Bukuria

Bukuria

by Skanderbeg

1 Disaster

Today is the best day for years. Not the best day in my life but certainly the best day for six years.

Six years ago, I was 18. I had gone to choir practice with my friend, as usual. And I had been chosen to do a solo in our next performance. But on the way back everything changed.

The first I knew was when I woke up but hurt all over and couldn’t move much more than my eyelids. I had been looking at the ceiling wondering where I was and what was going on when a face covered by a surgical mask appeared in my very limited field of view.

“Hello Bukuria,” the man began, “I’m Dr Nazir. I’m glad to see you are awake. But don’t try to move or speak. You have been in a car smash and are lucky to be alive. But I am afraid I have some bad news. You were a wreck when they brought you in here, and your face was badly burned. Most of the damage we can repair, given time, but there are a few things I can do nothing about.”

He paused. I was about to try to ask him a question when he continued.

“Don’t try to speak. I’m afraid that in the accident your neck was cut to pieces and your larynx was completely destroyed. I can rebuild your wind pipe but I’m afraid you will never be able to speak again.”

I had intended to be a professional singer, so that was enough of a shock to me that I passed out.

When I came round a nurse was watching me, also masked.

“I’m glad you’ve come round,” she said with a smile, “I’ll fetch the doctor. He wants to talk to you again.”

I was going to ask her a question when I remembered what he had told me. I knew there was no point. I would have to wait until I was told what had happened and how injured I was.

By the time these thoughts had passed through my mind the nurse’s face had been replaced by that of Dr Nazir.

“I’m sorry I had such bad news for you,” he began. “But I’m afraid there is more. It was necessary to amputate your right arm below your wrist to get you out of the car. There is a lot more we need to do to fix your body, but at least given time we should be able to do a reasonable job. But I am afraid there is nothing we can do about your voice or your right hand.”

By the time he had finished, I was sobbing my heart out. Dr Nazir waited patiently for me to recover

“Your face was badly burned and your jaw was shattered. We have wired your jaw and in time it should be as good as usual, and you can probably feel that your face is completely covered by dressings, with just two small holes for you to see through. In time we should be able to do plastic surgery and make your face pretty well as good as new, though it will be a slow process and for a long time you will have to wear a protective mask.

“Your back was pretty smashed up as well, and we shall have to operate. After that you will have to wear a brace for quite a long time. And your left foot was crushed badly so we shall have to try to reconstruct it. You also have a broken left wrist and right ankle but they will be as good as new in less than two months.”

“I’m sorry to have such bad news for you, but you are very lucky to be alive. If a passer-by hadn’t called the emergency services immediately, and if there hadn’t been a police car a block away, I don’t think you would have lived.

“But I have talked enough. Your parents are here to see you, so I‘ll go. I’ll see you again later.”

When my parents came into my field of view they were both wearing surgical masks but I could see that Mom had been crying. They didn’t stay long or say much. Mom was too upset. But I gathered that I was in no danger of dying but that the doctors were very worried about infection, so I was being kept more or less in isolation.  When they left, I tried to make sense of all I had been told. I really wondered if it would have been better if I had died.

Anyway, numerous operations and several months later, I was still in hospital, but at least now I could see more than the ceiling and was not on my own all the time. My jaw was still wired so I couldn’t open my mouth, but I had been promised that the wires would be removed shortly. The broken ankle and wrist had healed. My face was still covered by dressings but at least I could see properly. And after countless operations my spine had been pronounced as good as it would get – which was still pretty bad – and I was now wearing a complex steel and plastic brace which held me immobile from my waist up, so much so that I couldn’t turn or nod my head.

I had seen lots of really realistic false hands on TV and hoped to get one for my right arm, but was told that I would not be able to use one because of my brace. It was explained that they were controlled largely by my movements of the shoulders, and mine were held completely rigid. So all I could have was a hook like that Captain Kidd had had in my book when a child. I was very upset. It was almost useless. And it was so ugly and embarrassing that I tried not to let people see it.

They had given me a powered wheelchair with a joystick control to use but when I thought about going out into the rest of the hospital, rather than staying in my nice secluded world, I panicked. I just couldn’t face anyone seeing me. So after talking it over with Mom – if you can call writing with your wrong hand talking – she agreed to get me a long scarf to cover my face. Now when I went out all that was visible was my eyes and a tiny bit of the mask between them. In fact, I got so used to wearing the scarf that I usually only removed it to sleep.

And in any case, navigating the wheelchair was tricky as my left leg was in a complex brace from my hip down, and the brace extended beyond my toes so that my foot could be kept stretched. This meant that my leg projected over three feet in front of me and I had to navigate very carefully to avoid knocking down patients or staff.

I was surprised when one day the physical therapist told me that they wanted me to start walking. How could I walk in that massive brace? But she produced a shoe for my right foot with a patten fixed to the bottom about a foot below the sole and told me that with this I would soon learn to walk with the aid of a crutch. Sure enough, before the hour was out I was upright and wondering how I was going to move from the spot. Eventually, though, with a lot of help I became fluent at balancing on my brace, foot and crutch and learned to get around pretty well. Though for the actual process of standing up I still needed help, since it was so far up from a seated position. But it meant that I hardly used the wheelchair.

On my seventeenth birthday, I had only one present that mattered, but that was a real surprise and is my most treasured possession. It looks like a large cellphone but has a full keyboard. It is a fantastic device. If I type a sentence into it and press the GO button it speaks what I have typed. Since I got this enunciator I have not had to use a notepad to communicate, which is just as well as I never really learned to write legibly with my left hand.

The operations on my face and foot continued, and eventually the surgeon told me that he was satisfied with the look of my face and it just needed time to heal properly but I would have to wear a protective mask for some time.

The one area which was worrying the doctors was my left foot. Even all their skills hadn’t been enough to put the pieces back together again properly, and they told me that they were going to put a titanium rod in my ankle and foot to make it rigid. I wasn’t sure what that meant but they way they said it didn’t sound like good news. Anyway, the operation came and went. I hardly noticed as my leg had been in a plaster or a brace all the time I had been in the hospital.

Then one day Dr Nazir cam by looking more serious than usual.

“I’m afraid I have bad news for you,” he began.

Since most of his conversations seemed to start like this I didn’t take much notice.

“But also some good news,” he continued. The bad news was that they couldn’t put my foot together properly and it would always be rigid with my toes pointing straight down. The good news was that I would need the leg brace for only two weeks more. He assured me that then I would be able to start walking and should eventually be able to manage without a crutch.

Sure enough, two weeks later they removed the brace and I started exercises to strengthen my leg muscles, as they hadn’t been used for so long. But in the meantime I was back in my wheelchair. Then one day, Dr Nazir came by carrying a large box and accompanied by the physical therapist.

“We’ve come to get you walking,” he announced cheerfully, pulling out of the box a pair of boots. They were like nothing I had ever seen, though I have since discovered that there are similar fetish boots known as ballet boots. And that is a good name, because when they put them on me I had to stand on the very tips of my toes like a ballet dancer on points. It’s a good job I had had ballet lessons as a child. It felt very strange after so long to be putting weight on my left foot, but it was not painful, though I quickly discovered that my toes on both feet felt decidedly bruised after a walking session. Dr Nazir picked up my crutch while I balanced held on to the bed with my left hand, and adjusted it in length until it fitted under my arm. Then he helped me to stagger my first few steps across the room.

Looking back, it didn’t really take me long to get walking again and I seem to remember that after three months I was hardly using the crutch. Now I don’t even think about it, I have been walking on points so long.

A few days later Dr Nazir told me I was going home. Panic. Apart from the fact that I was still struggling to walk, I really didn’t want my family to see my mask and hook. I was already covering my face with a scarf whenever I was awake, and I would try to keep my hook out of sight inside the sleeve of my nightdress, which was easy as I had persuaded Mom to get me long sleeved nightdresses and to sew up the end of the right sleeve of each. They were also long to cover my brace when I was standing, so now of course they needed shortening. But now there were sure to be lots of visits from family and friends, all with lots of questions and embarrassed looks when they saw me.

When Mom came to visit next day I told her my worries. She said that she would quickly make a few skirts for me to suit my new height, down to the ground when I was standing in my boots, and could sew up the sleeves of my sweaters and tops, but I knew that in summer I wouldn’t want to cover completely, so that was only a quick fix.

But that night, watching TV, I was inspired. There was a documentary about Saudi Arabia, where there were arguments about whether women should be allowed to drive. Almost all the women were covered from head to foot in an all embracing black garment which I discovered as soon as I could get to a computer to do a search was called a burqa. I would wear one of these whenever I was with anyone other than my immediate family. I told Mom my idea, and she was horrified, though she understood where I was coming from. In fact she cried for some time when I tried to insist that that was what I wanted, so much so that I began to think I would have to look for another solution.

But next day, when she came, she opened her purse and took out a sketchbook. She showed me some sketches of ideas she had had to take the burqa idea and make it more acceptable. Basically, the garments she had drawn were hip length, constructed like as burqa but with one sleeve – the left one of course – and in bright colors and designs. The bottom edge would be long enough to cover my hook unless I wanted to reveal it, and my face would be completely invisible. But I would have my left hand free to do things with my one hand.

I was ecstatic. Mom promised to have one and a skirt made up by the time I was due to go home. And she did. She loved needlework, and did a great job. The burgette, as I later christened it, was in a beautiful soft cream fabric, and the skirt was a rich dark red and full at the hem. They felt great. I was still a freak, and always would be, but I felt that I could face the world, even my aunts and uncles.

But I soon discovered a problem. I couldn’t eat because my hand was outside the garment and my mouth was inside. The next day when Mom visited I explained the problem. She saw immediately what needed doing, and took the burgette home with her. The following day when she brought it back she had modified is so there was a slit shaped opening covered by a flap opposite my mouth. It worked great.

At this stage walking was still an adventure, so it took some time to get to the car, and lots of the staff and patients I knew stopped to compliment me on my outfit.

Getting into the car was hard, as I couldn’t bend my back or neck and my boots made my legs about nine inches longer than I was used to, but with some help from Mom I managed to get into the front passenger seat, and was soon back at the house I hadn’t seen for so long.

 

2 Home again

I had been right about my family and friends. There was a reception committee waiting for me. I was hardly in the house and sitting down than the questions began. Mom had told them I couldn’t speak except with my annunciator, but that didn’t stop me hearing the questions one after another. I typed just as fast as I could, forget grammar or spelling. Just get the answers down, as long as the annunciator could understand them. Surprisingly, very few of the questions were about why I was covered up. Either my mother had threatened all the relatives, or they were too shocked or embarrassed to ask. In fact I seem to remember that the only comments about my clothes were complimentary. They were far more concerned about my lost voice and hand, and my mangled foot. Oddly, no-one mentioned my back, perhaps because it was not obvious that I was wearing an extremely restrictive brace.

Within days, my mother had run up more skirts and tops for me, in colors and designs I had chosen. And interest in the newest freak in town soon died down. Some of my close friends began to come round, and as I got used to walking I used to visit them. I learned to ignore the stares in the street – though because I couldn’t turn my head and I couldn’t see sideways through the eye grills  in my burgette I didn’t notice many stares anyway. Ignorance is bliss as the saying goes.

One accessory my mother soon added to my burgettes was a pocket for my annunciator, positioned where I could easily reach it. And after I had dropped the device a few times, we worked out that it would be sensible if she sewed a loop just inside the pocket and I clipped the annunciator to a cord attached to this loop. Because I could soon do lots of things but picking things up off the floor wasn’t among them. I couldn’t even see the floor most of the time.

My family agreed that it was not worth me going back to school. But I wanted to study, so I began a computer based course on management and accounting. Hopefully, some day some brave employer might give the freak a job. I also got interested in history and spent a lot of time on the internet researching facts and browsing. It was a revelation that there were so many re-enactment societies in the US, and even more in England. I would have to watch on screen as there was no way I could dress as a medieval wench and serve in a fake medieval inn, or take park in a fight between the early settlers and the native Americans. But I did persuade Mom to make me some Victorian style skirts with hoops, bustles and so on, and got some period style shawls which I would drape over my head or shoulders. My mother even made me a flesh colored burgette to wear when I wanted to wear a shawl over my head, so my blank face wasn’t so prominent.

The next event was my eighteenth birthday. I didn’t want a party but my friends insisted. In the end I didn’t argue because the party was really for them and they were used to me, my silence and my clothes. One or two of the girls had asked why I was wearing my burgette so I explained that my face was protected by an ugly mask. Not one of them asked to see it! I don’t remember any of them asking about my back though.

Anyway, the day of the party came and I was sitting waiting for the door bell to ring. I had told Mom firmly that I would answer the door. I was quite mobile and she had other things to do, like the food. Imagine my surprise when I opened the door to find five figures dressed exactly like me. “Happy birthday” they shouted, and I realized it must be my friends. And I soon discovered that Mom was in on the act when she appeared from the kitchen in a similar outfit. It was only when I looked in my closet next morning for something different to wear that I realized that they had all been wearing MY clothes.

The next surprise was when Mom spoke. “Right, girls, from now on you are all silent for the rest of the party. Have you all got note pads and pencils?” Five heads nodded. As they trooped past me I noticed that several of them were wearing very high heels – not like mine but higher than I ever saw in the street.

They kept to the rule and there wasn’t another word from them all evening, even when the boys arrived and nearly fainted with shock. Mom briefed the boys and told them that if they didn’t like the party they could go, but none of them did. It took them some time to work out which girls was which, but soon there were pairs with the girls writing furiously and the boys frantically trying to ask their questions in ways that the girls could answer. There was a lot of giggling. Everyone danced, though Mom made them change partners from time to time as some of the boys couldn’t dance well and others were experts. I was surprised how much I could dance even on points, and was glad of my ballet lessons as a child. Of course because they were wearing my outfits, the girls could use only one hand, which also caused some giggles and I saw several of the girls being fed by the boys.

Eventually, Mom threw everyone out, as the party was showing no signs of ending. She made the boys promise to see the girls home safely, as they were not equipped for long walks and were not used to the restricted vision of the mesh in front of their eyes.

Next morning I thanked Mom for the party and asked her why she had got the girls to dress that way.

“Actually, it was their idea,” she explained. “They said they wanted to know what it was like for you. We couldn’t simulate your back brace but other things were the same as they could be. The girls looked hard for those high heels. A couple of them offered to get some fetish boots but I said it was not necessary. I think they will be wearing them more anyway, so the money won’t have been wasted.

During the day, one by one the girls came by to return the clothes. My mother was right. Three of them were wearing their heels. Interestingly, two of them were also wearing scarves wrapped round their faces and hair so only their eyes showed. When I asked they told me they had liked the feel of the fabric against their faces during the party. They also admitted that they had liked the mystery the burgettes provided, with the boys having to work out which girl was which. They said they were going to wear the scarves to college and see the reactions, and they hoped to persuade the other girls who came to the party to do the same, to tease the boys some more.

After this the girls often called after school for a chat. I noticed after a while that they were speaking far less and often wrote down their questions and comments to me in a notebook. When I asked one of them she giggled in an embarrassed sort of way and explained that they felt it was unfair for them to be speaking when I couldn’t. I told them I was not worried about hearing them. But it didn’t stop them from writing notes instead of speaking. In fact after a while hardly any of them ever spoke when I was around.

From that time on I went out sometimes with the girls, usually either to a movie theater or to a shopping mall where we would wander round and drop into a café for a drink. The girls often covered their faces and hair, and we all got lots of looks – and not just from boys, but we didn’t care.

 

3 Can things get worse?

Then things started going wrong again for me. I went into hospital for yet another operation on my face, as the surgeons tried to give me back something like what I had had before the accident. When I woke after the op, I couldn’t see. I soon realized that my eyes were covered by the dressings, and the doctor told me when he came by that they would have to stay that way until the dressings were removed as they had been working close to my eyes. So I was almost unable to communicate except by waving my hand to say yes or no. I was soon extremely bored, as I couldn’t see to get around and so had to spend my time in bed or in a wheelchair unless I had a guide. My mother was marvelous and regularly escorted my into the hospital gardens so I could smell the flowers. Bu I had few other visitors because they soon got bored.

Eventually, they removed the dressings and gave me a new mask to protect all their work. Immediately they put it on I realized that my sight was much more restricted both because it was quite thick round my eyes and because the vision holes were smaller, so it was like looking through a narrow tunnel. But at least I could see again, and could start getting around on my own.

But the day before I was due home from hospital I had another X-ray of my back, and more bad news. It was getting worse and I would have to have a new, even more restrictive, brace. When I went in to have it fitted a couple of weeks later I realized that they had been understating the case. The new brace didn’t stop at my waist, but came down round my hips and had bars that passed between my legs holding the front and back parts together. I could not now bend at all above my hips.

But this was not the worst part. The back support behind my head now projected upwards and curved over my head, ending at my forehead. Attached to this was a wide pad which pressed hard against my forehead, keeping my head even more immovable than in the past. From this at each side ran bars which connected with a new, larger support under my chin and reaching up to my ears. And the worst part was that my head was now tilted back so I could look only at the upper parts of the wall opposite, along with a large expanse of ceiling. With the mask restricting my sight to straight ahead, I could see almost nothing to help me when I moved around, and for the first few days I needed someone to guide me even at home.

Dr Nazir told me that this new design, and especially the bars between my legs, was essential so that my neck was kept in tension and there was no chance of the vertebrae crumbling and pinching my spinal nerve.

Until then I had continued to wear panties, though my mother had had to create some I could put on without bending, with tapes to close the waistband and Velcro to hold the part which cam forward between my legs. But with this new brace, even this design was hopeless, and I have never worn panties since.

Also, my burgette tended to slip so the mesh was not opposite the eye openings in the mask, leaving me completely blind until I adjusted it. It took my mother several tries to adjust the shape so that I could see out all the time.

And eating was a problem as I could hardly open my mouth at all when standing and not a fraction when I was sitting, as my jaw was pushed up to stretch my neck, so it was back to the liquidized diet I had been used to just after the accident. I soon discovered that my teeth began hurting but there was no way to tell anyone. Eventually, after a few visits to the hospital, Dr Nazir noticed and after a while worked out what was wrong. His solution was what he called a bite plate. It was molded to fit round my upper and lower teeth and fit in my mouth. Even if I had been able to speak before now I was effectively gagged. And it was impossible to remove it unless my brace was partly disassembled round my head, which didn’t happen often. Fortunately, there was a hole through which I could suck liquids and purees.

Anyway, like you do I began to get used to all this, and even started going out with the girls again, though always with one of the holding my arm to guide me, as I couldn’t see people approaching or steps, and all I saw of store windows was the lights. But I could still manage to use a straw, so visits to coffee bars were OK once someone put the glass in my hand, as otherwise I tended to knock over anything on the table.

But then further disaster. We were heading for my favorite coffee bar when I slipped. I went down flat on my front as I was rigid from my hips upward and had only one hand to break my fall. But it was not my fall that was broken. I could feel that my brace had been distorted, and it was very uncomfortable as my friends helped me stand. I knew it had to be sorted out as soon as possible, so I reached for my annunciator, only to get a sharp jab in my wrist. You’ve guessed it. I had broken my left wrist.

At the hospital I was led first to the X-ray department and then had a cast put on my arm which prevented me from doing anything with it. I was told it must be in a sling for the first two days until the cast hardened, but that made no difference as I was completely helpless again and unable to “say“ anything without my annunciator.

Nest to the orthopedic department, where they told me I would need lots of new parts for my brace. They straightened what they could but it was still uncomfortable, and I was told to lie down as much as possible.

When the new parts came, I was told they were the same as the broken ones, but I’m sure my head was tilted a bit further back – either that or the back bars had been bent and I had had several days to get used to them.

So more watching television and videos. My father had been very kind and fixed my set high on the wall, but now I needed someone to change the channels for me, and I couldn’t tell them what I wanted, so I ended up watching some awful soap operas.

My mother came in the morning after I arrived home looking serious.

“I think it is not safe for you having your right arm trapped under your clothes,” she began. “I know you want to hide it but I think we had better think again about how you do it. I have some ideas and have sketched them out.”

I was glad she was so artistic, as they really looked good. Eventually, we agreed that any future burettes should have two sleeves but the right sleeve should end on a matching padded “mitten” to cover my hook. I was still nervous about showing my hook so much. But she showed in her sketches that I could have all sorts of designs, from dress length to just below my neck, as long as they had sleeves. I gave my approval in the only way I could, by waving an arm.

And I have to admit that once I got the cast off it was much easier having two arms, even with only one hand to use. I could use my right arm to push open doors when I was carrying something in my left hand, for example, so I was not nearly so dependent on others.

But when I tried to use my annunciator it wouldn’t work. Evidently it had been damaged when I fell. After some phone calls the insurance company agreed to pay for a replacement but it took a week to come. When I eventually got it I must have been a real nuisance because I wanted to catch up with all those weeks of not being able to say anything to anyone.

And from this time on things generally got better. I began to go out again, but always with a friend holding my arm, and I restarted my studies which had been on hold for too long. I was really enjoying the course, so I spent a lot of time reading my texts and looking for extra information on the net – my father had installed my computer screen beside the TV, so though I had to find the keyboard by touch I could use it perfectly well – at least once I had mastered the keyboard shortcuts instead of the mouse.

My friends were great. About ten of them arranged a schedule so there was always someone who could be with me if I wanted to go out. It caused some fun with the boys when others saw a different boy with me each day, but they took it as a joke.

Needless to say, I ended up in hospital again a few months later for more work on my face. This was much better as afterwards I could see and when they replaced my mask it had much larger eye openings, so I could actually see straight ahead when standing – though I haven’t seen my feet since the accident!

I also had to have more changes to my brace. The head supports were not changed but Dr Nazir explained that I needed more support for my torso. The result felt more like a corset than a brace as it was pretty tight. What I didn’t realize until Mom commented was that it lifted my breasts much higher and they seemed much larger. This meant work for her adjusting my clothes, but also some compliments from my friends who claimed to be envious of my figure. I would happily have forgone the figure to lose the brace, but that was not going to be possible for a long time. If ever.

Of course, now I could see better I went out more, and for a while my studies suffered. But it was great just to be able to see what was in shop windows when we wandered through the mall. I wasn’t nearly so dependent on others, though my friends insisted that they should still provide a schedule of people to accompany me.

Of course, not being able to look down makes using my annunciator rather difficult. I have to type what I wanted by feel and then hold it up to check what I have written before pressing the “speak” button. It works but it is slow.

But after a while the novelty of seeing shop windows and other people’s faces wore off and I got back to my studies, which was just as well as I was due to attend a summer school in a few weeks. Michelle had agreed to go with me, and as I was officially “disabled” I was allowed to take her as my official helper at a very low cost. I have to say that I hate being called disabled. I may have lost a hand and my voice, but I do most things my friends do, even if with a lot more effort or a good bit slower.

 

4 Summer school

Eventually, the date of the summer school came. It was held at the state college in the next state, so was not too far to get to. My parents were unable to take me so I went on the bus, which was a new experience. We had to change twice, and I was very glad that Michelle was with me, as I found it hard to find my way around unfamiliar places. The school was only for four days, so I had a smallish bag – though my long skirts were all rather bulky so there wasn’t much space for other things. Mom had made me a couple of new burgettes with very short bodices, just resting on the slope of my breasts, and these were good as it was a hot week.

I soon found that I was not the only student who was classified as disabled as there were several in wheelchairs and one who was blind. But I was the only one with no voice, and the teachers took a bit of getting used to this. And I realized that at the end I had to make a presentation. I thought about using my annunciator but decided it would take too long, so opted for all the text in a Powerpoint presentation. This concentrated my mind as there is only so much you can put on the screen if people are to read and absorb it. So although my presentation was going to take the full 30 minutes I was allocated it would be by far the shortest. I soon discovered that short isn’t easy. Then the morning before the presentation was to be given I discovered that some of the college computers had software to turn text into audio files. I decided to stick with the Powerpoint but add comments which the computer could speak for me. Another student who was a bit of a computer whiz helped me to link the pieces of text to the Powerpoint images. I was most surprised by the praise I received for my presentation. The teacher said it was a model of clarity and brevity. It was certainly short, but I suppose the clarity was a side effect. But I didn’t complain about the praise. In fact I got good marks for all the work I did at the summer school, so the work I had done presumably had something to do with it.

But one aspect of the summer school didn’t go so well. On the application form for the course there was a section asking about special needs. I said I needed my food liquidized, but that evidently didn’t get through to the kitchen. The first day I had to live on energy drinks bought from a machine, but after that the kitchen staff sorted something out. They told me they didn’t have anything to liquidize food, but they blended it until it was just a mush and mixed it with a bit of water. It was just about possible for me to suck this up, so starvation was avoided, but I sure was glad to get back home and have some real liquidized food.

In the autumn I went into hospital for yet another operation on my face. Afterwards, Dr Nazir told me that it would be the last. His words were that I hadn’t got my old face back but it was the best they could do. I would have to wear a mask a while longer, but only until the scars from this operation had healed.

My success at the summer school encouraged me to work even harder, though I also went out more with my friends. My mother enjoyed making me even more clothes, though I noticed that they were mostly rather more suited to partying than to trekking. Not that I minded wearing nice clothes as I was not planning any strenuous exercise other than on my exercise machine.

Aster about six months I went again to the hospital for them to check up on the work on my face. Dr Nazir told me that the scars from the last operation had healed, but that because my face was still very sensitive I should continue to wear a mask until he gave permission for me to leave it off. When they showed me the new mask it looked more like a baseball face protector than anything else. It clipped onto the rods joining the headband of my brace to the chin piece and didn’t touch my face at all, which was really weird after having it covered by the other kind of mask for so long. The downside was that it held my burgette further from my face which made it harder to see through the mesh, which took some getting used to. But I didn’t complain as I was getting near to having no mask at all for the first time in several years.

But it did mean that I was more dependent on my friends again when I went out. .They continued to be great, and the schedule hardly ever failed to work. But in the end we agreed that I would only go out on certain days of the week so they didn’t need to be on duty so often – only to find that they spent all day at my house.

 

5 An end and a beginning

Before I knew it the time had come round for the next – and last – summer school of my course. I had started my final dissertation months before and it was making slow but steady progress. My tutor had seen the drafts and was quite complimentary. This time I made sure the kitchen knew well in advance about my need for liquidized food, and indicated that I didn’t need a wheelchair friendly roo0m like I had had last time. I hoped by saying this that I would be with most of the other students instead of in a first floor room with only the wheelchair students. And it worked. Michelle came again and we had a normal student double room, so we spent lots of time with the others when we were not working.

Now I knew about the facilities I was able to plan my presentation to make better use of the audio files. I didn’t try to make it a spoken talk, but used the voice clips to draw attention to things which might not otherwise have been noticed in the Powerpoint presentation.

I noticed pretty quickly that one of the young men on the course seemed to be watching me a lot, but I didn’t take much notice as my odd appearance often attracted stares. But when I gave my presentation he actually clapped – and when he started several others did too. I thought I had done pretty well, and was told after that my presentation got the highest marks of everyone, but it was the only one to be applauded. Then though the man seemed to be spending quite a bit of time talking to Michelle, so I decided he had fixed on her to chat up.

Then we were given our final marks for you course and I was astounded to find I had come top. I knew I had worked hard, but this was a real surprise.

The last evening there was a farewell party. I had been warned about this and Mom had gone to town, making me an electric blue dress. For the first time, the hood part and the sleeves were built in, and it fitted superbly, with just a little padding where it was needed to disguise the struts of my brace. As usual, it had a padded mitten for my hook, but in addition there were long flounces round the wrists so when my arms were by my side my hands were invisible. On my left hand I had a matching glove. I had been a little alarmed when Mom had made the skirt so narrow, but she pointed out that I only ever took small steps anyway in my high heels, and she was right. It looked great and didn’t actually hobble me. The really different part, which made me nervous at first, was that the hood had eye and mouth openings, and was covered by a white veil like you would wear at a wedding. I was afraid that my eyes would be visible, but I was assured by Mom and later by Michelle that they could see nothing. But the other problem with Mom’s first idea was what to do with my hair. By this time it was long and I wanted it showing. In the end the solution was a circular opening at the back of the neck through which my hair was passed after being put in a low pony tail. This meant that there was a good eighteen inches of hair below the veil.

I was sitting with Michelle, who was also looking great as Mom had made her a dress too, to say thank you for her chaperoning me. We were watching most of the others dancing when the young man who had applauded came up and asked me to dance too. My immediate reaction was to say don’t be ridiculous, how could I in my skirt and heels, when Michelle jumped in before I could reach for my annunciator, and agreed for me!

Our dancing wasn’t very lively, but my partner, who said his name was Peter, was the perfect gentleman, whereas I had initially assumed that he was curious and wanted to grope to find out what was under my dress. I was sure all the other students knew about my brace.

After three dances, the last a slow one where he gently put his arm round me and held my right arm as we drifted round the room, he suggested that we went outside and took a walk by the lake. I was a little nervous and I didn’t know him, but the view through the open doors was beautiful and I agreed. The first problem was just outside the doors where there were several steps which were too big for me to manage in my skirt. Peter saw my problem and after a few seconds simply swept me off me feet, carried me a few steps and carefully put me down.

“You must be wondering why I asked you to dance,” was the not unexpected start to the conversation. When I didn’t answer (my annunciator was in my purse) he continued.

“Michelle has been telling me about your accident and why you cover your face. I have to say I think you look great in that veil, regardless of what may be underneath. And of course I want to find out more about our best student.”

He couldn’t see me blush or know that I would have been lost for words if I had been able to speak. But he had evidently been thinking about this time, as he carefully worded his conversation so all I had to do was listen. He suggested that if I disagreed with him or wanted to say anything I should put my finger up to his lips to silence him, and then I could use my annunciator. But the only time I got near to using it was when he asked me if we could walk around the lake, as I wanted to say “no” but in the end agreed, despite being rather worried about the soft ground. In fact I need not have worried, as Peter carefully steered us way from any rough or soft ground.

By the end of our walk I knew a great deal more about Peter and had discovered that he had grilled Michelle pretty thoroughly about me so he had little illusion about the physical defects concealed by my clothes. And I began to feel very content to be with him. He was gentle, considerate and intelligent and he had used his intelligence to think about and plan the evening. Obviously he wasn’t put off by my brace, mask or hook.

Incidentally, I had long since stopped worrying about reactions to my boots. Most of the girls thought they were outrageous but secretly wanted a pair, and the boys generally thought them sexy. Even so, I still kept them covered as much as possible, as there are only so many places where fetish clothes are acceptable.

By the time we got back to our starting place I had decided that Peter could be the man in my life, but I could not really believe he would want damaged goods like me. He helped me up the steps the same way as we went down, but this time I put my arms round his neck, and when he put me down I was very slow to let him go. He reciprocated by kissing the top of my veil. I reckon he had worked out it was about the only place I wasn’t covered in hardware.

Anyway, the summer school ended next day, and Peter lived three states away, so we didn’t see each other too often unless he had a long weekend off work and could come over. But gradually, we realized that we really were in love. This astounded me as he had never seen me except securely shrouded in clothes and a veil or burgette and he knew about the bad parts like my foot, my back, my missing hand and my scarred face.

But eventually, he turned up unexpectedly at the door one Friday evening and told me firmly we were going out. I had just finished a website project, so was free for the next few days, and accepted gladly. He asked my to wear the dress I had on when we met, which I gladly did. Then to my surprise he guided me out to a brand new Landrover. He explained that he had bought it with his bonus because he knew how hard it was for me to get into a low slung car. It was the first time I had been able to get into a vehicle without a lot of help.

 

6 Just a meal?

He wouldn’t tell me where we were going, but we drove for over an hour before he turned in at a restaurant. As we approached the door he took my right arm just like any other boyfriend would, giving no indication that there was no hand at the end. As soon as we got inside a waiter in tails approached, and Peter told him that we had a reserved table. We followed the waiter into the restaurant but he took us right through to a lobby beyond, into an elevator and then to a private room on the top floor. Fortunately it was still bright outside as my sight in dim light was almost nothing, but I could see a spectacular mountain landscape as we sat and ordered drinks.

The meal was fabulous, Peter was gorgeous and, you have guessed it, he proposed. And I accepted. I didn’t use my annunciator. I grabbed a pen from my purse and wrote “Yes” in large letters on the table cloth. At that he tried to kiss my face, obviously in the heat of the moment forgetting about my mask. Of course he was brought up short by the feel of the mesh through the fabric, and we both fell about laughing. But after that he did something he had never done before – he felt me up and down. His explanation was that he now needed to now what he was buying! I hit him with my hook, but not hard enough to hurt, and then let him carry on, the feeling was so great. He said he actually found a few places where he could feel flesh through my dress. And once he had realized that my breasts were not covered in steel he gave them a good exploration, which was blissful.

When he had had his fill of this, he suddenly looked serious.

“I have been researching your name,” he began, “and had discovered it means beautiful one.” But since I have never seen you and you tell me I never will, I can’t call you that. I’m therefore going to call you Heshturia, which in the same language means silent one. Does that upset you?”

I was so astounded I didn’t even reach for my annunciator to reply but just sat there.

“You see, it’s a perfect name for you,” Peter said, laughing and hugging me hard – so hard that if I hadn’t been protected by my brace he would have crushed me. When I remained silent he looked a bit worried and started talking again.

“If it upsets you, I won’t, but I think it is a pretty name.”

I stopped him by putting my finger to his lips. Then I put my arms round him to tell him I was not upset. So from that day until now I have been Heshturia to Peter, and gradually to almost everyone else too, even sometimes my parents.

On the way back, Peter told me that in the hopes I would accept he had been looking at apartments. We needed somewhere we could both work from home, and which would have the facilities I needed, like no stairs, high worktops, and good lighting. I said my only other requirement was absolutely no mirrors. I had already had my parents get rid of all theirs except the one in my mother’s closet. It meant I never had to see myself. Peter had no problem with that.

I thought my parents would be astounded at the news, but all Pop said was “Great”. I discovered later that Peter had again been the perfect gentleman and asked their permission first. Of course all my mother could talk about was my wedding dress!

I wasn’t sure about a church wedding but Peter and my parents insisted. And to tell the truth, I was used enough to being on display that it didn’t really faze me.

As the wedding approached I began to worry about my brace. It was pretty bulky between my legs, and would make love making very difficult. I hoped it was not going to be impossible. But I was too shy about it to mention it to Peter, though Mom was very supportive and assured me that there would be a way.

Come the day, my dress was even more spectacular than the one for the dance, and even tighter in the skirt. It had the usual hood with mesh over the eye openings. But at my insistence the veil came down to my hips, though my hair had grown so much that at least six inches showed beneath it. I was especially proud of my long hair and had been waiting for it to be long enough to sit on. And at my mother’s insistence it had a train. But only one mitten, as I needed my left hand free for the ring.

One of the first things I had done as soon as I was engaged was to ask Michelle to be my bridesmaid. Mom made her dress, too. It was somewhat similar to mine but in a peach color which suited Michelle. I don’t think the skirt was quite as narrow and there was no train, but I was surprised when Michelle said she wanted a veil like mine, only thicker to make up for the mask inner layer over my face. If I was to remain invisible, then so was she, she insisted. Of course my mother made her own dress as well, and although it did not upstage me or Michelle it was beautiful.

Peter and I had several discussions about how I would give my vows. I didn’t really want the fuss of using my annunciator, as it wasn’t my real voice anyway. In the end we asked the priest for permission for me to give the answers in writing. There were really only two different replies, so I printed the words out large on two sheets of paper, ensuring that I could tell them apart by their shape, and my mother arranged for them to be suspended from the waistband of my dress. So when the priest asked the question I took the appropriate piece of paper in my hand and gave it to him so he could read out the answer. I must admit that I practiced this for quite a while with Peter beforehand, as I really didn’t want to make a mistake.

It was when I turned to return down the aisle on the arm of my new husband that I first saw that Michelle was standing beside a man I didn’t recognize. But I had to wait several days to find out who he was as I wasn’t able to use my annunciator during the reception and Peter didn’t know.

Before we left for our honeymoon I changed into a dress slightly more suitable for traveling. My mother had really enjoyed making this one and it had a skirt as full and my wedding dress had been narrow. The fabric was a dark green taffeta, so it was quite stiff, and it had several petticoats underneath and really stood out from my legs. As usual, the bodice was fitted and had a built in hood and long sleeves. She had repeated the long frills at the cuffs but I wore white gloves and a white veil.

Anyway the wedding night went fine, though Peter took some time to find a successful position, especially as I was rigid from head to hips and therefore not able to do much except lie on my back. My mother had come up trumps with a Victorian style nightdress which was as full as my going away dress and was covered just about everywhere with flounces and lace. But at my request it had elastic at the neck so that the hood wouldn’t slip off, and the usual mitten for my hook.

 

7 A new life

And the days went quickly. Peter had refused to tell me where we were going, except that it would be in the Landrover, which suited me. It turned out to be a holiday lodge by a lake in the mountains. But Peter had researched carefully, and there were plenty of nice firm paths we could walk without my boots causing problems. There was also a good pizza restaurant. This was fine except that too much food too often made my brace too tight and rather uncomfortable, and anyway liquidized pizza wasn’t anything special! Peter joked that it was the perfect slimming aid, on which I hit him with my hook – padded as usual of course!

Then we returned to Peter’s city and the apartment he had chosen. He had spent a lot of money and thought on it without ever asking me, but it is great with plenty of room, high work surfaces everywhere, and lots of light, even though it is completely private. One of the best things is a secluded balcony where we often sit in the sun and just enjoy each other’s company.

A few weeks after we returned from our honeymoon, Michelle and her new boyfriend visited for the weekend. I was most surprised when she arrived wearing her wedding day dress complete with the thick veil she had insisted on. Her boyfriend loved it, though, and she had worn it at his request. In fact she played up the thickness of the veil, and instated that her boyfriend guide her everywhere as if she was blind. He, in his turn, took advantage and hardly ever took his hands off his girlfriend’s waist or bottom!

I had never discovered quite what Peter’s job was except that he must be well paid. He had told me that he managed the IT for a manufacturing company. What I only discovered after we were married was that his father owned the company and was a millionaire. He wasn’t like any idea I had of what a millionaire would be like. But I also discovered eventually that the money for the Landrover had certainly been helped by Peter’s bonus but the bulk had been a gift from his father. But Peter earned enough that we didn’t have to worry about money.

After about three months of marriage I had what was to prove my final hospital visit about my face. Dr Nazir pronounced himself satisfied and said I could leave off the mask as long as I regularly rubbed moisturizing cream into my face. This was great news, though suddenly my hoods were against my face again, which took a bit of getting used to – and some further adjustment by my ever patient Mom. I had thought about learning to sew, but with my very restricted field of vision found it impossible, as if I put something down I couldn’t find it again.

Peter celebrated that night by kissing my face repeatedly through my hood, until we retired to bed for some more serious activity.

And the next day Michelle phone to say that she was engaged, and could she have my mother’s phone number as she was going to ask her to make another wedding dress – “with a big, thick veil“, Michelle laughed, seeing that’s how I caught Richard.

Even better, two months later when I went for a regular check on my brace Dr Nazir started his conversation with a new phrase.

“I have some good news for you”.

I nearly fainted!

He explained that there were new developments in brace design and they would be suitable for me if I wanted to make the change. But it involved drilling several holes in the back of my skull and literally bolting my brace to my head. To reinforce it I would have to have a plate cemented to my top teeth with a bar each side back to my brace. But there would be no chin support so I would be able to move my mouth freely. He told me to think about it for a day or two and discuss it with Peter.

We didn’t take long to agree that it was a good idea, so I spent a week in hospital while that took moulds for the new parts and cemented the plate into my mouth. I was under anesthetic when they drilled the holes in my head, or I am sure I would have fainted anyway. The new arrangement still puts tension on my neck in the same way without pressing on my chin, which is much more comfortable. And there is nothing covering my face except the two narrow bars which came out of the corners of my mouth and curved back behind my head. It took me a while to learn not to drool, but it is bliss to be able to eat normal food after so long.

We celebrated my return from hospital by going out for a proper pizza.

The only downside of the new brace arrangement is that my head is tipped back even more  so I am now looking even higher in the air, so the best I can ever manage is to see things in front of me level with my eyes. But I have learned to cope over the months, and the difference was not much. Peter says he likes it because it makes it easy for me to look at his face!

Anyway, I have settled down to married life and my new home town has got used to me. I don’t get so many new outfits from my mother now, and have even bought some skirts in the malls, just getting the longest I can and letting people stare at my boots – though to tell the truth they hardly seem to get any attention compared with my veiled head. What I never compromise on is keeping my face and hook covered.

But in fact I no longer have my hook. One day about a month after I shed my mask Peter told me he wanted to take me to his company to meet some of the staff. This turned out to be a smokescreen to get me into their workshops, where he told me that he wanted to make me a new right hand. He explained that it would only be a rigid model, but it could be a perfect match for my good hand. He explained that the company had bought rapid prototyping equipment and was exploring its uses. Essentially it could make a model of anything for which it had a computer model. So my left hand was carefully scanned by an ultrasound machine, and then Peter spent a few minutes manipulating the computer file to make a mirror image. Within an hour I was seeing a hand literally taking shape in the machine, an exact mirror image of my left hard. The material was a pretty rigid plastic, which Peter explained would not be very strong. His plan was therefore to give the final version a steel armature. And of course it had to fit my stump. So before I left they scanned my stump with the ultrasound machine.

About a week later. Peter brought the final version home. It fitted perfectly and looked so realistic except for the lack of a flesh tone. Ever since then I have worn it with a thin glove over, and after getting used to it I stopped hiding it with a mitten. If course it doesn’t allow me to do anything extra but it is not as ugly as the hook.

 

8 The big question

But to come to this morning. I had gone into the bathroom to use the pregnancy tester, as we are hoping to have a baby – if the brace will let me. I had taken off my hood so I could read the test properly to confirm that it really was positive when the door burst open and Peter came in.

As soon as he saw me he stopped and stuttered an apology. I had automatically turned to look at him, forgetting that I was not masked. Before I knew what was happening Peter had whipped out his phone and taken several photos of my face.

“You are beautiful” he shrieked. “You told me your face was a mess, but look at these pictures. It’s really beautiful.”

And he was right. There was not a scar to be seen and Dr Nazir’s “the best we can do” was a really beautiful sight. Even I had to admit it. It wasn’t quite the face I had before the accident but it certainly didn’t need hiding from the world.

“So I can call you Bukuria after all,” said Peter, hugging me and kissing me all over my face.

“That’s until I get too fat,” I retorted, laughing and showing him the pregnancy test kit. He hugged me again.

“But now I have to talk to Dr Nazir again about the brace. I need its support but I need room for the baby to grow. I hope that is going to be possible,” I whispered in his ear.

“You can’t be the first person wearing a brace to have a baby,” retorted Peter. Have a look on the net today, and see what you can find. But I am late for work. See you later. Let’s go out for a meal and celebrate.”

And with that he was off.

So now I have a dilemma. For the past six years I have kept my face covered day and night. Obviously I can’t keep it covered when I am at home with Peter, but can I actually face going out in public without a veil? In a way it has protected me from the world. I am still “damaged goods” in so many ways. Do I want to shed my protection?

During the day, while Peter has been at work, I have thought constantly about this. I haven’t showed my face to anyone since the accident. Peter is the first and only person to see it. Can I now face losing the privacy my veiling has given me? I am not sure I can. I have just realized that as soon as Peter had gone I put a burgette on. Perhaps I can’t believe what I saw in the photo and don’t want to lose it by seeing my face again. But most of all, I think, I want to continue to hide. My veils let me live in a private world where no-one knows what I look like. I can hide emotions, worries, tiredness. I rather like that. Of course there is no point now in veiling for my husband. And I’m sure he has shown the photo on his phone to everyone at work. So, I really don’t know. I shall have to see what Peter wants. If it was just me I would cover up, but Peter may want to show me off, and I have to admit that Dr Nazir did a marvelous job. It’s not my old face but it is probably more beautiful. Do I owe it to Dr Nazir to show off his work?

But an immediate question is what to wear tonight. I know Peter will want me to wear the dress I wore for our honeymoon. If I wear that I shall be veiled as usual. So for tonight that is my choice. After that, let’s see what happens tomorrow.

 


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