As a mature student with disabilities, I have sometimes found my time at University difficult, however I have always found a way to fight through whatever was thrown at me and with the support of family, friends and the university I have managed to overcome whatever issues that would arise. However recently I have not been so successful. I found this academic year to be very physically and mentally draining on me and when I took ill with the flu in the Autumn term, things started to snowball. I missed quite a bit of key lecture and seminar time and after Christmas was out of the way, I had some form of an attack which I am still suffering from to this day, meaning I have not returned to University yet and have been placed on medical leave.
I had high hopes to manage to complete my degree this year and progress into a career in teaching, but that dream, at least for now, is not going to become a reality and a diagnosis of a condition I did not know I suffered with may mean it never will. On the 28th of December, I was diagnosed as having a Chiari Malformation of my brain. The short of it is that the cerebral tonsils extend too far down and past the brain casing, causing them to be pinched when ever my head is bent too far forward or backwards. This pinching can cause all manner of problems, some of which are extremely serious. It is likely at some point I will require surgery, and that prospect is absolutely terrifying. Looking back over the past decade, it is painfully obvious that I was suffering from this condition, however it is so rare and even more rarely spoken about that it was overlooked time and again by all the various specialists I saw. In addition, it was also easier to find explanations in the obvious, as I had suffered quite a traumatic knee injury, followed by a further injury to the same leg a few years later. Things like “complex regional pain syndrome,” and “fibromyalgia” were used to explain away the problems I was having, but nothing ever fully fit the bill. It wasn’t until I was seen by a brilliant neurologist by the of Andrew Heald that my symptoms were questioned in a new way, and if it wasn’t for his intervention, I honestly cannot say if my CM would have ever been discovered and I could have carried on through life with a ticking time-bomb in my head.
What is most frustrating is what I have lost over the past decade while one specialist after another effectively used me as a guinea pig, pushing one drug after another along with every dodgy diagnosis. Having an intolerance to most pain medication (unknown at the time), I suffered various mental and physical side effects and became a terrible person to live with and be around. My behaviour was unacceptable and I repeatedly tried to push away the people I love and care about and those who only wanted to help. The most frustrating thing about it is that I remember so little of it. I get told the almost outlandish stories of what I did or said etc. and I can only sit there in shocked silence trying desperately to grasp at some shred of memory. However my memory is ruined. Whether by the medications or the CM itself, I have lost whole parts of my history and general knowledge. Sometimes I will remember something at random, and cannot be certain if it is even a real memory or not, as I often remember things in a jumble, so three separate instances become one with various bits omitted and twisted until the final product bears little resemblance to reality. Alternatively, I’ll remember something so utterly pointless and useless that I wonder why I remember it at all, and something important will be seemingly gone for ever.
Unfortunately, this hasn’t simply affected my past, as my present memory is just as damaged. Between the forgetfulness, confusion and brain fog, it’s any wonder I even get through the day without going mad (although there are some who would claim I went mad long ago). As each term progressed at university, I found it increasingly difficult to prepare for seminars and exams, as remembering key information was sometimes next to impossible, but I developed tools and aids to get by, although my exam performance was impossible to improve. While I would rather not be off at the moment, it probably is a blessing in disguise as I am not sure how I would have coped with the assessed seminars that I would have been doing without finding some sort of middle-ground with my condition. Now I can at least attempt to reign it in and find some way of getting back to some semblance of where I was, or failing that some alternative route to achieve my goals. I just hope that this will be a real possibility and I’m not going to keep getting worse, or simply stay as I am.
It is a very uncertain future at the moment, and I don’t like playing with this type of unknown. On the 15th of February I see a new consultant who actually has a specialisation in my condition, who even has a nurse that works with him who is trained to work with this and other neurological conditions. I am both anxious and excited to be seeing this consultant, because it will mean speaking to someone who actually knows what they are talking about and can start to get me onto some sort of consistent treatment which will hopefully give me some sort of quality of life which I do not have at the moment. So watch this space.
