Words

I have always had a wonderful relationship with words. I have devoured books for as long as I can remember. As well as my love of consuming words, writing is also a crucial part of my existence, be it in my journal or a blog post. However when it comes to words to describe my medical conditions I have had a rather different experience. I have had two stories with my urology condition that have left me rather bemused and distressed as I try to unpick and make sense of them.

My first experience was one my most bizarre in my journey around the many departments I’ve been to in the NHS. There had been so much confusion about what was going on downstairs, I had now been self-catheterising a few months, without being quite clear on why it had actually happened? Nobody quite seemed to know and I believe this was as a result of seeing numerous different departments. I arrived in the Urology Department at the Leeds General Infirmary, hoping to avoid the nurse mentioned in a previous blog post. I was greeted by a friendly doctor who led me into his office.  I had only ever seen one doctor there before and he laid out many letters from my file, emphasising each and every one – it was a distinctive trait I remember to this day and not an unwanted one when explaining the medical jargon of the male anatomy. However I quickly realised this new doctor was quite the opposite.

From the moment I sat down I could not quite understand a word he was saying. This was supposed to be my moment to connect the dots, the answers I wanted were finally going to be revealed – I just had absolutely no idea what he was saying. I didn’t know how to broach the subject, I had to ask him to go over it again, “What was it called exactly?” “What did this mean?” I quickly realised I was on a lost cause but thought perhaps if I could leave with a name then maybe I could do my own research and figure it out from there. He was more than happy to meet my demand and I was delighted as he handed me a piece of paper, until I looked down and saw that he had the most unreadable handwriting of all time. I tried one more time for him to clarify but no, his job was done.

I quickly left his office, trying to decipher anything on the paper in my hand and just feeling completely perplexed: how was I going to crack this code? On my way out I caught a glimpse of the other doctor and grabbed his attention. I was quite distressed and flung the paper in his face, desperate for an answer: could he make any sense of it? I explained how I had no idea what it said and with great amusement he told me what I had was …. “Detrusor sphincter dyssynergia” Of course that’s what it said! It made so much more sense now… I had to ask him to say it again? He wrote it out in capital letters for me but it still looked so strange.  I do understand these things cannot be simple words but it still felt so frustrating. I finally could try and place why I had stopped urinating naturally and yet this just didn’t feel like the answer, especially since I felt it was never explained to me properly. Still to this day I know it’s a thing and is a major reason behind it and I can Google and read articles but putting such a big stumbling block in front of me has always felt incredibly alienating.

Fast forward to the later stages of 2017, and once again my manhood was back on a reunion tour with all those old pieces of equipment I had never wanted to come across again. Whilst those procedures can be explained in a different blog post, the end result was sitting in front of another doctor who, like his predecessors, once again said something quite incomprehensible to me.  He said I had “keratinising squamous metaplasia”. Say it again???? It felt like I had looped back a few years although on this occasion the doctor actually made sense.  He explained what it meant and what things needed to occur. It did make sense but afterwards it made me feel estranged from my body yet again. I had this title now for what was causing me constant problems and when there is any kind of outcome it’s a slight relief but still, I was constantly asking myself, what was it again??? How do I try and explain it when I don’t really understand myself. It goes hand in hand with an issue I have wrestled with my neurological condition, does it really matter what its called? Ultimately “keratinising squamous metaplasia” is there but it does not have to affect my day-to-day life. I don’t need to bring it up, it’s not relevant to me really but it’s a personal battle.

Perhaps I need to create me own dictionary, or code for it to make sense. I don’t feel like it will ever completely settle with me or make sense but for my inner peace of mind if “Detrusor sphincter dyssynergia” could become “Dave the doorman who wont let the urine out” it may bring better comfort to me. Like most medical challenges, it comes from within yourself to combat the strangest of problems and I feel that is the way forward with this.