Category: A Journey Begins…

I didn’t know that I was thinking about this monumental moment for a really long time until my nephew got home for Christmas break. He went away to MSU for his first year of college. When he came home, that was the moment I realized that I was that young when I was diagnosed with MS.

I had not realized before the moment that I was such a child! I didn’t know anything but less than a year later, I was going to be a parent myself. I guess I had been thinking about this day since I was diagnosed. I was 18 when I was told that I, “Had MS, was going to go blind, and was going to die.” It was such a startling statement for a college freshman and her Mom.

Today marks the day that I have been diagnosed with MS for longer then I did not have MS. I have had MS for more than half of my life. With each passing year, my able-bodied self slips further and further away and memories of me being able bodied fade more and more.

Today marks the death of my seemingly able-bodied self and it makes me sad that I can never again say that I have been able-bodied longer than I have had MS. Annually, for the past 19 years, today is a somber day and sadly, today is no different. Today, actually hurts a little bit more than the previous 18!

So, today is here. Today is December 28th. I am quiet today, as usual. My debilitating disease is finally legal to drink alcoholic beverages. Too bad that I stopped drinking a decade ago! In speaking with Sean today, I told him that the teeter totter is no longer level and my 21 years is left on the ground because after 21 years, it’s quite heavy to carry! I am left with no other choice but to carry it. I was thinking about today being my 21st anniversary and the fact that a family friend/acquaintance was recently diagnosed. I was struck by hearing this news and I have thought of that of a scared 18-year-old girl being told that she had multiple sclerosis. I will never forget how that day felt 21 years ago! I saw this posted on Facebook a few days ago:

On this day, 21 years ago, my life, unbeknownst to me, was divided into two parts! Before and after this. The before part is starting to get a little hazy and the after is proving to be so tiring and difficult!

My Mom took Leia for a walk last night and she talked to a couple who lives down the street. I have never talk to them but what she said kind of startled me. I’m not even sure if that’s the word but it befuddled me astounded me I’m not sure. That’s why my blog post title is what it is. What my Mom told me last night reminded me of a story that I was told eight years ago:

Eight years ago, my cousin graduated from high school. I had to text her to find out how old she is to know how old the story was. She is 26 so eight years ago, I was still driving. She was having her graduation party at her house and my Mom and I were going to drive together to go to it. My Mom called my aunt in advance and asked her to leave the driveway open because that’s easiest for me to get to their backyard.

My Mom had told me about my aunt’s nephew telling her about a woman who gets out of her house every morning who is in a wheelchair and puts her wheelchair on top of her car and drives to work. She would say that woman every morning when he was stopped at the stoplight to go to work himself. He told my aunt that this woman could easily get on disability but instead, goes to work every day.

it wasn’t until my car was in my aunts driveway that her nephew saw the car and told my aunt that, “This is the car!“ it was extremely warm and we did not stay at the party very long so I did not get to talk to this man but I thought about the story because the man my Mom spoke to yesterday had noticed me too. My Mom told the man where she lives but then corrected herself and said that her daughter lives there but she is staying with me. My mom told him that we are the house at the end of the street before the Ford building. He asked (for clarification), “Oh, The woman in the wheelchair who goes to work every morning?”

She smiled and agreed. I never once thought about the difficulty I had getting out of my house and getting into my car and driving to work. I was just doing what I had to do to take care of my son and myself. I guess I left an impression on people even though I haven’t worked in coming up on five years now.

I re-posted my last four posts from my blog that I posted today. It is my anniversary! NOT a good anniversary but a milestone marker just the same.

I spoke with Sean a couple weeks ago about this new anniversary and he began singing Taylor Swift to me. I couldn’t even continue singing and I told him, “Not for this.”

That is a huge thing for me! I would play for him Abba every day for a month before he turn 17 when he got ready for school. But I think regarding me and my disease, I can’t joke or laugh or sing about this anymore.

All I know is that year 21 was extremely difficult!!! I often would tell people that, “Year 21 ain’t no joke!” because it has not been at all! It all started with pressure sores on both of my heels in April that lasted until November and then morphed into a trifecta of MORE difficulty! My speech, my vision, my eating. That I still need some time to work through!

I’m thinking back to the day when I try it out for some year-round swim club at Levagood Park. Mr. Bill was standing by my Mom and he told her that I could swim all day if he asked me! He told her that I had endurance!

This anniversary is hitting me a little harder and I hope to tap into my endurance that I apparently have because I’m pretty sure this year is going to get real-er.

I was wondering what my 23rd year would feel like. Sean said that it is my “Jordan year.” I was never a huge basketball fan but I would choose Detroit and I would be about the Bad Boys. But I can’t joke about this or say something cute.

I think after 23 years, I have entered my acceptance phase. About six months ago, I got the Medicare reenrollment catalog. My Mom read it to me, the part where it says that I am home bound. I knew that I was home bound, but to have my Mom read it, now she knows that I am homebound as well!

Do not get me wrong, it is not easy at all and I don’t like it one bit but I can do this. I’ve been thinking about this for a while, and I think the fact that my life did not change when we went into lockdown for Covid lets me know that’s what it is now.

As for my trifecta of my vision, my speech, and my nutrition, I’m handling that as well! My vision is fading, but I pray that it’s gradual, I will get Speech Pathology services next year because I used 22 in 2023. I don’t mind eating the same thing every day for the rest of my life! Eating is no longer easy or enjoyable, but what I do eat, I get my nutrition!

I never thought that my life would be like this, but I am accepting it. This is my acceptance phase in my quietness of today.