The disabled fashionista
Complex chronic illnesses may bear the same name, but the manifestation can vary quite a bit. I personally get a little bit frustrated when I don’t quite fit in with the rest of the crowd, and it happens a lot. I was diagnosed with fibromyalgia twenty years ago but always doubted the diagnosis because at the time, I was more fatigued than I was in pain. In my old age, the pain has doubled so I no longer have such doubts. I now know I also have Ehlers-Danlos Syndrome, but I don’t have allergies and obvious mast cell activation disorder like so many others. One thing that sets me apart from most people with the disease is that I have an obvious spinal problem, and it’s not scoliosis, it’s spondylolisthesis. It’s related to scoliosis but in my case, the spine protruded, and I was told it was kyphotic. Normally kyphosis is a problem of the upper part of the spine and it tends to affect senior citizens who get the hunched up posture.
When I was eleven I noticed this tendency to be hunched from photos and made a conscious effort to walk straight. What I could not affect unfortunately was the problems in the lumbar area. Anomalies were noted during school check ups when I was ten but nothing was done and no one seemed to know what was going on. I was in pain and in my late teens, I brought a cushion to school to lean against. When I was fifteen, I had my first bunion surgery, and it didn’t go well because no one understood anything about hypermobility. Instead I just suffered needlessly. That winter, I could have had a lovely time in Lapland with my mother who was living in her brother’s cottage over the cold season. It annoys me even to this day that I was distracted by the poorly healing foot. When I was about sixteen or seventeen I was in paediatric hospital to get the spinal deformity checked over, and was swiftly discharged on grounds that they didn’t have a clue what my problem was. The spine was just left to collapse. The rationale was that I should finish growing before any intervention could be done.
It seems crazy but I went inter railing in 1984, carrying a really heavy backpack. In 1985 after graduation from High School I left for England where I studied interior decoration and art history for a year. I got my diploma as well as an A-level in art. When I returned home, a major surgery was finally scheduled. I had a the surgery in the autumn 1986. I spent three weeks in Invalidisäätiö hospital and a couple of months in a brace. No one explained anything to me and just sent me on my way. I later discovered that they had performed a Wiltse approach, which basically involved a fusion and a propping of my spine with pieces from my hip bone. I felt completely abandoned by the health professionals but I just tried to get on with life and was never particularly precious about the spine. I was very much aware of what I could and could not do. Psychiatrists have tried to insinuate that I’m lazy and avoidant but I have always been the complete opposite. Perhaps that was better in a sense because I got a lot of exercise over the years. I was deeply fatigued but I was always conscious of needing to move as much as possible.
I probably also suffered from mild restless legs syndrome and found exercise helpful in controlling the inner restlessness. I did all this despite growing fatigue and post exertional malaise. When I was in my late twenties, I started to dream about practising Kung Fu. I was so inspired by the TV shows with David Carradine… I cried and cried because I knew I could never do anything like that. In the end I decided to defy destiny, and enrolled in a Kung Fu course. Despite my torpor, I finished one course and received the white belt. I liked kicking and boxing. Unfortunately, that was the point I had to give up because I would not be able to roll on the floor and do all the other more advanced exercises. In fact, I was completely burned out from the effort and rather relieved that I got the desire for such mastery over the body out of the system and could put the issue to rest.
The point is that I have some crippling health issues that are not at all invisible, but I have kept them invisible because of shame. We are not talking only of an aesthetic issue. Yes I hated the way my back looked from behind. Even as a teenager, I had hidden the back by sliding along the walls in the changing rooms and altered a black gym suit that covered more of the body than bathing suits so that I could use it when we were swimming. I was thrilled when I found a bathing suit in the late 90s that had a small skirt. But truth to be told, my legs were ugly as well, and so I was always worried about it. I was terrified of what other people would say if they saw the deformities, and obviously this anxiety was tremendous when it came to the task of dating men and appearing naked.
I tried to stay as skinny as possible so my bottom wouldn’t look so big. There was also a question of physical discomfort because there was always a nagging pain, and the relentless, limiting stiffness that prevented me from stretching my back like you normally would. I always felt icky and my skin was dreadfully greasy, which I felt constantly and tried to rub off with little success. The physical limitations and sense of being imprisoned in a defective body felt claustrophobic. As a consequence of the skeletal anomalies, I had a huge problem with clothes. Because of the spinal deformity, I had very wide hips and a very short upper body, and there were no jeans in the world that would fit me. The trouser selections were devastatingly poor and I usually looked like a clown with the trousers all the way up to my breasts. Instead of such awful contraptions I had to look for jersey trousers that were easy to alter, and so I had to cut the waist and reinsert elastic to fit my proportions. There was also the issue of a very painful tummy so I could not have anything pressing against the middle of my belly. When leggings became popular, I was first rather horrified because they made me feel naked. I started to wear them at home for comfort, always cutting down the waist line to fit me although my sewing skills were basic and the waist never looked good. No matter, I had to have the shirts cover up the waist anyway, and this was embarrassing at a time when no one wore their shirts that way. Skirts were even worse then trousers since they relied on the waist to stay in the right place and not drop. I can’t even begin to explain just how much trauma all this caused me.
But that was not all. Jackets, shirts and jumpers were usually tight in the wrong places and completely unsuited to my awkward and stumped shape. Fashion was completely against me at this time. I ended up buying clothes that looked like tents on me. This was not the era for the boxy clothing of today either, and so I felt extremely self conscious and ugly. The big shoulders and narrow hips of the fashion of the time was the opposite to my shape. In fact, I could never dress the way I liked. Because if severe bunions and bunionettes, shoes were becoming an increasingly distressing issue. Even colours were a problem because it was expected that women should wear pastels, which I hated. I longed for masculine clothes but I was petite and could not wear mens’ apparel. Added to all this hassle was the lack of money and choice, because there weren’t a lot of shops in Helsinki. H&M helped but they didn’t set up shop until the late 90s I think, and at that point a better trouser fashion was introduced with lower hips and bootlegs. I was forever running around looking but had to contend with the cheapest clothes I could find. In the 80s, there were also no charity shops. I ended up making a few nice finds at the flea market, but for a student, even thrifting had to be limited because of finances.
The worse I felt, the more I yearned for stylish clothes. I don’t think that’s unusual at all, although there’s an idea that disabled and chronically ill people shouldn’t be interested in their looks (for instance, it could suggest that they are not ill after all). I created my own style, sure. Some of my clothes were quite nice and people sometimes said I always looked like I’d made an effort and that I had style. But I dreamed of something else entirely. True style! If I had had a normal body, I’d have made any old rag look stylish!
My mum helped me a little because she knew how to sew, but she then moved to Lapland and gave up on helping me, I’m not sure why but I guess she was just too preoccupied with other things. I was pessimistic about finding nice fabric though, because most of what you could find in the 80s was dreadful. It was like someone had eaten too much candy and thrown it all up. I designed a nice straight dress and a little jacket for my graduation, but in retrospect, I think the dress was flimsy polyester. As I grew older I became sensitive to the feel of polyester and now refuse to wear artificial materials.
So when I was getting married, I really had no choice but to get a dress made for me. Well, I wanted to, of course! But since it wasn’t cheap, my dad was on this occasion willing to help. At least I think he did. Either way, Martin and I went looking for fabric. All my life, I had imagined getting married in green velvet, and so this I now had to find. We got a free ticket to Stockholm where we scoured the shops, but found nothing other than some vintage metal bowls for fruit and such. One day when we visited Helsinki I thought we should try an old shop I remembered, and lo and behold, the had the exact right cotton velvet fabric. I got matching silk lining material from a specialised shop and some high quality lace. My mum and I then thought about how the dress should be sewn in order to hide the unfortunate lower back problem. We ended up with a dress that had a high waist line in an Empirical style, but an otherwise Victorian inspired look. Martin found a 19th C Western suit in cotton online and matched my dress with a green silk scarf. Considering how poor we were, this was a rather perfect look for the two of us. The only other time I felt so beautiful was during the traditional dance at my school when the top class leaves and the students under them become the oldest. On that occasion, my dad had organised for me to visit the Swedish theatre, and they picked me a trashy old dress that fitted me. It didn’t matter that shreds of lace was hanging here and there, I have never felt so beautiful in my entire life! So when my wedding was at the door, I wanted to feel like that again.
I had some vague idea about looking like a lady out of a Welsh fairytale so I dyed my hair henna red and imagined some kind of hair piece with real ivy. In the end I didn’t have much time for getting this piece in my hair on the day of the wedding, but thankfully my intuition had worked well and it looked good. I’m not sure why no one helped me with this. My mum was in the house but she never took part in my preparations. I don’t think she was very well but I’m not sure why.
In the end, a lot of things were done in a hurry and I regret that. Planning a wedding on a very small budget is not easy. The relocation was obviously very stressful because we didn’t have much time to get the house in Wales in some kind of order before the big day. We arrived on 22nd July and got married on 20th August 2010 at the local town hall. We looked unusually glamorous for this sort of thing. But at least we fitted right into the Victorian decor, and it thrilled me to experience this oldy wordly British ambience right from the start. We had a small vintage looking CD-player that played the rousing The New Tuesday Weld song ‘It’s a Beautiful Li(f)e’ that I also played at Martin’s funeral. Afterwards, everyone gathered at a pub and had those ghastly sandwiches they always insist on serving in this country. But the ambience mattered, of course, and it was a kind of fun to give my own friends this experience. Of course not so many had been able to come all the way to Wales but I’m grateful for the ones who did. Well, that is, apart from the French one from my time in art school who never got in touch again after the wedding. She seemed pissed off with me because my cat Robin had peed in her bed and I hadn’t had the capacity to deal with it. Clearly she didn’t comprehend that I was struggling to cope with my health condition. After the wedding, we even took some guests around to see a bit of Wales and that was unbearably stressful as we needed two cars, so I had to drive in left hand traffic with a left hand gear, which had never practiced. That was it, despite having sent a thank you card, I never heard from the French bitch again! To be fair I was a bit shocked by her gift which was a very sloppily executed poor painting with a separate frame that I would never hang on the wall. I was also dismayed when I noticed that she did stay in touch with my Polish friend whom she was sharing a room with in my house.
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The next day, we had a reception at a farm inside an old newly renovated chapel. My mum, I and two of my friends who had arrived from elsewhere had worked hard to create some ambient lighting with candles, but it was hard because of the dark and big space. No one offered any help. Unfortunately, I pushed myself way too much and acquired a nasty headache that plagued me throughout the celebrations. During the party, I was flying around trying to make sure people were happy but didn’t enjoy anything that much myself. Martin, who had spent his adult life in High Wycombe, had now spent a few years integrating into the small town community, and was therefore keen to have a community wedding. I thought it would be a door to the community, but it really didn’t work out like that, and it’s the one thing I really regret. As was customary in Martin’s folk music circles, he had said to people that their music was welcome as a token of a gift, but in reality, we ended up with a lot of ego trippers who wanted the stage for themselves. One of his exes was noteworthy in this respect. She was also a woman who sent me a long eulogy the day before Martin’s funeral which he expected me to read out loud at the service! I could not believe it - if she wanted to pay her respects, she could do it in person. She refused to understand that there was no time for her ramblings in those twenty minutes, which had already been minutely planned, and I was definitely not going to do some show for her at the gathering after the funeral. In fact, Martin had several unpleasant exes he wanted to stay friends with, but I was not that happy as most of them were quite possessive and one even stalked us.
Martin and I had also prepared a couple of songs we sang together but this was quite honestly a waste of my precious energy and we didn’t even get any feedback so apparently our number was not that great. Sadly my mum was also not well enough to work out the video setting on my camera so there are no recordings of any kind. It would have been nice to see what our vows sounded like as we made it into a bit of a spectacle.
We paid for caterers to have nice Scandinavian style food but barely got any food ourselves before it was gone. People came and ate the food and never returned the favour. I remember my mum pointing at one man who had a massively heaped plate and kept going for more. I thought people’s manners were pretty weird and a waste of our resources, because in the end, I got nothing back, not even any gifts to speak of. Most people came and went and never became part of my life. The final mistake was leaving early for a somewhat fancy hotel a bit further away. We should have camped at the farm like some of the others and would have enjoyed some more social moments with guests.
The hotel had asked us to be there before 11 pm, which was really much too early, and when we got there, we were told 12 would have been fine. When we finally arrived there, I was on overdrive and unable to sleep. My mum had agreed to fetch us but I believe she struggled with the driving and finding the hotel, so must have been quite poorly. I was completely shattered the next day, yet I had to entertain our guests. It’s hardly surprising I was burned out for months and had thirteen colds and flus in the following year. So what can I say. The wedding was an experience and I’m grateful for all the photos, but a small family occasion would have been much better for me. Sometimes we just shoot too high. Everything just rolled on so fast, I didn’t have the time and the senses to think more deeply about my needs.
During my time as a married woman, both my husband and I liked to dress up, so we made our lives into a bit of theatrical arrangement in some ways. We got some Victorian style attire for him such as braces and Victorian style trousers, which he liked to wear often. We were extremely poor but I had a bit of a compulsion to collect clothes on credit. Martin also bought me a very special Victorian jacket I found in Cardiff that happened to fit me really well. I needed that time as a wife as it was a time to enjoy feminine ideas, but when he died, my taste for dresses and blingy jewellery disappeared completely. My style is really more gender neutral, even masculine.
