Author: Jen Rios

This picture is my favorite!!!  It looks like I’m being stretched before a sprint.  Or before my floor exercise routine.  Or maybe I’m a dancer!  Sadly, none of the aforementioned scenarios are true.  But my wheelchair is NOWHERE in sight.  I look like I’m an able-bodied person!  Maybe even an athlete.  I remember this day vividly.  It was a Friday in July and my Mom had accompanied me to Barwis.  I was going to start back to work the next week.  It would be a change of routine for me and I wasn’t coming to Barwis the first week I went back to work.  Going back to work after my summer off is a big adjustment for my body and we didn’t want to overload it.  Since my Mom had accompanied me, Jesse told me that we could get a good stretch in because I would not be coming the following week.  I was nervous to NOT come.  I didn’t want to undo all of the progress I had made.  And I had made progress!  I wasn’t walking yet but Jesse had told me on numerous occasions that there was “no question” that I would walk again.  I still had difficulty wrapping my head around this idea but I had and have COMPLETE faith in Jesse.

So that day after squats and standing, Jesse took me over to a large open area and he stretched me.  It “hurt so good” as my Dad used to say.  Jesse had told my Mom that he has to “break the ice” around my muscles.  The muscles in my legs have not been used in a VERY long time.  They are atrophied (shriveled and knotted up if you will). The stretch really DID feel good if not a little bit foreign.  I knew to just breathe through it and it would be okay.  Both Jesse and Jon had asked me before if I was flexible before my diagnosis.  They both would stretch me pretty far without me complaining of pain.  I told them that I have 4 older brothers.  I was used to not complaining.  Messing around with my older brothers, If I said it hurt, my brothers would push a little more as I was a child.  I knew that there was a reason these men were stretching me so much.  I didn’t want to stand in the way of progress.

This is my other favorite picture even though you can see my wheelchair.  When I student taught, my cooperating teacher taught a yearbook class.  I think of that 9 years later when I look at this picture.  He would tell the students to think the acronym APEER (Action, Perspective, Eye lines, Emotion, Reaction) when shooting pictures for the yearbook.  I think this picture embodies that!  At least for me.

When we left Barwis, my mother had to help me into the car.  Thank God she was driving!  I was SPENT!  My entire legs felt warm and loose. It was a feeling I had not felt in so many years.  My legs were two entities.  Instead of one shriveled mass, I had two legs!  It LOOKED as if I had TWO legs!  My knees were not touching and my feet were not turned in.  I had been working on that for over a month and now I was conscious of the fact that it was working!  My legs felt a tiny bit “burn-ie” but in a good way.  My Mother had to help me A LOT over the weekend.  I was nervous as to how I would be able to handle things by myself at work come Wednesday.

It was Monday, August 19, 2013 that I cried.  These tears would not be happy tears.  I was at home and my Mom STILL had to come over and help me get into my bathroom.  My house was built in 1951 and it is NOT wheelchair accessible.  In 1951, apparently people in wheelchairs did NOT own houses.  But in 2013, I DO own a house and I AM in a wheelchair and I own THIS house.  Given how my legs were feeling now, I wasn’t able to get out of my chair (my bathroom doorway is not wide enough for my chair to fit in) and take the few steps with the aid of the sink and bars on the wall necessary to use the bathroom.

At this point, the feeling had progressed from a good “burning” to it feeling like my legs were frayed rope.  My ENTIRE legs felt this way.  From my thighs all the way to my ankles.  I laid down in my bed hoping to get some reprieve from how my legs were feeling.  As I lay there staring at my bedroom ceiling, I am having a text conversation with a friend.  I tell him how my legs feel and how now it feels as if someone has set the rope on fire.  I then text him saying that I feel like I’m going to cry!  He replies with a simple “Do it then and then suck it up and keep working hard.”

His simple response helped me more than he could know.  I continued staring at my ceiling and could see the posts  of my bed as tears welled in my eyes and started streaming out of the corners.  They were hot tears and they were falling into my ears and soaking into my pillow.  I didn’t sob.  They were “strong, silent” tears as I call them as if somehow that is the better of the two kinds of crying.  I don’t know how long I cried but I felt better afterward.  Not that my legs were hurting any less but my perspective had changed.  I had just finished crying.  Check.  Now I was on to the second item on the list.  I have to suck this up and item #3 I have to keep working hard.  Things seemed clearer to me.  I knew what I had to do.

It was a Monday in July and I had a training appointment at 9 am.  By this point, I knew how much work it was going to be, how hard it was, and how much of my guts I would have to grab as my Dad used to tell me.  My Mom had already started work for the summer and it was just Sean and me at Barwis.  I had already told Sean to “just push me into the car so I don’t fall on the ground,” once before after the workout was extremely hard for me.  I had realized that I was going to give it my all, even more than 110%.  So much so that it would be just about impossible for me to transfer from my wheelchair to the driver’s seat of my car (I drive with hand controls),  If I fell, I didn’t want to fall onto the ground outside.

I began with squats as had become the routine.  Jesse would get me into a harness and hook me up to the air machine.  It was just after I did squats to Jesse’s satisfaction that he decided that I was going to stand.  By myself.  With no help.  I was a bit nervous and flustered.  I would be standing all on my own with to help.  He had faith in my ability and I had faith in him.  He un-hooked me.

Mike heard us talking and he came over and spotted me as I stood as well.  It was obvious I was getting stronger.  Conversation shifted to me walking.  I figured that was something far off in the distance.  I still had difficulty wrapping my head around that idea.  Everyone at Barwis whom I had asked if they have seen people in chairs get out of them answered me with a simple “yes” as if I had asked them if the sky was blue.  In our conversation, I told Mike that my crutches were in my car.  He told me to get them.  I asked Sean to go get them from the trunk.

I sat in my wheelchair waiting for Sean to bring my crutches trying to remember the last time I walked.  I broke my ankle 8 years ago.  I was in a wheelchair for 6 months while it healed.  But then my Dad had died 7 years ago and I remember being on my crutches then.  I can’t remember when I made the decision to be in a chair all the time.  I don’t know that I consciously made the decision – it was made for me.  It was easier to teach class in a chair (I am a middle school teacher.  I taught English for 5 years.  I got my Master’s degree and now I am the Reading Specialist.  I teach Reading).  If I would have known then about how hard it would be to get OUT of the chair and to regain my ability to walk; I would have sucked it up.  But, back then I thought the chair was the end of the line for me.  NOW, I know differently!

Sean comes back in with my crutches, beaming.  I am nervous.  Jesse and I have already talked about me walking again and I told him that I was going to cry.  I felt weird!  I was in disbelief that I was going to walk TODAY!!!  I slip my arms into my crutches and Mike and Jesse lift me out of my chair and onto my feet.  I get my bearings and begin to take steps with them encouraging me the whole way.  That encouragement means SO much to me!!!  I am walking!  Taking these steps is SO familiar to me!  It’s crazy how difficult each step is to take.  I am SO tired.  I need to take a rest.  My chair is brought over to me and I sit down.  The ENTIRE gym cheers for me!  They all were the entire time!

I don’t know how far I’ve walked.  I was walking on a diagonal.  My son has the BIGGEST smile on his face!  It feels SO good to see him so happy!  We’ve had conversation before (Sean and I).  He really doesn’t remember me walking.  He was 2 and walking when I first got my crutches.  I used to tell him to “hold Mama’s crutch” when we were walking anywhere.  He was 4 when I broke my ankle.  I can’t remember holding his hand or anyone’s for that matter.  I told him that when I’m walking again that I don’t care and I’m going to hold his hand.  He said okay but he’s 12 so we’ll see how long that lasts!

Jesse comes over to me and asks if I’m going to cry.  My jaws is clamped shut tightly and I am holding my chin trying to will it to stop quivering.  I need to keep my composure.  I am in a workout area with a bunch of guys!  I am NOT going to cry!  I’m “grabbing my guts” and “being a man about it” as my Dad used to tell me.  I’d tell him that I wasn’t a man and he’d tell me that it didn’t matter.

Connor interviewed me after this workout.  Apparently, there is footage of me on Facebook, Twitter, and Instagram.  It also was on Barwis Method’s website for awhile.  I’ve never seen it.  I held it together nicely.  I didn’t cry at all.  Sean and I get into the car and I call my Mom at her work.  I told her that I walked.  “What?!”  She says in disbelief.  I give her the directions to view it on Barwis Methods’s web page.  She is giving the directions to a co-worker as I am on the phone.  She says “There she is!”  She tells me that she has to go and hangs up.  I hear the tears in her voice and hang up and then begin to cry.

So, I just thought about this last night.  My sense of smell is very acute now that I’m ALL NATURAL.  I eat organic (as much as I can), I use free and clear laundry detergent, mineral makeup, natural soaps, shampoo, deodorant (no, I DON’T smell like patchouli!) and body wash, and organic cleaners.  I am chemically sensitive so my sense of smell is a little bit sharper.

I also am a creature of habit.  I fall into routines and am a bit OCD about them.  I have a routine as I get into Barwis each day.  I just realized this last night as I was going to start working with Jesse.  I always put on my chapstick.  It’s Burt’s Bees Acai Berry (the one with the dark purple cap).  I got it at Target.  I LOVE, LOVE, LOVE it!!!

So, not only do I have a soundtrack to my life, I also attach a smell to different areas of my life.  Barwis not only smells like a turfed football field; it also smells like my Acai Berry chapstick.  So, just like the Green Lantern puts his ring on or Spider-Man puts on his mask or Superman tears open his shirt; I also have a Super Hero Routine that includes putting my chapstick on and then I get to work!

I remember I had kind of an “off” day working at Barwis and it wasn’t until the end of it that I look at Jesse and exclaim, “I didn’t put my chapstick on!”  That statement didn’t make any sense to him but it made COMPLETE sense to me!!!  Can Superman really save the day without his cape?!

I remember pulling up to the Barwis Methods Training Center and being extremely nervous and a little bit excited.  When we opened the door and I wheeled in, we heard music blaring and met a man named Dusty at the front desk.  There were framed jerseys from all different sports on the walls.  The center smelled like a turfed football field.  That smell is so familiar to me now.  It’s comforting.  The music is just as comforting.  Dusty told us that first day that the music was too loud and not always appropriate.

We make our way into the workout area.  I saw a bunch of people working out doing all sorts of different things.  I was the only person in a wheelchair.   I felt a little bit intimidated but am comforted by seeing Mike.  He was stretching someone out.  By this time, I felt like I knew him already because I had watched his TED talk so much and I spoke to him on the phone when I made my appointment.

He comes over and introduces himself to me, my Mom, and my son, Sean.  We make our way on to the turf and he kneels down.  He extends my legs feeling the muscles in my quadirceps.  He tells me that all four muscle groups in my legs are firing and that is good.  I smile not really knowing what that means but if  he thinks something is good, I take that as something promising.

We make our way over to the squat machine and Mike gets me into a harness and explains to me what we are going to do.  I heard him explain it so much in the TED talk video I knew what to expect.  Knowing what expect and actually experiencing  something are two COMPLETELY different things!  I get hooked up to the Keiser machine and then I am standing!  Tall!  My body does not hurt when doing this and it feels good!  Mike asks what I think and I reply, “I’m short.”  I have been sitting down so long, I’m used to seeing the world from a 4’1 viewpoint and now that I’m standing, the view from 5’0 (my height when I’m standing) doesn’t seem all that different.  It’s a bit anticlimactic.  We start doing squats.  Mike is holding my knees encouraging me the whole time with a “C’mon!” and things like that.

I don’t remember how many reps I did but I DO remember that he eventually unhooked the hooks that were attaching me to the air machine that was helping me and he told a man named Jesse to hold my hands.  I was SHOCKED!  You mean I’m going to do squats ALL BY MYSELF?!  I told Jesse in a barely audible voice, mostly mouthed for him to “not let me go!” with my eyes as wide as saucers.  He nodded and laughed a bit in understanding and told me that he wouldn’t.  Jesse came around to face me and put his hands over my hands on the bar and Mike stood behind me.  I proceeded to squat with both of them encouraging me.  I don’t remember how many we did but enough until Mike was satisfied.  He told me that we were going to work on my hamstrings next.  He left to get the equipment ready.

As I am sitting in my chair watching them prep the equipment Larry Foote walks over and introduces himself to my son and me.  He had a towel in his hands and I had my hands on my wheels.  I told him that “I know, [who he is] we see him on TV.”  He told me that he looks bigger on TV which I thought was true.  I told him, “I was thinking it!  I wasn’t going to say it but I was thinking it.”  He laughed and told me that he gets bigger closer to the season.  It was summer and training camps weren’t set to start until the end of the month.  He asked if I was a Steelers fan and I shook my head and told him that “I’m from Detroit. I’m a Lions fan and a post-season Packers fan.”  I wondered where I was getting all of this nerve from to tell the middle linebacker from the Steelers that I am not fan.  But, the new found nerve continued.  I told him that I saw the Super Bowl (a few years ago vs. the Packers).  “You guys didn’t bring it!”  He agreed and blamed the offense.  I told him “I know.  I saw it.”  I told him that if they were playing the Lions, I’d watch.  He told me that they play them in Pittsburg this year and that if I want tickets to tell Mike.  It’s only a 4 hour drive from here to there.  Then he goes back to work and Mike comes back.

Mike leans over and picks me up!  I know that no one has done this to me EVER at this point in my life.  He carries me over to the blocks in front of the hamstring machine.  He sets me down there and tells me what we are going to do.  I brace myself and do what he tells me to do.  It is difficult.  I summon my inner warrior and “grab my guts” as my Dad used to say.  I’m surprised that these grunts are coming out of my mouth but I don’t try to stifle them.  When I am finished, Larry Foote walks over and rubs my back and extends his fist.  I look at it and say that my hands are holding me up.  I felt like I was going to fall over if I let go but I couldn’t leave Larry Foote hanging!  I extend my right fist and we fist bump.

Then Mike lays me on the turf and he stretches me out for a while.  It’s been a tough day.  I’m tired.  It was like 11:30 when we left.  It was 9 when we got there.  I leave feeling good.  I see this as the beginning of my road to actively walking even though I have done many things thus far to ready myself for this point.  I leave feeling that Mike is confident that he can help me.  I’m not too far gone or beyond hope and that feels good.

I had been seeing an MRT (Muscle Release Technique) therapist named Parker Whittaker at Whittaker Therapy in Plymouth, Michigan every Monday for a little over two years when he began telling me about Mike Barwis and the work he does.   It was about six months after that, (in the winter) that Parker told me that I was going to see Mike in the summer  (I am a teacher and summer is my “down-time”).

I began watching Mike’s TED talk.  I must have watched it at least 30 times and cried each and every time!   Part of me did not believe that he could help me.  I felt that I was too far gone to help.  I had been in a chair for 8 years!  It was too late.  I was beyond hope.  I thought it was dangerous to hope for life outside this chair.  In retrospect, I see it differently but back then I was afraid to think of life taller than 4’1.  (My wheelchair tech, Ty, measured me and that is how tall I am sitting down).  Parker told me that he “didn’t think I was meant to live life in [my] chair but I wasn’t meant to forget it.”

Parker ALWAYS said the MOST profound things to me!!!