Author: Jen Rios

I saw my Neurologist before I went to work on Friday.  I couldn’t feel the vibrating from his tuning fork on either of my knees this time.  I got more bad news with how I should handle the increased spasticity in my legs.  I was frustrated and sad.  I went to work and afterward, driving to Barwis some of that frustration came out with some tears while listening to some good Gavin tunes.  I got out of the car and into Barwis on my own and tried to shake it off.  This was just stinky!!!

Nick pushed me over to the blue table and lifted my right leg while I sat in my chair and said that I felt tight.  I told him that I was mad and told him about my disappointing neurology appointment.  Nick stretched my legs REALLY good.  It hurt so good that I had to grunt and groan to get through it.  The PNF stretches I completed while I was laying on my stomach were VERY difficult so I grunted through it to help out.

Madison came over and told me that every time she hears me being stretched, it sounds like I’m dying.  I laughed after I caught my breath and told her that hearing that made me make a direct correlation with my students.  6th graders at my school believe that screaming makes them better Dodgeball players.  Subsequently, they scream for the ENTIRE P.E class for “Dodgeball Friday.”  It’s kind of cute to hear these kids screaming like banshees except when you teach reading to below level readers in the classroom right off the place where all of the screaming is taking place like I do.

Nick helped me sit up and I sat up and balanced for a bit on the blue table.  I’d been thinking about my appointment ALL DAY and thought about my legs being SO STIFF because I was not at Barwis this past Wednesday.  I thought about being in a slump right now.  I told him that my walking is on “pause” right now.  My legs hurt as I drove home but I KNOW it’s for the best in the long run.  So, they hurt so good.

I didn’t go work Monday.  My body reacted crazily to the weekend full of rain this past weekend.  I was faced with decisions having to be made because of my changing abilities due to MS.  MS sucks!!!  It was almost time to go to Barwis and I was quiet.  I get into my car and wanted to hear this Gavin DeGraw song so at every stoplight before I get to the freeway, I grabbed some CDs from the compartment in the center console of my car and searched for the correct Gavin DeGraw CD.  A couple of summers ago (right when I started working at Barwis) I went to a The Script, Gavin De Graw, Train concert with my cousin, Shannon.  In order to prepare, I stocked my car FULL of ALL of their CDs.  The CDs are STILL in my car.  I couldn’t remember which CD the song was on so I just put in whichever Gavin DeGraw CD I pulled out.  The song was on the 3rd CD I pulled out and listened to.  Such GREAT songs on ALL of those CDs!!!

The song is pretty mellow but I wanted to hear it.  I played it A LOT when Phil left because I dug the line, “You don’t have look back; but if you ever do, you know where I’m at” because I am a “lifer” at Barwis, I’m there – at the Barwis Methods in Plymouth.  I got out of my car on my own and pushed myself to the chairs because the roll-down door was open.  Nick came to get me and kneaded my calves while I sat in my chair.  He said my legs were pretty tight.  I knew it!  I was pretty stressed.  When I got on the table, he stretched me like Mike used to like I’m sitting like a man.  Then he had me lay on my stomach.  Heather came by and heard me grunting.  She asked if it hurt and I could just say with eyes closed and through  gritted teeth, “Hurts so good!”

Nick helped me into my car easily and saw all the CDs on the passenger’s seat of my car.  He asked if I was a CD person as well.  I nodded and smiled.  We talked about preferring CDs to digital downloads.   I called my Mom from the parking lot because she had my son.  She told me that she heard something in my voice and asked how the stretch was.  It was good but there WAS something in my voice.  I hung up with her quickly because I didn’t know what it was and I didn’t want to cry.  I pulled out of the parking lot and had the song playing continuously in my car on my way home.  I thought about the things I’m dealing with having MS and a single tear rolled down my right cheek.  As the song started again, I thought – maybe I just miss Mike.

Nick helped me out of my car when I got to Barwis on Friday.  Everyone was sleeveless but I did not partake in it.  I explained my broken chair topper fiasco reason for why I wasn’t there on Wednesday and he kneaded my calves REALLY hard as I sat in my chair.  I told Nick about my TERRIBLE Memorial Day weekend which probably was contributing to my tight calves.  He helped me onto the blue table and very methodically stretched my legs out slowly which made them VERY slowly loosen up.

As I laid on the table, I closed my eyes.  I began to feel tired.  Dan came over and hovered over me as my eyes were closed.  I got that feeling that someone was close to me so I opened my eyes to see Dan leaning over me.  I got a bit startled and smiled and he asked where I was.  I told him the abridged version and explained how I told Nick all about it.  As my time neared its end, I asked Nick how my legs felt even though I could feel that they were A LOT looser than when I came.  He slowly nodded and said, “Sulid.”  He said it like that.  He ALWAYS says it like that.  I take it to mean “good.”  I asked him why he says it like that but he didn’t give me an answer.

I sat up on the table and balanced for a little while and Nick asked if my legs felt like Jell-O.  They did but Jell-O felt A LOT better than they WERE feeling!  He helped me into the car and we wished each other a good weekend.  I hoped that this good feeling I had would stay with me but it didn’t.  It rained all weekend.  I handled Saturday alright but just couldn’t take Sunday too.  Sunday morning, a NEW “accident” began.  I’ll NEVER get used to this feeling but just have to endure it.

My chair topper had a problem on Monday; subsequently, the car was undrivable because the topper wouldn’t stay closed.  My brother, Steve drove me to work and on Tuesday, and my brother, Jimmy secured the chair topper closed Tuesday evening so my Mom could drop the car off that night for the topper to be serviced.  It was ready Wednesday afternoon.  My brother, Steve drove me to work on Wednesday as well (he also works in Southwest Detroit) and my Mom picked me up at the end of the school day.  She drove me to pick up my car.   Driving from Southwest Detroit to Wayne to get my car took some time.

I had called Elle to tell her what was going on and that I might not make it.  I didn’t SERIOUSLY think I wasn’t going to make it, just maybe be a little late.  After I got my car, it was obvious that I wasn’t going to make my 5 o’clock training time at Barwis and IT WAS “Wacky Sock Wednesday”!!!

When I came to the realization that I wouldn’t make it (I hadn’t been there since last Friday!), I did what I ALWAYS do in this type of situation… I cried… A LOT!

Friday at Barwis (which was ANOTHER Cut-Off Friday (which I abstained from because I was cold (I even kept my zippie on))), Nick stretched me out and had me do TONS of PNF stretches because of the long weekend.  Now, I say it was TONS because that is what it felt like to me.  I was SO tired when I left there but I didn’t do much from an able-bodied person’s standpoint but I’m not an able-bodied person so I did a ton.  Pushing my leg down toward the table as Nick has my knee up as I’m laying on my back 5 times for each leg seems like a TON for me!  I probably did 6 or 8 sets total (I lost track as I started getting tired) but I felt pretty accomplished.  I had told Nick that Mike had already broke my lap before but when I woke up Saturday morning, Nick broke it differently.

I didn’t feel good on Saturday.  I still went to church Saturday evening and dropped my son to my nephew’s for a while.  When my brother dropped my son off back home, he stopped in for a bit.  He sat at my dining room table and as I smiled at him, he looked at me and said, “You look bad!”  I kind of shrugged and laughed a little bit (leave it to my brother to put it bluntly!). I took a breath and told him that there was a civil war going on in my body and that my immune system is kicking my nervous system’s butt and sometimes it shows on my face.  I went on to explain this elaborate story where I have personified the leader of my nervous system and the mean General who leads my immune system.  I REALLY should write this down!  I talked to my Mom after that and I was discouraged.  She told me not to give up and to think that if I wasn’t working so hard at Barwis, I’d be a gnarled mess!  She reminded me of the gnarled messes that I have been before.  She was right.  It’s just a bad spot.

As I awoke Sunday, my lap didn’t feel AS broken but I didn’t feel much better.  My brother came by and picked up my son for a BBQ they were having at his house.  I abstained from going – it was too warm out for me.  I  thought about what Jesse told me so long ago now.  It IS “an accident everyday” and the accident this time REALLY has knocked me on my butt!!!  I didn’t feel much better on Monday either; I haven’t been sleeping too well and was grateful that I didn’t have to be at work.  I hoped I would feel better on Tuesday.  I thought about what my Mom said to me and I didn’t know how close I am to walking – but I know I am WAY far from the gnarled mess I used to be!

Madison and Nick both met me by my car as I was transferring to my chair.  I told them that I could do it on my own and would WOW them with my ability.  After they both watched me successfully do it, I pulled my pant legs up to show them my Wacky Socks with a smile.  Nick pushed me inside and began kneading my calves as I sat in my chair.  He loosened my legs up enough for me to stand and he guided me unto the table.  He proceeded to stretch my legs out so they felt not as tight and more relaxed.  He told me that my legs felt better than they did on Monday and I agreed.  Monday was an EXTREMELY hard day for me and I was glad that I felt better.  Well, it WAS “Positivity Wednesday” as Nick called it and I was all for it.  He had me flip over and lay on my stomach.

He stretched my legs back one at a time and my heels touched my butt!!!  Now, I KNOW my butt is big but it still was an accomplishment to get that much of a stretch!  I was happy!  Heather (an intern) came over to talk with Nick.  I found out that they both went to Central and here I was wearing my “Standing Shirt” from Western.  I joked about them being from my rival school but assured both of them that I was only a 1/4 Bronco (I transferred to U of M-Dearborn after my diagnosis to be closer to my Neurologist).  As I laid on my stomach, Nick had me offer resistance as he pulled my legs down (some PNF stretching).  This was very difficult for me and was only made easier by my loud grunting as I tried to keep my legs up.  Nick was pleased with my little bit of resistance and he seemed positive about my progress (it WAS “Positivity Wednesday”).  After this, he had me sit up and balance sitting straight up with my feet on the floor.  I was able to do it for over 2 minutes.  I told him it was from all of the crunches I’ve been doing since Jesse and Adam.  It’s not giving me a flat stomach (I think childbirth has A LOT to do with that) but it allowed me to engage my core.  That engagement is something I do NOT get by being in a wheelchair all of the time. Megan came by and we took a picture of our socks because it was “Wacky Sock Wednesday” #17:

Nick put me in my car easily and I heard Mike’s song AGAIN as I pulled away (its popular right now!).  Once I was on the freeway, “Walk On” came on.  It is one of my FAVE U2 songs! I haven’t heard that song it SO LONG!!!  I turned it up to “jam mode” and belted it out at the top of my lungs.  I wondered if tears would come because I felt such strong emotion yelling these words.  They didn’t but I was okay if they did.  I’ve been practically LIVING in my “Standing Shirt” at Barwis lately and as I drove home; I felt the promise of walking again.  It was a feeling I haven’t felt in a LONG while and having it felt REALLY good!

I had a rough weekend and had an early staff meeting Monday morning.  A colleague had died in a car accident.  We were being briefed on how to break the news to the students because although he was a high school teacher, (across the parking lot from my school) he was a volleyball coach at the middle school.  As I drove in to work, I was thankful that I didn’t personally know him.  I was about 2 minutes from my school when I burst into tears.  My Dad’s birthday is next week and I can’t deal very well with death anymore.  I always thought that it was “dramatic” when people cried when they really didn’t know the person who died.  Now, I know that it is not.  It took my first hour prep for me to get it together.  About halfway through my 2nd hour is when Pam from Barwis called me.  I recognized the number so I answered it.  I didn’t know Pam, but I knew to answer my phone when Barwis called.

My students were listening to an audiobook and the CD player was loud because my classroom is small.  I asked her to repeat herself half because I couldn’t hear her and half because I was in disbelief.  Mike wasn’t going to be there anymore because he had gone to the Canton facility.  He wouldn’t be my trainer anymore.  She said she wasn’t sure who was going to train me but asked if I was still going to be there at 5.  I thought back to the first Fall I was at Barwis.  It was Jesse’s last day, before I started working with Adam, he told me that he wasn’t big on long goodbyes but told me that he’d know where to find me because I would be a “Lifer” at Barwis.  I had agreed with him with a laugh.  Mike Barwis told me that on my first day.   So, even though Pam didn’t know who was going to train me, I’d be there.  I told her that I’d be there.

I ran into a colleague in the teacher’s lounge and she noticed something was wrong with me.  She had noticed me coming in to the staff meeting in the morning as well. I told her that Mike left and I didn’t know who my trainer was going to be.  Tears welled in my eyes and I kind of shook my head and defiantly told her that I will NOT cry over this!  As she left the teacher’s lounge, I called out, “Dumped again!” to which she laughed.  I think that laugh helped me to keep it together a bit longer.  I held it together until the end of fourth hour.  I called the office and told them simply that I needed to go home while I put my sunglasses on.  I left directions for whomever was covering my last two classes and left to compose myself before I went to Barwis.

I pulled up to Barwis I sighed a bit.  I slowly began to transfer but was a little unsure of myself because my legs felt really tight so I didn’t know if I could straighten them up enough to stand to get into my wheelchair.  As I was sitting there with my legs out of my car contemplating a transfer, Nick came out to help me.  I’ve known Nick a LONG time.  He interned at Barwis last summer and he came back in late fall.  As I got fully in my chair, I asked who was going to train me.  He looked at me and smiled and said, “Me.”  I let out a sigh of relief!  I know him!  He already is familiar with my case.  He has seen me walking with my crutches and doing squats at the squat machine.

Nick stretched me out as I told him that I was pretty tight and told him how Mike worked with me.  Nick stretched me out well and knew the stretches I needed to loosen my legs up.  I told him that Mike and I did a little bit of PNF stretching and how Mike would quiz me on what PNF stood for.  Proprioreceptive Neuromuscular and we said “Facilitation” together.  I laughed and I was comfortable with Nick.   He even commented on how Deeds said “four” too!  Connor, Dan, Deeds, and Megan all came over to see how I was working with Nick.  I told Connor that it was okay because I knew Nick “bearded and unbearded.”  Nick laughed and said I was one of the few people as Barwis who know that because I have been there so long.  What can I say?  I’m a “Lifer.”

Nick took me outside and helped into my car. He got my legs in easily and I told him that Mike stunk at it and Adam used to say, “Bend-bend-bend-bend-bend.”  Nick EVEN remembered how to stow my chair and went back inside and i started my car just as Mike’s, I mean our song came on and my heart got a tinge of sadness for a second and I thought about getting a song for Nick as I drove away…  We’ll see.

I pulled up to Barwis and Deeds was in the parking lot barbecuing in a tank top.  As I pulled into my spot and turned the car off, Mike showed up, also sleeveless.  I transferred and Mike pushed me inside.  Mike Morfitt (also sleeveless) was working with a young client named Brooklyn so Mike and I went to the white table.  I saw Megan who was also sleeveless and she pulled at my sleeves.  It was ‘Wear Purple Day” at work in support of a colleague who has Lupus.  Mike told me that I had enough sleeves for all of them.  Just then, Connor came by and gave him a burger from the grill outside.

It was a bit warm but going sleeveless makes me so nervous.  Having MS, I am both heat and cold intolerant so I don’t want to get chilled to the bone (which happens EVERY summer when there is the slightest breeze).  But, further in my defense, I didn’t know about it because I can completely dig a themed day.  Mike stretched my legs out on the white table.  I told him that I thought he broke my lap again.  Although, when he had me lay on my stomach, the stretch felt easier.  I made the mistake of telling Mike this so he made it NOT easy.  He immediately pushed my heel further which got me to groan in pain.  But, it’s a GOOD pain… At least it will be.

My legs were Jell-O so Mike put me back into my chair, wheeled me out, and put me into my car.  We talked of the upcoming Memorial Day weekend, and he wished me a good weekend and closed my car door.  When I picked Sean up from his last track practice, our (Mike and my) song came on.  I’ve been hearing that song A LOT.

Connor and Don were coming out of Barwis just as I was going to transfer from my car to my chair.  I’ve kind of been doubting myself lately so I was hesitant to transfer.  Connor walked over and spotted me as I transferred just in case.  He pushed me in and let me go after he gave me a good push onto the turf.  I called a “Thank you” over my shoulder and pushed myself to by the chairs. Mike was working with Alex on the blue table and as Mike Rhoades came to get me, he asked what we were going to do.  I wasn’t sure either but he pushed me over and I asked Mike if we could use the table.  He and Alex moved to the white table and I stood as Mike guided me onto the blue table.

Mike knuckled and kneaded me and when I asked how I felt, he said, “Tight.”  I kind of nodded and shrugged and told him that I felt it.  I’ve been feeling a bit wonky as of late and it was apparent in my legs.  DUH!  I shook my head and tried to relax.  I told him that I’ve heard his song a lot.  Now, Jesse has a song and Phil has a song but Mike doesn’t.  Not yet.  He told me a little bit ago that he was liking this song and he pulled it up on his phone.  It was Walk the Moon, “Shut-up and Dance.”  This song made my blog awhile ago (I only listen to XM radio so I’ve heard it a lot before it hits mainstream FM).  I’ve heard it a lot since he told me that he liked it.  He said it was, “Pop-y” but he liked it.  Since I’ve heard it so much, it has become his song.  He told me, “If it’s “our song,” he didn’t think he would listen to it any more.”  I told him that I said it was HIS song but since he said it was OUR song, I liked how that sounded even more and decided that it was OUR song and laughed.

Mike stretched my legs out SO WELL, it kind of hurt but it “has to hurt if it’s to heal.”  As he was stretching me like I was sitting like a man, I snapped this pic:

It was “Wacky Sock Wednesday” #16.  He had Mike the intern hold my knee down as he stretched the other leg.  Mike had me try knee raises but it wasn’t happening no matter how much “Barwis Magic” he used.  Mike the Intern had gone to do other work as we did this, Mike and Alex had come back over to share the blue table because Megan was working on the white table with Garret.  Mike Rhoades called Mike the Intern to help us with some stands.  As Mike Rhoades was explaining the process to Mike the Intern, I kept exclaiming, “It’s a ‘Jen Sandwich’ with Mike bread!” and laughing.  I’m not sure that Mike and Mike were AS amused as I was but it was okay because I was amused enough for all three of us!   I said it a bunch more times and kept laughing.  I stood 3 times, well TRIED to stand 3 times with LOTS of help from “the Mikes.”  I think I did best on my first attempt and told Megan, “Look at me standing…ish.”  She laughed but it’s progressive.

i was spent so Mike put me back into my chair and took me outside.  He is getting A LOT better at getting my feet into the car but I still long for the day it won’t be necessary.  We said ‘bye’ and he shut my door.  As he went back inside, I started my car and heard his song – I mean our song as I drove away.