Month: February 2019

Rapt

I have been completely rapt by this whole story! It started when I shared this interview on my Twitter and Facebook feeds:

After watching this interview and crying when I showed my Mom, I posted this image:

I posted the interview that she had with Vanity Fair on my Facebook feed also. I tried to share that here on my blog but I am having difficulty doing so.

She says that her diagnosis is NOT tragic but I will say that 18 years in, I fear that my diagnosis is a bit tragic but back when I was one year into my disease, I still had so much more capability. The article touched on a lot of important things that will help the MS community which I am unfortunately a part of.

I have been told that I am not, “cool enough” to have an Instagram account but if I was, I would definitely be following her!

You Know What I Miss? Volume 3

Continuing with the focus on things that people don’t realize I can no longer do.

I miss reading.

First off, let me clarify a bit. I STILL know how to read! However, I can no longer get lost in a book and read all day. That was something I used to do and now that I am home all of the time, it would seem that would be a good thing to do. However, what has been happening recently is that green leopard print shows up on my book pages a lot sooner than it used to!

I have always been an avid reader! In kindergarten, we had a summer reading program where we had a paper to fill out and get signed by a librarian whenever we read a book. My Mom took me to the library all of the time! I remember being really embarrassed when my teacher told the class that, “One student has read 100 books!“. Yeah, that student was me.

I was in second grade when I first needed glasses. The eye doctor told me to only wear glasses when I read but since I read all of the time, I had to start wearing glasses all the time. One day, when I was 12, my Dad was tightening at the arms of my glasses and as a joke, he put them on. He was astounded that he could see out of them! It was shortly after that day that I got contacts which I still wear but that is a topic for another post because MS has also affected that.

I have 2 degrees which involved a whole lot of reading and I am grateful that I did not experience the green leopard print when I was in college. There have been many days in which I forewent sleep to read but those days are also gone. Not just because I’m an adult now, but because after a while of reading, the green leopard spots start appearing on the pages of my book.

When they start appearing, I try to push through and continue reading but as they darken, I have to stop and close my eyes to rest of them. I set a timer so that I read a total of 45 minutes a day. AT LEAST and recently, I’ve had to break those 45 minutes up into three or four different sections. It really kills me that reading just 45 minutes puts a strain on my eyes and know that I am 18 years into having MS, it does make me nervous about what the doctor who diagnosed me said so long ago. She told me that I was going to go blind before I died. I know I am not going blind just yet but my vision is a lot more sensitive now!

My eyes look completely normal and I act as if they still are but depending on different factors, (The weather, the temperature, my stress level, if I have eaten or not, and the list goes on) maybe I am not seeing so well. That contributes to the fact that I no longer drive. I hope this change in my vision while I am reading it’s not something permanent but I guess I will just have to wait and see.

BUMMER!

This morning, on GMFB they talked about the 2019 combine. They showed old footage of football players running the 40 at their respective combines. It really bummed me out! Two years before I injured my knee which has been another two years, I used to train at Barwis to walk the 40. I knew that when I did it, I will put it on Twitter with the hashtags, #RunRichRun and #StJude. That was my goal!

I was going to walk 40 yards with my crutches. That’s what I trained for at Barwis! My trainers, Adam, Nick, and Michael, knew I was going to do that. But today, I was bummed out because I was watching all these 40s and seeing commercials for Rich Eisen and I knew I wasn’t going to do that anytime soon. My knee STILL hurts!

I was too tired this morning to tweet at anyone on the show but I still checked Twitter on my phone. A woman who has been in my MS chats with me posted an abridged version of this video.

Talk about being bummed out! Sean says that I do not sound that bad at my worst but there are times where I can’t speak very well, just like her. When my Mom got here, I played her the video and cried! At this point, only Sean, my Mom, and my friend, Renee have heard me speak like that. I called in Sean late to school because of an orthodontist appointment one day and I spoke like that in the message I left for the attendance office.

That kind of embarrassed me! As we were beginning to complete our routine, My Mom could see that I was really bummed out and told me that I could choose the music we listened to today. I chose this song, my walking song!:

I chose this song as my walking song back in 2013 when my cousinT, Shannon, accompanied me to Barwis, back when I thought I would be walking soon! I didn’t know then how things would play out years later and I am not walking! BUMMER! I haven’t even done the #RunRichRun 40 yard dash! This song reminds me of Barwis and my hope of walking! As we were getting me ready for the day, my knee popped out! BUMMER!!!

Laughter

Today, I had a memory of my Mom, my Dad, and me driving and laughing just after my Dad’s first open heart surgery. My Dad sat in the back with a pillow and my Mom drove. As we all were laughing, my Dad clutched the pillow to his chest and begged my mom to stop making him laugh because it hurt! My mom vaguely remembers this instance.

It was this memory that made me think about how much of a large role laughter plays in my life. My Mom and I work so closely together everyday that she is in-tune with me. She understands and can see in my face when I am in pain so she will not offer comic relief but rather stay quiet. Either she sees it, or she hears me say, “My knee hurts!”

There is so much about having MS that is NOT FUNNY but I laugh when I can! It’s not the laughter that causes me pain like it did my Dad but rather, I am in too much pain so I do not and cannot laugh. But, WE laugh when WE can! After all, laughter is such good medicine!

Able-Bodied

A student of mine a couple years into my teaching, when I still taught English, told me about a dream she had about me. She was really cute about telling me about it. She didn’t want to upset me. She told me that she had a dream where I was walking up the stairs in the school. (I had just gotten into a manual chair then) and I remember smiling and feeling warmth in my heart! Back then, I used to dream all the time about walking! I’d have dreams where I was running a marathon (which I have never done, nor do I want to!) or even just dust my furniture or scrub my tub on my hands and knees.

As my disease progressed, 100% of my dreams were of me being able-bodied. When I started out at Barwis, Dusty worked the front desk and told me once that he had seen a lot of people in wheelchairs come through there but there is something about me that made it seem like I did not belong in one.

Well at Barwis, I worked so hard to get up and walking but when I injured my knee, I stopped going there. I miss it so much! And it makes me sad but Dr. Frush said not to go back until my knee stopped hurting. My knee still hurts! I hope to get back there one day!

Well, today, my Mom got to my house and told me that she had a dream last night that I was walking. I was the current age I am now and she told me I was a bit unsteady but I was still walking! When she told me this, I thought of that student and of Dusty. It’s got to be true someday!

I still have hope for that happening one day even though it’s hard to see that with my knee hurting so badly! As of late, I do not dream anymore and I do not sleep very well either which is a product of my disease but I still have daydreams of walking again one day and being able bodied again!

Helium

So I have seen this commercial so many times and today I told Sean that I do not understand it. I didn’t understand why they were talking that way! Sean was laying on the couch and told me quite matter-of-factly, kind of like, “Duh, Mom?!” that they hit a helium truck. That’s all he had to say and I had laughed and laughed! I just saw that commercial again a little while ago and I laughed some more!

ALMOST Forgotten Tune #43

I was never a huge Metallica fan. James Hetfield has a very distinct voice and I grew up hearing so many iconic songs in my peripheral. For whatever reason, I woke up this morning singing this song. I wasn’t sure of all the details but I remember diggin’ this song and I thought it was pretty cool when James cut his hair! I searched YouTube and found the video and I have watched it and that song is STILL in my head! And I have never seen any of the Mission Impossible movies!

Chalk

Yesterday, as I was thinking about Barwis with fondness and missing it so much and with the latest blog post in my mind that talked about Adam and Michael calling me, “Princess,” another fond memory came to mind and I laughed to myself all morning!

The memory I had had to do with chalk. Specifically, the chalk that all the athletes put on their hands to better grip the bar. There was a little basin with chalk that the athletes would use often. I remembered telling Adam that I wanted to use it and maybe that it would help me perform better at squats. He told me to go ahead and get some.

I think I first need to say that I am NOT an athlete! What I found out TOO LATE was that you were supposed to just dip your fingertips into the chalk and then rub your hands together to spread the chalk on your hands. Well, when Adam told me to go ahead, I put both my open hands entirely into the chalk!

I texted Adam who is saved in my phone as “Phil“ (because that’s what are used to call him) and told him that I had been laughing all morning and asked if he remembered the, “Chalk fiasco at Barwis.” He did and told me that he remembers the chalk exploding and getting on everything within 100 feet of me! I responded with a😂.

A little while later, I texted him again and told him that he was it within 100 feet of me and asked him if I got it on him. He told me that, “It was all over [him]! Especially on the floor.” I responded to those texts with 9 😂.

After receiving those texts from him I laughed even harder ALL DAY LONG! I thought it was pretty cool that he still remembers that and it happened so many years ago. It was really funny that I had forgotten about it until yesterday and the more I thought about it, the more I laughed! The fact that he remembers it to made me laugh even harder! Well, now I know how to put chalk on my hands but I don’t think I will do that ever again!

Everywhere

My Mom and I were pretty laid-back yesterday. She got a call from my new wheelchair tech, Brad, where he told her that he would come by my house in a while because he was in the city of Dearborn on Thursday. My wheelchair needed further adjustments and he will come back sometime next week to hopefully finish them. After she got that phone call, we decided we had to get to work so she told me that she wanted a song that would make her move quickly.

OfF COURSE, we decided on this song! She has told me that that is a really good, “Walking Song.” My Mom’s house is very near to Hemlock Park and that is where she would go to walk around the track that surrounds it.

For me, this song is more about my Mom cleaning the house! She would always listen to the Fleetwood Mac CD while she cleaned and also when she cooked. As we listened to this song, I saw me as a child and her in my minds eye cleaning her house or snapping in the kitchen while cooking. My Mom had the LOUDEST snap in the world!

We got finished with all of our morning routine and even ate breakfast before Brad showed up! I guess the song worked!

We listened to Journey’s Essentials today.

“Okay, Princess!”

My son has made fun of me for a long while that I am late to the meme game. And that could be very true but I saw this one a couple days ago and memories of Barwis came up and made me smile.

I’m not going to lie, I’m a pretty particular person. I can be meticulous and have a lot of pet peeves if you will. I would not say that I am “High maintenance but rather, “High standards.“ Pretty early on, in working with Adam, whom I called “Phil,” he became aware of a lot of my idiosyncrasies and pet peeves.

I was not embarrassed by letting him know that something bothered me. I can’t even remember what I had told him, I kind of wish I did because that would make it a little more funny but, I said something to him to which he responded, “Okay, Princess!” I laughed and set him straight by telling him that I am NOT a princess, I am a Queen! He laughed about that!

I think it was a few years after that conversation that I started working with Michael Rhoades and he said the same thing to me! “Okay, Princess!” I had to set him straight also! I am too old to be a princess, I have paid my dues and I am now a Queen!

It was funny that these two men said this about me and I don’t think they talk to each other about it. At least I am consistent! I miss Barwis so much! I hope that I can get back there soon! I’m not really sure of that because my knee STILL hurts!