Author: Jen Rios

Connor came out to get me into Barwis yesterday because of all of the snow.  He saw me pull up  from his office.  It took awhile to get my wheels wiped off from all of the snow.  Oh, I REALLY don’t like snow!!!  So Phil comes over and we stretched by the table because there were people sitting in the chairs.

I told him that I was okay if today didn’t go well.  I talked with my cousin Kimmy the day before and she helped me get a different perspective on things.  She said maybe I should set my goals smaller and once those goals are achieved set them a little higher.  Then she pointed out all the goals I have already achieved and how they aren’t actually LITTLE achievements:  I’ve gotten out of my chair, I’ve stood, and I’ve hugged my boy while standing, and I’ve taken steps – over 100 yards.  She told me to not focus on my big goal (walking) because that WILL happen; it will just take longer than anyone wants (ESPECIALLY ME!). And she told me not to forget or take for granted all of the things I have fought SO hard to get back.  She told me that she knows it’s hard, frustrating, and easy to give up.  She wanted me to see all of the achievements for what they are – a gift, a step closer.  I liked how all of this sounded!  She was right!  But then it was time to start walking…

I get situated and Phil brings my crutches over and we got help yesterday.  I think his name was Mark.  Mark and Phil get me standing and I take one step and then another… and that was it.  Phil takes me back to the table and he stretches me.  Phil had wanted to NOT walk yesterday.  We went to the Keiser machine before getting ready to walk and it was incredibly hard for me to stand.  He told me that I can’t walk if I can’t stand.  I think he saw the look on my face and then he said we could try it.  2 steps.  That’s all I got.  Bummer.  My right leg kept resisting him as he was stretching me.  I told him that it was doing the same thing to Jesse in the summer and I told him that I told my legs with a pat on them, “C’mon legs – Jesse is a friend.”  I told Phil that maybe I should tell them that Phil is a friend too, or maybe I should call him Adam.  He laughed and the resistance continued.

I drove home in silence.  The radio was on but I wasn’t listening to it.  2 steps.  That was it.  My son asked me how “Walking Wednesday” went and I shook my head and just said “Two steps.”  He could tell I wasn’t okay with that and didn’t ask anything further.  I texted Jesse and said “Two steps.  How frustrating!!!  Some “Walking Wednesday.”  He texted back to “keep working.”  I told him that I will and asked if it really was going to happen.  He said “You know it will.  But you also know it won’t be easy.”  I texted back “True.” And that Sheryl Crow song popped in my head and then I texted back “But no one said It’d be this hard.”  He responded “It’ll be difficult” and I asked “but not impossible” and he says, “Not at all.”  Then I said “Ok then” and got ready for bed.

I laid in bed for a long while.  I thought back to when I cried back in July because my legs hurt so much.  Then I thought back to the end of October beginning of November how they were hurting again when I got that BIG bruise on the back of my right leg.  I didn’t cry then just like I didn’t cry this time.  I told Phil when he was stretching me that “I have been coming here for 6 months already” like, “come on already, why am I not walking?!”  He said,  “Yes, but you were in this chair for how many years?”  So I told him, ” 8.  So it’s just like when you break up with someone.  For every year you were together, it takes a month to get over them.  So then in two months I will be walking!”  He laughed and told me that he doesn’t think that translates the same in this instance.  It would be nice if it did.  But, it doesn’t.  So my goal for now is to take that third step.

I should be just about ready to start working out at Barwis right now.  I did not go to Barwis because of all of the snow.

Sean and I had snow days today and will have a snow day tomorrow too. I woke up this morning and got out of bed and this was my thought for the day. I have been thinking about what it said all day so far…

Hope anticipates. I’ve got that one down. I have been hoping since I came to Barwis about 6 months ago. I was hoping before I came to Barwis but I didn’t know how my hope was going to come to fruition.  I didn’t know that I could hope for my legs to work once  the ability was lost.  My  hope has been renewed now. After coming to Barwis I KNOW that I CAN get my ability to walk back and I WILL.  It’s just a matter of time.

Faith believes.  I’ve got that one down too.    I had total and complete faith in Jesse when he was working with me and now I have total and complete faith in Phil.  They know what they are doing.  I was reminded of Parker in the beginning of coming to Barwis.  Jesse would get the same look on his face as Parker did, the same look as Phil does now too.  They get this far off look on their faces as they are feeling for particular muscles in my legs.

It’s the patience that I DO NOT have! I WANT to be walking yesterday!  Or last week.  Or last month.  Or 5 months ago.  I feel that I am NEVER going to get my ability to walk back unless I “quietly wait” but I am SCREAMING in my head.  I WANT to walk.  I’m WORKING to walk.  Why isn’t it happening RIGHT NOW?!  I have to wait for it.  And waiting is hard.

So I get into Barwis today and I think it took about 20 minutes to wipe off my wheels of all the snow and salt.  This year has been the first year that I’m conscious of this fact and it really stinks!  Hopefully, it will be the LAST year that I deal with this!  Phil asked me how I was feeling and I told him that my legs hurt but not as much and I pointed to my right leg which has been my “poop” leg. I tell him that it feels like Susan’s curls in the Ramona Quimby book series.  He laughs and has no idea what I am talking about. Then I tell him all about Ramona Geraldine Quimby and how she was my favorite character in a book when I was a kid.  When I was a girl (probably about 25 years ago) I really liked Ramona Quimby books (Beverly Cleary wrote them) and  in one of those books she talked about a fellow student in Ramona’s class who had curly hair.  The student’s name was Susan.  I couldn’t remember Susan’s last name but I remember Ramona calling them “boing-boing curls” because they would bounce up and down when she walked and Ramona always wanted to pull the curls. I said my legs kind of feel like that. I straighten them out and they “boing” back and I’m not sure why. I do know it kind of hurts.

Eric came over and explained to me why my legs were doing what they were doing. Phil said it was really hard to straighten them out.   I’m sure it was! He told me to just head over to the table and I didn’t argue.  I remind myself that it’s baby steps, Jen!  It WILL NOT be linear progress as Phil is pushing me to the table.  He said he really wanted to stretch me out.  Phil REALLY stretched me out and made my legs feel better. Now my right leg isn’t “boing”ing like Susan’s curls.  Thinking about it; I bet this weather isn’t helping anything!  My brother was telling me tonight how much snow is supposed to be coming.  That doesn’t help at all but my legs haven’t been hurting as much as they were.

Phil told me that it MAY be because I am on break and the change of my routine may be messing with my legs; maybe I’m not using them enough. I told him that I’m kind of “over” this break (not that I necessarily WANT to go back to work on Monday).  He said that we’ll do squats and stands on Monday. I agreed and told him we can get ready for “Walking Wednesday.” The first one of the year!  And 2014 is the year I regain my ability to walk!!!

I did not feel well today before I went to training. Both of my legs felt really tight.  I found it difficult to stay asleep last night. I woke up to my legs hurting repeatedly throughout the night, my right leg more than my left leg. It’s not a cool feeling for your body to hurt so badly and to know that there really is no possible way to escape it.  When I got into Barwis, Phil asked how I was feeling. I told him to just “break the ice off” of my right knee and then I would do really well. He stretched out my right leg as I sat in my chair then we made our way to the Keiser machine. I did a few quarter squats and some stands.  I *BINK*ed a few times.  I didn’t feel GREAT about my performance today but it was better than what I did on Friday.

I talked with my cousin Kimmy last Saturday. We talked about how our bodies (she has MS too) can not process sugar properly.  It kind of stinks because it’s not like I am drinking syrup or eating spoonfuls of sugar but the little bit of sugar I have allowed myself to have this Christmas break is really effecting me. I haven’t had sugar in two years and I guess I was feeling a little weak this holiday season. But I am paying for it now. That is what it has to be. My legs haven’t hurt like this in a very long time!

We did some leg curls and leg extensions after we left the Keiser machine. Eric sat next to me on the table and we talked about football and the upcoming playoffs.  I did not feel as if I “rocked the casbah” at training today but it was better than nothing. I had a lot of realizations today (sugar is REALLY NOT my friend and that stinks!) but I said in my interview with Connor back in July that I would “do anything to walk” and if not having sugar anymore is what I need to do I will do it. I just needed to test it out a little bit.  I will get ready for my next “Walking Wednesday” which will not be until the 8th of January. It will be a brand new year.  The year I regain my ability to walk!  Things will be good!  …as long as a don’t have any sugar.