Monday February 22

Last night we didn’t speak much about what happened, but today we get into it, especially now I’ve seen first hand how bad things have physically gotten for Maja. I’d been told of course, but I guess I have to admit that until last night when I saw it for myself, I really didn’t understand how bad it all really was. I still don’t fully, until she reluctantly admits why what happened last night happened. The way I understand it is that she was caught in a double fix of not wanting to hurt my feelings and of genuinely wanting to try everything. For the past few weeks, along with insomnia, she’s barely been able to eat anything above survival rate, often going days or maybe even weeks of eating below the recommended calorie intake, and almost forcing herself at that. I also feel guilty at having introduced such fat-rich foods to her so soon, but I really had no concept at all of how much those kinds of foods could have affected her. That they could have caused such dramatic events was inconceivable to me. And I know what inconceivable means.

The one time we eat today, again quite late on, all we have is a super bland veggie soup – vegetables and water. Not even any salt. And some simply and very lightly fried white fish, after which Maja has another very tired reaction. It is this that triggers her to finally admit to the problems she has with eating, and I realise that I have to tone it down even more when cooking for her. No seasoning of any kind, and absolutely no oil. I really do have to treat her as though she’s properly sick with a body incapable of digesting anything beyond the simple. In that, this is like reintroducing someone to food who has been starved of it for so long for whatever reason. Within that, I’ve decided to eat only what Maja eats. It isn’t a wonderful diet but it really helps with the solidarity of the situation.

Talking about all this, today we focus on what stress has done to Maja’s body and general habits and the picture painted really isn’t pretty. We also decide that what she has isn’t an eating disorder. It’s more like the inability to be able to eat, which is quite different. And as she’s becoming more relaxed here, she is actually starting to want to eat and is even enjoying it a little, as much as one can enjoy bland boiled veggies and white fish. Although I have to say, I did do it quite well.

Maja:

I need to say, I love my family. I love my husband. With my whole heart. A lot of things have happened that have led me to where I am today. But this is one thing I am absolutely adamant on making clear. I can’t be angry at you, or blame you. I would never wish anything bad of any of you. I miss you. I love you so much it hurts my whole being not being with you. Every day. Always. I love you. 

I’m used to being seen as this strong woman that can do anything and never has any real issues, which makes talking about the issues I have really hard. I’m bad at talking about it. I am even bad at admitting any issues to myself. I’m fine. Nothing’s on my mind. Everything is wonderful. I am not vulnerable. I am strong. I am smart. I can handle myself. I can do anything.

Yeah, you get it, I’m that kind of person. 

This can sometimes lead to loneliness and isolation, even in normal times. Add to that, Covid, which has meant it even became frowned upon to meet friends and family. Meetings become sparse and, since I’m usually the one instigating meetings, they become practically non-existent. But I am not good alone, I need people around me to function. I get it if you don’t understand I can be both at once, but I can. I feel alone even when I’m with people but I am very sociable and need to have people around me. 

I’ve often felt alone and I have had a hard time to feel properly understood. So often I only tell maybe one person how I feel, or I don’t tell anyone. It’s hard enough to admit to myself if I have any issues, and if I tell someone and they don’t understand me or take it lightly, I find it so incredibly hurtful that I might not want to speak about it again. 

I always try to be openhearted and explain to people close to me what is going on, I would never purposefully hide my intentions. I just don’t have it in me to deceive anyone. Mark describes me as purehearted to such a level that I can’t even understand how people can have bad intentions. How people can want to hurt people. I can’t help but agree, I don’t understand how people would like to do that. I know some people do. I just would never want to hurt anyone. Ever.

I’m very selective about who I trust enough to talk about any issues, and I rarely even mention anything to anyone. Much easier on everyone. So the problem becomes when I can’t solve the issue by myself. That’s why I’ve been very stressed for a long time now. I’ve been very alone in a situation that grew worse, and I’ve not felt understood in why I’ve taken the decisions I’ve had to take by those I’ve confided in. Which makes me feel taken lightly in a bad situation, leading to further stress and isolation from the world around me. 

I hope that explanation of my personality makes it a little easier for you to understand why the story has come to where it is today.

I’ve been having a hard time recently, and I have had a hard time getting that understood. This has led to me feeling very stressed and I seem to be one of those people that have a problem eating if I get too stressed. It’s like I just can’t eat at all. Usually I am on the other side of the spectrum, alway having to control myself so I don’t eat too much and make sure I eat healthily. So during this period I’ve lost weight a little bit quicker than might have been advisable. I’ve stayed mindful that this is a problem, trying to not completely skip eating and I’ve drunk a lot of water to help me stay alert. A little habit I used to have from years back, is to take a bath when I’m cold, to heat up. I used to do this often, especially when trying one diet after the other. A lot of diets can leave you feeling really cold, so this time when I’ve had these problems eating I’ve taken a lot of baths to heat myself up.

Today I tell Mark about how it got to this place and that I want to return to ordinary eating habits as quickly as possible. He got really worried from what happened last night and I want to calm him down regarding that. I tell him about the stress and how that has made me unable to eat. And that this stress has been there for quite a long time by now, so my body needs to gently get back to normal eating habits. 

Mark listens. Actively. It feels nice to feel heard. I’m not sure how much he understands, but he is starting to puzzle together an image of where I’m coming from. We talk for hours and hours. Of how I feel both mentally and physically. A lot of the subjects I bring up seem to be outside of his normal experiences but he is a great speaking companion. It’s great that he actively listens and tries not to judge. 

Mark:

After dinner I cry in front of Maja for the first time. I have a chunk of my tongue missing. It got ripped off in a hospital accident when I was four years old and very much conscious. I’ve told the story many times, but have only cried once while telling it, which was during a counselling session when I was deep into my fibromyalgia years. Today I cry not for myself but for thoughts my mother and the ordeal she suffered as a result of my own trauma. She was only in her early to mid twenties at the time and what she saw would have mentally scarred the most battle hardened of people.

I was five years old, maybe four. For the purposes of this, I’ve decided I was four. I was in hospital for what was something of an experimental operation on a cleft palate which came as part of the deal of having a hare lip. This cleft is essentially a hole in the roof of the mouth, near the front. The idea to close it was to open up the skin up there, do the same to the end of my tongue, and then surgically attach the two together. The idea was that the two would become anatomically fused, then in a second operation, the tongue could be cut away, leaving the new skin behind, thus closing the hole. I was five, maybe four.

I naturally couldn’t talk much after this operation. There was some debate of me having a kind of signalling device for when I wanted attention. My mum suggested a whistle. I suggested a trumpet. We never got that far.

Although it was an NHS operation, I had a private room. I often did when I had operations at Booth Hall hospital where I was very well known by most of the staff, at least on this particular ward. My physical progress since birth had been so good that there were pictures of me on the wall in the main corridor to show it. This was among pictures of many of the other young patients unfortunate enough to have to frequent a place such as this. My surgeon was the legendary John Lendrum, known to me even deep into adult life, only as Mr Lendrum. His work in the treatment of hare lips and cleft palates was revolutionary and experimental and I believe he spent some time working in developing countries in this very field. I never saw him again once my time in his care was over, which was probably around the early teenage years, and he died in 2015 leaving behind a considerable legacy.

I think this is an excellent opportunity to post up my own selected excerpts of this tribute to him which I found on the website livesonline.rcseng.uk

He was appointed as a consultant plastic surgeon to the North West Region, at three widely separated hospitals – Booth Hall Children’s Hospital, Withington Hospital and Rochdale. It was a good thing that he enjoyed driving, usually fast, in coloured sports cars, with the top down. The stories of his car parking activities in the various hospitals were legendary. My mum said that this sounded exactly like the man she remembered. 

J L was a skilled surgeon. He taught all the time and enjoyed watching young surgeons develop under his guidance and inspiration. He hated management interference with his ability to provide the best possible service for his patients. He was not a committee man and never sought high office in any association, but was elected to the council of BAPS in 1984 and did much useful work chairing the manpower planning and development committee, shaping the future of plastic surgery. John was elected an honorary member of BAPS in 1995. He was an honorary associate of the University of Manchester.

John enjoyed painting and retirement enabled him to paint more. He described himself as an artist with a 35-year interruption for a surgical career! He was a member of the Medical Artists’ Association.

John was a colourful individual; he was loyal and generous, took great care of his patients and staff, but could be rebellious and outrageously incorrect! 

I have no idea what that last statement means, but I’m sure you get the picture. From what I take away from this, basically a man who knew what he was doing, cared deeply about it and what it meant to the people under his care – one of which was of course me – and had absolutely no time for people who had no idea what they were talking about interfering in any of his business in any way.

I was sitting watching TV – Lassie since you’re asking – when a nurse came in on her own. I was five, maybe four.

I didn’t know exactly what she wanted, but she was holding a syringe with a scary looking needle attached. I’d had all kinds of injections and needles since birth so the sight of a needle in the hands of an adult who was about to puncture me with it was already routine. It  held absolutely no fear for me. But this lady was alone and that did. She didn’t even say anything to me, just came towards me as though I was an object she could just stick things in. I wasn’t having that and moved away from her. She wasn’t having that and moved closer to me, at speed. I moved away from her again. She wasn’t having that and came again until the two of us were walking, then running round in circles around the room. Yes, a grown adult, in some petty state of thwarted authoritarian petulance by now at having been disobeyed by a small child, was chasing said small child around a hospital ward brandishing a needle. I started to say no, no, no. Then more. I was five, maybe four.

I screamed.

Yep. Everything just came apart.

I have no memory of that. I remember watching the TV, I remember her coming in, I remember the running round in circles bit. Between that and my mum and her mum entering the room – walking or running I have no idea – I have nothing. For what happened in between I have to rely on the memory of my mother, who wouldn’t even talk of this to me until almost 30 years later, such was the trauma it inflicted upon her. My grandmother never spoke to me of it and I can’t believe it’s a topic I would never have raised with her. What they encountered was me screaming, a bemused nurse, and blood. Horror movie blood. All in my mouth, all down my chin, and all over my white hospital gown and all onto the floor. Enough to slip in. I know that I was quickly sedated, then anaesthetised and operated on again to tidy up this mess. Within that, I lost the end of my tongue and the roof of my mouth was significantly collapsed and similarly scarred. The hold that they were trying to patch up was worse than it had been when it started, although over the years it has mostly closed, just by dint of my growing, so they could have just waited for that to happen and spared us all the – quite literal – pain, not to mention the, again quite literal, sweat blood and tears.

The nurse, I have no idea what happened to her and don’t want to speculate. The operation was abandoned as far as I know and, due to my own selective amnesia of the episode, I was spared the trauma that affected those two female generations. So I’ve always been able to tell the story with a bit of a jokey demeanour. But today I tell Maja of it from the point of view of my mother. It’s too much to think of and I’m barely through it when the tears come. Another little thing that brings us that much closer together.

Maja:

After getting back after dinner, Mark approaches me with what I think of his harelip. I tell him that I don’t really think that much of it. He continues with asking me, you must think something of it. No, not really. I mean, I can see that your upper lip is mainly scar tissue, and it feels a bit strange kissing you. It’s not like kissing anyone I’ve ever kissed before. But I’m OK with that. Mark is really happy that I seem to be so unbothered by it. I mean it was a big shock when I first kissed him, it just felt a bit off. It’s stubblier than usual. Yes, that’s a word now. Since there’s not much of the pink lip tissue, and the stubble starts just where the lip ends, the stubble kind of cuts into my lips when he needs a shave.  And also, his tongue is significantly shorter than normal, which kind of threw me off balance the first time, before I knew what had happened. 

When I’ve thought about this, I’ve seen and noticed the scar tissue, but things like that are deeply personal, so I haven’t been wanting to pry. I decided that I’m going to wait until he wants to tell me the story and that seems to be now. So he talks. And talks. And I get the opportunity to ask questions.

To me this story is worse than I could ever have imagined. So I just listen, and I feel with him, and hug him tightly as he cries. He cries, violently. For the loss of part of his tongue. For the hospital abuse that left him forever mutilated. For the trauma inflicted upon his mother and family seeing everything happening to him as they arrived in the immediate aftermath. For the time and time again of broken promises of surgically fixing the face. For the hope those promises gave, that continued being crushed. Time and time again.

To describe how it looks, his upper lip is almost nonexistent. The lower lip goes outward as a usual lip does, but the upper lip doesn’t have much of that soft pink lip tissue. There is a ton of scar tissue that seems to be connecting the lip tissue with the nose. And that tissue is so tight he has almost no movement there. And the nose is completely surgically made as well, but that story is for another day. 

Mark:

Let’s make this the other day. I was born without a nose. How did I smell? Terrible. Bum bum. Somehow, I have no idea how, it was constructed in the first days and weeks of my life. I think. Apparently it’s ridiculously hard. Or at least Maja says it is. She thinks it’s really funny. 

Maja:

My nose is soft and moves all over the place, I can make the tip touch my cheek, but Marks. Come on. It doesn’t move. At all. Hard as a stone. And quite big. Stone nose. Iron nose. 

His tongue looks like someone has chopped off maybe an inch or so and tried to sew it back together, so the tip of the tongue is missing. The whole thing is short and still has visible signs of where the stitches were. Honestly, if you just look at him, you won’t notice much of what I’ve been talking about, but I am still impressed by how well he manages to do everything, especially with respect to the many missing teeth, most of them being the upper ones.

Mark:

About those missing teeth. It’s not all gaps and stuff, like a boxer’s missing teeth, or the teeth of someone who’s really badly neglected them. They do all meet in the middle. It’s just that there are certain teeth most people have that I just don’t. Like the two little bunny teeth at the top in the middle. You see, I have no gum there. I just don’t. I know. I’m getting more attractive by the second.

Maja:

Just saying, I find Mark quite handsome. We’ve been discussing some of the drawbacks for a while now, so I thought it ought to be said.

I guess he has thought of the horrific tongue incident many times, but today he, for the first time in a long while, re-lives it once more. I feel honoured and happy that he wants to share his stories with me. It’s also nice to not be the only one that is talking.