Author: Jen Rios

I got out of my car on my own on Friday and Dan met me at the door and pushed me inside.  He pushed me to the black mats where the chairs are located.  I stopped to see Mike working with a young athlete.  He was clinging 225.  I was impressed with his form and athletic ability.  Usually, I see a few people in wheelchairs working but today I only saw one wheelchair and occupant was nowhere to be seen.  They were working in the far end of the gym so I was surrounded by young athletes.  They were mostly football and soccer players.  They were bench pressing and working on the vertimax.  All of them were drenched in sweat and their faces were red with a look of determination on them.  Mike pushed me over to the blue table where the floor on the way was scattered with athletes with exercise balls.  He told me to tell them to move as we weaved our way through them but they were busy working and I didn’t want to mess with their mojo.  Mike sat me on the table and began loosening my legs.

I told him that I was sleeping better and that my left leg was “boing”-ing up but I didn’t explain it like that because it didn’t hurt so much.  I also was experiencing charley horses in my right foot.  I told him that my quads felt tight as he made his hand into a fist and pressed his knuckles onto my thighs and ran them up and down them and told me that sensation was returning to my legs.  I kind of winced a little and he asked if it hurt as if he was going to ease up but I told him to quote the wise words of The Never Ending Story, “It’s got to hurt if it’s to heal” so I just endured.  He had me lay on my back and he stretched my legs out and instead of laying on my stomach, he had me lay on either side and he stretched me out that way.  As he pulled my ankles so I could sit up at the edge of the table, I kind of furrowed my eyebrows because my legs (my quads especially) still felt tight and still hurt a little but his next client was waiting.

Anthony took me out to my car and I explained the 4 step process of how I was going to get in (there was no snow on the ground so would attempt this on my own).  He would just have to give me a shove if I wasn’t going to land on the driver’s seat upon turning.  I was able to do all 4 steps on my own and my legs bent by themselves as I did this.  I relaxed a little more on my way home and slept well.

Wednesday, Mike came out to get me from my car and my legs had stiffened and I was stuck in the car.  I couldn’t bend them to get them out of the car on my own.  He told me that it looked like we weren’t going to do squats that day either.  That REALLY stunk but I knew that he probably was right.  I haven’t really thought about it too much but – DUH!  It’s winter!  There is snow outside!  My body tends to seize up a little more often in the cold.  I’ve already been through one winter at Barwis.  I’ve been through 14 winters with MS.  I already know that the cold is NOT cool or NOT fun.  Snow is even more NOT cool or fun.  This weather is when my body tends to “hibernate.”  That’s how I think of it rather curling up within itself because the pain proves to be a bit too much.

Mike laid me on the blue table and began stretching me out.  It’s the rather intense stretches that make my body feel almost normal.  He had me roll over on to my stomach and shamefully, it was the first time EVER in about 18 months that I had to give up.  I was on my stomach and the pain was too much and I rolled onto my side and said, “Mike, I can’t.”  It hurt too much.  He didn’t reprimand me or tell me just to breathe through it because I would like to believe that I have already proven that I’m not a big wuss.  I grit my teeth, gasp, scream, tell him to do his worst, squeeze his wrist, and even let out an ocassional  “Ooh Doggie!” But I had to call “uncle” on this one.  That was bad.  I felt defeated.  Mike stood by the table and explained why it was hurting me so badly.  I remember telling Phil about feeling like Calibos from Clash of the Titans (the 1981 version).  My body feels like his body looks when Zeus punishes him.  Calibos’s little figure gets placed in the arena and you just see the shadow of Calibos’s transformation where he is changed into a beast.  His legs are gnarled and he no longer stands straight.  That is how I feel.

When the weather breaks, I can go back to actively standing, squatting, and walking (that’s what my cousin Kimmy said to me last year to encourage me to keep going).  Connor took me outside and helped me to my car.  I drove home feeling bad because I gave up but my legs felt REALLY good because of the stretch.  When I got ready and in bed, I did my crunches and before I fell asleep, I laid on my stomach.  It didn’t hurt and I fell asleep and woke up 63 minutes later to roll over to my side.  So, I was down, but I’m not out.  DEFINITELY not out!

My appointment was an hour later for Barwis yesterday.  Mia was not there when I got there.  Instead, I got to watch Garret do squats.  Watching him was the MOST impressive thing I have seen in a long time!  He did A LOT of squats seemingly with ease.  Garret is a paraplegic so I know that it wasn’t easy for him.  It just looked SO fluid.  It looked like fluidity that my body is NOT capable of.  I watched him until it was my time.  Mike walked over and told me that we would do squats this week and I asked him if saw my look of longing because I know I had one on!

I was pretty stiff.  It rained Sunday and temperatures have been higher than they were so the snow has been melting so it has been VERY damp.  Mike stretched me out very well.  I didn’t so much focus on how much it hurt but rather how relaxed it was making my body feel.  It was the calmest my legs had felt ALL DAY!  Megan came over and sat by the blue table to talk for a bit.  I asked her if Garret’s body would react to the weather.  She told me that it didn’t.  I remember what Jesse said to me so long ago about how people with MS differ from people who are paralyzed.  He said that people who have become paralyzed have ONE accident and they get better from that day but for people with MS, EVERYDAY is an accident!  For me, right now, the accident is PRETTY serious!!!

I drove home feeling REALLY good!  My legs were calm and I was tired.  I was looking forward to a good night’s sleep.  I went through my nightly routine before going to sleep.  My crunches and laying on my stomach.  I fell asleep easily but was awakened just as easily in an enormous pain before midnight.  The pain persisted throughout the night robbing me of any peaceful sleep that I may have had.  Before I knew it, it was time to get up for work.  Work was rough because I was tired from lack of sleep and the humidity was at 80%.  My body hurt SO MUCH that I didn’t even notice how my hair was reacting!  Even as I write this at 9:44 p.m. It is STILL at 80%.  I hope I get some sleep tonight!

Friday, my legs were really tight.  This fact won’t deter me from my goal of walking; yet it is a constant reminder of how DIFFICULT this journey is and is going to be for me.  My legs were really tight and stiff at work and they remained that way when I got to Barwis.  Anthony pulled me into the door (I was rolling in backward) and pushed me to the chairs.  Mia was doing squats again and I got to cheer her on.  Her squats were A LOT stronger this time and she stood up taller.  She dedicated her second set of squats to me and I cheered her on even more.  She was getting tired on her third set and I told her to “dig deep” and that I KNOW it’s hard but that she can do it.

When it was my time, Mike pushed me over to the blue table.  He felt how tight my calves were and kneaded them pretty hard!  I think he was trying to get me to say, ‘Ooh Doggie!” as an act of surrender.  I told him continuously throughout the stretch through gritted teeth that I could take it, I wasn’t going to give him the satisfaction, and to do his worst.   Before the stretch really started, I told him that on Wednesday, I was able to lay on my stomach for 44 minutes before falling totally asleep for the night on my side, curled up in a fetal position.  Because of the cold weather, I curl my body in a ball when I sleep because it is most comfortable for me.  Mike has stretched me while I lay on my stomach to help with my adductors and/or abductors (I can NEVER remember which one it is) that will make it easier to take steps.  I haven’t been able to lay on my stomach comfortably for a VERY LONG time.  After I told him this fact, he looked at me with a straight face and said, “You’re welcome.”  I laughed and told hm that I laid on my stomach Thursday night as well.  He looked at me again and said, “You’re welcome.”

I laughed again but there was an ounce of truth in what he said.  Friday night, I laid on my stomach comfortably for 50 minutes before ultimately going to sleep.  Saturday night, it was over an hour.  It seems that I am making progress in spite of the weather.  Now, Mike’s stretches are NOT easy by any means but I feel that they are necessary.  At times, I will squeeze my eyes shut, draw in my breath, and grab his wrist that holds my shoulder down but I feel that it’s essential for progress.  That being said, it’s not like the weather doesn’t affect me at all in my waking hours but at least I don’t sleep the whole night in a ball.  So, just like I told Mia, I need to “dig deep” and I am absolutely positive that it is hard (it’s been hard at varying levels for 14 years so far) but most importantly, I need to remind myself that I CAN do it.

A few young athletes were coming out of the back door of Barwis when I pulled up.  There was no snow on the ground so I would be able to get out of my car on my own.  As I was getting my chair down, I heard Mike’s voice.  He met me by my car and I proceeded to show him how I get out of my car when I am alone.  He pushed me inside and pushed me to the front desk to check in with Alyssa.  As he pushed me back into the workout area, he told me that we were going to stand today.  He asked me if that was okay and it was for me!!!  Yay!!!  Finally!!!  As I sat and waited for my time, I could feel my legs begin to tighten.  This fact frustrated me because I REALLY wanted to do something active today!  I knew that I wouldn’t be able to stand if my legs were too tight.

Mike pushed me over to the blue table and I told him that my legs were tight at work and that they had just started to tighten even more.  He loosened me up.  As I laid back on my back, I asked him about the “Tron grids” because he had that look in his eyes – the one of searching in the muscle of my thigh.  He smiled and said, “Nerd!  Tron.”  I laughed!  I DO have a little boy who was 8 when Tron: Legacy was released!  He stretched me some more and then asked if I still wanted to stand.  I responded that, “Hope ALWAYS says to try… at least once.”  He nodded and told me what we were going to do.

He looked around for someone to assist us and when he couldn’t find anyone, he looked at me and said, “It’s just you and me, like we’re dancing.”  Okay. I smiled because I used to say that to Phil every time he put me in and took me out of the stander.  Now, the blue table is low to the ground so I was nervous as to how Mike was going to get me standing.  He didn’t have a problem.  I could not get the heels of my feet to touch the ground and instead I was balancing on the balls of my feet.  When I could no longer stand, I rested my forehead on his chest like I did with Phil.  Then Mike would ease me back down onto the table.  We did this 3 times and then my time was up.

I thought of the “Thinking Out Loud” by Ed Sheeran song and that first line, “When your legs don’t work like they used to before…” on my way home.  I listened to the song repeatedly as I drove because Santa got me the CD for Christmas.  That’s me.  My legs don’t work like they used to and NOT that I was some GREAT dancer but I remember asking Jesse about dancing the first summer I came to Barwis.  He said that would take time to regain.  I remember seeing the behind the scenes/making of the video and the choreographer saying that now people can have the image of Ed dancing to that song,  Now, we (Mike and I) looked NOTHING LIKE Ed and that lady in that video but I got that image of them dancing in my mind when Mike said it was like we’re dancing.  I haven’t had that kind of control over my body in SO long but it was nice to think of that image anyway.  One day.

I ended up being early for my appointment at Barwis.  I got to watch Mia at the Kaiser machine.  She was a young girl and I don’t know what her ailment is.  I know that her hands needed to be secured to the bar.  She had a hot pink wheelchair and I liked her.  I got to witness three sets of squats and it was a gift for me to witness these three sets.  It’s nice to see someone else determined and working their hardest.  I haven’t seen someone working at the Kaiser machine in a long while; I haven’t been at the Kaiser myself for even longer.  Mia did EXCELLENTLY!!!  I talked with her dad a little bit as I made sure I made eye contact with her and I cheered her on.

Mike helped me on to the blue table and commented on how tight my calves felt.  After some time of him kneading them, he had me lay back.  He stretched me out and asked if Jesse or Phil did any different kinds of stretches then he did that worked better.  Not really.  The stretches for everyone were different but the same.  It’s like they all belong to this club who knows about the human body and muscle groups and what they need to do to activate different muscles.  I guess it has to do with the kinesiology degrees they all hold because they ALL have activated the muscles.  They all get this look it their eye, like staring off into space as they feel my muscles with their fingers searching for the right spot to press to activate the muscle.  Parker used to do this too.  I have asked Parker, Jesse, and Phil if they see grids on my body, like the red light lines in Tron.  They don’t.  I don’t think I’ve asked Mike if he sees them yet but he gets that same look in his eyes.

He asked me if Jesse, Phil, and he were at Barwis, who I would choose.  I didn’t answer.  I COULDN’T answer.  How can I choose one over the other?!  They are all different but the same.  I cared about ALL of them at different points in my road to walking so they were all dealing with different stages of my body reacting to the strengthening I am working on.  I tried explaining the intricate relationship you have with the person who is working with you to regain your ability to walk to Mike once and I fell short of an explanation (as I am now) so I will just say that so far, I wouldn’t trade my time with ANY of my trainers (Mike included)!  They are different but the goal has been the same with each of them.  I just haven’t reached my goal yet.

Jareth came out to help me get out of my car again.  It was a cold and blustery day so I told him to wear a coat.  He didn’t.  I asked where his coat was but told him that I can’t be mad at him because I liked his sweatshirt (It was a Michigan Football shirt).  We talked about U of M (I owe them LOTS of money), State (Mr. Curl and Phil went there), and the price of college as he helped me into my wheelchair and pushed me inside.

Mike came to get me as I wiped my wheels off.  As he pushed me over the blue table, I noticed that there were some good tunes on.  Some good “throwback” tunes.  I felt like I was in high school.  I’ve NEVER heard this type of music at Barwis before!  I asked Mike what station it was on and he told me that it was 90’s  Pop.  Megan asked Garret if he knew who was playing.  I answered, because Duh!  It was the  Backstreet Boys!  As Mike kneaded my legs (It hurt!) he would ask me as I winced, “Ooh Doggie?”  Through gritted teeth, I told him that, “I can take it.”

I laid on my back and the stretch remained INTENSE!  He asked, “Ooh Doggie?” again and I told him that I wasn’t going to give him the satisfaction with my eyes closed.  He pushed the stretch further and I opened my eyes and told him to, “Do your worst!” with my Count of Monte Cristo English accent.  I asked him if he saw the movie.  He didn’t.  I told him I have the DVD and that I lent it to Adam because he hadn’t seen it either and that I also sent Adam the link with the full movie on YouTube (I STILL don’t think Phil has seen the movie yet though).  Then my Senior class song came on and that was GREAT!  “How’s It Gonna Be” by Third Eye Blind.  I haven’t heard that song in a LONG time!!!

The stretch was INTENSE this time but I think it was because Mike was TRYING to get me to say, “Ooh Doggie!”  He told me that if I didn’t say it, then he wasn’t going to help me to my car.  When my time was up and Mike put my shoes back on and pulled my ankles so I was at the edge of the table  so I could sit up; I looked at him and said, “Ooh Doggie” quietly.  Because that stretch was HARD-CORE!

We saw that there was a light dusting while I was in there as Mike took me outside.  He was in a t-shirt and shorts so I tried to hurry.  Mike got me in my car  smoothly and my legs automatically bent.  He loaded my chair and I operated the switch to raise it up into my chair topper.  He dusted my windows off with his hands before he went back inside.  Thanks Mike!

Well, the snow has started to fall and I am STILL in my wheelchair!!!  I HATE the snow because wheels and snow don’t go together AT ALL!  I pulled up to Barwis (early) and called to have someone come out and help me.  Alyssa answered the phone and I told her the deal.  She came out with an “almost Adam-sized” guy named Jareth and a shovel.  There wasn’t TONS of snow, just enough to make me slip so I told Jareth what we would do to get me into my chair.  He would spot me as I stood and ease me down into my wheelchair.  He did and Alyssa pushed me inside.

My legs were just a little bit swollen and it wasn’t until Mike pushed me to the blue table that they began to stiffen.  That ALWAYS seems to happen once I get to Barwis!  He had me lay down on my back and put me in the modified “Ooh Doggie!” stretch.  It felt SO much easier!!!  He asked me if I felt a stretch and I nodded.  I asked him how I felt and he said that we were “definitely gaining ground.”  I liked the way that sounded.  I need to be reminded that I am making progress periodically.  Then he had me lay on my stomach.  He put my left leg in an L-shape and moved my foot to the left, right, and toward my butt.  He asked me where I felt the stretch each time he changed directions.  It was REALLY cool that I was ACTUALLY feeling all of the muscles that I was supposed to when he changed directions.  When he was stretching my right leg, I asked him if I feel different from I did the first day he stretched me and he replied, “Absolutely.”  SCORE!  I liked that response!

Mike took me out to my car.  He reminded me of the 4 step process to get into my car but I told him that I can’t do that in the snow.  He helped me into my car with a few technical difficulties but I was in.  In the process, my legs stiffened and would NOT bend.  As he was trying to bend them, I said Phil’s “bends” and ended with the “bend it”s.  I said I missed Phil’s “bends” but maybe I really didn’t because I liked when my legs just automatically bent; it felt like I was gaining ground.

I was on time to Barwis and my legs were still swollen.  I hope that being back in my routine of being at work will help me but it hasn’t yet.  Mike worked my calves to make them less swollen.  After they started feeling better, he had me lay on my back.

I told him that he put me in a “modified ‘Ooh Doggie!'” stretch” (he had my knee placement a little different).  Then he had me lay on my stomach.  He did all the same stretches he has done before but it hurt a little bit less so he could stretch me further.  I let a few grunts and gasps out when I was laying on my stomach and I only realized that because Deeds commented about it.

Mike took me out to my car and reminded me of the 4 step process I need to complete to get in my car.  I repeated it aloud, “Stand. Grab. Turn. Sit.”  I tried and only was able to stand.  My legs felt so much like Jell-O that I was surprised I could do that!  I tried again, undershot the car seat, and collapsed and almost ended up on the pavement.  Mike caught me though.  He had me sitting in on the driver’s seat in like 12 seconds.  Once sitting my legs automatically bent.  (It’s nice to FINALLY see progress in this regard but I kinda miss Phil’s “bends.”  Mike is A LOT better at helping me into the car than Sean because he’s NOT 13.  I was completely in my car in like 44 seconds.  My legs began feeling better as I drove home.  I hoped the swelling would go down soon.

I showed up to Barwis yesterday ON TIME (a little bit early actually) so Mike took me a little early.  I sat on the blue table and Mike reached down to grab my ankle.  My legs were pretty swollen!  I told Mike probably the second day he worked on me that I WOULD get cankles  and sure enough; I have!  As Mike started kneading my legs (as both Jesse and Phil have had to do), I told him that I thought it was because I was on break (from school) that my legs swelled.  When I am on my work schedule I am up and in my car  A LOT earlier.  My legs started feeling better the longer he kneaded them.  He put me in the “Ooh Doggie!” stretch but HE’S the one who says it now as a joke but it REALLY did hurt that first day.

He had me lay on my stomach and stretched my legs behind me.  The stretch was intense but I didn’t scream.  A yelp may have slipped out though.  Then Mike had me sit up and he grabbed my hands and held them (he was seated on a stool in front of the table).  He pulled and pushed my arms (core work) and began dancing to the music so my movements were choreographed.  Jesse had worked with Mike previously some years ago and he told me that Mike would not be as goofy as he (Jesse) and Phil were with me before I met Mike.  I told Mike that Jesse and Phil used to dance and it made me feel comfortable that Mike was dancing too.  I’ve felt for a LONG time that MS has taken my dancing from me.  I asked Jesse when dancing would come back because I miss it (not that I was that impressive) and he told me that it would be awhile.  Well, it didn’t come back yesterday but…we’ll see.

I undershot sitting in the driver’s seat when I attempted to get in my car.  Once I was in my car, Mike and I continued a conversation I had started earlier.  I’ve been asking Mike questions about his family since the second day he worked with me in an attempt to expedite me getting comfortable with him.  The first time I started asking about his family (the second time we worked together) he was a bit taken aback with all of my “personal” questions.  I told him that it doesn’t get personal until I ask him his middle name (I know both Jesse’s and Phil’s – but I don’t think Mike and I are there just yet).  I asked Mike what his family calls him.  He said “Rhoades” (his last name) and then he told me that his name is Mike.  I told him that my family calls me, “Jenny.”  He laughed and called me “Jen-ney” (just like Forrest Gump (like I haven’t heard that a million times since 1994!))  Once I was in my car, I continued the conversation and asked if they call him, “Mikey.”  He was putting the metal arm into my wheelchair and he straightened up, looked at me, and warned me to, “Watch it!” Oh! Oh! Oh!  I don’t think I’ll call him “Mikey” like I called Adam “Phil,” but it is a weapon that I will keep in my arsenal.  A well-placed “Mikey” will work to my benefit!  I laughed at his response and he shut my door saying, “Whatever, Jen-ney” and shook his head.  I laughed more and nodded my head saying, “Mikey.”  He circled around the front of my car, stopped, and shook his head with a straight face to which I smiled, nodded, and may have given him a “thumbs-up.”