Jenn & Karen

Jennifer & Me

Karen

I can’t remember exactly when Jennifer first contacted me, I think it was around 2005 and I was 36 years old and living in south Lincolnshire in the UK. It was definitely before Facebook became a thing. I was teaching myself how to build websites and I needed something to write about, so for the first time ever I decided to write about facial palsy (fp), the condition I was born with in 1969. I thought I was the only person in the world to have facial palsy since birth, the hospital had told my mum as much when I was little. I was happy enough in my own way but there had always been this deep sense of isolation of never knowing another me, another person with facial palsy, another person with my smile. When you think you are the only one you don’t tend to talk about it, because you just assume people won’t understand. I think kids with fp are quite wise, they pick up from a fairly young age that those not affected struggle to ‘get it’.

I finished my website and set it live and was amazed when not long after I received an email from someone called Jennifer Allaby in Canada who said she was born with facial palsy, just like me! And then there were two…

Jennifer was born in the same month and year as me, just many miles away in Saint John, New Brunswick (NB), Canada. Jennifer had a website too, I could relate to so much that Jenn wrote. Having a facial palsy in the 1970s was something you just had to put up with, it was a miserable lonely world of isolation at times. You’ve only really got your parents to ask about it, why it happened, what advice did they seek about it? You rely on their memories and the bits you grasped from medical appointments during childhood which may or may not be accurate. You don’t always fully take on board how much your parents tried for you, that they did all they could. This is why I now encourage all parents of children with facial palsy to keep a diary, because they will forget the detail of the questions they asked doctors and believe me that child will want to know it one day.

Jennifer

Being a teenager is not easy at the best of times. A teenager who is undeniably different, generally, in my opinion, goes through hell. For me the differences were two-fold – I was physically different looking, and I was gay and I didn’t know it. What I did know was that I was absolutely out of my head with anger and grief. I really believed that my parents had just “neglected” to take me back to the doctor when I was thirteen. I had no idea that there was nothing to be done. All I thought was that I would have another shot at being whole when I was eighteen. I fought incessantly with one parent or the other (how they found the strength, I’ll never know) and I ditched school work as some sort of Draconian practice designed to humiliate and destroy me. I flat out refused to stand in front of a class and give a book report. I wouldn’t read aloud in class nor answer questions. I didn’t have any class pictures done until Graduation. And even then, it was only because my grandmother said she wanted one. Yep. Miserable. No doubt about it.

Karen

My parents’ way of dealing with it was to love me and try to pretend I was just the same as everyone else, in their eyes I guess I was. And in my family no one seemed to want to talk about it so I didn’t feel able to either. But there is no getting around the fact you are different and you have this condition that no one ever heard of. Even today you tell someone new you have facial palsy and they say oh yes I’ve heard of cerebral palsy! Recently someone said it is much better to call it facial paralysis because people understand that better and don’t get so confused, it would have been nice if someone told me that forty years ago, because they are absolutely right. Jennifer’s parents and my parents did not have the benefit of the internet, so parents were also isolated from others going through the same. Due to the rarity of the condition, miles separated you from those who might understand, obviously this has all changed now with the arrival of Facebook and other social media platforms.

Jennifer

I played cello in two orchestras – one for the school district and one for the province. When I was on stage performing, it was like I was someone else. There is nothing like that total wall of sound that surrounded me. There is no stereo system in the world that can recreate the vibrations in the floor, the smell of the rosin, and the pride in coordinating eyes to the conductor, ears to the other musicians, hands to the notes, and mind to the energy that flows from an orchestra in the groove.   Makes me all tingly just thinking about it. That was definitely a good thing to have in my life, even though I hated to practice.

Another good thing was my exchange trip to Pangnirtung, Baffin Island. Get out a map. Look north above Quebec. Look about half way up the island to Cumberland Sound. See it? Isn’t it beautiful?  That kind of isolation breeds some of the most generous, kind, and welcoming people I have ever come across. I was fifteen, right at the height of my angst. I had been so unhappy, social workers were called in. They couldn’t do for me what that trip to Pang did, but it wasn’t for a lack of trying.  No one could have predicted how that trip would start the shift for me from miserable to at least halfway human. I doubt the people I met then could even believe me if I told them that they saved my life for years to come with their openness and caring during one ten day trip in 1984. But it is true. From that point on, I had a goal and that made life worth living. I wanted to go back and I would have to stay alive in order to make it happen. I’d also have to finish school and have a career of some kind.  That kept me going, it really did.

Karen

I discovered Olivia Newton-John when I was about five years old (three years before Grease), I would listen to her on the radio and watch her on ‘It’s Cliff Richard’ on a Saturday night. I wanted to be Olivia Newton-John, I could never have a face like hers but I copied her hairstyle and typed out all the words to her songs on my dad’s typewriter. I’d invite my friends round for ONJ singing parties on my birthday. I don’t like seeing myself singing because it makes my facial palsy look worse but singing was an outlet. Another person I really liked was Mary Crosby (Bing’s daughter) in Dallas, the one who shot J.R. I liked her because she smiled on one side of her face more than the other, she was the first person I saw on TV that I felt some kind of affinity with. I don’t even think she had facial palsy, but it was good enough for me.

I dreamt of travel like Jennifer, Mackinac Island in Michigan had caught my eye. I still haven’t been to anywhere in the US but one day I will get there. I went through my childhood trying to forget I had facial palsy. There were nights when I tried selotaping my face and hoping I would wake up ‘fixed’ in the morning. I had close friends but I didn’t talk to them about it, ever. I was embarrassed, I wanted to be like everyone else, I didn’t want to talk about something that made me different. I stood out at school but the weirdest thing now is that I find I’m remembered, because I stood out, and now I think that is a positive. But you can see why it was so isolating being a child with facial palsy back then, because there was no one to talk to who understood how it felt. Because facial expression is spontaneous no one really considers how they would feel if they could no longer smile or close their eye. It’s one of those conditions that people just don’t seem to be able to relate to easily. I always say now that it is not about what ‘you see’, it is about how ‘I feel’.

Jennifer

After years of refusing to go to the corner store by myself, to go to school without a fight, and to do anything even remotely or potentially embarrassing, I was off to university. I made some friends – real friends that I could call on the phone or visit or go camping with.  Not just “Can I borrow your notes” friends.  You know the difference.

Karen

I decided not to go to university or polytechnic as it was called then, I only had the grades for polytechnic. The truth was I didn’t really have the confidence to strike out on my own at that point. I went straight out to work after sixth form and it took me a while to find my feet in the world.

Jennifer

In April of my first year at University, I got my chance to leave. Someone who knew someone who knew my mother called and was looking for a babysitter for the summer in Iqaluit. Oh yes, it was my time. I asked my dad for the money, and he said no. Whoa. This wasn’t part of the grand scheme I had envisioned.  His worry was that I would get there and be the same pouty, insecure, miserable person I was at home and then I wouldn’t make any money and I’d have to come home. Little did he know of the plans to reinvent myself!

Karen

I went on my first holiday abroad without my parents at 18, with two friends from school, one who is now my sister-in-law. I’m good at matchmaking. It was only to the south of France but my confidence was starting to build. There weren’t so many comments about my face the older I got, I asked friends with facial palsy a few weeks ago if they think people get kinder as they get older, the general consensus was absolutely not. Maybe it is just at school that everyone is going through something and feeling insecure and its easier to pick on someone else rather than think about your own woes. I was always of the opinion that at least I knew why people would make fun of me, there are some children who are bullied, and they don’t know why. I think that must be much harder.

Jennifer

After much cajoling and a few creative efforts to sell my text books, I had the money and off I went.  I was away for eight months before I went back to NB for a visit. I decided not to go back to University for a year. I got a job that allowed me to travel and see all of Baffin Island and two communities in the High Arctic. I was hooked. And I really had no problems until one fateful trip to Grise Fiord (got your map? Look at Ellesmere Island, right at the southern end. See the tiny community?) I was working for a travelling dental clinic. Everything was going great until a kid about eight years old came in, took one look around, and started crying. The translator was a high-school student and the kid’s cousin. She finally got him to tell her what was wrong and he said he was afraid that he would look like me if the dentist worked on him. There you have it.  All my anger and grief just sat in my chest like it did when I was a kid myself. I left the room and told the dentist to deal with it. I had been working for three years at this point and I had almost forgotten that I was different. Damn. I can’t remember what happened after that. I know I cried in the bathroom for a while. I know that I had already planned to leave the north and go back to school. I know that I was crushed.

Karen

I started a family in my mid-twenties and now have four children. One of my children has a condition that makes them look different, although it’s something that can be hidden. I now know what it feels like to be on the other side of the equation, the parent, and I have to say I think it’s harder being the parent because you want to help them, and you can’t. You feel their pain and all you want to do is make it better.

I decided to help out with reading at my children’s school, the children were aged about seven I think. One day the teacher left me alone in the classroom with the children and one little boy started copying my facial palsy and making the other children laugh. I was mortified. I waited until the teacher came back and finished the lesson, but I never went back. I think it is the shock of someone saying or doing something when you least expect it. And of course, I didn’t really talk about it and I didn’t know how to talk about it. I was embarrassed, again…

Jennifer

While living in Edmonton, I asked a few neurologists if they knew anything about surgeries to correct my paralysis. They all said they hadn’t heard of anything. Rotters. I was asking the wrong group of doctors. When I moved to Fredericton to go to University (and again), I went to a GP for a check up.  She sent me to a Plastic Surgeon to get his opinion on a mole. The mole was nothing but this guy couldn’t believe I hadn’t “done something” about my face. He then proceeded to tell me that surgeries had been performed for the past 15 years or so to do exactly what I had been asking about for years. Initially, the surgery was only done on children; I had heard of that from a newspaper clipping my aunt and uncle sent me while I was still living up North. I had asked about the surgery by name when I was in Edmonton. Now, out of the blue, I was being told that the surgery did exist, it was covered by medicare, and I could go to Toronto if I wanted to have it done. Oh, yeah.  It was that easy.

In April, 2004, I jumped on a plane, went to Toronto, had an hour consult with Dr. Manktelow and spent another half hour getting photos taken, and then it was over. They could do the surgery. It would take a year to set up, but it would happen. I spent the next couple of weeks clenching my teeth involuntarily because this could be the action that would make me smile after surgery. That wore off eventually, but for a while there, my jaw was so sore!

Karen

There hadn’t been any follow-up hospital appointments over the years and I was struggling through life with an eye that did not close or blink and was constantly dry and sore. I think people didn’t register it was a problem for me because it could be really sore but not look red. I plucked up the courage to ask my doctor in my twenties if he could help me but he just shrugged and said nothing could be done to help damaged nerves. So I took him at his word and carried on the way I had always done, trying out different eye drops from Boots the chemists, shoving my unblinking eye into my pillow every night and avoiding feather pillows because they stab your eyeball in your sleep!

Jennifer

I got the word just three weeks before the surgery date. February 3, 8 am, 2005. I made arrangements to leave right after our class had a two-day seminar. January 29. I was more stressed during that seminar than I had been in ages. I didn’t think I was worried about the actual surgery – I hardly thought about it at all. But, after spending two intense days with people I genuinely like and enjoy, the reality of what I was going to do set in. I had lived my whole life wondering what others thought of me and dreading new situations. Here were people that I had only gotten to know over the past six months and I knew them better, and they knew me better, than any bunch of students that I had known before. I was totally overwhelmed. All that angst, all the times I didn’t join in or do something because of how I looked, all the frustration and sadness, everything came up in the last ten minutes before we broke for the day. I cried. I didn’t think I would, because I usually don’t, and I just felt so tired. My friends were there. And they cared.

Karen

I was still trundling through life without any support from a doctor or hospital consultant for my facial palsy. I hated going to the beach with my kids because the sand would irritate my eye. The constant pain of an eye that doesn’t close is indescribable. Sometimes it’s as debilitating as a bad toothache or a migraine, sometimes it is bearable. Every morning you wake up to find out if you won the ‘Good Eye Lottery’. The way I slept and the amount of sleep I had would change my day into either a good one or a bad one. I still get very irritable if someone wakes me in the middle of the night because it doesn’t just make you tired, it often means a bad eye day will follow. It was around this time when I started thinking about building my first website and sharing my facial palsy story with the world.

Jennifer

So, we arrived in Toronto without incident and I had a pre-op meeting with Dr. Manktelow and visiting fellow, Martin. When they, and three students, arrived, the markers came out and I was covered in blue ink in no time.  Only rubbing alcohol takes the ink off and my face was “chemically peeled” by it all afterwards. You can see my before and after pictures on my website here (https://www.jenniferjesus-and-the-jabberwock.com/id3.html).

Truly one of the greatest pleasures is being able to close my eye properly. I couldn’t believe how great it felt not to have a dry eye anymore. And because it closed, it didn’t get all watery anymore either when it is windy or hot or cold or sunny or dark… (Jennifer had a gold weight implanted in her eyelid as well as smile surgery).

Seven weeks after surgery and I didn’t have any movement yet, but there was a tingling sensation at the corner of my mouth when I licked it. It felt kind of weird, like a little electric shock that traveled toward my ear from my mouth. I also got a tingly sensation right in front of my ear when I tapped my teeth together.

Six months less two weeks later and there was the very first spontaneous photo of me in real life with my new smile. I was still finding it difficult to get symmetry, but I was working on it!  Also, it was not truly spontaneous – I do have to think about smiling with both sides of my face, but this was probably the first photo of me smiling without being overly self-conscious.

Karen

I finished my website and put it online, not really expecting anything at all! I shared with some friends I had made in a small business forum and they were really supportive, they found my story interesting. I hadn’t really considered that having facial palsy made me interesting before. Then one day I got an email from Jennifer Allaby who was from Canada. She said she was born with facial palsy, just like me! Jennifer told me about the surgeries she had had and I was really interested in the eyelid surgery. I wondered why these surgeries weren’t available in the UK, no one had ever offered me any help like this. Spurred on by Jennifer I approached my new doctor, who unlike the previous one listened to me. She went back through my records and found out that I should have been reviewed at twelve years old by the hospital but it never happened. I had that very overdue appointment in my mid-thirties, only about 20 years late. I’m not blaming the hospital here, because for all I know my parents may have decided I didn’t need following up, or the appointment might have got lost in the post. I was referred to the local ophthalmology department and was prescribed eye drops for the first time in my life. I had previously been using a lot of those ones that reduce redness, no one had told me you need preservative-free eye drops if you use them more than four times a day. Thank goodness I was reviewed when I was because who knew what state my eyes would be in if left to go on like I was. I even had the gold weight surgery but I was allergic to the gold so they had to remove it, but it still helped after the removal and my eye still closed better after the surgery than it did before. I’ve also had some other minor surgeries to help tighten my lower eyelid and make it more comfortable. I wouldn’t have known there was help like this on offer if I had not met Jennifer online. What was really frustrating to me though is that I later found out these surgeries had been available for years in the UK. I felt like I had been forgotten. These days I tape my eye at night with a very sticky American cling film so I no longer worry about waking with a bad eye. I also had a punctal plug put in last December. Why did no one suggest this years ago? It has made such a huge difference. I know they don’t suit everyone with facial palsy, especially if your eye over-waters, but mine never did and I was the perfect candidate.

Finding our tribe

Nick, Karen, Carolynn & Jennifer

Jennifer and I took our friendship on to Facebook when that started and met a whole group of people born with facial palsy. Anyone who knows Jennifer today will know that she is one of the most respected people in the facial palsy community. She went on to become a social worker in her working life and also has had the lovely Carolynn by her side for many years. Jennifer has been a huge support to many of the younger people growing up with facial palsy. If I could describe the Jennifer I know now in one word it would be ‘pragmatic’.

I now run Facial Palsy UK and support people of all ages with facial palsy through my work. I was introduced to Charles Nduka who was the surgeon planning to set up the new charity by Nick Pearce, another person Jenn and I found through those early connections. Nick had facial palsy due to the removal of an acoustic neuroma.

I think Jenn and I are both pleased that children today will have more opportunity to connect with others because the internet has made everything that much easier. In 2019 Jennifer and Carolynn visited Europe for Jenn’s 50^th birthday celebrations and we finally got to meet, at Nick’s home in Hull. Many of the people Jennifer visited in the UK were our mutual friends from the facial palsy community. Facial palsy has gone from being an extremely isolating experience to being a truly bonding experience and I feel blessed to have met Jennifer, where my fp friendship journey began.

There will be parents of children with facial palsy out there worrying about their future. Facial palsy does shape your life and the journey can be difficult at times, but the friendships built through the shared experiences of fp are to be treasured. Those friendships will get children through.

Jennifer

Jennifer sadly passed away 26 October 2021, aged 52 years.