Portrait: Julie
In April 2016 double vision and throbbing headaches forced me to visit an eye specialist. As a technical translator I was permanently working with two computer screens simultaneously. Perhaps I just needed new glasses. Unfortunately, I didn’t get away with it that easily.
Julie’s story
After carrying out several tests, the eye specialist diagnosed a massive loss of peripheral vision, which meant a visit to my GP to be fitted with a 24-hour blood pressure monitor. My GP, being thorough as always, recommended a cranium MRI, which I truly believe saved my life. I will forever be thankful to him for his foresight. I was just about to leave the MRI centre after being given the all-clear, when the doctor called me back in.
After a series of further tests, angiograms and discussions with neurologists, I was finally diagnosed with an intradural paraophthalmic ICA aneurysm and two frontal lobe aneurysms.
On 17th June 2016, I was admitted to the Neurological Clinic in Stuttgart, where they performed open brain surgery to clip the aneurysms. The surgery was performed by the medical director of the clinic and one of the most experienced surgeons in this field. I knew I was in good hands.
The operation was successful, except that the neck of one of the aneurysms could not be clipped completely, so I would have to return to the clinic in September for further treatment.
The magnitude of the impact on my brain
After a short stay in ICU, I spent another few days on the ward, totally oblivious to what I had been through. Despite all the tubes and machines which I was attached to, I attempted to get out of bed, and when my neighbour asked me what I was doing, I replied “Going home”. I spent the rest of that day and night outside the nurses’ room with the bed rails in situ to prevent any more escape attempts. Ten days later I was discharged from hospital, and it was only when I was at home that I risked a glance in the mirror. I looked as though I had been in the ring with a prize fighter – and lost!
Arrangements for my rehabilitation had already been made from the hospital, so I just had time to pack a case and have a night’s sleep in my own bed, before I was on my way to a neurological rehabilitation centre in the Black Forest.
Looking back, I had no idea where I was going or why I was going there. I just remember being extremely bewildered. On arrival at the clinic, I underwent physical and neuropsychological examinations and to my horror was supplied with a rollator! Evidently, I had balance problems, but I hadn’t noticed. I felt I was putting my “stability” in the hands of strangers. The clinic specialized in treating stroke and MS patients – and my symptoms were very similar.
An assessment was carried out to test my attention span and reaction time, showing a clearly diminished capacity of optical stimulation and concentration. Books have always played an important part in my life - they can take you to such special places. Finding that I couldn’t decipher the words on the page was a disaster. I also had problems writing and speaking. The words seemed to be fizzing around in the depths of my brain and came out in a jumble – or not at all. The same applied to words on paper – a catastrophe for me as a technical translator and proofreader!
My brain felt like lace – delicate and full of holes.
Rehabilitating from brain surgery
I was in this clinic for six weeks and had regular neuro-physiotherapy sessions using the Bobath concept - a special type of physiotherapy treatment which aims to improve movement and mobility in patients with damage to their central nervous system - art and music therapy, neuro-psychology training, relaxation classes, breathing therapy, and hypnotherapy.
My mobility improved over these six weeks, but I was still unsteady and kept falling over my own feet – on one occasion so badly that I broke my wrist!
Unfortunately, the results of the neuro-psychology training were not as I had hoped – responsiveness, accuracy and speed well below average! In other words, unable to cope and not fit to return to work.
My time in rehab was and is still like a blur. I was in a fog and things did not improve on returning home. At least I was able to leave my rollator but still needed a walking stick. I felt like a zombie but continued with the physio and counselling as recommended. My life continued in slow motion.
I cannot begin to conceive what rehabilitation progress for brain injury patients must be like without the support I received thanks to the health system here in Germany. If I had been left to my own devices ...I dread to think of the consequences.
In September I returned to the hospital where I had endovascular surgery to implant a flow diverter to divert the blood flow away from the aneurysm instead of into it.
The months following my rehab were flat – without highs, dull – without sunlight, grey – without colour. I felt disorientated, extremely vulnerable and strangely detached.
Adjusting to a new identity
I continued my sessions with my counsellor and psychiatrist and with their help and medication, continued to fight my way out of the fog and slowly the colour began to return into my life.
I felt like a stranger in my own body, as if I was stepping outside and watching myself.
I felt the desire to stay hidden in my house, afraid of not being accepted, not being the “me” that I once was. I was afraid of losing my friends – sure that they would shun the “stranger” I had become. I felt so different from how I was before...
Emotional healing
On 29th June 2017 I arrived at my second rehab clinic. This time, on arrival, a behaviour assessment was carried out as my problems were more psychological than physical. The result: an anankastic personality disorder, i.e. obsessive-compulsive disorder. I had always struggled with this notion, feeling totally inadequate if ever I fell short of perfection. I had to start thinking of the slightest improvements, both mentally and physically as a success and not push myself to be perfect – an impossible goal.
With the help of Cognitive Behavioural Therapy (CBT), one-to-one counselling and group therapy, the next part of my journey began. I knew I had to tackle the here and now and the life that lay ahead of me. Somehow, I learned to manage the situation, and on the recommendation of my group – treat myself with kindness. Acceptance is an important mindset.
I also allowed nature back into my life – a powerful and prescription-free medication for mind and body with no side effects.
I returned home after six weeks, but without the support of the clinic, I felt lost again. It was a different world; I not only missed the support but also struggled with the problems of everyday life.
The road to acceptance
In May 2018, I was once again admitted to a rehabilitation clinic. My goal – to finally accept the changes in my personality since my brain surgery in 2016, to treat myself with respect and stop trying to be perfect! No easy task. I had been told that the frontal lobe of the brain is responsible for personality – and I was convinced that this is what had been taken away from me. On studying a brain map of the frontal lobe, things began to fall into place. Some things are beyond your control.
By the time I was able to watch Game of Thrones without losing the thread after just a few minutes (2018), Emilia Clark had already recovered from her life-threating brain surgery. I found it difficult to believe that this beautiful and talented young woman had suffered in such a way. I read her story and found so many similarities.
I must thank Emilia for sharing her experiences with the world. Her story has given me strength to believe that no matter how fragile life is we should never lose hope. To quote Celia Ahorn “…sometimes we need all the glue we can get, just to hold ourselves together.”
Words of advice to other survivors
Trauma leaves scars and not just the visible ones, but it’s about finding the happiness and satisfaction within us. Life will never be without its problems, but life is there to be lived. I have come to terms with the fact that despite all the setbacks, many of which I put in my own way, “I’M STILL ME” and I can say – been there, done that and, this time, got the T-shirt!
Somehow, I always bounce back like a toy that rights itself when pushed over, or like the song says “…. I get knocked down, but I get up again”, although this can be negative when people take it for granted. No matter how many stones are put in my path I will get there in the end.