Category: Barwis Methods

Jesse has worked with the former paraplegic people such as Brock and Chris.  He also currently works with 3 women with MS.  I am one of them.  The last “Walking Wednesday” (October 30, 2013), I had a set-back.  I am still dealing with the aftermath of that set-back.  Jesse told me sometime last week that people who are paraplegic from an accident, have 1 accident and they move forward from that day.  With people with MS, EVERYDAY is an accident.  He said that to me and it made complete sense!  It wasn’t as if I already hadn’t lived through these “accidents” everyday for the last 13 years but to hear a person without MS completely GET IT was almost overwhelming.   These accidents are NEVER fatal.  Sometimes they total my car and sometimes they are mere “fender-benders.”  Everyday is different.  Most days they hurt.

I had a friend tell me that an MS diagnosis is not a death sentence.  Instead, you have to LIVE with it for rest of your life.  That “living with it” is hard sometimes.  It’s frustrating having my brain tell my body to do something and it doesn’t.  It can’t. or it won’t.  Something that I used to do effortlessly before is now impossible for me to do.  Or I need help to complete a task I used to complete without thinking before.  THAT fact is the hardest to deal with!!!  I get frustrated when I need to ask someone to help me.  It’s humiliating and I don’t like it.

I am blessed with a mother who will help me with anything and not make me feel bad for asking.  That fact doesn’t mean that I don’t feel bad about it.  I greatly dislike asking in the first place.  With this last set-back, she had to and still has to help me with A LOT.  I looked at her with beseeching eyes and asked if she knew that the help I need right now isn’t forever.  It has to get worse before it gets better, it has to hurt if it’s to heal,  everything worth having is hard to get.  This set-back was just a means to an end.  The end will be me walking.  If she knew this, it would be easier for me.  She looked at me with tired eyes and said, “yes, Jennifer.  I know.”  As long as she could “steady the course” with me.  It would be okay.  “This too will pass.”  It is hard sometimes in the midst of the all the bad to remember this but what other choice do I have?

Yesterday at work, I was nervous how “Walking Wednesday” would go for me.  I felt extremely tight in my legs and my hips were turning in oddly – making it hard to stand.  I didn’t think it would go well.  I asked Phil to “warm it up, Kris” (I always say that to him).  He stretched out my legs while I sat in my chair.  Then it was, “go time.”

I told him that I get 4 downs regardless of yardage.  After 4 downs I usually am exhausted!  Phil and an intern named Lindsay were working with me.  I stood on my own and they handed me my crutches.  I was able to get 7 yards.  I sat and rested and Phil asked how it was feeling.  My left leg felt strong but my right leg (I call that one my “poop” leg) didn’t feel very well or strong at first but it was slowly feeling better.

My second down, I was able to get enough yardage for my conversion but Phil and Lindsay had to pick me up from out of my chair.  I talked with Phil about “technique” and standing tall.  He told me to get my butt underneath me and to push my hips forward.  He said to put a lot of my weight on him and just to get steps off.  I’m not sure of the yards I got on each down after that but the biggest thing that sticks in my mind is that even when I could not get any more steps off; I remained standing.  I didn’t collapse on the turf or into my chair.  It wasn’t because I wasn’t tired, because I was!  With Phil coaching me and encouraging me to continue to remain standing until my chair was pushed up behind me; I was able to do it.  I was standing tall!  That felt REALLY good!

This “Walking Wednesday” wasn’t the MOST yards I have clocked but it felt the BEST so far!

TOTAL YARDAGE = 84 YARDS!!!

I stood for 103 seconds yesterday.  Standing for 1 minute and 43 seconds may NOT sound like a lot; but it IS… to me.  I started out on Monday (the first time I worked out after my “setback” got better) standing for 43 seconds and I increased today after walking on Wednesday for 20 yards.  I really feel that I have turned a corner in my journey to walking.  Jesse told me that yesterday.  He said it’s just like with pro athletes. You build them up and then you have to break them down and then you’ll build them up again.  I told him that I was glad it was him who broke me down the past two times. Jesse’s leaving Barwis for a better opportunity for himself (I’m HAPPY for him and wish him the BEST) so he won’t break me down again if I need it.

I worked with Phil yesterday as I did on Monday.  My second try at standing, he flip-flopped his hands on my lap as I was sitting in my chair and told me that it was good luck and to stand up.  I laughed and prayed while I was standing.  I told Phil that I’m religious so I was praying as I was standing and because I need the utmost concentration as I am doing something SO difficult; I close my eyes.  I stood for 43 seconds the first time and 30 a piece the last two times.  After that, we did the normal hamstring leg curls and extensions.

I only have been thinking about how difficult something so easy as standing up is because I was thinking about my recent setback.  In this recent setback, I had a huge bruise on the back of my right  thigh and my right leg didn’t work. I couldn’t put weight on it.  It felt like my thigh and my calf were dipped in acid water. They hurt,  I was stretched out on my last “Walking Wednesday” because it was obvious I wasn’t getting steps off easily. My right leg was really tight and needed to be stretched out.

I got a great stretch which was needed (that caused the bruise).  I showed a colleague at my school (the PE teacher).  He said it was the muscle fibers tearing from the stretch and because they really haven’t been used in a while.  It HAS to HURT if it’s to HEAL; I understood that but I really couldn’t walk. My right leg got really swollen and my Mom wrapped it in one of my Dad’s old compression wraps.  That was on October 30, 2013. Since then, I have just had Jesse work my legs and ankles to get the swelling down and then I started doing squats in my wheelchair. Just standing up and down in my chair. Jesse knew that we had to wait out my leg being swollen and this huge bruise on my thigh. He told me today that I was finally getting the better of the setback.  He fist bumped me and Phil had to put me in my car when we were done working.

It has been really hard work since I came here but as I said in my interview that Connor put on Facebook, I’ll do anything to walk.  I am doing just that. It is extremely hard as Chris said to me yesterday, but completely worth it!  Chris said that you would never become a doctor or a lawyer by just giving 50% so I have to give this my ALL.  I am lucky that my Mom understands the principles that they use at Barwis and she has helped me through both of my rough times.  I didn’t know how long the rough times were going to last; but I am happy that my last one is coming to an end.  I didn’t cry this time.  I just was REALLY frustrated!  It’s frustrating not to be able to straighten your leg when you sleep and when you try to, the acid water burns more.  It’s frustrating being confined to your house on the weekends.  And it is frustrating needing help with things you have done by yourself for over 20 years. I am glad that this frustrating time is finally coming to an end.  Everything worth having is HARD to get.  I’m going to get it!!!

Last night, as I was standing and attempting to take steps, I felt my body resisting me.  I felt it in my legs.  It was the first time that I consciously felt this feeling.  I wanted my legs to take normal steps.  They had a different plan.  They wanted to turn in when I wanted them to turn out.  It was a fight.  Is resistance really futile?  It didn’t feel that way.  I feel that their will is stronger than mine at times and that STINKS!

It felt that way this morning as well.  Sometimes, I fall asleep thinking I will wake up in the morning and my body will feel normal.  It won’t hurt.  It won’t resist when I want it to move a certain way.  But then I wake up in the morning and things are the same.  It was more pronounced this morning.  My legs were painfully stiff this morning.  Everything was more difficult this morning.  No wonder I wake up at 3:45!  EVERYTHING takes a bit longer when I feel this way.  Mike told me my first day at Barwis that I would always have MS but getting me more mobile is the goal.  This morning was not a cool morning to have MS.

I don’t want to give the impression that it is all “rainbows and butterflies” all the time because it is not.  Who wants to focus on that though?! I don’t.  There were 2 instances while Parker worked on me where my body felt completely normal.  But then I moved; and it was gone.  I had that feeling once so far at Barwis when Jesse was stretching me out.  But that feeling too, was fleeting.  I just have to take the day as it comes and deal with it accordingly.  I hope it is a GOOD day at training today…

I remember as a kid, seeing this Disney World commercial.

This commercial stayed in my mind as I thought about meeting Brock.  He was my inspiration!  It was his story that made me believe that Mike could maybe help me too.  His story was the reason that I really started thinking about walking being a possibility for me.

Yesterday I was having a rough morning.  As I was teaching (I’m the Reading Specialist at Cesar Chavez Academy Middle School and I run two reading programs), I was sitting with a student who was about to start a timed reading with me.  Before we started, I took a deep breath and thought, “this hurts!” I didn’t know how training was going to go and I was nervous as the day wore on.  I get into Barwis Methods and I am greeted by the guys who work there.  I tried to be upbeat but I think I’m one of those people whose emotions show on their face so I was thinking the guys could see through my smiles and “I’m alright” responses to how I’m doing.  I was sitting in my chair waiting for my time to start watching the high school kids working out.  I am amazed at all the high school athletes and how much they can control their bodies. Walking around seems effortless to them because it IS for them.  It ISN’T for me.

As I was sitting watching them, I turn my head because I knew someone was sitting in the chairs to my right.  I probably did the double take, mouth gaping, eyes bugging out thing because it was Brock Mealer sitting in those seats!!!  I wheeled over to him and shook his hand and told him that I watched Mike’s TED talk about 30 times and cried every time!  I was so excited to finally meet and talk to him.  I was a little bit embarrassed by how rough my hands were when I shook his hand but he knows what it was like “walking on your hands” by being in a wheelchair.  I asked him a bunch of questions and I wished I was a college freshman with one of those recorders to tape everything the professor says in case it is on the test.  Like that college freshman, I wanted to remember everything he said to me.  He said it was “crazy” walking again and that it IS a transition to go from a chair to walking.  He said he just asks people to carry things for him.  He said some things were easier being in a chair but… and trailed off with a shrug.

Phil (I was working with him today) came over to sit as Brock and I were talking.  It was so COOL talking with Brock!!!  I needed that boost today.  I needed that reminder that it IS possible!  Brock told me he does back pedal at times (like I feel like I am right now!) but he said he comes back stronger.  After Phil called me, “chatty Cathy” I said my goodbye to Brock and went over to start working.  Phil could see that I was so star struck having seen Brock, he asked why I didn’t take a picture?  I told him that I didn’t have my phone so he calls Brock over said he would take the picture and send it to me.

It was SO cool to see him!  I needed that and now I have a picture to remember this day!  Like that commercial I remember as a kid, he’s my Mickey Mouse.

 

As I am teaching my kids (the last day before Thanksgiving break), I am thinking of being thankful (obviously!)  I am thankful for many things: my Mom, Sean, my family, and my friends.  I have a job and I think I am MOST thankful for everyone at Barwis Methods!  I am SO glad that I have found them!  I see them three days a week and they have become my pseudo-family whom I love!!!  EVERYONE there encourages me and lets me know that it is OKAY to hope for a life beyond this [wheel]chair because it IS possible.

Today is “Walking Wednesday.”  On Monday, I stood for 112 seconds.  I just need 16 more yards to clock 100 yards.  All this, on Jesse’s last day.  I told Jesse I would get a camo shirt when I get 100 yard so I hope to get that 100 yards when Jesse is there to see me do it.

Regardless if I make those 16 yards today or not, I am already thankful for the strides I have already made and will continue to make.

Today, it was just me and Phil walking.  After we figured out the logistics of how we would work it, I got walking.  My first down, I got 8 yards. My second down, I got another first down for a total of 9 yards.  I was spent after that. I got 17 yards today. Denied on my third and fourth downs. I was so tired!

Grand Total = 101 yards.

Today was Jesse’s last day. I’m glad that I got a 100 yards for him to be there for it. I told him that he has to tell his Grandma about it and I have to buy a camo shirt.  He walked me out after I worked out and he told me he doesn’t do goodbyes. He gave me a hug and wished me luck and walked away. I called after him “thank you so much!” I called my Mom when I was in my car in the parking lot because she had my son. I felt a little choked up. I don’t do well with change; I never have.  I missed my exit on the freeway going to my Mom’s house to pick up my son.

Phil took a picture of Jesse and me.  I look really tired because I was.  I told Jesse that I would send him a pic of my camo shirt when I get one. I promised to wear it every Wednesday like I do my socks.  I told Phil that our photo opp will come at 200 yards.

I walked for OVER 100 yards and for that, I am thankful.

 

 

It had been 1 week since I was at Barwis last.  With the holiday, I did NOT go to training on Friday and I did NOT go on Monday either.  Sean and I had cleaning appointments at the dentist.  You NEED to have clean teeth!  I could tell me legs felt a bit tight but I figured Phil would “warm it up” like he always does.   He had asked me if my legs felt tight because it was wet outside and I said “yeah,” kind of noncommittally.  I guessed. After he stretched out my legs as I sat in my chair, he told me to stand up.  Standing still felt awkward.  It felt like it did when I first got my crutches 10 years ago.  It feels like someone was standing behind me with their hands on my hips.  As I am trying to stand, they are pushing my hips down toward the floor.  Whoever is standing behind me is pushing my hips down really forcefully!  It is a fight to stand!

Phil had me stand at the Keiser machine and use the bar to help me stand.  We tried that a few times.  Phil sat down facing me to hold me knees in place as I stood.  Standing was extremely difficult!  He had me do a few squats with my wheelchair behind me.  I would not do a full squat, just until my butt hit the chair and then I would stand again.  We tried THAT a few more times. As standing still was difficult, I began to let go of the hope of it being a “Walking Wednesday.”  Phil told me to head over to the table and that we would not walk today.

I will say that it is kind of sad to hear that.  I WANT to walk.  But I have faith in Phil just like I had faith in Jesse.  He knows what he is doing.  The walking will come like everyone has told me.  Mike has told me that there will be ups and downs and it is part of my journey.  It will come.  My Dad used to tell us kids when he called us and we would respond, “I’m coming” very lazily.   My Dad would respond. “I don’t want you coming; I want you here!”  As a kid, I didn’t understand that statement.  How am I going to get there if I am not coming?!  As an adult, I now understand the urgency that my Dad wanted us to be there instead of the lax “coming” reply we were giving him.  So, I don’t want the walking coming.  I want it here!

At the table, we did leg curls and extensions.  Phil worked on the muscles in my hips to loosen them up.  My legs and hips felt better, looser.  Phil told me we’ll work on them more on Friday.  I asked if we’re going to make it a “Walking Friday” then.  He shook his head and told me that we’ll keep the walking for Wednesdays.  He put me in my car when I was done.  As I drove home, it stated to rain.  It was sad.  It was dark and rainy and not even a good radio day in the car.

I wish my journey was linear.  I wish it just got better and better.  I wish my ability would match my desire to obtain it.  I don’t think I am asking too much!  I just want to walk!

This was my thought for today in my Mottos for Success book.  I thought it strange that now that I am ACTIVELY doing something to get myself able to walk again, I am having difficulty seeing it in my mind.  I’ve been dreaming about walking for so long, even if my dream is something mundane like cleaning the bathroom (I miss getting on my hands and knees to scrub the tub now that I can’t do it anymore).  I would say that 99% of my dreams are of me with an able body.  I often dream about running marathons or that I am a ballet dancer.

I remember someone from my parish commenting on me being in a chair and to get out.  That was about 4 years ago.  I thought I will be stuck in this chair for the rest of my life – she just didn’t get it.  Then 2 strangers the following year told me at work that they did not see me being in this chair forever.  Students who I have taught over the years have told me that they have had dreams where I am walking up the stairs at school.  I used to have visions of myself walking across the classroom when I used to teach English.  It is strange that NOW, I am having difficulty seeing it.  Even Dusty at Barwis Methods told me that he sees A LOT of people in wheelchairs (he works at the front desk) and there is something different about me.

I have to believe that it will happen.  Like, REALLY believe!  Even if I am having difficulty seeing it now, I have to work on believing.  Lately, I haven’t had dreams that are as vivid to me the next morning.  All my trainers at Barwis have told me it will happen and that they see it.  I have faith in them; of this I am positive.  I just have to get over the road block in my mind that I am having these days.  When I do this, I will have the “reward greater than I can imagine.”  In the meantime, I will work hard at training tonight.

It was in the summer when I first experienced this.  I remember I was with Jesse doing free squats.  I don’t remember how many we did but I remember being SO tired.  Jesse is encouraging me to “c’mon” and I REALLY was trying!  It got to the point where I could not do anymore.  I couldn’t stand up from the squat I was attempting.  My arms and legs gave out at the same time and I found myself collapsing onto the floor.  I felt my cheeks ignite into flames and I was SO BEYOND embarrassed!!!

I think it was Jon who walked over to us clapping his hands.  “Way to go to fatigue!  Way to go to fatigue!  Way to go to fatigue!” I was too embarrassed to look at him as Jesse walked over and picked me up and put me back into my chair.  We were going to rest a little and do some more.  I remember not understanding why they thought me collapsing was a good thing.  Chris talked to me about this just last month (a different Chris but still an intern).  He said it is hard to get people to push themselves to that point.  I told him that it’s embarrassing!  

Then I remembered what Mike told me that first day.  It is in the “overwork” that the muscles will find a way to tell the spine what they are doing.  My original pathways of communication between my spine and muscles are all messed up with scar tissue.  We have to “trick” the body into making new pathways.  I remember thinking as this was explained to me DUH!  I will walk.  If my body can go to level 10, they’re going to push it to level 15.  It is in between that level 10 and 15 that new pathways are being made.   I just have to get to level 15.  It’s not the easiest task and sometimes I “chicken out” but other times I can go until fatigue.  My guys just pick me up and put me back in my chair.  Jesse has done it.  Jon has done it.  Chris has done it.  And now, Phil does it too.  It did take a while for me to get kind of comfortable with this.  I consider myself kind of hefty and I can’t help with the lifting in this instance. 

I texted Phil and asked him if I worked hard at training last night.  He responded “very.” I asked him how so and he said that my stands (I stood for about 1:45) and leg curls and extensions were “good” and we hadn’t done manual leg presses in a while and he said they “weren’t bad.”  He DID have to come over from the other side of the bar to put me back in my chair once.  When he does it like that, I told him that now I know what the sled feels like when lineman have to push it at football practice.

I saw the Instagram video of me walking not too long ago (my son has an account).  I think that my steps now are more steady.  I think my body can go to level 20 now but they still push it to level 25.  My Dad was a sergeant in the Army in Vietnam.  He used to tell me along with the “grabbing my guts” and “being a man about it” that he knew I could do it because “the blood of STRONG Mexicans runs through my veins.” I’ve been thinking about him A LOT and I wear his socks to training often but NOT on Wednesday – that is reserved for my Duck Dynasty camo socks.  But I will continue to try to go until fatigue until I can just do it outright.  In the meantime, Phil will just have to pick me up.