Author: Jen Rios

Something Else

During the week, I call to Sean to make sure he’s up for school. It takes me a moment for my body to,“warm up” once I open my eyes so lay in bed until after he’s out of the shower, dressed, and just about to leave for school. He helps me get out of bed. I have a big, four-poster queen sized bed.

I got this bed when Sean and I moved into our second apartment.  As my disease has progressed, I think the bed is too big for me now. The frame is too high off of the floor.  I can’t get over the fact that it’s paid for so I can’t seem to get rid of it just yet.  Because it is so high off of the floor, I need help to get me out of bed in the morning.

Sean got out of the shower Friday and he was in his room which is right next to mine so I called to him and told him the beginning of this meme that I read Friday morning:

All I said was, “I got called pretty today” and Sean responded with a somewhat indignant, “By who?!”  It’s just been Sean and me for pretty much all of his life. Then, I read the whole meme and started laughing hysterically!

He came into my room because he was just about ready to leave for school and I was still giggling as he put my shoes on and grabbed my ankles to pull them  sideways off of the bed.  Then he grabs my left hand to help me sit up. Since my knee has been hurting so badly lately, he just pulls me off of my bed, picks me up, and puts me into my wheelchair.

It takes me a minute to  move my arms so he buckles me into my chair.  I was still smiling thinking about that silly meme. He leaned  against my bedpost for a moment and said something like, “Mom,  you’re something else!”  I asked him why and he told me that, “You wake up and you are five steps behind everyone else  and here you are laughing and smiling when anybody else would be curled up in a ball and crying.

I was a little shocked to hear him say this. I kind of looked down and said quietly, “Oh, I cry!“  he leaned over,  kissed my forehead, told me to have a good day, unlocked my wheelchair, and left for school. I sit there in shack for a little while. My kid IS something else!

He’s told me before that he can’t remember a time when I wasn’t in a wheelchair which breaks my heart a little bit.  On days when my hands aren’t working too well and I can’t grasp both a fork and knife to cut my food. He will cut it up for me before we begin eating dinner. The other day, I told him to get forks for both of us and he comes back to the table with two serving forks.

I started to laugh asked why he  got them.  He just sat down and said, “They’re forks!” blessed himself and started saying Grace.  I joined in and guessed that I was eating dinner with a serving fork!   I told him that we should pretend we had shrunk or something. He  looked at me and just kind of shook his head.

I asked him last night what he meant about me being, “Five steps behind” and he told me that it’s so much harder for me to do the simple list things and takes me so much longer – but I still do them.”  I hope that he learns some kind of lesson in seeing all of this…  I will eat dinner with serving fork anytime he wants to!

More Than I Can Say

The last time I trained at Barwis Methods was September 20, 2016. I injured my knee on September 21, 2016. I had an appointment with Dr. Frush the following Tuesday on September 27, 2016.  He knows about Mike’s work with helping people to walk and my work with the First Step Foundation at Barwis Methods.   After his examination of my knee, he warned me to not go back to Barwis Methods until my knee stopped hurting.

It is May 2, 2018, going on 19 months later and my knee STILL hurts.   I’ve had surgery  on my torn meniscus and a tendon scrape in addition to two MRIs  and countless doctor’s appointments with Dr. Frush and Dr. Moore.  I saw a post from Mike Barwis and he was with Brock Mealer about the opening of a new center in Florida.

It squeezed my heart because I miss Barwis Methods more than I can say!   I trained there from July 12, 2013 to September 20, 2016. I was there two or three times a week where I consciously worked on getting stronger and walking with each one of my trainers there who believed that I would one day walk!

I have the biggest ache in my chest because I miss it so much! I once to talked to Sean about muscle training rotation because he was working out during football season. He told me that you have to change up the muscle groups you work each day. I told him that every day I work at Barwis is “leg day.”   Because it really is! But I can’t be there with my hurt knee and that hurts me more than I can say!

But Then I Heard Him Speak

Everyone knows that I am a HUGE GMFB fan!!!  My weekday mornings begin with turning the TV on before I even have my contacts in. Today, it was Whiteboard Wednesday.   Peter Schrager chose Jordan Mailata as his answer so then, they would cut to his highlight reel. They have talked about him before and he is the Australian rugby player who is making the transition into the NFL. He’s super tall and his highlight reel is impressive!

Toward the end of the show, they were speaking about him and they cut to the interview with him when he was on Good Morning Football the first day of the draft.   It took a moment for me to realize that I had not seen this before because it was that morning that I went with Sean to get his braces off. I had to go with him because I am the “responsible party” for his braces and I needed to sign some things.

They showed an abridged version of the interview on the show and I was amazed! First off, he is a really big dude but then, I heard him speak! 😍😍😍

I have ALWAYS loved accents!   I remembered having a conversation with a  former colleague about 10 years ago about how much I liked accents and he asked me if there was an accent that I did NOT like. I thought for a moment and said,  “Mine.”

As I write this, I am reminded of a class I had in undergrad at U of M.  It was an English class taught by Dr. Smith. I went to U of M Dearborn so  we had smaller class-sizes.  Departments were smaller and I had Dr. Smith for a couple of classes. I decided in my first class that I had a big crush on him! It was in my second class with him that I can’t even remember why he did this but it went with the conversations we were having as a class. But, he taught the back end of the class speaking in various accents.

I remember taking notes on what he was saying but I think it was somewhere around the Irish or Scottish accent that I stopped writing, rested my chin in both of my palms, and I am sure that I had a starry eyed look in my eyes!  The classroom was small and I’m sure he saw me! I almost was embarrassed as I gathered my books at the end of class.

I didn’t need to take any of his classes the following semester, but I remember he sat in on one of my classes to evaluate the professor. He was sitting in the back of the class as I walked in and put my bag down and was talking to a friend who was already seated in the class when I heard, “Hello Jennifer.“  This must’ve happened about 15 years ago but I can still remember that my face burned as I looked at him, smiled, and with an embarrassed look, quietly said, “Hi Dr. Smith.”

I found the complete interview on YouTube and had to post it here so I can watch it multiple times,  whenever I want .  I love his accent!

Then, I saw he did another interview at the draft with Rich Eisen , Charles Davis, Daniel Jeremiah, and Mike Mayock so I posted that here too.   I am not trying to be a regular season Eagles fan but I will be Jordan’s fan because I heard him speak…

 

5.1.18. “It Goes On”

My knee popped out this morning.   I hadn’t felt that pain in a little while, I mean my knee has been hurting this entire time, continually since September 21, 2016; but I haven’t felt, “knee pop out” pain in a little bit of time. I thought that pain was over with. I’m still trying to get used to the” “gnawing, teeth clenching, pain in my lower jaw” feeling of pain I feel now but I thought I was done feeling that, “knee pop out” pain.

Apparently, it was not.   I’m not sure if I feel or hear the click of my knee popping out of it socket more but either way, the feeling is intense!  Immediately following my gasp and bugging out eyes is me trying to say something but all that really comes out is, “my knee” and my frantic pointing with my right hand. My mom knows what to do. She placed one hand on my ankle and the other on my calf and felt my knee as it clicked back into its socket, and by the time she looked up at me and said, “I felt it [pop back in]”  I was crying.

I would describe them as pitiful tears. They were quick, silent tears streaming out of my eyes in hot streaks down my face.  I caught the look in my Mom’s eyes and I tried to figure out what kind of look it was.  I talked to her about it this evening. I told her that I wasn’t sure how to describe the look that was in her eyes. She asked me what I have to come up with and I said, “Sad.”

She agreed with my descriptive word. She said, “That’s enough now. That’s enough pain.”  The reality is it’s not. It’s not, because it continues. It’s going on 19 months. It would be terrible if I could not remember what a normal knee feels like just like I don’t quite remember what a normal body feels like having MS.   But, actually it’s even MORE terrible having a perfectly fine left knee right next to the pained one.

I took a deep breath and I am praying for the strength to endure this ongoing pain.  My mom said, “Just like in Ben-Hur.”  I knew exactly what scene she was talking about. I have referenced this movie before here on my blog because for me and my brothers, it is a movie we have just about committed to memory because we’ve seen it so much.   The attached clip is  that scene when Messala is dying and he tells Judah about his mother and sister still being alive and being in the Valley of the Lepers.

My pain is just like Judah’s search for his mother and sister… “It goes on.”

May 2018 Faves

The time warp continues!

This album was released into 005 but I remember listening to it in the winter of 2006.

I used to clean my apartment to this album and so I’ve been doing my dishes and loading my crock pot to it now.   I used to get a lot more done in one run through of the album. Now, I have to play it a few times because I’ve slowed down so much. Here are my faves that I almost forgot about:

I’m not even sure what made me remember this album.

When this song was getting a lot of radio play, when we lived in our first apartment, I would listen to this song and Sean was quiet. It was probably the second or third time we heard the song that he would say right after she says that she carved her name into his leather is to seat,  “Love grandma” as if that is what she carved. I remember that we laughed and laughed!

It’s a different time warp but, I’m also listening to this album on Apple Music a lot as I clean my kitchen because of that Drake song that sampled Lauren Hill that Sean listened to as we drove, I have to listen to my girl L too!:

 

4.26.18 “Poop Out”

So, I have figured out now that if I am really excited about something, later that day and into the next day; I “poop out.”  A prime example of this is Thursday. Sean got his braces off.

   

I was so excited for this to happen in the days leading up to the appointment!  My friends and my Mom warned me to not be so excited because I would, “poop out.”   Sean said that I would fall asleep on the way home. My mom came with us to drive just in case.

Well, he was right. I, “pooped out” on the way home!   I was so extremely excited to be there and my Mom and I could sit on the couch in the back to watch him get them off. My Mom sat on the couch and she just put me close to it. The tech taking his braces off was named Holly. I told her that it wasn’t this exciting when I got my braces off 23 years ago and that I was so excited! I asked her some questions about his retainer use  after his braces are off.

It wasn’t until she was finished and Sean was in the bathroom that she came over to the couch and sat next to my Mom who was sleeping.  She tapped her leg, woke her up, and handed her a clipboard and started explaining the things she needed to sign when my mom looked at her and pointed to me. My mom told her that I was the, “responsible party.”

Holly turned and looked at me and asked, “Aren’t you his sister?”  I laughed and told her that I was his mom. She gave me the paperwork to sign and I signed it. I think I was so excited about this day because his teeth have  come a very long way!

Sean didn’t want me to take these pictures but I assured him that it would be a nice comparison when his teeth are straight. In this picture, I remember telling him to, “Show me his teeth!”   I took this picture on  June 13, 2015.

This picture was taken July 20, 2015. His vampire teeth had already started to move! These are the only two pictures that he let me take. I’m sure if he was a girl, he would’ve let me take more. I wanted to make a Flipagram of the progression. I just have before and after.

He’s had braces for three years. He started seeing the Orthodontist when he was seven. He needed mouth surgery to get four teeth pulled before he got his braces on and surgery after the braces were on to expose teeth that were below his gum line on his lower jaw.

He humored me to take this one picture before he went out because I told him that as a single mom, paying for this all by myself, this moment makes me really proud! He said that he hasn’t done much to be proud of then. I told him that this was not the proudest moment I have had because of him but the proudest moment I have had because of me!

Also, I think it takes me TWO days to fully recover after I, “Poop out” now!  #MSsucks!

My Girl, Lauryn

I am excited because for the last two Saturdays, Sean has driven me to church. Once I hurt my knee, I tried to continue going to church but it hurt too badly so I had to stop. I thought that after I recovered from surgery, I would make it back to church.

The continued pain in my knee has kept me away for almost a year and a half. After my appointment with Dr. Moore a couple of weeks ago, I learned that nothing will be re-injured in my knee.  It is stable and I just have to deal with the pain. What better way to deal with this pain then to get back to my spiritual home?

For me, going to church on the weekends is extremely important!  For years, Sean and I have been going to mass in the early evening on Saturdays.   I started going on Saturdays probably when Sean was in fourth grade and started track. His track meets were extremely long (he threw shotput which was at the nine am and ran the boys’ relay which was the very last event  at around four).

I would be there from nine in the morning to four in the evening. Most of his meets were at Divine Child because they had/have a good track.   It worked out easily for me just to have him push me over to the church when we left the track. I liked it a lot too because that meant I could sleep in on Sundays.

Because he’s driving,  We listen to what he wants. He plugs in his phone and we listen to his Apple Music play lists. I’m not a huge fan of his music! And he has told me that, “You never know how many swearwords are in a song that you really like until you are listening to that song with your mom.”

That is SO true!  I just skip to the next song after I hear three inappropriate things. He put on a new Drake song  when we left after mass and I immediately dug it!  I dug it because it had a sample of Lauryn Hill.   I had him play the song again and he’s asked me why because it has, “inappropriate words” in it. I told him that I wasn’t listening to the Drake part at all, I was just listening to my girl Lauryn! The song that Drake sampled, was my jam back in high school.

He told me that two of his friend’s moms like that song too and I responded with, “OF COURSE!  IT’S LAURYN HILL!!! He went out with his friends tonight and I am not putting that Drake song on my blog because it has bad words in it but I will put my girl, Lauryn, on so here it is!:

I HAVE to get reacquainted with this album!!!:

“Nothing Compares 2 U”

So, I guess old habits die hard. For probably the last six or seven years, I have been waking up at 4:30 to get ready for work.   I haven’t slept well for a couple of years anyway and coupled with my constant and continuing knee pain, I don’t sleep very well now. I am usually awake early to make sure Sean is up and getting ready for school. GMFB  is on at seven so I have to be up for that anyway!

This morning, I got an alert on my phone that I just happened to check just before 6 o’clock.  This was the alert:

Sean was in the shower so I just HAD to listen to it! I had never heard it before but I remember hearing that Prince was the one to write the song.  I hadn’t heard Sinead O’Connor‘s version of this song in so long! Her version reminds me of my birthday when I had to be nine.

My brother Steve took me to Fairlane mall and bought me a birthday present. I got white pants with black polkadots and a black vest with white polkadots. We went to Friendly’s to get a  couple Reesie‘s Peanut Butter Cup parfaits.   Sinead O’Connor’s version played over the mall’s speakers as we walked to  Friendly’s.

I remembered getting these with my brothers all the time when Friendly’s was in Fairlane mall  when I was a kid. I actually texted my brother this morning to ask what those parfaits were called. He told me that there are no longer Friendly’s in Michigan but they are in Ohio and are completely worth the drive! I told him that maybe Sean  and I will have to go on a road trip!

When Sean got out of the shower and dressed and ready for school, He came into my room to help me get out of bed before he left for school. As he put my shoes on, I told him about my birthday shopping trip with Steve and described what I got.   He thought that sounded ridiculous but I told him they were the epitome of cool! Especially if I wore a white turtleneck underneath the vest!

This song has been in my head all day long! I’m going to ask my Mom for a picture of me with those pants in that vest, I’m sure one has to exist! I remember getting those parfaits and they were garnished with a Reese‘s cup and whip cream. We would lick the whip cream off the Reesie‘s cup and place it on the napkin as we ate the parfait and the dessert was the Reese‘s cup.

A Passive Patticipant

I told Sean a few weeks back that, and it was more of just me making a statement to him that pretty much everywhere I go, I am the only person in a wheelchair.   It was just a statement of fact and I told him that it feels kind of weird. He thought about it for a minute and I told him that I wasn’t quite sure how I felt about that but that’s just the way things are.   None of his friends have parents in a wheelchair and when I’ve been to school functions for him, I am the only person in a wheelchair most of the time (sometimes there is a random grandparent).

 I don’t think this bothers me, it’s just the way things are. Well, I had an appointment last Thursday downtown at RIM (the Rehabilitation Institute of Michigan to get fitted for a different wheelchair).   I’ve been there before and I was prepared to see TONS of wheelchairs. Valet parking is half off if you are in a wheelchair. As we waited our turn to get our car checked into valet, I watched as a person was being unloaded from his van in his wheelchair.

I got a strange feeling in my stomach and chest that didn’t go away the entire time I was there. It took me until today to realize what that feeling was and to put it into words. That’s why am writing it here. When I used to still drive, I would load my wheelchair in the trunk and put my right hand on the doors to brace myself as I walked to the driver side to get into the car.   This was back when I was still driving with my feet. I was still pretty independent when I started driving with my hands.  When I taught, I had arranged for my kids to have a field trip to go see a movie and I had just gotten my hand-controls and my chair topper.

I remember all of the kids were loaded into the buses as I rolled up to my car door, opened it up,  got into the driver seat, operated the chair topper so the arm came down and pulled my wheelchair up and into the compartment on top of my car, and closed it. I was winding up the cord to the control wand with my feet still outside of the car as it closed.  The sixth graders were in the bus directly behind my car and could see me do all of this. And I will never forget that as my chair topper closed, the entire bus erupted into cheers and claps! “YAY!” I thought, “How cute are they?!”   I smiled widely and waved to them just before I swung my feet into the car and closed the door.   I had to drive separately so I could get us all checked in before the buses arrived.

As I watched this man being unloaded from his car, I thought about that day when those kids cheered for me. As the van pulled away, and it was our turn to check our car into valet, my mom got out of the car to assemble my wheelchair.  This is a pretty long process because I can no longer just throw my standard wheelchair in the trunk of my car or even have it pulled up into the chair topper. I have a customized wheelchair now, one that was made especially for me.  It completely comes apart to be put into the car and needs to be reassembled outside of the car before I can get into it. As my mom, or my son, are putting it together, I am seated in the car.   Most of the time, I have the heat on full blast because I am always cold now.

When the chair is fully assembled, my mom, or my son open the front passenger side door to get me out. Now, note that I said, “Get me out.”   There is no throwing my chair in the trunk and walking to the driver side door for me now. They have to pull my feet out of the car and onto the ground outside.   Once my feet are set, they grab my hands to pull me so I’m sitting on the edge of the seat.  After I have  rested for a moment, they lean in close to me so I can put my arms around their neck. They, “count it out” (mostly for my benefit)  to transfer me from the car seat to my wheelchair. Once in my wheelchair, they grab just below my knees to, Count it out” again to push me back so I am seated comfortably in my wheelchair.  Then they buckle me in. The whole time they are doing this, I just sit there. They both are quite adept at doing this and I am beyond grateful for it. I told you they are my “Sacreds.”

I was thinking about all of this  just before we got into the doors of RIM.  It has been so gradual, that I don’t even know how things changed from me zipping around in my wheelchair by myself to being a passive participant in the movements of getting into my wheelchair and being pushed.   How did I go from wheeling myself everywhere in my wheelchair to being wheeled by someone else most everywhere I go?!

This question was heavy on my mind as we got into the building. There are wheelchairs everywhere!  All different types of wheelchairs.   The only other place where I see multiple wheelchairs is at Barwis. But, at Barwis, they are my peeps! I didn’t know anyone at RIM so it felt completely different and I didn’t like the way it felt.  I felt uncomfortable and it made me miss Barwis so much more!   I told the woman at the front desk who I was there to see and she gave us directions on where we needed to go.

As my mom was pushing me kindof a long way to where we need to go, I was lost in my thoughts.   It wasn’t until my mom said, “That man was checking you out!” that I was torn away from my thoughts.  “What?”  I vaguely remember seeing a man with blonde hair with a polo and khakis on. He obviously worked there.  I didn’t believe my mom because I never have felt so invisible in my life but she was positive that that is what he was doing!

I told her that I wished I knew that or that I saw it because maybe it would make me feel a little bit better.  We have to go back in a few months so maybe I will see that guy then. I’m not really sure that matters though… I wish my knee would stop hurting so much!

Heroes

I saw this commercial for the first time on Monday. I wanted to write a post about it but all week I have not been feeling well. Sean left the hall light on when he left for school. I was sitting in my kitchen drinking my ginger water when I rolled into the living room to see something Kyle was saying on Good Morning Football when I saw the light.   I made a mental note to turn the light off when I finished my water. Ginger water tastes absolutely disgusting warm so I wanted to drink it all while it was cold and just out of the refrigerator.

I finished my water and rolled to the hall to turn off the light.  This commercial had just started but I was concentrating on keeping my feet elevated and off of the floor as I pushed myself to the hallway light switch.   Doing this has become increasingly more difficult.  I turned the light off and backed up just in time to see the tail end of this commercial. I heard the Arby’s guys say, “Gyro” and I laughed out loud!

I thought of my, “Heroes” Mini lesson that I taught my kids when I used to teach English, when I taught the novel, The Outsiders.

I had this really cool hand out that asked the students to write about their idea of a hero. It went along with the idea that Johnny Cade felt like a hero when he was saving the kids from the burning church.   I prefaced the lesson with these two songs:

I really liked the Foo Fighters song (reminds me of high school and Varsity Blues) and just needed another song about heroes so it wasn’t so random that I played Foo Fighters for my students. It also  illustrated the fact that everyone has different perceptions of heroes just like people have different tastes in music.  I remembered having my kids vote and no one liked Foo Fighters, they all liked the Mariah Carey song.

I saw that Arby’s commercial many times on The Football Network as I watched Good Morning Football.  I saw different versions all week! On Thursday, Sean picked us up some Arby’s for dinner. I got the turkey gyro (with no onions or tomatoes).  It was really good! Sean also brought me a mint shake because he knows that I love mint chocolate chip!   Nate wasn’t there all week on Good Morning Football. I missed him!