Lyrical Sparrow

I Can’t Find The Words for this Post Title

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Last week I was talking with a friend, and as my mind started thinking about the words it would say next, I began some inner dialogue that went a little something like this…oh there is a word coming up in my sentence…I think it starts with an a and has a few syllables…oh I hope the word comes to me in time…what if I forget the word? I will sound like an idiot..oh please come to me in time. Thankfully when the time came for the word, it easily rolled off of my tongue, “Advocate.” Hallelujah, I was able to recall the word.

It sounds a little silly, but lately I feel like words escape me so easily. I will be in the middle of a conversation with my hubby and stop mid-sentence, look at him, and say…I can’t think of the word that I am trying to say. I will then tell him what I think the word sounds like, or what letter I think the word starts with. He tries to help sometimes, providing a few different words. Sometimes he finds the word that I was looking for and sometimes he says a different, more fitting word, that I end up liking better and using to finish my sentence.

I hate that feeling that comes over me when a word just disappears mid-thought…it is like this cloudy, foggy feeling in which I feel the word is right there floating around me, but I can’t seem to get my brain and mouth to connect. It is that “on the tip of my tongue” feeling, but amplified.

Now I know that this is a common phenomenon, as is walking into a room and forgetting why you entered, or sometimes completely forgetting the name of your child, or calling him his sibling’s name instead (All things that I also do very often). However, when I lose words lately, it causes me to have a brief panic, because at that moment I remind myself of my mom.

Last month I turned 36 years old, and ever since I entered my 30’s, there has been this lingering worry that I will someday be diagnosed with Multiple Sclerosis. Multiple Sclerosis usually affects people between the ages of 20 and 50 years, and the average age of onset is approximately 34 years. My mom was 39 when she was diagnosed. For me, that is just 3 years away. While having a parent with MS does significantly increase an individual’s risk of developing the disease, that risk is a small 2 – 5%. This is a fact that I have to remind myself of often.

I do think sometimes about starting memory books for my kids, just in case I am diagnosed someday, just in case my memory fades, like my mom’s has….Just in case my kids or grandkids want to know more about me someday and I am unable to share.

I think about how I waste so many days just lounging around the house, when I could be out exploring, running, walking, hiking, riding a bike. I think about how I should be doing those things more often, while I can, just in case I am diagnosed someday….Just in case I am confined to a wheelchair and spend most of my time on a recliner or in bed, like my mom does.

I think about how disconnected my mom is from my life and the life of my kids. I honestly think, due to her mental state, that she doesn’t fully grasp or understand the severity of it. It isn’t something that she grieves or mourns over. I think for her, that is a good thing. My mom truly lives in the moment. If she watches a television show, she enjoys it minute by minute, but at the end of each scene, she will typically forget what she just watched. If she talks with me on the phone, in that moment she is aware that she is talking with me and elated and adorable and we laugh and have a good conversation, but as soon as we hang up the phone, she has no recollection of the conversation. She will forget that I was even a part of her day.

I often hope that I won’t live my life in a daze like that, although it would be wonderful to truly live in the moment, I can’t imagine not being there for my kids as they get older and have kids of their own. I can’t imagine a disconnect when holding my grandbabies for the first not fully understand that experience and to forget it all in seconds.

Sometimes my hand, leg or foot will get tingly. I don’t pay attention to those times when they naturally fall asleep, I am referring to times when they shouldn’t be getting tingly. Each time that happens, I try to shrug it off, but I would be lying if I told you that I didn’t immediately think about MS. It is hard when that is one of the common first symptoms of the disease and one of my mom’s first symptoms.

I know that this concern that I have is normal. I am sure that anyone who has lost a parent, or who has watched their parent live with a disease, has the same thoughts from time to time.

This growing concern isn’t something that I will allow to negatively impact my life. I do feel, that if anything, I should take that fear and that desire to enjoy each moment and have it provide me with a new outlook on life. I should, more than anything, strive to make the most of each day I have with my family…and like my mom, truly live in the moment.

Amy Schumer has recently been in the news speaking publicly about her dad’s battle with MS. I have found myself reading a lot of her interviews lately, because she gets it…and I relate so much to her words…

“Some days he’s really good and he’s with it and we’re joking around. And some days I go to visit my dad and it’s so painful. I can’t believe it…..It’s the most painful thing in the world to just watch this person that you love ultimately just digress and kind of decompose. And it’s too heavy and you have to find a way to laugh at it…..I love to laugh. I seek laughter all the time. I think that’s something that also comes with having a sick parent is you don’t know what’s going to happen and so I’ll be, like, I’m psyched my legs still work, and I want to, like, experience all I can and make as many memories as I can.”

– Amy Schumer



One thought on “I Can’t Find The Words for this Post Title

  1. I love you, friend, and while my journey was very different, I do relate to seeing the slow decay. And worrying about diagnosis.

    I could learn to better live in the moment too.

    Thank you for sharing your story. Your heart is beautiful.

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