This is Part 2 of a story I'd love you to read. But please, please darling, start from the Part 1., here.
Part 2.
The Beginning.
I can pinpoint the moment when everything started to change.
It was one gorgeous, sunny day in early July 2012. I remember I was wearing a turquoise skirt with fuchsia roses in it. It still fitted me, just, with my growing pregnancy belly. I was writing an essay about the early Iron Age I urban culture in the Ancient Near East, for a conference in Oxford, the deadline was approaching fast. I had only just recovered from mycoplasma and the harshest pneumonia I had ever had; it had taken months to recover, but now I was full of energy and felt the flow I always had when writing my PhD, the passion of my life.
This is the starting point. The me that was but is no more. The me, who was capable of writing her PhD and was working for the Helsinki University and Academy of Finland, in a Centre of Excellence. The me, who was enthusiastically excavated old pottery shreds on the deep slopes of northern Israel, in extreme heat, in international archaeological excavations. The me, who had capable of heavy garden work like singlehandedly digging out several dozens of huge bushes from one place and wheelbarrowed them to a new one, digging planting holes and planting them, or made flower bed paving using heavy rocks. The capable me, who also could vacuum or shower herself. Cook and walk.
On that July day 2012, my husband asked me to take a look of the last pieces of vintage window frames he had just found for our glass greenhouse, still in the boot of our car. I excitedly hurried to see them. Perfectly worn and tattered, they were exactly what we had been looking for. And suddenly, without any warning, everything changed. The heavy back door/tailgate of our Audi station wagon collapsed into my head, with full force. The hinges had broken, both at the same time. How unlikely, how unexpected. How pointless.
It hit my skull with full force, the metallic lock piercing into my head, and I fell unconscious into ground. The only thing I can remember about it was that as my husband tried get me up, I thought I could not show how much it hurt, when our little boys were standing there, they were not to worry.
Well, this story isn’t about a brain injury. But it was what started everything, as after that, not only had I lost my memory, but also my health. For reason completely unknown to me, my chronic illnesses I was living quite friendly terms with or I had no idea even existed inside me, got worse or were triggered to life, and it probably was the moment myasthenia gravis got quite an imposing hold of me. Maybe it was the infections I had had the previous months and the brain injury together, combined with the fact that I was pregnant. I will never know for sure.
I was pregnant with our daughter, and as the hit triggered constant and serious contractions, it also meant very, very throughout patience practices the next 6-7 months. So, I rested on our living room sofa the next months and tried to learn a bit patience. (Which, I can assure you, was a mountain to climb for a person always used to do something.) Later I have been incredibly grateful for that experience. This kind of bulldozed the concept of patience into my life, so when later I became almost completely bedbound, I was already familiar with the silence, the idleness; it was much easier to come in terms with myself and my disabilities.
I wasn’t diagnosed with the brain injury at the time, as my pregnancy meant no proper examinations could took place, and as I spent my days in bed anyway, I had no idea of the damage actually happening inside my brain. I had no idea of the magnitude of problems, as all I could see were the memory problems, with the difficulty to form and find words, English, Swedish, and German popping into my talking out of nowhere, and my total lack of balance when I agonisingly slowly walked the only journey allowed to me, from bed to bathroom and back.
From that summer moment when my brain was irrevocably injured, it took 7 years to accept the fact that I am not going to ever be again the person I was until then. I got my disability pension last year. I only resigned from University of Helsinki this autumn. The journey I needed to take, I can assure, was not easy and was not made easy for me. During the following years, when I tried to keep my body from falling apart, when my chronic illnesses really started their invasions and when I lost all the control over my own body, I did not lose hope. I was completely (and utterly, overly optimistically) sure I’d be able to continue my research and my former life. But as slowly and inevitably as it turned out I couldn’t, also as slowly as inevitably I started to build a new life. I had the broken pieces. So, I built a new one of them. What choices I had?
The Battle.
During the next couple of years my body surrendered completely, first slowly, then acceleratingly, until I was almost completely bedbound and needed help. I couldn’t take care of our children, our home, of myself. There was nothing, nothing wrong with my mind, but my body refused all collaboration. I collapsed, nearly every day from the tiniest of effort to do something, unconscious or almost unconscious and unable to move or speak, before the very eyes of our children. I had difficulties to breathe, suddenly I just didn’t know how to do it. My husband was the one who carried me and our family through it all. Nobody knew then that something inside me was horribly wrong, that myasthenia gravis was creeping inside, destroying the connections between my brain and my muscles.
(You may or most probably have not heard of myasthenia gravis, as it is a quite rare chronic autoimmune, neuromuscular disease, so I will summarize it shortly for you. It kind of mixes the map between brain and muscles, so that the messages do not go through and when tired, exhausted, after exertion, they simply do not know the way. In more accurate words, myasthenia gravis causes weakness in the skeletal muscles, the ones responsible for breathing and moving parts of your body. Activity worsens the weakness, rest improves it. So, from experience, I can tell you it’s all right if your feet forget suddenly how to function. But when your lungs do it, it’s not quite so funny anymore.)
But, even if my body was a shadow of its former competent, strong me, I didn’t lose hope, during those years. I later laughed to one MD marvelling my astonishing ability to be flexible, to adjust and to cope (his words, not mine), that I don’t know how to be miserable or depressed, life is too beautiful and interesting for that. Everyone has their low days, everyone is tired and has the right to feel sadness and cry, but I simply think that there is too much to see, experience, learn, understand, and feel in life to be able to feel miserable for long. Maybe there is something wrong with me. (Well, that’s what some health care professionals accused me later, actually. I’m too happy and content with my life. There must be something wrong with me. Seriously? Health care professionals, seriously?)
It took a couple of years of hopeless pleading until anyone in public health care took me seriously. (Maybe it was because I smiled too much. I’ve been accused for that, too.) Everything I knew was wrong with me was explained to be because I was a mother of 3 little children. Stress. Tiredness. Hormones. You know, life. Of a woman. I could not remember when our children were born, not a thing about their baby times, not a single book I had ever read – and with my former stunningly exact photographic memory I can assure you I was not going to let anyone explain that breastfeeding could have that kind of effects on anyone, especially I had finished breastfeeding some 2 years ago. And those were only the memory hiccups.
Finnish public healthcare system is, in principle, a very good thing and don’t get me wrong, I am grateful for it and having so many foreign friends, I know how privileged we are having such a system. Except, it would be nice if it actually works. If patients would be taken seriously. If it would not make one feel you are for the system and not the other way around. Let’s just summarise the next 3 years like this...
After lots of shouting, lots of threatening, lots of indifference and pure neglect, all these from the public health care professionals, and after lots of patient reasoning, secret tears, and even fear from my part, someone actually decided to took some tests and it was found that not only I had anaemia so bad that it had already damaged my heart and brain, I also had four kinds of malfunctions in my heart, a brain injury diagnosed as severe, and lots of diagnosis related to heart, lungs, and so on (the so-on includes diagnoses in every single inch of my body they examined in me) and finally in an ENMG, they find I had myasthenia.
During those years of uncertainty, I was treated like a garbage. With disrespect, with open hatred, arrogance, and well, indifference. It clearly was only me, a theologian, who could think there might, just might, be some things in this world that exist even if you cannot see them. No health care professionals seemed to be able think that way. I tried to be kind, be myself, polite, well-mannered, even if some professionals never had heard of those kinds of attributes. When I was shouted at while at reception, I simply sat as straight as I could, smiled and met their eyes and asked politely for just a bit more specific argument. Later one doctor told me that this is the exact thing that makes me a difficult patient. I am not afraid of them, so they feel uncomfortably underhand. Come on, really, we live in a modern society that is stated to be equal and well-educated. I might be a former researcher, yes, and I do have a horrible habit of thinking everything through and making uncomfortable questions to make things clear in my battered, injured brain, but I am not a scary person. I just ask questions and look them in the eye. Or is it that I do it with a smile?
Lately, I have been quite grateful for these horrid encounters, actually. I hadn’t quite so naïve and optimistic attitude towards the health care system most people still seem to have, thinking the system actually works in a way it should, system for the patient, not the other way around. Finnish public health care system’s purpose is to maintain and improve people's health, wellbeing, work and functional capacity and social security, as well as to reduce health inequalities, says Finnish Ministry of Social Affairs and Health. It would have been even more crushing discovery, to experience the total lack of each and single one of those points in the statement, if I hadn’t witnessed the defects myself, first handed, already earlier.
Every day during those years of uncertainty I woke up – and still wake up – grateful that it is a new day in my life, full of possibilities. A bit like Moominmamma said:
“Well, it’ll be another nice long day tomorrow, and it’s all yours from beginning to end. Now isn’t that a lovely thought!”
One does not help but love Moominmamma. Not only she knows how to serve her pancakes (with strawberry jam), she is also a clever one.
I learnt not to take life for granted. After that little incident in 2015, when I started to cough blood and fainted in the hospital reception of an ophthalmologist – who had just told me my myasthenic eyes would not be fit for researcher work anymore – and was then whisked through the corridors of hospital into ER where they suspected that my fragile heart had finally and literally broken, I learnt it the hard way. But it wasn’t broken, my heart, except for metaphorically speaking. For a researcher to say she could not continue her work… It’s a death sentence, in a way, to your life at is was.
I got home. I got more time. Time, I swore I would use wisely. I decided I would grateful for everything that life would throw into my way, be it lemons or marshmallows or axes. I had to adjust to the idea of not being capable of my research work anymore. And that other incident in 2016, when I got a brain haemorrhage and couldn’t spoke proper Finnish in a couple of years… These incidents reminded me how fragile life really is, and all the thromboses during the following years underlined the message.
I had had my patience rehearsals while pregnant, and now had reached the Next Level 2.0 Rehearsals. I learnt more and more every day. I realised I could be enough as a mother, even if I could not bake or craft with my children, but it was enough to only be there, always there, to listen, to hear, to understand, to kiss. I realised I was enough as I am. I had to learn myself what Virginia Woolf meant when she wrote: No need to hurry. No need to sparkle. No need to be anybody but oneself. That we are all enough just as we are.
Even if I could not remember things, or vacuum or wash dishes, or had barely strength to take a shower, there was still a life to live. Mine. My only one. So, I thought I’d better make it a good one.
I believe in miracles. I believe that, as Albert Einstein said it, your whole life is a miracle. I also believe that miracles do happen. But, to quote the Fairy Godmother (you see, I take sourcing my citations very seriously), even miracles need a little time. I would like to readjust that, though. Even miracles need a little help. If we just wait our whole life that some miracle would fall upon you and happen, well, we can wait – our whole life, and moan about miracles not existing and get bitter, stop believing. But, instead of twiddling our thumps, we could just start helping those miracles to emerge.
I started.
End of Part Two of Ten.
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