile for it to become mailable and easier to work with.  Phil told me to put my legs over the side of the table and he was going to stretch my ankles.  Once my legs were over the side, I told him that , “my legs feel warm.”  And they did.  I could feel blood flowing through my legs all the way down to my feet and back.  That’s a REALLY nice feeling!  Phil told me that we were done and Backey was going to take me out because he had a client.  He pushed me over to the chairs where my coat was and I kept my feet up the ENTIRE way!  He puts his fist out and pulled it away as I went to grab it and then I put my fist out to fist bump him.  I was going to take getting my fist grabbed but then he put his fist out again.  I couldn’t resist.  I grabbed his fist and yelled, “Joystick!” and he smiled  just as Backey came over to take me out to me car.

I got into Barwis today and Chris was there. We talked for awhile about the snow and the salt and how messy it all is in a wheelchair.  He asked how things were going and I told him that in this weather I don’t feel that my sessions are that productive but I do get an excellent stretch!  he nodded and told me that that was it good thing. He reminded me that I need to have patience. I really stink get that! Then it was time for me to start and he told me to have a good workout.

Phil stretched me and I told him about my conversation with Chris.  Phil told me that everyday I come there is productive. He asked me what else I would be doing if I didn’t come there.  My response was “reading.” Then he asked how much reading is going to help me get out of that chair? I nodded. He was right. He told me he was going to harness me today and waited for my reaction. He said it wasn’t for anything bad but he wanted to help me stand by pressing on my hips and there weren’t enough people there to help in guiding me to stand as he was adjusting my posture. Okay then. So it wasn’t a BAD thing I was getting re-harnessed so I was okay with that.

So Phil gets me into the harness and had me stand before he pressed the air to help out. He adjusted my knees and my hips and asked how that felt. I told him it felt foreign and like I wasn’t standing up straight and my butt was hanging out in the back.  We did this a number of times and I did a few squats. Then Phil worked on my ankles and we were done.  It is debatable how productive this session was but I really did get an excellent stretch!

I was able to get into my car by myself on the second try. Almost. Phil needed  to help me get my legs into the car. He kept saying “c’mon, c’mon, c’mon” over and over and that was funny. I don’t think we fist bump any longer. It’s now both of us trying to grab the other’s fist and shake it and yell “joystick.” So today I was slow I guess and Phil was able to grab my fist and yelled “joystick,” wished me a good weekend, and then shut my door.

I felt SO, SO, So good headed to Barwis yesterday!  It was an EXCELLENT radio day in the car after I listened to my WALKING song and #3 on Sara Bareilles’s Blessed Unrest CD.  LOVE that CD!  I was feeling good and I spent most of the day getting my mind right to have a good showing at Barwis for “Walking Wednesday.”  As much as my mind could get “right” teaching a bunch of 7th and 8th graders, right?!  On my way to Barwis, I heard Phil’s new song.  Well, really it is song that reminds me of Sean but I really dig it and I heard it at Barwis once and Phil and I talked about it.  So now, that song reminds me of Phil too!

I had a really good feeling and then things started to go awry…  I pull into Barwis’s parking lot and the delivery man has his truck parked across the 3 disabled parking spots.  I’m not putting that company on front street because I think that was illegal.  I didn’t want to park on the other side, that would mess up my mojo.  In retrospect, I should have parked on the other side.  I waited for a long while.  But yet, it STILL was a good radio day.  I had started my WALKING song when I exited the freeway so I had an array of songs to choose from on my CD.  No worries.  It STILL was going to be a good day.  Or so I thought…

So, I ended up being a little bit late getting into Barwis.  Grady gave me junk coming in as he ALWAYS does (jokingly of course!)!  He’s the left-handed camera crew guy.  I left my water bottle in the car because I was already late and it had rolled onto the floor of the passenger’s side of the car.  I tried to get it but I couldn’t reach it even going around to the passenger’s side of the car.  I was late.  I would do without it.  It STILL was going to be a good day!  Right?!

Phil stretches me out and I stood.  I did 14 7/8 squats so I felt really good!  Lindsay wasn’t there so Larry helped.  I got 1 yard.  That was stinky!  But everyone knows that first is the worst!  My second down, I only got 1 more yard.  Then that was it.  2 downs (I was late).  My legs were really tired.  Maybe I overdid it with the squats.  Even though I only got 2 yards, I STILL felt good!  I was STILL optimistic!  As Phil was putting my leg rests into the trunk, I asked him when IT would happen.  He asked what IT was and I told him, “you know, IT… walking.”  He told me that he didn’t know but he KNOWS it will happen!  Me too!  I think it was the first time that I REALLY knew that it was going to happen.  Just knowing that, makes me feel REALLY good!  I want this to have happened yesterday but good things are worth the wait!  Walking to be will be REALLY good so it is REALLY worth the wait.  I tried to get myself into the car but I undershot my car seat again!  Phil helped me get in.  He hit my head on my door frame.  Hs hit HIS head on my door frame.  He told me that this was the most horrible job he has done.  It was!  But soon it won’t be necessary!  Maybe it was because he hit his head but I was able to grab his fist when he put it out to fist bump me and give it a shake before he pulled it away.

I woke up yesterday morning to my legs being really tight and hurting. It was the first day of my winter break and Sean still had to go to school so my Mom came to pick him up (she works right by his school).   She came into my bedroom and I told her that I needed some help getting out of bed. She pulled my covers back and was expecting me to do something. But I couldn’t. My legs would not move no matter how much I willed them to. Man, that really stinks!

My time at Barwis was what I expected it to be. I was a really tight and it was the first time that it kind of hurt when Adam was stretching me.  I told him that I know I have a MS (that’s the response he and Jesse usually give me when I ask why my legs are so tight as if that is the first time I have heard that news) but I asked why now?  Adam said “it is freezing and it’s supposed to snow tonight.”  That made sense. I asked about Amanda and he said she was tight as well. This REALLY stinks!

I ended up standing for a little bit 5 times. It was on my second stand that I told Adam I could stand for days. But my feet were set a little too far under the bar so it got difficult. As my legs started shaking, Adam said, “it hasn’t been days.” Funny!  I stood for only a little while longer and then I had to sit.  Adam put me into my car.  All this cold weather and snow is REALLY stinky!

I didn’t know how tight my legs were until I got to Barwis and Phil started to stretch me.  He stretched me for a long while and then told me to head over to the table. I asked if we were NOT standing and he told me that he was going to stretch me a little bit more. Maybe we would get some stands in today. So we head over to the table and Phil pulled it away from the wall so he could get on both sides of the table. He started stretching my legs out. They were really tight! He talked with Eric as he was doing this and Eric came over and grabbed my right leg to see how tight it was. He asked me what I was doing and I shrugged and put my hands up. I had no control of my legs resisting and curling up, “boing”ing almost.  Phil stretched me for a long time. For like 45 minutes.

Phil told me to head back over to the Keiser machine and he stretched me a little bit more.  He had a mark on his hand and I asked what it was. He told me that it was the remnants of a Tinkerbell tattoo that a 7-year-old client gave him. He wore it for her. That’s super cute! She is physically disabled as well.  I asked him what it was like to have so many disabled clients who he works with. He said it “was hard… but rewarding.” I really liked that answer.   Then he had me stand. It was very difficult. I told him it feels like I’m Calobos from Clash of the Titans. The 1981 version.  I asked him if he had ever seen the movie and he shrugged. I explained Calobos’s transformation to him and told him that is what I feel like when I am trying to stand.  At least today.  Most days.  He looked at me and kind of smiled and said, “I’ll research it.” because he had no idea what I was talking about.

Here is Calobos’s transformation.  I feel like this when I try to stand up straight.

     Click picture to view.

II stood a few more times and even *BINK*ed for a second. But it was very difficult. Phil looked at me as I was sitting in my chair resting and he said,  “Well, at least you’re looser.”

I WAS looser.  I felt it in my legs on my way home. Even going to sleep last night, my legs did not “boing” up.  But then I woke up this morning. It’s really frustrating that every day is another accident as Jesse told me so long ago. Because I felt super tight this morning. As I got out of bed and was getting things ready for my shower this morning, I noticed that even though my legs feel super tight, my knees were not touching and my feet we’re straight forward and not a curving inward.  These little things are things that I have been working on at Barwis to regain my leg strength. So there is progress. I want a lot more progress but I guess it’s coming.  Too bad I stink at this patience thing!