In July 2018, my brain melted. Literally.
I didn’t know it at the time, but I had a blood clot in my brain. There were no previous neurological symptoms in my medical history.
The week before my aneurysm, I had what I thought was stomach flu and vomiting, with dizziness and brain fog. I forgot several appointments, one at my dentist surgery and a meeting with a staff member at my university. These were warning signs of what was to come.
On the day of my aneurysm, I couldn’t keep track of time. I muddled up another appointment, this time it was for my adult son with special needs. This wasn’t like me, and I felt as if something was really wrong. I tried to explain what was happening over the phone to anyone who would listen, as it was an important session with an NHS consultant.
Unfortunately, I didn’t manage to reschedule his appointment. Instead, my request was refused. I was reprimanded by the consultant’s secretary for not arriving on time and told that my son was consequently discharged. This took me by surprise and although I was embarrassed by my mistake, I was experiencing some sort of health issue and deserved compassion. I stood up for myself and asked to speak to a manager.
To put this moment into context, the whole system of special needs provision can cause anxiety. Access to services is not guaranteed and usually needs to be fought for. It’s not just the squeaky wheel that gets the grease. It is a tricky dance of advocacy, perseverance, persuasion, and understanding cultural norms to know how to argue for services. People also have to trust you, to then want to help you and your child.
Waiting on the phone to be transferred to the manager, I closed my eyes and conjured up images of recent and past efforts at advocacy for my son.
I remembered all the injustices; micro-aggressions and power struggles that I went through over the years with my son’s schools, therapy providers and battles for special needs provision though our local council. I felt every moment of pain as I relived these memories.
To this day, I wonder if this led to my aneurysm.
Black, but not Black British
As a single parent of colour, and as a foreigner raising a mixed race son I wasn’t a known or trusted entity like the married middle class parents at my son’s schools. My ex-husband was English and middle class but moved to another country. When we were married, I was part of his family and was accepted by society through him. After my divorce, I lost the appearance of respectability.
I suppose that I also confused people who worked in health and educational systems as I was black, but I was not Black British, nor of West Indian or African heritage.
I only knew how to advocate through my own African-American directness, which is a different style than Black British knowingness of cultural norms. I couldn’t navigate or decode the subtleties in language and use more gentle aspects of persuasion. The major disadvantage as a foreigner was the inability to understand the layers of social rules, and how to wield soft power. Over the years, this created more feelings of inadequacy.
During the phone call, I felt overwhelmed at the extra effort that I always needed to exert to obtain service provision.
The Worst Headache of My Life
In this instance, it wasn’t good to recall those years of struggle. I became overemotional and started to cry, right as the manager came on the line. However, he listened to my story, and promised to help reschedule my son’s appointment. Just as I thanked him for his help, something awful happened and I dropped the phone.
It was the worst headache of my life, it felt like a tidal wave of pain. Of course, I ended up in A&E, was admitted to hospital and then eventually had brain surgery.
Three and a half years later, I wish that I could report that my life is back to normal but it’s not.
I have no residual physical symptoms from my aneurysm. However, my sense of time and mastery of my environment. including things like paperwork and organisation, are forever impaired. I can’t cope with much anymore. Some people tell me I have to accept the fact that I am getting older. But I know that there are hidden aspects of brain injury.
If I could give any advice, I would suggest to all single parents, and especially parents of special needs children, to prioritise our own health, and set limits as to what can be done within reason. We must choose our battles, and not try to constantly slay dragons.
Ever since my son was diagnosed at an early age with special needs, I picked up my gauntlet and fought the good fight for every source of support I could muster, fundraise, or acquire. I already worked long hours when he was young, and I used the downtime as a stay-at-home carer to get my Master’s degree when my son was older. I frequently stayed up all night studying or catching up with admin.
I carried out so many therapeutic interventions I wore myself out. I have other friends who have similar stories, and similar health issues that they likely acquired after 15-20 years of feeling overwhelmed and helping their special needs children to achieve the maximum level of independence. I think we are driven by a fear of what will happen to our adult children in the future, when we are either too old, too infirm or when we finally can’t be here for them anymore.
An Amazing Human Being
I don’t know what the answer is, but maybe I should start with acceptance. My son has his own goals and dreams. He amazes me with the things that he has achieved and learned over the years, and has always proved his teachers and the whole educational system wrong.
When my son was 3 years old, a clinical psychologist informed me that he was severely mentally delayed and would never achieve anything. I called her several years later to let her know that she was wrong, which she graciously accepted.
After my son made it through primary school, he was told that he couldn’t sit his GCSE’s, although his secondary school finally let him try. He successfully completed his GCSE’s, then got into a prestigious performing arts sixth form, and had two offers to university.
Maybe I should have faith that everything would turn out okay, and that I had the skill set to do more than fight battles. I also nurtured, and helped to raise an amazing human being, with the camaraderie and support of other single parents and friends within our community. But ultimately it is my son who is the master and commander of his destiny and he is gaining his independence, step-by-step, day-by-day. He still has other health issues to deal with, and we are helping him to advocate for himself.
It’s time for me to direct my efforts at healing my own body, letting go of the past and overcoming the fear of the future.