Author: Jen Rios

So, I have been thinking A LOT about “the ups and downs, the accidents, the highs and lows” and however having MS has been explained to me.  I don’t like this feeling of being on a rollercoaster.  I want to get off of this ride already.  I’ve been on it long enough.  It’s not fun anymore (if it ever WAS fun).  But, when I say I want to get off of this ride; I want to feel normal and NOT hurt – I only get a glimpse of this life, a life where I walk.  I told Phil that a few weeks ago.  I get these glimpses so I know it is possible but for now it is so fleeting; I lose it after a very short time.  It’s hard to remember what it feels like once it is gone.  But I know it was nice when I had it and it will be nice when I get it again.  I just have to wait for it.  In the meantime, I have to work the hardest I have ever worked.

I thought about all the glimpses I have already experienced: my first time standing with the Keiser machine, m y first time doing free squats, the first time I walked with my crutches at all, my first “stand-up hug” with Sean, my first 34 yard drive, standing at halftime of the Michigan State vs. Ohio State game, standing for halftime of the lions game, standing TALL, *BINK*ING, and my 23 yard drive.  I wish I could stand on my tip-toes to catch a longer glimpse of that goodness, but I can’t.  It’s like a sunset – once it’s gone, it’s gone.

But with all of those really good glimpses – there are also the NOT so good glimpses: the first time I cried because my legs were burning so badly after my REALLY good stretch, NO yards on a “Walking Wednesday,” a HUGE bruise on the back of my right thigh, being effected by th precipitation, feeling “gnarl-y,” having my legs “boing”ing, waiting for the bad patches to pass, getting re-harnessed.  Lucky for me, these glimpses are fleeting like the sunset as well; it just FEELS longer than a glimpse sometimes.

I’m experiencing one of those “bad patches” right now and I am NOT diggin’ it.  But, I’m trying to tell myself that it will be fleeting just like the sunset.

I was late to Barwis yesterday.  The snow was coming down and the roads were icy so traffic was extremely slow.  I DON’T hurry.  I only can move so fast.  I saw Brock getting into his car as I was wheeling in.  I commented on the snow and he agreed that it makes things slick.  I told him to be careful and he told me to have fun to which I replied, “Of course I will!  It’s “Walking Wednesday!”  I get in and Dusty, Dan, and Phil all gave me looks to which I replied, “I KNOW!”  I knew I was late, but it couldn’t be helped!  I quickly wiped my wheels off the best I could and Phil was waiting on the table.  I get stretched and it is AMAZING that my legs have started to listen to my brain and they move how I want them to in response to me thinking it.  I thought my legs’ responses would be a good sign for “Walking Wednesday.”

Before we headed to the Keiser machine, it was apparent that Phil wasn’t in a good mood.  Two other high school athletes commented that he wasn’t in a good mood as well.  I told him the ancient Chinese proverb, “If three people tell you are drunk, go home and lie down.”  I got that in a fortune cookie as a child and it took years for me to figure out what it meant.  Phil just laughed.  I decided that I wasn’t going to call him “Phil” when he is in a bad mood.  I will call him “Adam.”  So we get to the Keiser machine and my stands weren’t that impressive.  I felt my body resisting standing up and I didn’t like that very much.  Adam lowered the bar and I found it just as hard.  We were going to try walking anyway so I head onto the turf and get set.  Adam comes over with my crutches and Lindsay comes over to help us.  She told me that she dreamed about me walking and I walked far!  Ok.  Good.  ANOTHER good omen.  I put my crutches on my arms and attempt to stand.  “Attempt” is that operative word here because I couldn’t do it.  I tried 3 times to NO avail. The right side of my body would not allow me to bear any weight on it.  Adam told me to head back to the Keiser machine.

I am sitting in front of the bar going through today’s events in my head.  I wonder where Adam is and then I turn my head for a second to see him coming back from the equipment room with a harness in his hand.  I immediately turn my head back around and bite my lip.  I tell myself repeatedly NOT to cry.  Adam tells me that he knows I don’t like it and leans down to put my feet in the harness.  What else is there to do?!  I let him put my feet in the harness.  I tell myself that it’s for the best but it still doesn’t feel good!  Adam gets the harness fully on and he starts turning the air up.  He gets Larry (an intern) to help us and explains to him what he needs to do.  I KNOW what to do.  I cover my eyes a few times to make sure I don’t cry.  I was able to do full squats and Adam had me lift each leg to simulate walking.

That was it for today.  I am getting my things to leave and feel myself more subdued than any other day that I have been here.  Adam wheels me out as Dan stops us because I had left my crutches there.  He asked if I use them at home and I shook my head and then he asks why I don’t leave them there.  They will put them in the equipment room for me.  Duh!  That makes sense.  I left my crutches there.  Adam put me in the car and he says that I did well.  He points out that I did good squats and stands.  We fist bump.  I tell him that I will cry on my way home.  I sat there for a while and texted Mike, Jesse, and my friends to tell them about today.  Then I called my Mom and I DID cry a little.  Mike told me that “That’s okay!” and to “keep the faith” to which I replied, “I will.  This is hard.”  He told me that I will be fine and I replied, “really?”  He replied that “Yes, you will!!”

This STINKS!

I awoke to this thought:

RIGHT ON!!!  Yesterday DID kinda stink!  It’s okay.  Moving on…

I told Curl about my lack of “Walking Wednesday” this morning and he asked if it was weather related.  Maybe.  I told him that I was re-harnessed and he told me that I will have ups and downs.  He REALLY understands this stuff!  It’s ALMOST like I will NEVER call him a “gym” teacher again.  “ALMOST” is the operative word here. So this is a “down.” This is what it feels like.  I don’t like it.  I am quiet today also.

I get to Barwis and an intern helped me get into the building.  I get in a bit early and Brock and Chris were there.  It was REALLY nice to see them!!!  Chris left right away this time and Brock was sitting in the chairs against the mirrors.  He looks over to me and asks how my training is going.  I thought about that for a minute thinking of a million things I could say about the frustration and disappointment I have been feeling lately.  I look at him and just say, “this is hard!”  He looks back at me and nods and kind of shrugs and says, “yeah.”  He KNOWS how hard it is even MORE than me!  I think that I needed that empathetic look and nod from him to give me that extra boost I needed to persevere.  It was the “shot in the arm” I needed to make me feel a little bit better.  I have been thinking A LOT about how difficult it is and how necessary it is to persevere.  There is no other choice for me.  Not that I WOULD accept any other choice.

We talked about the snow and how BIG of an impediment it is for us!  I asked about his driving and life after a chair.  That to me is probably the BIGGEST thing!  I don’t know that I can really fathom NOT being in this chair.  He thinks for a moment and says, “there ARE things you need to re-think.”  Yeah.  I bet there are.  He had a dirty towel in his hand that he was going to throw into the bin and then he rethought it.  The bin was kind of far away.  I told him that I can take it there from him.  He stands and says that he can do it.  We talked a little more and he told me to have a good workout.  I put my hand out and told him that I could take the towel because the bin was in the opposite direction of the door.  He conceded and handed me the towel.

Phil stretched me out a bit as is the routine now.  When I was talking to Brock, I refered to him as “Adam.”  I think I might have even CALLED him “Adam” yesterday.  Weird!  I did a few stands.  I asked Phil if he was holding on to his socks.  The next stand wasn’t that impressive so I asked on the next one if it was good and he said yes and called me a “sock knock-er off-er.”  But, I think he was just patronizing me.  We moved over to the table which is usually against the wall.  Phil was bringing it over and he didn’t put it against the wall.  I didn’t like it but he said it was so he could get around to both sides of the table.  Okay then.  That makes sense.  He stretched me and then had me bring my knees up to my chest (I was laying on my back).  He would say “up” and I would raise my knee. It was the COOLEST thing to think something in my head and have me legs immediately move exactly how I wanted them to in response.   I remember Chris telling me that I need to have patience but once the pathways are set and things start to wake up then it will move fast.  It is all muscle memory then.  I haven’t had patience (of that I am POSITIVE!!!) but I have persisted and persevered and maybe the pathways are beginning to be set.  Could this be the beginning of it happening for me?!  How exciting is that?!  Phil told me that we will stretch and stand before I walk on Wednesday.  Bring it.  I’m ready.  I’m excited.  Not fully Jessie Spano excited” yet though.

When we were done, Phil brought my chair over and put it a distance away from me.  I saw it as being the furthest distance possible away from me.  In Australia?  Maybe China.  He tells me to scoot down and to stand.  He grabs my sides and before I even think about standing I ask if he has me and tell him not to let me go.  I am TOTALLY TERRIFIED!!!  I wasn’t “Walking Wednesday” and I didn’t even have my crutches with me!  I think I got two steps off and then Phil picked me up and put me on the table again.  I think it worked out better in his head because my body really wasn’t having it.  That’s okay.  I’ll save my walking for Wednesday.

So, at my work, I talk to Mr Curl (the PE teacher) and Mr Cooper (the behavior interventionist) often about my progress at Barwis. Curl has the same degree as Phil (in Kinesiology) so he gets what’s going on with my body. Cooper (we call him “Coop”) is a coach for various sports and he looks at Barwis from the coaching, strength and conditioning angle. Both of these men are interested in my progress.  I have worked with Coop for 9 years and with Curl for 8 years. I have been in a wheelchair almost from the beginning of working with these men.

On Thursday, I spoke to Curl about my 23 yard drive at Barwis the night before.  I made it a dramatic story about my first two “standing” first downs and my third and fourth downs that I went “until fatigue.”  He was excited for me and gave me a high-five.  Curl and I talk football often. I have made my picks for the Super Bowl (I made them in the WAY beginning of the post season and am WAY, SUPER EXCITED that my teams are still in it!) but he has told me to keep it a secret and not to tell anyone because I don’t want to jinx it. I agreed, you know, I go along with the whole superstitious thing because, let’s face it – I am.  He told me that averaging 7 yards a carry will get me about 8 million in the NFL.  He told me the Lions will definitely sign me.  Well, that’s great!  SCORE!  8 million AND I can hang out with Stafford!!!  Coop agrees that I can get pretty good money with my 7 yard carry average.

Yesterday, at Barwis, Phil stretched me out in the beginning. My legs were tight, but not as tight as they have been. I was not that impressed with my showing at stands yesterday. We stood a few times and did a few half-squats and then we headed over to the table for a REALLY good stretch.  My feet got tangled up when I stood and tried to get onto the table so Phil eventually had to just pick me up and put me on it. It was EXTREMELY apparent that Phil was working really hard to stretch my legs out. I asked him if that was his “concentration face” as he was stretching me.  He laughed.  It bothers me that my body resists so much. On Wednesday, I watched a young athlete get stretched out and her legs were moving so fluidly, so naturally.  I told Phil that I wished my legs moved like that. Jon and Jesse stretched me out like that in the summer and my legs looked CRAZY!  I also watched those ladies walking so effortlessly back and forth again and I want to walk like that.

So last night, I wasn’t SUPER impressed with how I did. But I did get a REALLY good stretch! So much so that my legs were jello at the end of it. Phil had to put me into my car. Phil has told me it will go in cycles referring to my legs performing well. Highs and lows. I don’t think this was a low point but I DEFINITELY did not feel that it was a high point either. So I will take a water bottle with me on Monday to Barwis and I ordered my chapstick (I can’t find it in stores and it HAS to be Acai berry!). Barwis does not smell like turf and my chapstick any longer. It smells like turf and Phil’s deodorant.  I am going to reinstate my superstitious routines again…just in case.  It can’t hurt anything, right?!

On Wednesday, I texted my Mom before I started work at Barwis.  I told her of the debacle I was facing in light of my series of unfortunate events because I did not have my chapstick AND my water bottle broke.  She sent back this text:

“God is with you!  Chapstick is a superstition.  If it means that much to you, you have Adam who is a wonderful trainer!  You have Barwis that is a great place to be.  I’m sorry for the messy trouble.  Did anything get ruined?”

When I read this text, I could feel tears stinging the back of my eyes and I quickly put my phone in the front pocket of my  hoodie.  I took a few deep breaths and willed myself NOT to cry.  I was SUPER bummed that my mojo was off and moms (at least MY Mom) have that effect on people.  Just hearing her voice (or reading her words in this case) could put me over the edge emotionally and I would cry.

Then she sent, “I’m sorry.”  and then “Did you start your routine yet?”

Oh Man!  This was getting a bit too much!  I could feel the tears even closer.  I texted back, “Starting now.”  so I could take the next few moments to gather myself before I started to work.

Yesterday, Kimmy sent me this text:

“So you know that saying superstitions are only crazy if they don’t work?  Does that mean your chapstick and water are crazy superstitions/routines hahahaha.  Maybe it was just God telling you “I got you!”  No one can throw your mojo off besides God.”

I didn’t respond to this text only thought about it long and hard.  Yes, I knew that saying.  Those Bud Light commercials are my FAVE!

I saw this one LAST football season.  It is TOTALLY me!!!

CLICK PICTURE TO VIEW.

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Then there’s these commercials I saw this year and they also are TOTALLY me!!!

CLICK PICTURE TO VIEW.

  “Quinoa”

It’s pronounced kEEn-wah even though I think it should be kin-OH-wah. 

   “Basement”

  “Ramsey”

 “Jukebox”

Yesterday, I was getting my things together to leave work and my friend Erin texted me.  We went to high school together and then our sons both played football for the Dearborn Lions two years ago.  She was recently diagnosed with MS and we have text conversations (my primary form of communication) occasionally.  Texts ended up speaking of my blog.  I told her that “I’m not walking yet but I really feel that it’s coming.”  She texted that “It will come you just have to be persistent but patient at the same time. Easier said than done right?”  I kind of laughed at that text.  I KNOW that that is my BIGGEST problem!  Jesse always would tell me that I was my own worst enemy.  Phil told me last night to “get out of my head.”  So, it’s NOT easy for me to do this as Erin’s text told me.  But, I AM persistent.  I go to training every Monday, Wednesday, and Friday.  Eventually, the patience will come OR I’ll be walking and won’t NEED to be patient in this regard.

I pack up all of the things I need to take home with me and leave the building.  As I am unloading all of the things I am taking home with me onto the passenger’s seat of my car, my water bottle falls off of my lap to the asphalt and shatters.  I use glass water bottles (BPA’s and all that stuff) with a silicone sleeve on it with holes in it.  So I guess the bottle hit the asphalt in such a way that the glass was the first to hit and it broke and water trickled out all over.  A colleague saw me and disposed of the remaining silicone sleeve for me.  That was one of my FAVORITE bottles too!  I shook it off and told myself that it would be okay anyway.  I will just have to go to Barwis WITHOUT my water.  I get in to Barwis and go in the pocket of my bag to grab my chapstick only to find that it is NOT there!  I check other pockets and sure enough, it is NOT anywhere.  I ALWAYS put my chapstick on before I begin work at Barwis.  So, I’m without water AND chapstick AND it’s “Walking Wednesday!!!”  This is TERRIBLE!!!

Phil comes over to stretch me and I tell him my unfortunate “tale of woe.”  I tell him that I am a creature of habit and I repeatedly say that “my mojo is off.”  He is stretching my out and tells me that I am really tight.  No wonder!  I AM FREAKING OUT BECAUSE MY MOJO IS OFF!  He tells me to relax and I tell him that I can’t and remind him that my mojo is off.  He looks at me and kind of smiles and tell me to” “F” my mojo!  Just “f-ing” walk!”  He said that repeatedly, probably as many times that I told him that my mojo was off.  Maybe more.  I told him that he was saying the “F” word A LOT and we laughed and headed to the Keiser machine.  In spite of my mojo being off, I wanted to put on a good show.  I stood up quickly at the bar.  My right leg was hesitant to join the party but it ended up coming around.  Phil had me sit and he adjusted the bar lower so it was the same height as my crutches would be.  I practiced raising my legs a few times like my legs move when I am taking steps.  Then it was “Go Time”  Let’s do this thing!

Lindsay was able to help us out yesterday so she and Phil got me standing.  Phil coached each step.  I put my crutch down on Lindsay’s foot which I KNOW hurts even though she said it didn’t.  I was able to get 10 yards.  Phil told me to remain standing and he didn’t let me go as Lindsay got my wheelchair.  I sat and Phil stretched my legs out again.  I rested for a bit and then it was time for my second down which really was ANOTHER 1st down because I converted.  Lindsay and Phil got me standing again and I *BINK*ed.  It was slower progress this time but Phil and Lindsay were patient with me and I was able to get another 10 yards.  A SECOND  conversion!  I was again able to stand after it’s completion with Phil holding me up.  I sat once Lindsay brought my chair.  I was tired!  I was excited!  Phil smiled and told me that I was still a “sock knock-er off-er” as he knelt to stretch me again.  I was going for it again.  I wanted to get a third 1st down.  My body thought otherwise.  I got two yards and collapsed.  Phil stretched me again and then it was my last attempt.  I got one more yard.  Then that was it.  But I went “until fatigue” those last two times – I went until I could go no longer.  The first two downs I was able to remain standing with Phil helping.  I told Phil I got a total of 23 yards today and two steps last week.  He told me that those two steps were a yard but I told him that they were VERY IMPORTANT steps so I have to keep them separate.

He walked me out to my car and I was able to stand and get into my car on my own.  He told me that it was a “helluva job, Dais” (the guys at Barwis call me Daisy – a name that originated 4 or 5 months ago by Dan, Dusty, and Jesse).  I smiled and texted a group of friends, Jesse, and Mike.  I drove home smiling.  Jesse told me that “it was a hell of a day” and when I texted him about my standing 1st and 2nd downs and “going until fatigue” for my 3rd and 4th downs.  He texted back that “that is how it should be.”  Mike thought it was “Awesome!!!” and I responded that “IT WAS!!!”  My friends were happy for me and proud of my hard work.

I went to bed early last night and it was the first time in a LONG time that my right leg did NOT “boing” up.  I’m a back-sleeper and it has been doing that for a while. I told Phil that I was “officially Jessie Spano excited” and sent him this link.  He told me that “that makes him happy, to keep being relaxed, and that I worked hard today.”  I texted back that “it makes me happy too!”  Because it does!!!

TOTAL YARDAGE = 139 and 2 steps!!!

Yesterday, I was a bit rushed getting in to Barwis.  I stayed at work a little later than usual because I was talking with the PE teacher about the NFL playoffs.  I get in to Barwis and Phil stretched me right at the Keiser machine.  I sat in my chair and he sat on a weight bench.  He stretched me out very well and I felt pretty good.  He had to run in to the break room for a minute and as he stood up he told me that we will work on stands when he gets back.  I was nervous to ask but I did anyway.  “Am I getting in a harness?” (I really didn’t WANT to get in one but I resigned myself to do whatever he said)  He told me “no.”  I asked why and he said, “because I said so; and what I say goes,” jokingly with a hint of a smile on his face.  As the door is closing behind him I smiled to myself.  I was GLAD that I wasn’t getting re-harnessed even though I had talked to my cousin Kimmy and she pointed out that it could be good just to “reset” things if I had to get harnessed again.  But, I kind of saw it like me as a child NOT wanting to take the disgusting medicine even though taking the medicine will make me feel better.  Who really likes taking disgusting stuff?

When Phil got back, he sat down on the floor in front of me.  I asked him if he’s holding on to his socks.  He laughed and told me that I haven’t said that in a while (I REALLY haven’t; i used to say that to Jesse all the time!)  I told him that I was going to knock them off and he grabbed my knees and told me to stand.  He coached me throughout the stand.  He reached up and told me to concentrate “here” with a tap on my clavicle (he CAN reach my clavicle when he is sitting down because he is TEN FEET TALL – really he’s 6’5 but considering I’m 5’0 he may as well be 10′).  I was able to *BINK.* I held on to the stand until he told me to sit down.  It was SO difficult!!!  I REALLY had to concentrate!!!  But I was determined to “grab my guts” and knock his socks off!!!  When I sat down and opened my eyes he smiled and told me that it was good and that I stood for a minute and a half.  I asked if I knocked his socks off and he laughed and told me that I was a “sock knock-er off-er!”  It felt really good!!!  I asked about Wednesday and Phil said he would stretch me and then we’ll try walking.  SCORE!!!  I stood a few more times but none of them were as impressive as the first one.

He stretched me out again on the turf (the table was in use) and Eric brought me a towel to put my face on.  Backey took me out to me car and asked how my training was going.  I told him how my right leg has been acting and he told me that a new sensation is progress.  I told him that it was not cool because it was hindering my ability to get steps off and I want to be walking yesterday.  He grunted sympathetically and told me that I AM making progress.  I asked him “how?” and he yelled “YOU’RE WALKING!”  This is true.  Kimmy has pointed it out as well.  I really can’t see the progress because I FEEL how hard it STILL is!  I told Backey that I got in to my car by myself on Friday and tried again.  I got halfway in.  He had to lift me in the rest of the way.  I told myself that I wasn’t going to let the help I needed to get in my car take away from training today.  Afterall, I DID knock Phil’s socks off!

*I figured out what I dislike MORE than snow – SLUSH.

I woke up this morning to this thought.  I’m definitely NOT giving up but Jesse is SO right when he says that it won’t be easy.

I went in to Barwis yesterday telling myself that it is okay if I get re-harnessed. Even  though it’s really NOT.  Phil had talked about the possibility of putting me back into a harness to do squats.  He kind of asked what I thought and I told him of my conversation with Jesse about that.  I told him to just TELL me; don’t ask.  I know now that it is for the best so I can get the FULL range of motion but I can’t help feeling a little bit defeated because I want to be walking YESTERDAY and I see getting re-harnessed as a step backward.

But yesterday, we took an even FURTHER step back!  Phil told me on Wednesday that he was going to talk to Mike about me and what he should do.  He was going to get Mike’s take on ny legs “boing”ing (TOTALLY my word for it).  So Phil tells me that he’s just going to give me a slow stretch today.

I laid on the table and asked Phil A MILLION questions.  He didn’t get noticeably irritated with me and patiently, repeatedly answered my questions.  He must have spelled “proprioreceptors” a million times for me and explained the role of the Golgi tendon just as many times.  I know I said that I don’t like what’s going on with my right leg at least twice and asked “why?” a bunch more.  I didn’t fully appreciate all that he said to me until I googled “proprioreceptors” like he told me to.  I had to read the first 5 hits to fully understand all that he said to me.  There was a mini-test at the bottom of one of the sites.  I took it.  I failed.  It was only 5 questions!  This stuff is hard!  Bottom line:  Phil knows what he’s doing!!!

He took me out to my car and I got in ALL BY MYSELF with him spotting me.  I let him hear my new favorite song, “Everything Will Change” by Gavin DeGraw.  He even waited to hear my verse (the one Gavin sings JUST for me!).

“Back  when it used to hurt, took you a while just to find the worth
Losing, well, it sometimes burns, but you keep moving on
You’ve got to grow strong like you’re leading the nation
Got to make the best out of this situation
Get your hands up like it’s a celebration
And keep moving on”

We fist bump and I ask again if I’ll get harnessed on Monday as he’s walking back in to Barwis and he calls “Maybe.  Probably.” over his shoulder for the millionth time.