Author: Jen Rios

When I got into Barwis yesterday, Phil was working with another client when he told me to pull the table to right in front of the TV.  My appointment was moved to 7:00 and the Lions game was starting at 7:10.  I told him, “Okay, love knows no bounds!  Anything for Matty!”  I think Phil thought I was joking, but I started pushing the table over.  I pushed a little and it barely moved so I rethought my strategy.  I rolled around the table so I was in a position to pull the end of the table.

I pulled and that was a little bit easier.  Phil called over to me that I had 20 minutes and I responded, “Little by little, a little becomes a lot.”  I pulled the table about 10 yards on a diagonal when Phil came over and folded and picked the table up.  I followed him and was excited because they started showing footage of the players getting ready.

Before I even realized it, I saw Matthew Stafford and yelled out, “I LOVE YOU, MATTY!”  I only yell that at my TV when I am home watching the game.  My son tells me that I’m weird EVERY time I say it but I don’t care.  I’ve had a thing for #9 since he came to Detroit.  Most people make fun of me but I REALLY don’t care!

Phil put me on the table and began to stretch me out and we both could see the TV.  I told him that Matty was going to throw 2 TDs in the first quarter.  The first touchdown was Calvin Johnson running it in and I felt like I was at home because I threw my arms up and, “Woo-Hooed” at the top of my lungs.  I have talked about seeing a game at BDub’s often with Mr. Curl.  Sean and I ended up at BDub’s for a preseason game but it didn’t feel right.  I like my TV better!  I wasn’t comfortable to yell at the TV there though.

I was comfortable enough at Barwis!  I don’t know how many times I yelled my love for Stafford but it was a lot.  Phil said he would NEVER go to a game with me.  I think it would be different though.  For instance, I will NEVER call Stafford “Matty” to his face and I think I would be a little more low-key but you never know.  I told Phil that he was just jealous and told him that I will yell, “I love you, Phil!” the next time I come to Barwis.  He laughed.  I don’t think he believes that I will but I WILL because I’m comfortable there.

We really couldn’t see the TV that well based on how far from the TV we were.  Phil said that if I didn’t mind being stretched in my chair, we could go into the break room because there was a bigger TV in there.   Well, YEAH!!!  We went to the break room and Matty threw his touchdown pass to Johnson.  I yelled and threw my arms up!  I was SO excited!!!  We were up 14-0.  Phil kept telling me to relax my legs but I just couldn’t!

My time was up and Phil took me to my car.  I tried grabbing his fist but he grabbed my hand instead, shook it, and yelled, “Joystick!” I felt a bit looser and listened to the end of the second quarter on the way home.  The Lions won so for one brief, shining moment we are on top of both the Packers AND the Bears in the NFC North!

Phil came out to get me from my car yesterday.  It was REALLY warm!  It was SO warm that it had officially graduated from just being warm to being HOT.   My Mom has told me that it is not ladylike to say “hot” but rather, I should say “warm.”  But yesterday, it was just ridiculous so it was HOT.  I get to the chairs where Phil was sitting and I emphatically say, “It’s HOT!!!”  Phil looks at me and says, “Thank you Weather Rock Rios.”  He stretched me at the chairs and told me that they just got a new stander and that I was going to try it out.  Periodically, I would make the statement that it was hot to which Phil would respond by calling me a weather rock.

Then we moved over to the plyo boxes for more stretching.  I remained sitting in my chair and  kept making the statement of it being hot.  Phil sat on the box and kept calling me a weather rock.  He looked at me and told me that I looked like I was drunk.  I told him that he doesn’t know what I look like when I’m drunk!  I don’t drink anymore.  My body can’t handle it.  Retrospectively, I realize that that comment was the beginning of my demise due to the heat.

Phil pushed me over to the new stander.  I asked him what it was called.  It’s also called the Easy Stand Evolv but it has a glider option so it looks different.  As he put me into the stander and strapped my feet in, my hands went numb.  He cranked the stander up and almost immediately, I knew that I liked the other one better.

He he cranked it up all the way and told me to use the handles to glide.  Yeah!  That WASNT happening!  I tried to push the handles and my feet moved the slightest bit.  Yeah. No!  I stood for three minutes and then rested.  My speech started to slur a bit.  I didn’t speak as much as I stood in the stander.  Phil went to get me a towel because I was way past “glistening” and was sweating profusely.  I stood 4 times for 3 minutes each time for a total of 12 minutes.  Dan came over and talked to me for a little and it was VERY obvious to me that my speech had worsened.  It sounded CRAZY in my head!!!  Phil took me out of the stander and put me into my chair.

 He wheeled me out to my car and put me in.  I put my fist out after he stowed my chair.  He just grabbed it, shook it, yelled, “Joystick!,” told me to watch some good football this weekend, and shut my door.  I had trouble turning the key in my ignition as he stowed my chair.  I blasted my air even higher when he shut my door.  I sat there and willed my hands to NOT be numb.  It didn’t work.  I was just going to have to wait this one out.  I drive with my hands so them being numb is NOT an option for me and driving.

After a bit, I was able to call my Mom and ask about my son.  I told her that I would be awhile because I needed to cool down before I drove.  She asked me how my time at Barwis was and I just replied, “It was hard” and began to cry.  I cried because I was frustrated, not because it was too difficult.  The temperature gauge on my dashboard read 93 degrees and had to sit in my car with my air blasting for 30 minutes before my hands felt normal enough to drive.  MS is a REALLY, REALLY mean disease and it only gets MORE frustrating as time goes by.

I was a bit tired when I headed to Barwis.  My right hand had gone numb toward the end of work so Mr. Curl helped me gather my things and he got me into my car.  I had to battle construction on my way so I ended up being a little late once I arrived to Barwis.  Phil helped me get out of my car and he stretched my legs a bit at the chairs.  My legs felt SUPER tight and stretching me was difficult for both of us I think.  It didn’t feel so good on my part and my body was REALLY resisting the stretch for him.

He told me to go to the table after I did a few manual leg curls.  I knew it.  I wasn’t walking or standing today.  The stretch was difficult enough!  Once on the table, I laid on my back and my legs felt gnarled up.  Phil stretched and stretched me but my legs weren’t feeling any more relaxed.  He left my legs alone for a minute and asked me how I felt.  I told him that it hurt.  He replied, “Hurts so good.”  I told him that my Dad used to say that and that, “No, it hurts SO bad(ly) – (I hold an English degree so I SHOULD use adverbs correctly but I said “bad” instead of “badly” because it was opposed to “good” and not “goodly” but I digress…)

Phil started stretching me some more and eventually, my legs started to feel a little bit better.  It was only a little bit better but I have learned that a little bit is better than nothing.  “Little by little, a little becomes a lot” is SO true!!!  Waiting stinks so badly, but what else am I going to do?!  It seems that the longer I have MS, the more I am faced with being effected by outside forces.  I CAN’T handle being stressed out as well as I used to (not like I EVER handled it very well but…)  I think it interesting that I can’t (it’s now CAN’T and not DON’T) handle when I run late, or am faced with construction, or properly function in the heat.  And by “interesting” I mean “stinks!”  It’s frustrating but this is how it is now.

Phil took me out to my car and when I extended my fist, he just grabbed it, shook it, and yelled, “Joystick!”  He told me that I did a good job as he closed my door.  I thought about that as I drove away.  My legs DID feel a little bit better even though the stretch hurt SO badly.  Maybe I can sum up yesterday at Barwis as “It hurt so good” after all because the end result was better than it was: so it was “good.”  Hmmm?

I get to Barwis a bit early and am transferring from my car to my wheelchair when my wheelchair shifts (the brakes are loosening up because I need a new one).  I end up sitting on the ground outside of my car, I tried to get up but it was impossible.  I texted Phil to come get me and Eric came out and picked me up.  I was embarrassed and frustrated but Eric was cool and laughed.  Eric has a REALLY good laugh!  As I sat on the ground, I could feel my legs tightening up.  That stinks!  That fact is going to translate to NOT a good showing.  I just knew it!!!

Since I was early, I made a few phone calls and then decided to put my bag back into the car.  I wheeled outside and tried to snap closed the flap before I put the bag on the passenger’s side seat.  I was having trouble snapping my bag but I know that if I DON’T snap it closed before tossing it into my car, everything will spill out.  I don’t know if it was the heat or my frustration but my hands started to feel numb so that was compounding the difficulty I was having.  Then a shadow comes over me.  I look up and it’s Phil.  He asked if I wanted to start early because I was there.  I nodded still fumbling with my bag.  Phil asked what I was doing and leave it to my voice to betray me.  I told him shakily that I couldn’t button my bag.  He laughed and told me that I sounded like a six-year-old and asked if I wanted help.  I stopped fumbling with the bag and moved my hands.  Phil buttoned it with ease then I threw it into my car and we went over to the Keiser machine.  I think with my frustration and my hands feeling numb, I didn’t even thank Phil.  So, thanks Phil! ☺️

At the Keiser machine, he stretched me a bit while I sat in my wheelchair.  He told me to stand up.  I gave it the college try 4 or 5 times without standing fully to a *BINK.* He told me to go over to the table.  He was pushing me and I thought he still had my chair as I rolled down the ramp with my hands up.  He didn’t.  He had let my chair go close to the Keiser machine.   Good thing I didn’t fall out!

At the table Phil helped me out of my chair but not fully onto the table yet.  He stopped halfway so I was standing.  I kept falling forward into him but I would recover.  It didn’t feel normal but I kept trying to straighten up with my butt underneath me.  It felt wobbly and weird!  After some time, Phil picked me up all the way and put me on the table.  He had me do a few leg curls with my legs dangling over the side and the he swung me around so I was on my back.  He stretched my legs out there.  As he was stretching me and it hurt, I asked how he thought I was progressing as I started to glisten.  It’s hard for me to see the forest amid the trees at times so I wanted to get his take on this situation.  He nodded and frowned in what I assumed was approval and he told me that I was kinda tight.

he finished stretching me up and I sat up with my legs hanging over the side.  He told me, “let’s do hyper” and quickly pushed my shoulders down BEFORE I could get into first position in ballet.  I extended my arms and sat up when he let my shoulders go.  He took me out to my car and once my chair was stowed, he extended his fist and told me to have a nice long-weekend.  As I extended my fist, he grabbed it, shook it, yelled, “Joystick!” and told me to think about that all weekend as he shut my door and walked away.  I was tired but I smiled and shook my head as I drove away.

Phil stretched me at the Keiser machine and I attempted stands WITHOUT the half popcorn thing.  Phil’s fist in place of that would suffice.  I think I tried 2 or 3 times without standing fully to a *BINK.* Phil went to fill his cup with water and I told him to bring me some.  He left and I stared up at the bar.  My hand was still on it and my wheelchair was locked.  I thought, “I CAN do this!”  The worst thing that would happen would be that I would fall and then Phil would just have to pick me up off the floor.  It wouldn’t be the first time.  I grabbed the bar with my other hand and “pushed” more than I “pulled.”  I stood up fully even without Phil’s hand separating my knees for balance.

A little while after I stood, Phil walked through the door carrying 2 cups.  He looked at me and called me a bad word and we both began to laugh.  I held the stand for only a little bit longer and then I sat down.  He handed me a cup of water and asked, “why can’t you do that EVERY time?!”  Well, I think he knows the answer to that question better than I do.  I wish I could.  I’m waiting to. I’m working to.  It just doesn’t happen all the time… Yet.

I drank my water and then we headed to the plyo boxes.  He sat me on the block on the end and told me to put my arms out to my sides and he was going to push my shoulders down as I bent over and I would have to sit up on my own.  He had his hands on my shoulders ready to begin and rolled his eyes as I put my arms in front of me to start in first position.  He was in my way so he let go of my shoulders.  Hey – that is one-third of ALL of the ballet I know and you are ALWAYS supposed to start off in first position.  I think he pushed my shoulders down five times and it was DIFFICULT to recover.  Then he had me lean back and sit up from my head being on the wall behind me.  It wasn’t a full sit-up but I REALLY stunk at it.  He asked me if I stopped working on my abs.  Shamefully, I have.  When this past winter got TOO unbearable for my body, I couldn’t wake up to do them.  I have done them sporadically since the weather has gotten better but not 200 at a time.  I told him that I am STILL Jabba the Hutt and I had to grab his fingers at like the 8th one for help.

Phil took me out to my car and I got in mostly by myself.  We just gave each other five because I think Phil could tell how tired I was.  As he was closing my door, he said, “Nice abs.”  If I had a nickel for every time I heard that, I’d have a nickel.  Last night before I went to sleep, I did 200 crunches with my shoulders leaving the bed each time.  I texted Phil that I did them and that I could feel the burn. I will do them again tonight.  Looks like Princess Leia is late to the party but it’s better late than never and Jabba’s GOTTA go!

Phil helped me out of my car and stretched me at the table.  It was a long stretch.  He left and went to the storage closet and then came back to the table.  He had the harness in his hands and dropped it on my stomach and told me that we were going to get in it.  His eyes lit up and he smiled as he waited for my reaction.  It took me a moment to realize that he was going to re-harness me AGAIN! And when I finally realized that it was the harness on my stomach, I asked him, “Seriously?!”  He nodded in response and started slipping my legs into the holes.  It took me a moment to collect myself but I wasn’t going to object.  I knew Phil knew what he was doing and I wasn’t going to argue.

Was I disappointed?!  OF COURSE!!!  Did I want to cry?!  YES!!!  But, I held in all the disappointment and any tears and helped him get me into the harness without objection.  In my head, i made the assertion, “Do Your Worst!” over and over.  Phil brought the PURPLE half popcorn ball thing over and I asked if that was supposed to make things better.  He told me, “No” and set my feet.  Well, that was good, because PURPLE half popcorn ball thing or not, I STILL was harnessed… AGAIN!!!

I stood and did two sets of squats with 58% air assistance.  I liked it better when I could do free squats ON MY OWN!  But, right now, that wasn’t the case.  This fact is difficult for me to swallow but what other choice do I have?!  After the squats, Phil told me to go back to the table so he could stretch me some more.  He took me out to my car and I asked why I was SO tired and Phil said, “Because you stood and did squats.”

“But I really didn’t” is how I felt.  This morning as I was brushing my teeth, I was sitting up taller and my back muscles felt like they had been engaged because they were.  “Little by little, a little becomes a lot.”  I am REALLY being forced to believe this Tanzanian proverb and to apply it to my road to walking.  What other choice do I have?!