Support Group Member Stories
Recovering from Bell’s Palsy During Pregnancy
Barbara and her husband were busy preparing for the birth of their first child in January, 2004. One morning during the beginning of her third trimester, she was laughing and talking with her husband when he noticed there was something different about her smile – one side of her face wasn’t moving. They went to the emergency room that day, and eventually Barbara was sent home with a diagnosis of Bell’s palsy. She was told at that time that her chances were good for a full recovery. The paralysis progressed over the next few days, leaving her with the left side of her face drooping, unable to close her eye on the effected side, no taste on the left side of her tongue, sensitivity to noise, and intense pain. A little over a month later, with no improvement in her face, she gave birth prematurely to a perfect, yet small, 3 lb. 4 oz. baby girl.
Months passed with little improvement, so Barbara began her search for treatment options to help regain her smile. “Ten years ago there just wasn’t a lot of information out there.” She tried everything she could that might help – chiropractor, acupuncturist, cranial sacral therapy, massage therapy. After a year of doctor appointments, she didn’t see any improvement in her smile.
“I did it all in hope that I would once again be able to look in the mirror and recognize the person who was looking back at me. Working in dentistry for over 15 years, I built my career around a smile. Now, I didn’t know what to do. How to act around people. I didn’t know who I was anymore. I stayed home for a long time, not seeing friends or going on outings. It took a long time to work out my new persona. The once animated, easy to laugh person just wasn’t who I felt I could be anymore. I found myself misunderstood by even the people closest to me. People often thought I was angry, grumpy, or smirking when I wasn’t. I could no longer express my emotions through a simple glance.”
“Living with facial paralysis continued to be a constant struggle. It’s in every conversation, how to pronounce words, how not to laugh too much or too loud, how to position yourself to keep people on your good side, how to avoid loud environments because projecting your voice is very difficult when you are trying to control how your face will look. How to drink from a glass. What to order at a restaurant. The list is enormous and often feels endless. It was exhausting.”
Her search for options began again a few years ago. “This is where my life took a vital turn!” She found a physical therapist specializing in facial paralysis, and they worked on facial neuromuscular rehabilitation, teaching her brain to control the unwanted muscle movements and stretching the tense muscles that were constantly contracting. She also had Botox to quiet the more difficult muscles and to create more symmetry.
It was around this time that she found The Facial Paralysis and Bell’s Palsy Foundation and their support groups. “I found I wasn’t alone in how I felt about who I saw in the mirror. Through working with the foundation and attending support groups, I heard people talk about going through the same struggles as me. I learned that opening up to people helped me cope. I began my journey to healing emotionally. I began catching myself laughing without ‘toning down’ the happiness.”
Over a year ago Barbara started leading a support group in her area. “I’ve made connections with people that will remain in my heart forever. We are able to share our experiences and support each other. The first time I attended a support group, I remember the feeling of awe and relief. I couldn’t believe there were so many people that were going through the same thing. We TALKED about it, cried about it, laughed about it. My small little world of one just expanded exponentially. There are people who understand what I live with every day. I may still not look the same in the mirror, but I’ve learned that this new smile didn’t define me. These wonderful groups of people have walked with me on this healing journey and for them I will be eternally grateful for their support and encouragement.”
Jane Mateik – A Soft Smile
Life changes after a brain tumor.
Jane Mateik was getting ready to embark on a new stage of life in 2010. She and her husband, a Navy chief, were packing for a year-long assignment on the island of Crete. Jane was planning for a year of beaches and tropical weather, but little did she know that her plans would soon change.
Jane had recently been experiencing unusual pain and throbbing in he right temple. After 6 months and visits to 3 different doctors, a neurologist ordered an MRI that revealed a Schwannoma brain tumor. She underwent surgery to remove the tumor shortly thereafter, and although the procedure was successful, she awoke to find that the right side of her face was paralyzed – a not uncommon side effect from this type of surgery. Her doctors hoped the paralysis would be temporary, but after a year with no improvement, she had to accept that it was permanent.
“At that point I was truly devastated,” she said. “When it’s your face and it’s what you present to the world . . . it was extremely hard for me to take.
“I’ve always had a fun personality and liked to laugh and joke and smile . . . I mean a really good laughing smile and ‘show your pearly whites’ kind of smile. It’s something I really mourn because I’ll never have it again.”
Jane was referred later to facial paralysis surgeon, Dr. Babak Azizzadeh, of The Facial Paralysis Institute in Beverly Hills, California, and founder of The Facial Paralysis and Bell’s Palsy Foundation.
Dr. Azizzadeh first coordinated with an eye surgeon to arrange for procedures involving a gold weight implant that enabled Jane to close and, eventually, blink her right eye.
She also underwent a cross-face nerve graft procedure, which improved her facial symmetry as well as improved her ability to move the right side of her face, enabling Mateik to form words more easily and . . . smile.
“The surgery that Dr. Azizzadeh has done . . . . It gives me a more symmetrical look and a ‘soft smile’.
“Do I have my large smile showing teeth? No. . . . but I’ve come miles from what I looked like before the surgery. The lower right side of my lip was hanging down. You could just walk by someone and know something was wrong. And now when someone sees me they have no idea anything is wrong with me.
“Yet, do I still have some depression and disappointment? Yes . . . I’ll never look the same. But I look so much better than I did before.”
In addition to participating in physical therapy, Mateik attends periodic support groups offered by The Facial Paralysis and Bell’s Palsy Foundation, which she feels is helping her adjust to the changes abruptly brought on by her condition.
“The group therapy has been very helpful,” she commented. “I just didn’t know where to turn. There really weren’t any support groups around for facial paralysis. I’m sure there are a lot of people out there that just don’t know where to get support.
“I don’t know the future, what will happen with my face as I age, whether one side will decline at the same rate as the other. That’s something that time will tell, and I’ll have to make the decision whether I’ll want to have more procedures to restore symmetry, but that’s down the road and we’ll see what happens with that.”
For today, Jane is an encourager to others who are dealing with brain tumors, and/or facial paralysis, and we are glad to have her as a member of our support groups.
by Michelle O. Cutler 2014
A Poem Written By Jane During Her Recovery
Where is She?
You’re my soul mate as I am yours; as we walk down the aisle, you’re by my side through it all, I can count on you to pull me through, you’re amazing in everything you do. I’ll never leave you, the love we share is rare, I pray to smile for you again.
Our love is tested, the Lord up above had different plans from the ones we had.
Our life has changed; I will never be the same, thanks for loving me all the same.
The way things used to be is what I’m fighting for, my reflection in the mirror,
looks back at me, where am I hiding I can’t see, mirrors don’t lie,
it’s not me, who’s this stranger staring back at me.
Lying on the gurney as they roll me away, our eyes meet blowing kisses, such a scary day,
I’ll be back I promise good as new.
I wake, they say their sorry, their heads held low, complications shortly show. Your wife
is paralyzed she may never be the same, best wishes to you all, were not to blame.
I’ve tried to hide it, through the tears in my eyes, stop this landslide from burying me alive.
You fill so helpless so torn and pulled apart, how do we fix her, where do we start.
The love we share, our memories run so very deep, reminds me of the good times I dream
in my sleep. Wake me now, I’m living in the past, searching for the answers, don’t know
where to grasp, must find one, find me, what do I do with the memories that seem to last.
Cracked mirror all in pieces scattered on the floor, thank God I have my husband,
he loves me even more.
The way things used to be is what I’m fighting for, my reflection in the mirror,
a stranger looks back at me. Where is she hiding, I can’t see, mirrors don’t lie,
that’s not me.
By: Jane Mateik