My Face

Hello again, I'm back. Hopefully I can keep today's post an easier read. I do want to pick back up on something I didn't get to last night.  My face.  I've known since diagnosis ALS affects the voluntary muscles, but I never really thought much about the face. I'll give myself a break on that since I was thinking more about muscles that kept me walking, dressing, wiping my own ass, and especially breathing.

I first noticed a slight down turn on the right corner of my mouth, but for some reason I thought that's as far as it would go. I have had twitches occasionally around the face between lips and nose. Don't know what their called, but you know the parenthesis that become more apparent with age. It's been a while, but I went a couple of months with a ripple starting at back of jaw to front side of chin and oddly only on my left side. The only cramp-like pain I've had was on the right side of jaw. That was at the same time I had a crown put on a back molar. I kept telling my dentist my jaw hurt really bad. He couldn't come up with any reason except possibly TMJ at the time. Other than those things I thought nothing of my face until several months ago I started noticing that the right side of my face was dropping, especially the chin, and then around my jawline. When I first noticed, I really had to point it out for people to notice. Now if they try to say they can't tell, I just know they don't want to say because it is very obvious. I don't want to make anybody uncomfortable.

Surely everyone reading this either heard this phrase from their parents, said it to their own kids or at least heard of parents saying, "You better stop making that face or it will get stuck like that." Well, my face has never excactly been stuck in an expression, but if I gave a big smile or the expression of pain I could feel it slowly relaxing, sometimes needing to help it along. Very strange feeling. By this time felt sure it was ALS related. I've always been able to do the eye brow roll or easily just arch one at a time. I can still do it, but I have to be very intentional about it. We moved a wall mirror in the room from the hallway after painting and I can always see my face. I look and I'm thinking my face is relaxed, but it usually looks like I either have a grimace expression or I'm about to bust out in tears. It kinda freaks me out.

The real kicker is I've always had this auto-pilot instant smile when someone takes my picture. My sister usually  jokes with me about it. She's usually the big picture taker at family holidays. She'll say, "look up April, I'm taking your picture," and I just instantly smile a wide smile.

Since my diagnosis, my husband has been taking more pictures of me. He started saying "smile for this one". I thought I was. It felt like I was smiling ear to ear, then I would look at the camera and there was no smile. It's strange because I feel like my muscles are doing it when they're not. You can see an example on my home page. In the picture of me and Abby in the wheelchair, and Tony is kissing me. I thought I was puckering. He started asking me "what's wrong honey?" a lot. When I didn't feel I was indicating any thing was wrong. He thought I looked sad, mad or in pain. In pictures I'd try really hard and it just looked weird. It looked nothing like my smile, more like I was trying to intentionally have a crazy looking smile. I looked at some footage he filmed not too long ago and for the first time I saw the right side of my mouth really drooping when speaking, my lips all uneven. Nobody told me. I don't blame them. I guess they figured I knew and thought it would be rude to bring it too my attention.

Tony makes sure to keep telling me how beautiful I am. When just thinking of it, I appreciate it and it means so much to me how he tries to keep my morale up. It depends on my mood and level of acceptance I'm feeling at the time as to how I might react when he's saying it. I have for now, found a way to get my face relaxed and have a little closed mouth smile.

I can see how this my seem vain and insignificant when I'm dealing with a terminal disease, but I don't think I'm the only person in this position that feels this way. I'm not claiming I'm some exceptionally beautiful person that has suddenly turned disgustingly ugly either. I'm just trying to stress how cruel this disease is.

While trying not to sound delusional, it can just feel like this disease has a personal vendetta against it's victims. Like before it goes for the real kill it wants to painfully throw you around a bit first saying, "Oh you like smiling for pictures and making your unique expressions? OK, I'll go ahead and take that right now!"

I want to also make it clear that in some ways my progression has it's advantages. I also am very aware that so many have lost the battle sooner than I have lived with it now since diagnosis.

Real soon, maybe tomorrow, I may lift up a bit and mention some advantages that come from the most dreaded losses. Stay tuned, it will make sense.

I want to end by saying I am thankful for the things I'm still able to do, which is a lot compared to later stages. Also a big thank you to all the caregivers out there. Their role and suffering should never be underestimated.

Until next time, take care

April

 

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