Month: January 2014

Yesterday, I realized as soon as I woke up (because I HAD to go in to work WITHOUT students) that I am really having a difficult time with this EXTREMELY cold weather.  My WHOLE body hurt and was crazy stiff.  It was SO difficult to move.

I was nervous for “Walking Wednesday” because of how my body was reacting to the temperature.  Phil stretches me out and then Lindsay comes over and we started walking.  Or just got a flag.  False start.  Phil stretched me some more and then I tried again.  I got 7 yards.  Then 5.  Then 2.  Then 3.  I originally  thought I had 22 yards and Phil thought it was 17.  I thought about it and then realized in the middle of last night ( I woke up because I was warm under all of my blankets) that Phil IS right.  I don’t think I could get 8 yards on my 4th down.  What can I say?  I teach reading!  Math is HARD!!!  I’m going with Phil’s ruling on the field because 4th and 3 is A LOT different from 2nd and 8!

I punted.  I don’t have much faith in my O-line.  One day I will.  Soon.  But it did feel really GOOD to get at least ONE conversion!  I was satisfied.  I want to be walking NOW (see?! REALLY bad at the patience part!) but Phil told me as we went out to my car – YOU’RE WALKING!!!  True.  Chris told me today before I started that it takes a LONG time.  He said that I have to be patient.  I will chalk “Walking Wednesday” #15 as a lesson in patience.  I REALLY stink at these lessons!

TOTAL YARDAGE = 156 and 2 steps

This word (the title of the post) originated sometime in September or late August.  It was before Adam was “Phil” and Jesse was the lead guy working with me.  I would come into Barwis and Adam would ask me how my legs were feeling.  I always would say something about my legs being tight or hurting or something.   (I was being honest).   Adam told me that he just wanted me to come in and tell him that “I’m fanf***ingtastic!”  (He’s  somewhat of a potty-mouth).  I never could say this honestly.  …Until yesterday.

I get to Barwis a little bit early because I did NOT go to work yesterday because my foot (my left) was messed up and I went to the doctor’s office to have them take a look at it.  I really don’t mess around with problems with my feet because I have reduced blood flow in my legs (that’s why it took six months for my broken ankle to heal) so it can lead to bigger problems.  There was A LOT of slush in the parking lot so I called Dusty to have him send Phil out to get me.  I felt I was going to slip if I tried myself.  Phil runs out and helps me out of my car.  Once in Barwis, I can leisurely wipe the snow and slush off of my wheels.

Phil stretches me at the Keiser machine and I was a bit nervous because my right leg felt really tight and my left foot was hurting a little bit.  I wasn’t sure what kind of showing I was going to have.  Phil sets my feet and tells me to stand.  It was REMARKABLY easy to do!  My right foot was reluctant to join the party at that point so he had me sit again and he stretched my right leg a bit more.  He sets my feet again and I tell him to hold on to his socks.  I stand with BOTH of my feet on the floor and *BINK* with ease.  Then we started doing quarter squats then half-squats using my wheelchair as a reference.  I’d squat until my butt hit my wheelchair and then he would tell me to stand.  I’d *BINK* EVERYTIME!!!  We must’ve done this 12 or 15 times.  Then he tells me sit and rest and agrees that I am STILL a “sock knock-er off-er” when I ask.

For the second set of squats, I was going to keep count.  I did 11 then had to rest.  He asked me something (I don’t remember what) to which I reply, “because I just did 11 squats!”  He comes back with, “why didn’t you do 12?”  Oh, okay.  Challenge accepted!  I did 15 the next set.  I told Phil that it was a bit anti-climactic that he is NOT super excited!  But I WAS super excited for the both of us!!!  We were doing the squats pretty quickly and I figured that it sounds more impressive if I call out a BIG number upon standing.  So, on one of the squats I stand and say “694!”  I was throwing out big, three digit numbers for each squat I successfully completed with a *BINK* as if that was the number rep I was on.  We did one more set of squats (I did 7) then we did stands.  It felt REALLY  good to stand and squat SO well!!  I’ve kindof been in a funk lately, so this was exhilarating!  When I am getting ready to leave, a dad of an athlete (she must be in high school) asks me if I really did 600 of those [squats]?  I smiled and laughed a little and told him that “I did like 11 but 600 just sounds like a better number.”

When I stand at the bar, I am able to find the exact spot where I feel like I am completely in balance.  I told Phil that I could stand for days!  And I was standing for a long time for awhile!  Phil left for a minute while I was sitting.  The camera guys were there (Barwis is doing a TV show coming up) and they ask Phil to demonstrate the Vertimax (one of the machines that athletes use there).  They told him to jump a few times and I call to him to “do 12!”  He tells me to “stand up!” and I did.  When he was taking the bands off and getting off of the Vertimax I call out, “I’m STILL standing!” I continiue standing and it is apparent that I have reached my limit at that point.  I continue to try anyway and feel good that I am going until fatigue. My quads are shaking!

Phil takes me out to my car and I am able to get into my car ALL BY MYSELF!!!  I look at him and say, “That was fanf***ingtastic!”  I completely meant it!  I felt my eyes light up when I smiled as people have told me that I do when I am REALLY happy.   I sat in my car in silence (running because it is FREEZING but NO radio) and text Jesse, Mike, my cousin Kimmy, and a bunch of my friends.  It WASN’T even “Walking Wednesday” but I was SO excited that I had to spread the news anyway!  My legs feel like shaky jell-o and I feel adrenaline surging though my entire body!  I think I sat in front of Barwis in silence and drinking my water for like 40 minutes.  I was trying to decide if I was going to cry because I felt TONS of emotion built up inside of me and didn’t know how it was going to come out.  As I get onto I-96, it is apparent that I am NOT going to cry so I smile.  It was a crooked smile that really looks like a frown but it’s a smile that my Dad used to make ALL THE TIME.  I felt myself making one of his faces and that made the smile-frown more pronounced.  My Mom told me that it was my Dad smiling with me on the way home when I told her about it.  I like how that sounds!  I’ll take it!  I REALLY “grabbed my guts” this time, Daddy!!!

Reese helped me into Barwis yesterday.  I got in and wiped my wheels off that were full of the snow that was coming down. I asked Phil before we began if I was going to get harnessed again today.  He snapped “I don’t know!”  I told him, “Don’t be mean to me again, Adam!”he kind of laughed at that and he stretched me a bit at the Kaiser machine. I was nervous about standing because my right leg was SO tight. I asked why it is doing this now? It hasn’t done it before. He told me it might be the cold that is causing this because it’s been SO cold for the past few weeks. Then he set my feet and told me to stand.

It was immediately difficult and I was envisioning that person standing behind me pushing my hips to the floor. Phil was sitting in front of me and he said as if to read my mind, “No one standing behind you pushing your hips down! Fight! Keep fighting!” I think that was what I needed to hear. I continued to fight and continually did quarter squats to try to get myself to stand upright.  Eventually, I got myself to *BINK.*  He told me to hold it there and keep standing. Both of my feet were on the floor this time and I was standing upright. It was SO difficult! I would stand until he told me to sit and rest. We did this a number of times and he would press on my lower spine to help me a little bit so I could *BINK.*  I felt myself shaking, both my arms and legs. It was SO tiring!  But, I would continue to stand until he told me to sit. My eyes were closed and I was picturing new pathways being set in my leg muscles so I continued to stand.  It felt really good and I think that I knocked my OWN socks off! We fist bumped and I stood a few more times. I was COMPLETELY tired!

I am sitting on the table and we did leg curls and extensions. We haven’t done those in a very long time and it made me feel like I had a good showing at standing so I could complete this task as well. After we did some curls and extensions, Phil had me lay on my back and he stretched me for a while and then he told me to raise my knees (one at a time) to my chest and I STILL could do it!

I was I was SO tired yesterday. But it felt really good that I was doing better than I did on Wednesday. It’s almost like now I feel myself on the rise again. So that excited feeling of anticipation when you’re sitting in a rollercoaster and it’s click, click, clicking to the top. That’s how I feel right now.  I know that it will stink going down and I don’t know how long it will last.  But it’s nice going up right now. I’m excited.  I wonder if I’ll get the guts to raise my arms?

 

Seems  as though it might be…

 

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.