Not exactly what I expected to be the first comment out of Jennifer Agbay’s mouth! Her next statement? “I may have to get off, as I am having pain.”
She was really happy to tell her story because she says this is now her world and so many people have no idea … they need to be educated! “Getting out the awareness is one of my callings now.”
While in the last trimester of pregnancy with her first child, the whole right side of her face went numb. You could draw a line from the top of her head through her nose and her lips down to her chin. She could feel the left side of her tooth but not the right side of her tooth. When she went to the doctor she was told the baby is probably sitting on some nerves and it’ll all go away. They did check for Bells Palsy but she didn’t have any sagging. She could do anything with her face but just could not feel the right side. She had a CAT scan, without contrast since she was pregnant, but it was not easy for her, lying on her back. They couldn’t see anything so she didn’t get any real results from it. They sent her back home. She had her child and was still numb for another month after that. Then she awoke one day and it was gone! It left just as suddenly as it came on.
So she forgot about it. She was pregnant again three and a half years later and it went beautifully.
Then about seven years ago she first felt pain in the shower. She was washing her face and got this HUGE jolt of electricity through her face. She didn’t know where it came from or why or what it was! It happened again within a minute. She told her husband and his reaction was “Oh, it’s probably nothing. Don’t worry about it.”
She went to her doctor and he said to “go home, take an Advil and I’ll see you in two weeks.” We’ll “watch it”. But it didn’t subside. It continued. It mostly happened when she was talking at this point in time. This was the worst thing for her because she loves to talk! She’s a real talker! To anyone, about anything. To be silent was like torture!
Her trigger point was at her nostril, which grew to include her lip. She was having jolts like lighting; like a sparkler… a snippy, prickly, hot feeling. She went back two weeks later and had an MRI this time and they identified white spots on her brain. Her doctor called and told her she had MS (Multiple Sclerosis) and needed to go to an MS clinic, right away.
The doctor at the clinic told her that with MS she had something called Trigeminal Neuralgia and they explained it was the 5th cranial nerve, the sensory nerve that was affected. She was told that the things you do in every day life like eating, talking, smiling, brushing your teeth would be a trigger. Not could be. Would be. The formal name, Tic Deloreux, is French for pain and the way the face responds from it … the kick of the aftershock, the tic.
She met with the neurologist for MS and was told she had a mild case of it so she was put on MS therapy. Jennifer visited a pain doctor for the TN and was put on gabapentin and when that didn’t work they added nortriptyline. She started at the lowest dose and for about a year and a half she went into remission.
One night as she was making dinner she bit on a piece of lettuce. That was it! Her face went “ballistic!” She now not only had sharp jolts of pain but also fire and lasers … it was like fireworks that kept going and going and going and going. It may have only lasted like 10 seconds but it felt like eternity. It went from that one tiny spot to all three branches of her right side. Meanwhile, she had discovered, the previous numbness could have been a precursor to Trigeminal Neuralgia.
Since she was not happy with her neurologist (“at all”) her entire family was telling her to go to MGH (Massachusetts General Hospital), which has the third best Neurology Departments in the entire world. She had three neurologists looking at her MRIs. They told her she didn’t have MS. She may have the “markings” of it but her lesions were not enhanced at all. In seven years her “MS” has not changed at all! Her neurologist wanted to call it “Benign MS”. So that is what she is labeled. “I don’t think about the MS because I don’t think I’m affected by it. The only thing I care about is this nasty, horrific Trigeminal Neuralgia.”
Jennifer is the owner of Ballet Arts Worcester. She is a dancer. Her limbs work perfectly fine. She has no issue with any other part of her body. There is no other indication of anything being wrong … except to her, the pain in her face … Trigeminal Neuralgia.
Jennifer turned 40 in January of 2015. She has two daughters, Sophia who is 12 and the Stella who is 9. She married her high school sweetheart … ahhh. They have a wonderful life, other than the Trigeminal Neuralgia. But the Trigeminal Neuralgia has really caused a stir in her household. “Sometimes this pain is screaming and yelling and I’m on the floor, gasping and crying and trying to figure out, is this going to stop? When will there be some relief? Why are my kids watching me? I look like a dead fish that is getting electrocuted.”
It has brought a ton of emotion to her home. It has brought awareness to her family as well, as they are all very proactive.
She taught and talked during excruciating pain and never once let it be known. Not once. When it would get really bad she would go into the bathroom. She would cry, wipe her tears and come back to the dance room and teach the class the next lesson. “And to be honest, Kathleen, I don’t know how I kept it in. I really don’t.” (When she is home she is screaming while she’s crying.) “It’s unbelievable! Maybe God is giving me a wonderful gift, to be an actress … I don’t know.”
She did not tell anyone but family and very close friends what she was going through. That was until the fall of 2014. She finally had to tell her Dance Community.
In recent months the pain had been becoming so severe, so aggressive that she was out of work a lot. She had been hiding from her community and it was thought quite strange. “She’s always here. Now she is rarely here.” They deserved to know why. And when they heard? They were so supportive. Their prayers and love were and continue to be, so overwhelming, that she feels comfortable walking through the halls of Ballet Arts Worcester. When she is having issues, people understand. They have respect. They back off. They are so amazing she wishes she had told them long before!
Why did she hide it? “Being a dancer … the world of perfection, right? Nothing’s wrong. We just suck it up and we just do it. That is the mentality I had.” She didn’t want anyone to know that Miss Jen was flawed.
“Miss Jen is always happy, always bubbly, energetic, very talkative. She’s a great ball of life!!”
“When I told the community, especially my students, I said ‘All I want you to do is understand this disease; become aware of this disease, help people with this disease because there aren’t many people who have it.’ That’s all I need from them. Just become aware.”
This year, one of her students, Hannah, who is in the National Honor Society had to promote a project she believed in … maybe a community fitness project and she came to Miss Jen (as Jennifer is affectionately and respectfully called) and said she wanted to have a dance concert. “Every single penny we own I want to send to Trigeminal Neuralgia!” Jen exclaimed. “That was, like, the most touching thing that anyone has ever done for me, you know?”
“Hannah’s dance concert generated $1200.00! Which is great! Anything is great”!!
Jennifer feels supported … and that she can be who she is now. When she can talk, she can “talk a ton”. When she can’t, people know why. “Having the support of my dance community and my family and my number one … I may get emotional … my husband. Who would have thought?” They’ve been together since they were 15 years old!! “I never thought that we could be any closer in our marriage and in our friendship, in our teamwork. He’s been the most amazing father to my children. He’s my nurse. He’s a hand to hold when the pain is too excruciating. He’s a gift from God. … My household doesn’t miss a beat because of him. When I can’t do things he does it and he did explain to our children that mommy can’t talk right now or she can’t eat right now, you know, he explains and our life continues to go on. He is my inspiration. He is just so positive about this whole thing. He says ‘Jennifer, your life is not always going to be like this. You have a vision. We will find it. As long as we have to. Your life is not always going to be like this way, this is just temporary.’ To hear those words from a person who doesn’t even know … I mean, he knows everything that I feel except (he can’t know) the physical pain.” He goes to every doctor’s appointment with her. It doesn’t matter whether she has a twitch or a five-minute electrocution he is there, he’s with her body. He says “I’m with you every step of the way.” He feels every emotion. He says “We do this together.” She gets emotional. “If I could pick two men in the future for my daughters, it would be just like this … When my father gave me away at my wedding he said to Michael ‘Take care of my precious gift.’ I just want my dad to know he IS, he IS! Those words ‘In sickness and in health’ …it’s true, it’s true. Every single day he either calls me or texts me ‘How do you feel today? How do you feel today?’ At times when I am active with this pain he stays home from work. He calls doctors on my behalf to see if I can have an urgent appointment. He’s ready to go as soon as a cancellation happens.”
I asked how going to the doctor helps. “It’s just being on top of the medications. Finding the right cocktail of medications.” Gabapentin, she is now maxed out on. Her daily combination or cocktail includes 800 mg tegretol, 150 mg trileptal, 100 mg nortriptyline and 90 mg Cymbalta … all high dosages. Her neurologist says to her “I don’t know how you’re standing up or sitting in that chair. This is enough to sedate a horse!” She has a tiny frame and is only 5’ ½” tall! Get this: with all these medications she has zero side effects! Her current challenge is that the medications aren’t withstanding, they are not holding her and she is starting to max out. She has blood work every so often and even her blood work has been coming out perfect! I said maybe it has to do with her great attitude, which is amazingly upbeat, especially considering what she lives with! She agreed, but also thinks it may be due to metabolism. She has to constantly work with the pain doctor to know how to manipulate the meds, at what level is a true saturated level … it has to be at a true therapeutic range, what works for this specific body.
Some days are good and some days SUCK. The only time she gets “kicked in the ass, is when it just keeps coming and just keeps coming and just keeps coming. When the times in between, the intervals, when I only get about 30 seconds of breath and then it starts up again.”
Then other times she is up on her feet and trying to live her life as normal as possible and keeps saying to herself “it’s pain. It’s pain. You’ll get over it. It’ll pass. It’s pain. Look at what you have. I don’t have a death sentence. I can continue to watch my family grow. Whether that is extended family or immediate. I have a job that I love. I am a dancer. I teach kids how to dance and perform. I am so saturated in my craft. More than I have been in my entire life. And I think that is what keeps me going. I’m not a hero.” I disagreed.
The first thing she saw when she discovered what she had was that it is called The Suicide Disease. She thought Great … then she said “Put it this way, I’m afraid to die … I want to live to be 100. With this disease or without it. I want to live to 100. That’s my goal.” She is so funny, in spite of her situation. She says “Give me the poop in my pants option ‘cause that’s what I want.”
And “I’m Jennifer with constant pain. Sometimes pain makes me not act like Jennifer, like when I am silent and I can’t eat and I can’t drink. But I learned with all this that it comes and it goes and it’s really shitty and you gotta hold on. You gotta hold on with both hands. Whether that is holding my husband’s hand, my parent’s hand or one of my girls’ hands. Sometimes my husband’s not there and my girls will come running in to help me ‘Mom go to a happy place. Mom you’re doing great! Hold my hand. Hug me!’ They started this at a very young age.”
Jennifer has tried everything from hypnosis to acupuncture to cranial chiropractic to yoga. She particularly liked yoga. She says it keeps her balanced. She’s done everything. She’s come home and told her girls “When I have pain just say the word ‘blue’.” Blue is comforting. It calms her.
Her youngest, Stella, has made her flash cards of things she, mom has said … “yes, no, pick up your room, stop fighting, get over here” … they laugh about it. She says to God “I have Trigeminal Neuralgia, but I have Stella, I have Sophia and I have Michael.” “But sometimes I get angry at Him.” She adds “I am patiently waiting for my remission. Something in my gut says I’m going to be okay. I have this feeling … It’s about being proactive constantly, constantly. There are a lot of things like stress that can exacerbate this at any time. I own my own business so there is a ton of stress that goes along with that … But I love a challenge.”
I asked if she is part of any support group and she said no. That it would frighten her. She doesn’t want to hear any negative things. She doesn’t want to know the drugs didn’t work for them. Or surgery failed them. She herself is not a surgical candidate. They traced the nerve and nothing is pressing on it.
“People have to become more aware of this disease. Even though they will never truly understand the physical pain that we go through. I say to my husband ‘I just don’t understand how the body can create so much pain.’ It’s mind-boggling. I try to wrap my brain around that and I can’t. I’m still a student. I’m still learning about this. I haven’t mastered it. Every day is a learning day. I’m learning about myself. The old cliché “live each day to its’ fullest” is what I am trying to adapt in my life. I don’t know what 5 minutes from now will bring. I could die tomorrow. We have to live in the moment. And just be. It’s hard. But I say to myself ‘You haven’t had pain for 30 minutes.’ Yesterday I had 4 hours pain free. I have to celebrate those moments.”
“This is not a death sentence.” She has too much on this earth to do. She doesn’t have time for this. She has children. She has a job. She has a passion.
“God has given me a path to go down. It is all about awareness.”