Author: Jen Rios

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!

TOTAL YARDAGE = 84 YARDS!!!

Jesse has worked with the former paraplegic people such as Brock and Chris.  He also currently works with 3 women with MS.  I am one of them.  The last “Walking Wednesday” (October 30, 2013), I had a set-back.  I am still dealing with the aftermath of that set-back.  Jesse told me sometime last week that people who are paraplegic from an accident, have 1 accident and they move forward from that day.  With people with MS, EVERYDAY is an accident.  He said that to me and it made complete sense!  It wasn’t as if I already hadn’t lived through these “accidents” everyday for the last 13 years but to hear a person without MS completely GET IT was almost overwhelming.   These accidents are NEVER fatal.  Sometimes they total my car and sometimes they are mere “fender-benders.”  Everyday is different.  Most days they hurt.

I had a friend tell me that an MS diagnosis is not a death sentence.  Instead, you have to LIVE with it for rest of your life.  That “living with it” is hard sometimes.  It’s frustrating having my brain tell my body to do something and it doesn’t.  It can’t. or it won’t.  Something that I used to do effortlessly before is now impossible for me to do.  Or I need help to complete a task I used to complete without thinking before.  THAT fact is the hardest to deal with!!!  I get frustrated when I need to ask someone to help me.  It’s humiliating and I don’t like it.

I am blessed with a mother who will help me with anything and not make me feel bad for asking.  That fact doesn’t mean that I don’t feel bad about it.  I greatly dislike asking in the first place.  With this last set-back, she had to and still has to help me with A LOT.  I looked at her with beseeching eyes and asked if she knew that the help I need right now isn’t forever.  It has to get worse before it gets better, it has to hurt if it’s to heal,  everything worth having is hard to get.  This set-back was just a means to an end.  The end will be me walking.  If she knew this, it would be easier for me.  She looked at me with tired eyes and said, “yes, Jennifer.  I know.”  As long as she could “steady the course” with me.  It would be okay.  “This too will pass.”  It is hard sometimes in the midst of the all the bad to remember this but what other choice do I have?

I have talked with Chris from Mike’s TED talk a number of times.  He leaves training as I am coming in.  The first time I talked to him, was after my first time walking.  He was talking with another woman and she had seen the video of me walking.  She talked to me about that.  He was standing and talking with her with a walker (the kind with the wheels in front).  I just smiled at both of them and then continued to get ready to start working.  It wasn’t until mid-way through my workout Jesse and Adam told me who he was.  Really?!  He was like a celebrity to me having seen the TED talk so much! I have yet to meet Brock.  He works out at the same facility as I do (the one in Plymouth), but I have not seen him.  I guess it is kind of like meeting Mickey Mouse at Disney World.  DUH!  You HAVE to meet him!  Mickey Mouse started it all.  Brock (and Chris) started this journey for me.  I told Jesse that since I have been coming for over 4 months now without seeing him, I think I’m going to have to get his autograph or something!

The next time I saw Chris, he was walking out of Barwis Methods with 2 canes this time as I was wheeling in.  We made eye contact and I asked; “so, it is weird?”  He furrowed his brow and asked, “is what weird?”  I replied, “you know…  walking.”  He thought for a minute and said it’s great and cool and then he stopped and said, “yeah.  It’s weird.”  That day in talking with him, it was SO cool to get his perspective on things.  He KNOWS what it is like being in a wheelchair, and he KNOWS what it is like getting out of a wheelchair.  In later conversations he told me the percentage rates of people in chairs who get out.  I can’t remember exactly what he said (I don’t want to misquote him!) but I knew it was in the single digits.  He also KNOWS how hard it is!  He said that to me.  “It’s hard work.”  I said that I knew that it was!  I told him “I’m kind of over this,” and pointed at my chair.  He said I could get out of it and said, “When you take those first steps, it’s WONDERFUL!”

He told me that he got rid of his wheelchair.  He gave it away.  He didn’t want to look back.  It scares me to give my chair away.  It has been a HUGE part of my identity for a very LONG time!  We’ve talked about difficulties that you face in a chair and I’ve never talked with someone who knows and has faced those SAME difficulties (if not barriers).  He knows what it’s like when you can’t reach something or if something “says” it is handicapped accessible.  And it’s NOT!  MOST times it’s not.  It was cool for me to get that perspective from another person who shares (or shared) the same perspective as me.  I don’t know what life will be like after this wheelchair.  It’s scary.  But, I AM working toward that life and it WILL be possible “no question” as Jesse says.  I hope I am ready for it when it comes.

I really thought I would be walking after that first time.  I thought it would be like riding a bike.

IT’S NOT!!!

I started doing squats at the squat machine without a harness but I still couldn’t get any steps off.  Or maybe 1 or 2.  I was getting frustrated.  Jesse told me we were going to take a step back from walking.  Do muscle work.  Get my legs stronger so walking would be easier.  Then he asked what I thought of that.  I was sitting on one of the blocks and before I had a chance to answer, he teasingly said,  “I call the shots.  What I say goes.  We’re gonna do that!” with a smile.  I saw where he was coming from.  I was only doing quarter squats by myself now.  I needed the full range of motion that I wasn’t getting on my own.  I conceded.  Did I really have a choice?  We worked at squats with a harness gradually lowering the amount of air that was helping me.  I was doing squats with no air but in a harness just in case.

Jesse had told me very close to the start of my time at Barwis that he and the guys had decided on “Camo Wednesday.” On Wednesdays, you have to wear camouflage.  I told him that I didn’t own any camo.  I don’t wear camo.  He told me to get some.  I ordered Duck Dynasty (I kinda dig that show) camo socks.  I wear them every Wednesday.  We were at the squat machine with Phil when Jesse told me to bring my crutches on Wednesday.  You mean “Camo Wednesday”  AND “Walking Wednesday”?!  I was excited!  I had been getting stronger and hoped I would have something to show for all the squats, leg curls, and leg extensions I was doing!

The first “Walking Wednesday” was September 25, 2013.  I was a bit nervous but excited.  I wheeled onto the turf with Jesse and Phil.  A new intern Chris was with us as well.   Jesse and Phil helped me to stand and Chris followed us with my chair.  Jesse and Phil had their hands under my armpits in case I needed support.  I started walking!  It looks like a football field and I love football!!!  Jesse and Phil were encouraging me.  I was cruising!  After I passed the line marking off 10 yards despite the intense concentration that I HAD to have, I said, “Move those chains.”  All of them started to laugh and I kept walking.  I got 19 yards on that first drive.  I needed to sit and rest.  After I had rested awhile, Jesse said, “Okay, it’s second and one.  Let’s go.” I got that first down I needed plus another first down.  11 yards.  Al (he worked with me for a little while) said it was fun having a football discussion with a girl and she knew what we were talking about. All while I was walking!  I was getting tired.  I got 4 more yards off.  It was 3rd and 6.  I went for it, thinking something was going to happen on my 4th down.  I couldn’t do anymore.  I should have punted!  That first “Walking Wednesday” I got 34 yards.  Fist bumps all around and many words of congratulations.

That next Wednesday I wanted to keep the momentum going.  It was October 2, 2013. I couldn’t get ANY steps off!!! We still did leg curls and leg extensions even though I didn’t walk.  It’s okay.   Next week.  We’ll do better then.  I had to shake it off.  I texted Mike and told him that I did kind of stinky!  He told me that I NEVER stink and it is the effort that matters.  I’m TRYING!  That’s for sure!!!  I worked SO hard with Jesse and Phil that I sweated.  August 26, 2013 was the first day I “glistened.”  I hadn’t remembered the last time I sweated.  I generally try to stay out of the heat (it’s bad for me) and I don’t really exert myself THAT much being in a chair.  This time, I was doing more than “glistening;” I was “sweating like a pig!” as Jesse told me.  I WAS too!

On October 9. 2013. Nothing.  What happens when “next time” doesn’t come?!  I still worked hard at other things but it didn’t sit well with me.  It was a given that I would have to be lifted into my car.  Jesse, Phil, and Chris have ALL had to do it.  That day Phil walked out with me.  After he lifts me into my car, I look at him (I feel tears not that far off) and I ask, “why am I doing so sh***y?!”  He replies right away,  “because we are kicking your a**!”  Oh!  Then it kind of made sense.  So they didn’t think I was slacking!  It’s been awhile since Phil told me that.  Our exchange, in its raw form still stays with me in the core of who I am.  I believe that Jesse knows what he’s doing.  EVERYONE knows that I am working hard.  The walking will come.

On October 16, 2013 I got 19 yards off.  It was no 34 yards but it was something!  I was walking!

On October 23, 2013 (my parents’ anniversary) I only got 3 yards.  But I was moving!

On October 30, 2013, I got 8 yards.  Jesse even gave me a courtesy 5th down but I couldn’t get any more.  It was against the rules anyway.

I have clocked a total of 64 yards.  I told Mike that I want to put them all together in one drive.  Mike says that I CAN walk.  We’ve already done that!  I just have to be consistent about it and we WILL get there!  Sean and I went to the Prep Bowl this year. I saw what 64 yards looks like and that is pretty far!  I was a little bit impressed! I walked that!

I told Jesse that once I clock 100 yards, I will get a camo shirt to wear on Wednesdays.  It will have to be a Duck Dynasty shirt.