Me and My Damaged Brain

After I went back to work, lockdown then ended, and restrictions gradually began to lift. I still didn’t feel like myself. I spent 80-90% of my waking hours with a headache that I could not shift. I was growing more frustrated as I’d expected to be getting back to life as normal by now, and had no idea what was really happening inside my body.

As the weather improved, so came garden parties. Yet me and alcohol were not friends at this point. Once I started drinking, and the alcohol began to take affect, I panicked. The slurring of speech and stumbling of my limbs felt all too familiar, I’d shut everyone out, cut myself off and internally freak out until the drunk feeling eased.

My support system at this time was almost non-existent. I had no clue what I was dealing with and felt unable to put it into words. My boyfriend’s family were all drinkers, so trying to explain that I now had a fear of how alcohol made me feel was not something that felt possible. All my own family members were also absent from my life. I had not spoken to my mother since she threw me out on the street 7 years previously. My father had also been cut out of my life in the summer of 2019 after he continued to choose everyone over his own child; I was done with being the forgiving type. Even after calling him before my first hospital admission, he did not visit me once. Lockdown be dammed, the first contact you have from your child in 9 months is a slurred and mumbled explanation that she is being rushed to A&E, and you do not even visit once she is home. We both worked in the same department at Tesco, and after I returned to work, his attempts to see how I was came from half-hearted hellos and how-are-yous when passing at work. No phone calls, no dropping by the house, not even an offer to take me to my hospital appointments. Someone else’s parent had to do that for me instead. There is a larger backstory and multiple suitcases of trauma that come along with daddy dearest, but this chapter in my story is not about him.

So it is safe to say I was lonely, depressed and struggling to adapt to the changes life was throwing my way. Que MRI number one: I had this roughly 3-4 weeks after the stroke, and it is the one event I don’t have a date or letter for. My now ex-boyfriend’s mum took me to this appointment. It was done in a mobile MRI scanner in the car park of Pinehill Hospital in Hitchin. I was waiting in the main building, and a nurse came to collect me when it was my turn. I was shown out to the trailer, given a locker and advised to change into the hospital gown and remove all jewellery. Luckily, I was prepared this time and had my piercing pliers with me so I could remove all the hoops from my ears. I lay down on the bed, was handed headphones, had the cage-like cover put over my face and was informed to stay as still as possible. 45-60 minutes of whirring and clunking later, I was shown back to the locker and told I would hear about the results in a couple of weeks.

A couple of weeks passed, and I was called about the scan; some abnormal activity was seen in some areas of my brain. I was advised it was likely due to something with my blood vessels, but a standard MRI was not giving a clear enough image. An urgent MRI/MRA was going to be ordered, but I was told not to panic; this was standard with any ‘inconclusive’ result. 23rd July, exactly 74 days after my stroke, the MRI/MRA scan was done. This is when you have the usual MRI scan, which focuses on the brain tissue itself. Then, after about 30 minutes, my MRA began; this scan then focused on the arteries and veins in my brain. They injected a contrast dye through a cannula in my hand that then lit up the blood flow on my scan so it could be seen clearly. After the scan was over, I was informed to up my water intake to flush the dye out of my body, and that someone would be in touch with the results in the standard 1-2 weeks.

5 days later, on 28th July, a letter was typed and sent out to me. I did not receive this until a few days later. The letter stated that I had an initial MRI, which showed a lesion in my right cerebellum. It stated that I was then given a further contrast study, which showed a mature infarct in the right cerebellum. An infarct itself is an area of tissue death caused by a sudden lack of oxygen or blood supply. A mature infarct is that same region of dead tissue, but it has now become a fluid-filled cavity. The body has stabilised the area of dead tissue, and it cannot get any larger, but it also cannot heal; the damage is permanent.

On 29th July 2020, before I had received this letter, I had a call from a Consultant of Acute Medicine at Lister Hospital. He explained that my scan results had all come back and been reviewed. They had triggered a significant abnormality alert. He went on to say that on May 10th I had a stroke in my right cerebellum. I thought he was joking; I laughed and explained this couldn’t be right, as I had hemiplegic migraines that mimic the stroke symptoms. He apologised and said that this was a misdiagnosis; the scans have shown I have permanent brain damage and I had a stroke. I was at a loss for words; I dropped to the kitchen floor and began to hyperventilate. My boyfriend came through to see if I was ok, and I just held the phone out to him and began to sob uncontrollably.

After 5-10 minutes of him speaking to the Consultant on my behalf, the call was ended. He explained that I had to go back to the hospital; they needed to readmit me to work out how and why my stroke had happened. So after calming myself down, I packed a bag, got into his mums car and went back to the hospital.

At 13:08pm on 29th July 2020, I was admitted to Pirton ward at Lister Hospital for a stroke, 80 days after it had happened.