Category: A Bit Of Randomness

This category is full of randomness that really doesn’t fit nicely into any of the categories having to do with my road to walking.

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!

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!!!

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.

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!

“Birthday Month”

I told Sean this morning, before he left for school that today kicks off my, “Birthday Month!“. He has been telling me that for a few years now that, “Birthday Month” is NOT a thing!

Oh, it certainly is! I used to just have a, “Birthday Week” but as I have gotten older, it has escalated to a, “Birthday Month!” I do not mind at all getting older so I might as well celebrate it! Sean tells me that I can only have a, “Birthday Month” if I have two things. The first one being a trust fund ( which I do NOT have) and the second being a dog that I carry around all the time. (I do NOT have one of those either).

I call it, “Birthday Month” but I place no importance on receiving gifts or anything. I just simply enjoy celebrating something that I am a big part of. Actually, I am the ONLY part of it! I have known a couple “Birthday Twins” over the years but I just love my birthday!

My birthday is on March 12. I like it best when it falls on a Thursday because I love Thursdays, they’re my favorite day of the week! I constantly remind Sean and my mom about my, “Birthday Month.” It kind of bothers me that recently, there has been snow on the ground on my birthday when before, it was usually spring.

When I was in high school, I always wanted Wendy’s to be my birthday dinner with my family. However, my birthday most often falls during Lent so we needed to eat fish on Fridays which was the day when we would celebrate my birthday with the family.

My Dad told me that we would have a family dinner at Red Lobsster. The Red Lobster by my house did not except large party reservations so, is the youngest with no obligations because I was still in high school, I would have to sit and wait for pretty much an hour until a table with 15 to 18 seats became available. I always hated them! Now, I hold that memory with much fondness.

Now that I will be 37 this year, my birthday is a full blown month and I get to decide where I will have my birthday dinner! I’m not quite sure where I will decide but, I am medically exempt from the Lenten diet so I don’t even know what I will do. I tell Sean that it is all about, “Simple pleasures” when he shakes his head at my assertion of, “Birthday Month.” ☺️☺️☺️

“The Game Ain’t Over”

The other day, as my Mom and I were getting me ready for the day, I moved in such a way that put some strain on my right knee as we were getting me ready. It really hurt! I looked at my Mom and told her more than I asked her but it was a statement and a question rolled into one. I said, “I have a bad knee now.” It was a statement and a question because I could not believe that that is true. My Mom just answered me with a simple, “Yes.”

My knee popped out this morning and when my Mom came over to help me out of bed, my knee popped back in as she was helping me to transfer into my motorized chair. When my knee pops out now, (because it does often), I no longer gasp when it happens but rather, I scream! Often, tears will accompany that scream and it’s been one year, 10 months, and one day since my surgery.

A few days ago, I was sleeping in bed when I kind of rolled over to my back and it popped out! It was probably around 4 o’clock in the morning and my eyes shot open and I called to my Mom! She wasn’t at my house (OF COURSE!) and she laughed when I told her when she got to my house if little bit later. She told me that she must be a good caregiver for me to call to her! I will never dispute that, EVER because as much as it hurts me to realize that I have a caregiver, I couldn’t have a better one than her!

MS is difficult and add it to that, the pain STILL in my knee, just about makes it unbearable! I’ve been thinking about the fact that just after I told/asked my Mom about me having a bad knee and when she answered with a simple response of, “Yes.” I’m not sure if I cried but it was a sad realization! My Mom saw my face and told me that, “The game ain’t over!“

I KNOW it is NOT but it IS difficult! I find myself, “grabbing my guts” even more now and often with tears streaming out of my eyes. I knew what she said was true, and MY TRUTH but it still was a little difficult to hear! As I agreed with her assertion, and I thought of this song:

“Just One of Dem Days”

This morning when my Mom came over and helped me out of bed, I sat in the kitchen drinking my kiefer and I felt pretty badly! She told me that I did not look good and that my eyes look bad! Well, they feel bad! She was puzzled because it wasn’t snowing and I just kind of shrugged a tiny bit and played her this song:

I was in seventh grade when this song came out but I could not think of a more perfect instance to play it. Hopefully, it will get better as the day wears on… We will have to see because it’s, “One of Dem Days!”

“Cherry, cherry, cherry.”

I posted this picture on Facebook this morning:

I wrote with it that hiding your books in the bathroom vanity was a good idea as well. No one can argue with, “I’m in the bathroom!“ and tagged all four of my brothers. Three of them have responded laughing and two of them have called me a nerd! I am completely comfortable with being a nerd! In fact, I KNOW that I am a nerd!

I got my own room around the time I was 13. My brother asked me one time what I did in my room all the time for so long. I told him, “Read.“ I used to read a Babysitters’ Club book a day in the summer. Going along with that thread, my Mom and I have been doing something for probably the past two or three months.

In the morning, when we begin our routine, my Mom needs to transfer me from my motorized wheelchair to begin our work getting me ready for the day. Each day, my Mom hugs me as I wrap my arms around her neck. She needs to pull me up to a standing position and then lower me down to sitting.

While she does this, we both say, “Up, up, up.” And then after I lock my knees to a standing position, we both say, “Down, down, down.” And as she lets go of me, I always say, “Cherry, cherry, cherry.” Those were some of the first lines from the very first book I “read.” I remember one day, my uncle came over and was not impressed by my, “reading.”

Now, as a forner Reading Specialist, I understand that was the beginning stage of exactly that, READING! I read tons of Word Bird books which ultimately were building up my recognition of site words and my own automaticity when it came to reading!

Go Mom! That Word Bird book was the building block of my love for reading. I have always read tons and still do! (as much as my vision will allow me to) I was reading the other day when Sean got home from school. He told me that it was good that I liked reading so much. I appreciated him saying that because it helped me put things into perspective because that’s pretty much all I can do now!

My Mom kind of chuckles every time I say, “Cherry, cherry, cherry.” I have so much to thank that little blue bird for! So much more than I knew back then, I appreciate that I can get lost in a book while sitting in my wheelchair and not being able to leave my house.

“What About the Top of Your Head?

When my Mom allows me to choose the music we will listen to in the morning, lately, I’ve been choosing this song:

This song was released on June 22, 2010 as a single from Train’s album, Save Me San Francisco. That was around the time I started seeing Parker Whitaker in Plymouth. He was my MRT (Muscle Release Technique) therapist who I saw just before I started going to Barwis Methods.

There are so many good songs on this album but, If It’s Love is one of my favorite songs! It’s catchy and has memorable lines for sure! My favorite line is: “On a spinning ball in the middle of a space, I love you from your head to your face“ which demands to be yelled out as loud as I can!

Right after I finished yelling those lines, as my Mom drove the car she asked the question, “What about the top of your head? I told her that, “face” rhymes with, “space” and talked about artistic freedom. Every single time I belted out those lines with the song, my Mom would always ask, “ What about the top of your head?” I would tell her that I had already explained it and, “Way to ruin it Mom!”

As we listen to this song in the mornings now, I always ask that question after my favorite line. Then I kind a laugh a little bit. My Mom did not remember saying that but I let her know that she completely ruined the song for me! (NOT REALLY! I STILL LOVE IT!!!) I also LOVE the memory of hearing her say that as we drove to Parker’s so many years ago!

Do you Want a Potpourri?

I’ve seen this commercial so many times recently and it makes me laugh EVERY SINGLE TIME that kid asks Amy if she wants a potpourri.

I searched YouTube to find that commercial to post it because it makes me laugh so much but all I could find was this one. It’s probably from another take that I have not seen before but I like hearing her say that potpourri comes from nature and then she tastes it!