Mika 2015 working in a countryside project, before they became ill
Here is Mika’s story in their own words, thank you for reading:
In 2015, I started slowing down. I was learning ecological construction methods while staying at self organised community projects in Scandinavia, messing about on roofs, rampaging around forests, having a whale of a time.
That winter, it began to get harder to get up in the mornings. I became irritable and less able to participate in collective life.
By early 2016, I knew something was wrong. I’d left Scandinavia and come home to East Germany where I lived with my girlfriend, and continued to feel unwell. We’d stopped working and come off the road to set up a quieter life for ourselves.
In autumn that year, I went to visit family in Scotland and Ireland, and found myself constantly out of puff. Meeting a characteristic Celtic incline on cobbled streets, I would become lightheaded trying to reach the top. But seeing no reason for it, I pushed through.
By spring 2016, I wasn’t so able to leave the flat in East Germany anymore. Even short exploratory urban nightwalks – of the kind any of you who know me, know I always favoured – became like mini marathons. As the year waxed on, I became stuck indoors, sitting propped up in my bed or in my armchair, watching the street from my window like a bored housecat.
My body ached. My joints complained. My limbs refused to comply. Simple tasks like hanging out the laundry became like a session lifting weights.
In summer 2017 I made what would be my last trip out of the house which was not to a doctor’s surgery. I attended a bookfair at a social centre a few hundred metres from my house. I remained in an armchair throughout, and all of a sudden, the world took on a gentle, meandering horizontal clockwise spin. This was my new permanent outlook on the world.
The next two and a half years were a parade of doctors offices. As my pain, discomfort and pervading sense of weak, fluey sickness increased, and I was forced to hand over all household tasks and outside errands to my partner and retire to bed, I received a string of negative diagnoses.
Every ’-ologist’ you could think of, shook their head and said, “it’s psychosomatic”, “try exercise”, “weight loss”, “psychotherapy”, “try getting a job”. I missed my job badly. Missed walks in my neighborhood. Riding my bike through the forest and by the lakes. Visiting my family and friends. I was so fatigued all the time, but at least I had my online world.
Then in summer 2018, things took a turn for the worse.
My girlfriend was away unavoidably for a month and I had mainly to fend for myself. The sudden exertion of resuming household tasks began to bring on debilitating headaches.
The sensitivity to sound and light I’d increasingly been experiencing, intensified. I would lay in the dark with the curtains drawn against the summer light, flinching at every ambient sound. The noises of my suburban neighborhood became unbearable.
At the end of the summer in 2018, I developed a low grade fever and terrible upper abdominal pain. After multiple visits to A&E and different specialists, with no answer, only antibiotics; I spent Xmas and new year 2018 laying flat on my back in bed, ribcage on fire, grimacing at the ceiling and wondering what the heck had gone wrong.
By the end of the year, I stopped being able to look at a screen. The movement of a scene on TV, the fast cuts of a movie, unexpected flashing lights, would trigger a feeling as if I were stuck inside a washing machine on spin cycle. I would lose my sense of where my body was in space, feeling as if I were flung around in loops, and my eyes would flick back and forth rapidly. This was vertigo and I hated it more than anything else.
I had developed intense tinnitus in both ears. An orchestra of sound. I began to stagger when getting up suddenly from bed. Rounding corners in the flat became an obstacle course as I misjudged distances.
My paint by numbers paintings, little hand drawn comics about daily life, and sewing projects sat on my desk, unfinished. My vision began to flash and strobe and I developed a dreadful, ominous pressure behind the eyes.
My online world, my solace, disappeared from view. Email correspondences dwindled and I said my goodbyes on social media, now only able to steal glances at my screen before a terrible sharp pain would begin in my inner ears, forcing me to curl up in a ball, eyes closed, and lay still.
We decided to move house.
We had black mould in all the rooms of the flat and I had developed a barking cough, wheezing and other allergy symptoms. I couldn’t lift a finger to help pack. Friends helped me into a caravan where I waited out the day, until all was done.
The new place was quieter, with a little balcony overlooking a patch of grassland by the train line. I lay on my side and watched the birds. A few weeks of respite from the mould and noisy neighbourhood renewed me a little.
In winter 2019, I got in to see an ear nose throat specialist, who gave me my first useful piece of news.
After an afternoon of audiometric testing performed with much beeping and blooping and flashing lights, all with electrical wires attached to my head, he informed me, “Your issue is not in your inner ears. It is in your neck. Something is disrupting the blood flow in and out of your head”.
I went to have an MRI of my neck. It came back all clear. I remained puzzled, and at this latest dead end, was left once more without doctor support.
Meanwhile back at home in Scotland, my Mum became acutely unwell. Unable to manage the bustle of airport security and cabin pressure of a flight, I set out by train and by boat, for a thirty six hour journey home. My first time seeing my family in over two years, due to my weakened state.
As the trip approached, I began to have a flare of the upper abdominal symptoms that had plagued me throughout the second half of 2018. I travelled feeling as if my ribcage were filled with concrete: freshly poured, hardening and hot. In the ship’s cabin, I sweated and writhed as it trundled over the North Sea.
I arrived home in rural Scotland, and thankfully my Mum soon came home from hospital. But after suffering several weeks of severe gastic upset, I switched places with her. Over the summer I spent two weeks in a hospital a couple of hours away, having emergency gallbladder removal surgery, then being treated for sepsis and surgical herniation.
I arrived home diminished.
Over the next few months I would lose over five stone (32kg) in weight. This process continues to date. My liver began to hurt terribly, keeping me pacing the room through the night in a cold sweat. The area surrounding my pancreas began to grumble. It felt as if my organs were shutting down.
My cranial pressure and pain symptoms increased, and along with them, my problems with hearing, vision, mobility, digestion, balance, heartrate and cognition.
My heart rate would rocket from a resting bpm of 60-75, to 130+ when standing, blood pooling in my lower limbs as my blood pressure dropped, leaving me dizzy and blue-lipped, sweaty and faint.
At night my heart rate would dip into the 50s. A type of tinnitus called pulsatile tinnitus, where you hear your own heartbeat constantly in your ears, meant I would lay there listening to it sloshing like a washing machine drum, slowing and slowing, and wonder if it was gonna stop.
I began to use a cane to get to the bathroom. Showering became an ordeal. I began slurring sentences, forgetting words. My mind would go blank in the middle of a thought process. I was weepy and confused, stumped by simple tasks.
My light sensitivity got such that the curtains stayed drawn through the day. My sound sensitivity escalated so that some days I couldn’t bear anyone in the room with me, even moving carefully, whispering.
Processing conversation became like listening to the horn section of an orchestra, blaring out a discordant tune. Some days even understanding the gentle voice of the audiobook I had running constantly as company, became like listening to speech in a dream. I could no longer understand the words.
I was physically separated from my partner of six years, my friends and even the family with whom I shared a home, as my energy to interact with the world outside my mind drained away.
My world was diminishing. Soon I felt I would be completely alone in the dark.
In October this year, I did something radical.
I began speaking to a private neurosurgeon.
I had discovered earlier in the year, around the time of the ENT pointing to something in the neck, that my symptoms matched those of several other patients who had undergone a highly specialised upper spinal operation, and made quite remarkable recoveries.
These patients had lax, weakened ligaments in their necks, which could no longer hold their skulls in place. The skulls of these patients would move abnormally on their axes, or sink from their correct positions, crushing the brainstem and stretching or compressing vital structures like the spinal cord and the jugular veins.
The reasons for this were several: preexisting connective tissue disorders meaning the joints of the body – including those of the spine and skull – were hypermobile, contracting ligament-weakening viruses like Epstein Barr, antibiotic side effects, exposure to environmental toxins, or trauma to the head and neck.
I have had hypermobile joints since I was a kid, as does one side of my family. This has caused me temporary mobility problems from time to time, but I never paid it much mind as I was otherwise relatively healthy.
Around 2009 I suffered a moderately serious head trauma at work, with the force coming from a large falling object from above. I was given the all clear at the time, but apparently these things can take years to develop. A gradual shifting of millimetres, eroding the integrity of the posture.
Coupled with already lax ligaments supporting my joints, and some full spectrum antibiotics I was prescribed for my mysterious biliary pains in 2018, which have known tendon damaging properties, this could have been a damaging confluence of factors.
I had been aware my own neck had been gradually changing shape, losing its natural curve and allowing my head to sink forward until it was hanging at an odd angle, skewed to the left, giving me the aspect of a friendly dog. I had been informed that this was “normal for a person my age”, but it seemed really odd. I had lost more than an inch and a half (3.8 cm) in height since 2015.
A lightbulb went on.
The specialist neurosurgeon agreed that my symptoms matched those around which he has based his professional career: those of brainstem compression. He requested I undergo a special series of upright MRI scans, designed to view the place where the skull meets the upper spine, at various extreme head postures.
The only place in the UK to get such scans was one of two private centres in London or Manchester. My partner spent a third of her life savings to come up with the £3k we needed, and, heavily drugged, bolstered with a neck brace, earplugs, sunglasses and mobility cane, my Da and I set off for Manchester in the car.
Three weeks later, I received my first diagnosis:
- Craniocervical Instability – my skull is sinking, causing the compression of my brainstem by my upper spine
- Likely Atlantoaxial Instability – instead of pivoting normally, my head may be sliding over my spine as it moves, which can cause stress and damage to spinal cord and vertebral arteries
- Loss of Cervical Lordosis – this means the natural curve in my neck has straightened, as my head hangs forward under its own weight
- Bulging and Protruding Discs – are a result of where this misalignment has caused structural stress on my upper spine over time
- Degeneration in the Lumbar / Sacral (lower) Spine – this has been causing chronic pain and may have implications for further spinal instability
The scans were a vital diagnostic tool, but also an ordeal for my already weakened body. When I returned home to Scotland, I began having first nightly, then daily seizures. These intensified over the course of two weeks, until one night as I was falling asleep, I began struggling to breathe.
The craniocervical junction: the place where spine becomes head, is packed with nerves and vessels leading to all the systems of the body. Millimetres of misalignment in this area can cause a compression which has the potential to cause malfunction in any and every system of the body.
My breath would slow, becoming shallower and shallower, until my chest stilled. Attempts to kickstart the mechanism moving again were like lifting weights. My stomach roiled with nausea and adrenaline. My head sank into blackness. Then suddenly, my chest would heave, I would gasp for a few breaths, hyperventilate noisily, and return to the world for a few moments.
Following those precious seconds of relief, my breaths would once again become progressively shallower, descending towards stillness again.
That was three days ago. This abnormal breathing cycle has continued on and off during my nights and days. If I attempt to sit up, the cycle shortens and intensifies.
So for now I am laying still.
I am wearing an inflatable neck brace which provides the tiniest bit of traction to lift my skull away from the brainstem it is crushing, allowing me to breathe in a laboured but more regular way.
Moving my head a few millimetres, or the occurrence of a sudden sound, thought, emotion, activates my neurons and I begin to hyperventilate – my limbs going numb, my consciousness fading. I am in a constant seizure state.
I don’t know how long the collar will continue to be effective as my ligaments weaken rapidly, day by day.
It’s fairly terrifying, as an experience, and at present feels like a sort of purgatory, in that help is hundreds of miles, and thousands of pounds away.
I recognise what I have done my best to avoid accepting this past year, until it became a critical matter: I urgently need surgery to insert a metal structure to stabilise my skull and upper spine, lifting my head into its proper neutral position and fixing it there permanently.
There are only three neurosurgeons in the western world who can do this with any safety and accuracy. I must get to Hospital Teknon in Barcelona as soon as possible. If I get stuck in the UK on a ventilator, I will no longer be able to advocate for myself. Time is of the essence.
Each day that passes, breathing becomes harder. I have been advised through multiple sources, that no hospital or neurosurgeon in the UK can help me, and that a trip to the A&E (ER) could kill me.
I have collapsed twice on my way to the toilet over the last twenty four hours, and defying the instinct to call 999 takes courage.
But I recognise that anybody messing with the delicate structures in my neck such as for intubation could be fatal. Even trained hospital staff are not aware of the delicacy of this condition.
I am terrified I will die in the night, or as my parents look on, helpless. It’s been a tough Christmas for everyone and I can’t stand to put my family through this.
I have to do that surgery.
My partner is ready to drive up from East Germany in a van and take me to Barcelona laying flat on a mattress, as, as of the last forty eight hours, sitting up is no longer an option.
I don’t know what kind of state I might be in by the time I’ve enough money to begin the surgical booking process, but I have no other course but to try.
The state of the world is that such a surgery costs as much as a mortgage on a medium sized house, which I think would be a pretty daunting expenditure for anyone I know.
I haven’t had any income since before my illness. Aside from the one ENT, I have never been able to convince a doctor that there is anything wrong with me, until a specialist neurosurgeon outside the NHS recognised what was happening, and so even state disability benefits remain beyond my grasp.
There are two of us chronically ill and long term disabled in my immediate family and we rely on income and care from a single family member to support everyone and work on the mortgage.
My parents have been wonderful in welcoming me back home, caring for me and paying for all my food and medication the last six months, but we simply don’t have more than a couple of grand to spare, even in a life or death situation.
Putting that together with mine and my girlfriend’s remaining life savings, which we had wanted to put toward a flat of our own one day, we have raised £7k.
The only way forward is to ask for your help.
The surgery itself will cost in the region of €70-90k, depending on how extensive it needs to be. This will be determined on further testing once I’m admitted (I will update the precise total here as soon as I have it).
The rest covers:
- Preoperative testing
- Inpatient care in Barcelona during the month I will be in the ICU, general ward
- Transport and rented accommodation locally I will need as an outpatient
- Surgical insurance – in the event of post-surgical infection, hardware failure or the moderately likely discovery of issues elsewhere in the spine, I will need follow up surgeries, all of which can be insured for
- Outpatient pain management meds
- Rehabilitative physiotherapy
I will need to learn to walk and use my body again due to the deconditioning which follows five years in bed. Also, with my new cyborg neck, my centre of gravity will have changed entirely, and I will lose the ability to turn my head. I will need to learn how to use my body differently so as not to cause harm.
I am told this rehabilitative work will count towards at least 50% of my post-surgical outcome, so it’s important to include it here.
I’m very much hoping that something positive can be achieved here. My only crowdfunding experience so far was group-buying a Christmas present for my girlfriend. I know this is operating on a very different level, but the only route I can see open is a collective one.
Let’s see what we can do.
Hopefully, and With Love,
Mika☆