Author: Jen Rios

I got to Barwis a bit early so I was able to watch Darren workout.  Darren is a quadriplegic and he has been coming to Barwis for 2 weeks.  I watched him get into a harness and get ready to do squats.  Because he is quadriplegic, getting him ready to do squats was more involved for now.  Once he is hooked up and ready,  I saw him look up and smile that smile that was the SAME smile I had when I first did my squats.

Ok.  So, maybe my smile was a little bit bigger (I have BIG teeth) but the sentiment was the SAME.  He started doing squats and I was TOTALLY impressed!  When he was finished with his first set and sat on the bench with the help of the intern whose name I STILL don’t know (but I dug his socks again yesterday).  I just started clapping with tears welling in my eyes because I was SO impressed.  He did two more sets and then they moved over by the mat.  I stayed by the Keiser machine a watched a team of high schoolers work out.  Because I saw a few of the boys who were wearing shirts (MOST of them were shirtless because of the warmth); I saw that they were football players.

I am NO stranger to sweaty, shirtless boys;  I grew up with 4 older brothers who played football in high school and I’ve been coming to Barwis for almost a year.  But, I MUST agree that the air was THICK with humidity!!!

Phil stretched me at the Keiser machine and I attempted to stand.  Apparently, this humidity was doing a number on my body!  I hand already told my wrists to get “their sh** together” again this morning but that wasn’t what was hurting me.  Phil told me to go over to the table and he stretched me some more.  After he stretched me at the table, we headed back over to the Keiser machine.  Phil brought over a half popcorn ball thing and placed it on my head as I was lining my wheelchair and myself up to the bar.  He came around to the other side of the bar as I slid it off it off of my head.  It was the PURPLE one!!!  He found it!  I wish I could say that I had a better showing because I had the PURPLE one but that wasn’t the case.  I only got 3 HARD FOUGHT FOR stands but I have learned that SOMETHING is better than NOTHING.  Little by little… Phil fist bumped me and shook my fist and yelled, “Joystick!” But I was too tired to fight it off.  Nick took me out to my car.  NOT a GREAT day to have MS but I’ve seen worse and I KNOW I will in the future but I did what I could.

My hands were hurting on Sunday.  It wasn’t the same pain that I have had before, it was a dull aching pain.  I noticed that the functionality of my hands remained compromised yesterday at work.  I am in the “end of the year” process of tying up loose ends for the school year.  The students have been done for the year but not yet for the teachers.  Doing this includes typing up some stuff.  I am NOT a very good typist by any means (I call myself a :”typer” because I am NOT good enough to be a “typist”) but I noticed that I was slower and it did NOT feel like “normal” typing.  I brushed these thoughts aside and just continued working.

It wasn’t until I was on my way to Barwis and the rain started coming down harder that I REALLY realized that my hands hurt.  Really, my hands felt kind of numb and it was my wrists that were hurting.  I would get searing pains in them periodically.  It was not knives being dragged up and down them as I had experienced before but it was a sharp pain that did not last very long.  The pain remained in my wrists and did not move up or down my forearms.  I immediately thought of Parker.  I was at Barwis and I was going to try to work through it for now.

Sean was with me and Phil took me to the table to get stretched.  My legs were obviously tight because it was raining.  Phil stretched me EXTREMELY WELL (it kind of hurt – that’s how I know it was EXTREMELY WELL).  I asked him if I was just going to get stretched yesterday and he said no and that we would go over to the bar in a little while.

Phil had Sean bring the orange half popcorn ball thing over.  It STILL wasn’t purple!!!  He positioned the half popcorn ball and had me stand.  I TRIED!!!  I ALMOST had a grip of the bar with my left hand coming off of my wheelchair’s armrest but I missed it and collapsed back into my chair.  Both Sean and Phil made that “OHHH!” exclamation as if they were watching an intense  football game and I dropped a pass or something.  It’s okay, “first is the worst” I told myself.  I was able to get up the next time mostly with Phil’s help.  I told him that it was “all him” and he disagreed.  Good form, Phil!  Even though we BOTH knew the extent of his help, he wouldn’t take credit.  Sean said, “Mom, you wouldn’t have made that face if you weren’t trying!” Then Sean made the face I was supposedly making.  I’m not sure that it looked like THAT though!

I had 2 stands under my belt. Phil told me that we’d do one more and then we would be done.  I told my wrists and legs it a VERY low voice (so NO ONE would hear), “the faster you grab that bar and stand, the faster we can be done.”  Phil told me that it was the BEST stand by far when I sat down again.  3 stands.  They weren’t the BEST stands I’ve ever done but…

My hands STILL felt NOT NORMAL this morning.  I knew I would call Parker from work (I since have; my appoinment is on Monday (6.30) before Barwis) and this morning, before I got in the shower, I channeled Hazel from The Fault in Our Stars and told my wrists to, “Get your sh** together!”  Man!, this journey “ain’t NO joke!” but it IS going to be worth it!!!  I’m CERTAIN of it!!!

I arrived early to Barwis so I slept in the car for a while.  Eric told me that he waved to me twice and I didn’t wave back when I got in to the center.  I told him that I was sleeping.  It was raining  AGAIN yesterday and it was wiping me out!  I had been fighting with my body ALL DAY so far but I thought I was winning for the most part!  Now, I not only was tired but winning was A LOT more difficult.  Phil told me to go to the table.  I needed his help to get out of my chair and onto the table because my legs were EXTREMELY stiff.  Once on the table, I began winning again and I could sit on the table normally with my legs dangling.  Phil stretched me while I sat and we did manual leg curls.  Then he helped me get back into my chair and we went over to the Keiser machine.  He stopped and got a half popcorn ball.  It wasn’t purple.  It was orange.  I told him that it wasn’t purple.  He said the purple one was not there and I told him that is his job to find it.  Yesterday, we would have to use the orange one.  He positioned the half popcorn ball and told me to stand.

Standing up from my chair is PRETTY difficult.  I stand with my hands on the arm rests of my wheelchair and then need to grab the bar that is a little higher than shoulder height on me.  Once I grab the bar, I have to fight to stand.  I always start with my left hand.  That’s my lead hand.  Once I grab it.  I always say, “Yeah!” Then when I can get my right hand onto the bar, I say, “Yeah!” again.  Then the fight is on!  Phil tells me to push and is properly positioning my legs.  Once I “click” he tells me to hold it.  That first stand I held it for a LONG while!  Until my legs started to shake.  Once I sat back in my chair, I asked Phil how long I stood, he shook his head and said that it was maybe a minute.  We fist bumped but then he grabbed my fist and yelled, “joystick!”  We did 2 more stands, “Yeah!  Yeah!…Click.  I stood FOREVER it seemed each of those times!  When I sat back in my chair the second time, I asked Phil how long I stood and he said, “an hour.”  I thought so!

My time was over and Phil took me to my car.  I gave it the college try 3 times and I was spent.  Phil put me in my car and once my wheelchair was stowed we fist bump once more.  Phil grabbed my fist and yelled, ‘joystick!” again, told me to have a good weekend, and shut my door.  Grrr!  But it felt REALLY nice to “click” 3 times yesterday!!!  Hopefully, it will happen MORE often now!!!  Now, I thought *BINK*S were ABSOLUTELY adorable but “click”s are SO much BETTER!!!  They FEEL a lot better!!!  Closer to standing for real…  If I stand for real, then walking CAN’T be THAT far off!!!  Right?!

Nick and another intern came out right away to get me into Barwis.  Phil and I went over to the table because an athlete was using the bar at the Keiser machine for squats.  As Phil was stretching me, I realized that I had forgotten to put my chapstick on – ALL DAY! So I was chapstickless yesterday.

When the Keiser machine was available, we headed there and Phil stretched me a little bit more.  It was time to stand.  I was up after a few tries with a fight but I got up all the way.  Phil helped to position me and I don’t know how long I stood (felt like a year) but I stood until Phil told me to sit.  I think we did that a couple of times when Phil got up and got a popcorn ball thing.  He put it on my head as he walked around to the other side.  I pulled it off of my head and saw that it was PURPLE.  YAY!  We stood 4 more times and this particular set of stands was the BEST that I have ever done!  They FELT the BEST.  I told Phil that it was standing like this that translated to an easier time walking.  Then, I told him that walking on Friday will be easier.

Then Phil dropped a bomb on me and told me that we might not walk on Friday.  We might walk on Wednesday.  What?!  How am I going to have consistent blog posts if we change out the days?! Phil told me that he didn’t work around blog posts.  Then he reminded me that it’s his world.  Well, okay.  Eventually, EVERYDAY will be a walking day so that’s cool.  Whatevs.

Phil took me out to my car.  It was a WARM day at Barwis.  Phil may have glistened but I was sweating nastily!  After 3 tries, he put me into my car.  I asked about the “Walking Wednesday” vs. “Walking Friday” one more time and Phil asked me if I keep my crutches in the trunk (I do) and said that if he feels like getting them on Wednesday, he will.  He finished stowing my wheelchair in the chairtopper.  I felt good about the day’s performance.  Despite the warmth, it was solid.  I put my fist out to him to which he grabbed it, shook it, yelled, “Joystick,” and shut my car door.  Oh, it’s like THAT!  It’s ON like Donkey Kong!!!

I was excited that on the whole ride to Barwis Methods my legs did not tighten up once!  They tightened up as soon as I arrived to Barwis.  I tried to get out of my car myself and I had time so I sat in my car with my legs outside of it and my chair in front of me.  Dan came over and asked if I needed any help.  It took him up on it but first warned him that I’m hefty.  He told me that he didn’t care how much I weigh and that he’s strong.  He put me in my chair.  I told him that I could do the rest and he should get back in there to train the athletes.  He laughed a bit as he went back inside.

I wheeled into the center and Lexie came up to me and asked if I was Jen.  (I’m kind of hard to mistake in an athletic facility).  We have spoken (Lexie and I) on the phone and through email so it was nice to put a face with the voice.  She had Phil take our picture.  Since Phil is my official Barwis Methods photog, it seemed fitting.

Phil stretched me out at the Keiser machine (my legs were TIGHT) and then he had a student athlete get one of the half popcorn ball things and bring it over because we were going to stand.  He called it by its real name but I missed what he said so I am just going to refer to it as the half popcorn ball.  I told him to have her get purple and he just kind of shrugged and shook his head.  She brought back a purple one.  SCORE!  I smiled and pumped my fist.  (Purple is my FAVORITE color).  I stood and fought for it the entire way up to a *BINK* and Phil had me do a squat and I fought to stand back up the entire way with his encouragement.  I think we did it one more time before he told me to go to the turf.

Once on the turf, Lauren and Kenny helped us.  Lauren to grab my right arm and Kenny to push my chair behind us.  I got nothing on my first two downs and I was a bit discouraged.  Phil stretched my legs and we were going to try again. For my 3rd down, I got 12 yards.  I asked Phil if we were counting that as my 3rd down or my first down?  He replied after he looked at the clock on his phone something along the lines of., “We’ll see,” or, “Maybe.”  I guess we’re still in “Phil’s World” but for my next down, I got 10 yards.  I was definitely slowing down because I was getting tired so for what would be my last down, I got 7 more yards.  I got a total of 29 yards yesterday.  I guess we’re REALLY in “Phil’s World” because I get 4 downs both at Barwis AND in the NFL!

i told Phil as he pushed me back to the chairs that was the BEST walking I’ve done.  It felt the BEST.  My right foot was the “good foot” this time and steps with my right foot felt sturdy and sure.  Steps with my left foot felt less sure but still stronger than my right foot is normally.  He was glad to hear it and told me that Lauren was going to have to take me out because he had a 6 o’clock appointment.  Lauren carried my crutches out and we talked as we put everything into the car.  As I got ready and positioned myself to “Stand. Grab. Turn. Sit.” (The process that Phil tells me to get in my car).  As I told Lauren the process and what I was going to do, I see Phil walk out of the door.  He picked me up, put me in my car, and walked back into Barwis.  Lauren helped me get my chair stowed away and put my feet in the car.  29 yards today; I guess I can dig this “Walking Friday” thing!

TOTAL YARDAGE = 376 yards and 2 steps.

I think I smell a #DaisyandPhil #3 pic at 400 yards.  Phil doesn’t think so.