Update: What I’ve learned from having Bell’s Palsy

Newsletter June 2024 issue 1

Keeping a stiff upper lip! And, thank you to everyone who sent me pirate jokes! I loved the laughs!
(All photos: Billy Brown )

It has been a roller coaster of emotions. It was not the way I expected to start off my new year that is for sure – with the whole left side of my face completely paralyzed. I mean, I did not party that hard over New Year’s. I could not make even the slightest movement. That side of my face looked like stone. It looked like I had a glass eye. It was like someone who had way too much Botox. I had to cancel and/or postpone several projects and shows I had on my schedule. I still have a little way to go but I am so very thankful that there is noticeable improvement both in my function and in my actual looks!

This has been one of the strangest things I have ever experienced. They say there is a lesson to be learned in everything and going through this experience has taught me several things. I have been so grateful for every tiny improvement no matter how small and at times it has been very slow going and I didn’t notice any improvement at all. I had a real low period during the fifth and sixth weeks. Then I decided that since there was nothing I could do to speed it up (outside of my facial exercises) and stressing about it only made it worse, that I would concentrate my focus on completing the re-write of my one-woman show “An Invisible Woman” and get it finished by the end of March. Which is exactly what I did! I had hoped to have it finished and workshopped by the end of May, but it will just have to happen when it happens since I do not know when I will have back the full function of my mouth.

It was much easier to stay home and not feel isolated during the cold winter months of Jan. & Feb. but once the weather started getting nice I got a little down because I was ready to get out and engage with the outside world again but I couldn’t talk very well and had to wear my eyepatch so it was just easier to stay home. That’s when I decided to focus on my work. Once we hit April and I was finished with my rewrite I really was ready to go out and see and “be seen” again. But, even though my face was definitely getting better, it was still very obvious that something wasn’t right. It looked like I had had a stroke. A few times when I was going absolutely stir crazy and needed to get out of the house (and this is from introverted me who my kids call a hermit because I never leave my house!) my husband and I took a picnic lunch to a local park. Eventually we even started our weekend walks again. But only where I wouldn’t run into anybody we knew. I was feeling very self-conscious.

I’ve got my eye on you, Valentine! This was my Valentine message.

Then, a couple of events came up that caused me to realize just how ridiculous I was being and make the decision to not give into my fear and to start showing up for my life again.

The first event was very sad. A friend of mine unexpectedly died and there was a memorial service for him with a celebration of his life afterwards. He was a beloved actor in our close knit entertainment community and we were all stunned at his untimely passing. I wanted to go but was fearful of people seeing me as I looked. I had decided not to go. Then, I was talking to our mutual friend Carolyn, and she reminded me what a supportive and caring community of people we are and that these are my friends. And, that I should go. (My husband was telling me the same thing, btw.) Of course she, they, were right. I put myself together as best I could, looking like a walking Picasso painting, put on my oversize sunglasses, and went to the service and celebration. It was absolutely the best thing I could have dome for myself. Not only did I get to grieve, and laugh, with all my friends about our dear friend, Barry, but I felt the love and support from all the people that I love and care about, too.  

 In fact, when I shared the news of my Bell’s Palsy with my friends I was showered with so much love with notes and cards, calls, texts, cakes, cupcakes, and flowers that I felt like the luckiest lady on earth. And, they continued, and still continue, to check in on me and see how I am doing.

The next event was a happier unexpected event. I was invited to attend a 40th Anniversary gathering of The USFL Professional Football Birmingham Stallions celebrating The “Fillies” Cheerleaders for their Throwback Night. I was on the original team in 1983 and 1984. They went one more year until the franchise folded. They have brought the USFL back and are in their third year. Again, I desperately wanted to go but felt sooooo self-conscious. We would be shown up on the Jumbotron screen in front of thousands of people. I’m sure people wanted to to come see how we all looked like old cheerleaders now, lol. And, I hadn’t seen most of the women in forty years. The few that I am still good friends with told me I absolutely could not miss this and talked me into it. That’s what friends are for! So, I gathered up my courage, dug my old cheerleader jacket out of the closet and put aside my vanity to go have a good time. And, I did. I had a great time! They were so supportive and again, reminded me that I can’t let self-doubt rule my life. We had a ball on the field, dancing to our old music, hanging with the current cheerleaders and catching up with each other and vowing to stay in touch. We all looked great and hadn’t changed a bit! Hahaha! I am so glad I did not give in to my fear. It was so much fun. How silly and sad it would have been to let something like my looks, for whatever reason, keep me from enjoying my life and friends.

Everyone complimented my dress. And, apparently it’s very popular for Renaissance Faire’s. Here’s a link where I got it from amazon.

And, finally, the most exciting event came up. My niece’s wedding. She had been planning it for two years and I was to be the Flower Maid! Of course, I wish that my face was back to normal, especially for wedding photos but, cest’ la vie! My dress was a dream and the bride was radiant and gorgeous and the wedding was so much fun and we all had the best time ever!

Patience. Oh, that’s hard. Still is! Gratitude. Love. Friends ~ make sure to check in with them. Family. Courage. You can’t control everything but you can control a lot of things, most importantly, your attitude. I have a naturally optimistic attitude but as this has dragged on for months with no absolute known time frame of when it will end, I find myself in periods of doubt and fear. I have to remind myself to not give in to them and to focus on the things I can do now. And, I guess this blog post is one of those things. Sharing my story. Because, sharing our stories with one another is a gift we can give to each other. And it helps us feel better, too. (Hell, I don’t even know if anyone will ever read this but I feel better just sharing it. And, if anyone does read it I hope it gives you some inspiring thoughts if you ever go through something like Bell’s Palsy.) I know that when I was first diagnosed with it after the trip to the emergency room, that I went online and read everyone’s stories that I could find to help give me some hope. I am thankful to all of them that were brave enough to share their experience. And, the other night I was reminded of how me sharing my story was helpful, too.

I went to see a friend’s cabaret show and ran into another friend there. He told me how we were bonded forever and I asked him what he meant. He pointed to his face and I saw that he had Bell’s Palsy! He just came down with it last week. When he was at the emergency room and they told him what it was he said he knew what it was because he had seen my story I shared on my Facebook and that it was a bit of relief because he knew I was getting better and that he would, too. And, that’s a gift we have to give. To share our stories to help each other along the journey of life.

Actually, he, my friend who has it, has a beard and mustache and wears glasses so it is not nearly as noticeable on first glance. So, I think I am going to stop shaving and let mine grow back in until I get my “old” face back!

Well, it’s really a state-of-mind. But, I recommend lots of laughter. I love to laugh! In fact, my husband (who has been my rock through all of this) and I were laughing so hard a few days ago when he suddenly looked at me and commented on how my smile was almost back to normal. And, right then I realized that my mouth was not pulling to the right when I laughed, it was more even, coming back to the left now, too. So, laughter really is the best medicine! Find people that make you laugh. Find something to laugh about every day! Laugh through the tears if you have to. I’ve done that, too. That is the Sunny Mindstyle.