Month: January 2014

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.

Connor came out to get me into Barwis yesterday because of all of the snow.  He saw me pull up  from his office.  It took awhile to get my wheels wiped off from all of the snow.  Oh, I REALLY don’t like snow!!!  So Phil comes over and we stretched by the table because there were people sitting in the chairs.

I told him that I was okay if today didn’t go well.  I talked with my cousin Kimmy the day before and she helped me get a different perspective on things.  She said maybe I should set my goals smaller and once those goals are achieved set them a little higher.  Then she pointed out all the goals I have already achieved and how they aren’t actually LITTLE achievements:  I’ve gotten out of my chair, I’ve stood, and I’ve hugged my boy while standing, and I’ve taken steps – over 100 yards.  She told me to not focus on my big goal (walking) because that WILL happen; it will just take longer than anyone wants (ESPECIALLY ME!). And she told me not to forget or take for granted all of the things I have fought SO hard to get back.  She told me that she knows it’s hard, frustrating, and easy to give up.  She wanted me to see all of the achievements for what they are – a gift, a step closer.  I liked how all of this sounded!  She was right!  But then it was time to start walking…

I get situated and Phil brings my crutches over and we got help yesterday.  I think his name was Mark.  Mark and Phil get me standing and I take one step and then another… and that was it.  Phil takes me back to the table and he stretches me.  Phil had wanted to NOT walk yesterday.  We went to the Keiser machine before getting ready to walk and it was incredibly hard for me to stand.  He told me that I can’t walk if I can’t stand.  I think he saw the look on my face and then he said we could try it.  2 steps.  That’s all I got.  Bummer.  My right leg kept resisting him as he was stretching me.  I told him that it was doing the same thing to Jesse in the summer and I told him that I told my legs with a pat on them, “C’mon legs – Jesse is a friend.”  I told Phil that maybe I should tell them that Phil is a friend too, or maybe I should call him Adam.  He laughed and the resistance continued.

I drove home in silence.  The radio was on but I wasn’t listening to it.  2 steps.  That was it.  My son asked me how “Walking Wednesday” went and I shook my head and just said “Two steps.”  He could tell I wasn’t okay with that and didn’t ask anything further.  I texted Jesse and said “Two steps.  How frustrating!!!  Some “Walking Wednesday.”  He texted back to “keep working.”  I told him that I will and asked if it really was going to happen.  He said “You know it will.  But you also know it won’t be easy.”  I texted back “True.” And that Sheryl Crow song popped in my head and then I texted back “But no one said It’d be this hard.”  He responded “It’ll be difficult” and I asked “but not impossible” and he says, “Not at all.”  Then I said “Ok then” and got ready for bed.

I laid in bed for a long while.  I thought back to when I cried back in July because my legs hurt so much.  Then I thought back to the end of October beginning of November how they were hurting again when I got that BIG bruise on the back of my right leg.  I didn’t cry then just like I didn’t cry this time.  I told Phil when he was stretching me that “I have been coming here for 6 months already” like, “come on already, why am I not walking?!”  He said,  “Yes, but you were in this chair for how many years?”  So I told him, ” 8.  So it’s just like when you break up with someone.  For every year you were together, it takes a month to get over them.  So then in two months I will be walking!”  He laughed and told me that he doesn’t think that translates the same in this instance.  It would be nice if it did.  But, it doesn’t.  So my goal for now is to take that third step.