I don’t have many medical records, but the ones I do hold are invaluable. This is my journey—not an easy one to recount, but a journey I’ve had to undertake nonetheless. It’s a path I was forced to walk after discovering that my disabilities had been hidden from me. While this account may be unsettling to those who read it, including those close to me. It’s a journey I’ve chosen to share so that I may find closure for what has been a profoundly challenging and painful chapter in my life.

The 'Story'

I was under the care of 'The United Teaching Hospital' for many years, with more than one specialist in attendance. I only have a few letters in my possession. Mr. J.M.P. Clark, an orthopaedic surgeon, initially provided insight into my condition, which I later learned was cerebral palsy, having initially been diagnosed at the age of 2 – with me finding out at the age of 46. I also have medical letters in my possession from Mr I Forsythe, a consultant paediatrician, in which he describes me as a 'left spastic monoplegia.' I also had Dr Martin A. Nelson, another consultant paediatrician in attendance, who was brought in to help with a foot-drop, noted by Mr. J.M.P. Clark.

My Further Medical Notes

In one of my medical letters, Mr. I. Forsythe noted I was bottom of the class, and when questioned, my father put that down to a memory problem. On the consultant questioning there didn’t seem to be any evidence of a perception problem. Throughout my schooling my father ignored my learning difficulties, and chose not follow through.

It wasn’t clear in my medical notes, why I was diagnosed with monoplegia and hemiplegia by two different consultant paediatricians. In my medical notes from Mr. I. Forsythe, he noted I was bottom of the class, and when he questioned my father, my father put that down to a memory problem. On the consultant questioning there didn’t seem to be any evidence of a perception problem. In the conversation that followed, the consultant asked my father to keep an eye on my learning, so they could keep an eye on my learning, citing a potential retardation in that consultation. My father ignored it and chose not follow through.

Throughout my visits as a child to hospital, there was more than one diagnosis, with one consultant paediatrician describing me as a monoplegia, likely because the symptoms were mild and less apparent at the time. There was no reference in my notes as to why I was also diagnosed as a hemiplegia.

Dr Oliver Lilly

Following a consultation with Dr. Oliver Lilly, a few decades later on my insistence at the age of 46, when I went through yet more testing to find out about what was wrong with me, a neuro-physiotherapist was brought in to evaluate me physically – who pointed out after physically examining me, (although it wasn't clear in some of my medical notes, noting that I had been diagnosed with both monoplegia and hemiplegia. In my medical notes from Mr. I. Forsythe, he noted I was bottom of the class, and when questioned, my father put down to a memory problem. On the consultant questioning there didn't seem to be any evidence of a perception problem. Throughout my schooling my father ignored my learning difficulties and chose not follow through with this particular paediatric consultant, who had concerns on my learning.

Throughout my visits as a child to hospital, there was more than one diagnosis, with one consultant paediatrician describing me as a monoplegia, likely because the symptoms were mild and less apparent at the time. There was no reference into my notes as to why I was diagnosed with hemiplegia.

Precis/excerpt from one of my letters from Mr J.M.P. Clark dated 16th January, 1965

"This child’s parents have noticed that she limps with her left leg and that her progress has been slower than that of her twin. The child was born prematurely by five weeks and started her life in an incubator. She drags her left leg and her leg reflexes are slow. Her left leg tendon is tight. I can detect no clinical abnormalities but I suspect that the condition is a monoplegia, caused by cerebral palsy. I recommend the child should be kept under observation and enrolled in the pre-school clinic so that we can decide how much mental retardation there will be and how this will impact on the child’s education. Regular physiotherapy will help the walking. It may be necessary on some future date to lengthen the tendon." - Mr J. M. P. Clark

Discovering Myself

"When I was diagnosed with cerebral palsy at the age of 46 and autism at the age of 56 respectively, my world tilted on its axis. For years, I had wondered why my movements were awkward or why I felt out of sync with others. It wasn't something ever spoken about. When the neurologist explained my condition at the age of 2, I wasn't aware of the condition. My father attended all my consultancy appointments with me. The specialist didn't speak to me, he spoke over me. So, at the age of 46, it was a mix of shock, betrayal and profound sadness that overwhelmed me. How could something fundamental to my identity have been hidden from me?

As a child I was consumed by anger and was constantly getting into trouble for it. I thought back to the times when I stumbled during lessons, didn't get learning or school, struggled with sports, and also struggled also with fine motor tasks as a child. My parents' insistence that I was “clumsy” and that whatever I didn't manage in school, was just 'me' was a deliberate cover-up from the truth. It hurts deeply to know they had actively made the decision to keep it from me, assuming ignorance would shield me from their embarrassment, their pain, other people's opinions, judgments, misjudgments and stigma. I've had it all. Instead, that ignorance left me feeling alienated from myself for decades.

As I began to process my diagnosis, my emotions shifted slightly. Learning about cerebral palsy brought me an unexpected mix of grief and relief. The diagnosis validated all my struggles, providing the clarity I needed, but still didn't understand and needed to work on. It would take me another decade to understand the finer details.

I haven't been able to grieve for the years I had lost – years where I could have understood myself better, years where I might have had the empathy, sympathy and understanding. Instead I was faced with a barrage of abuse on what I later learned was a disability by being kept in the dark. My entire life has been shaped by a lie. It still is because nothing has been resolved and with no apologies. While I am starting to come to terms with it, it’s not easy. It's something I will never get over because it spanned too many years. Instead, I’m learning to re-frame my experiences and reclaim my story, but the weight of what was hidden still lingers."

I don't take ownership of any of this: it is not mine to own: I am simply passing it along.