Dreams and Dread



Sat in the shade of my garden on one of the sunniest days of the year I lose myself amidst a field of possibilities. I embrace the blue sky as my view for it makes a welcomed change from my bedroom ceiling. (Still working on getting a Television there or even a Where’s Wally poster like at my dental surgery, it always softens the blow of a filling when you’re busy finding that little Stripey jumper and specs).

I dare to dream.

Throughout my life music has always played a big part, we often listen to music that reflects our mood at the time. I find myself needing music now more than ever. I place my headphones in, the outside world is silenced. The world at present I am unable to participate in, the world I watch through envious eyes, the world I hear with a deep longing in my heart. I’m lost, in my own world, I close my eyes and take myself away to places I want to visit and people I want to see. I envisage driving on a sunny day to Ambleside with the window down and music on, something I did often, my happy place. I dream of going to the beach, I can almost feel the sand run through my fingers and on my feet, I swim in the sea, I feel free, I feel happy. I dream of a day when my mind isn’t occupied by pain, I can concentrate, I can take the beauty of the world in. I dream of mindless conversations not revolved around my health, I dream of a more confident Ali, a contented Ali. In this moment I allow myself to dream, dream of doing the things I’ve lost and dream of the life I always envisaged. At present these dreams are the driving force to get through each second, the dream of better times ahead.

Sadly my symptoms have been declining at a considerable rate and what I class as the ‘good days’ which any chronically ill person will tell you just means they are more manageable are becoming few and far between. As the gaps become shorter as every bodily system is firing off I find my reserves are at an all time low. I don’t have the time to pick myself up or even half way up before the next hit. It’s worrying, not to mention how much of a strain it is just getting through the days. This week has been the first week whereby I am wishing every second of the day away and each evening hope that when my eyes open the next day it will be a better day, it hasn’t been so far but I live in hope.

My surgery in Washington is now 63 days away, yes I am absolutely counting. The stress levels are quite high as we embark on what seems at times like an impossible task of planning such a massive medical trip so far away, from visas, pre-op testing to be done within a short time frame and sent over to Washington, insurances, flights, accommodations, special assistance, the list goes on….

It’s hard to stay focused on the job in hand when your pain is taking over however I am extremely lucky to have supportive family and friends who are also carrying the load alongside me.

Ironically I have always wanted to go to America, I never imagined my first time or anytime for that matter would be for a major neurosurgery. I always kept it as a pipe dream due to the long flight, I am
not the most confident of flyers which is heightened since my illness has progressed due to fear of  becoming unwell on the aircraft. It is amazing what you will do when your life depends on it. Every reserve is out of the bag for this journey and I think I maybe using others up also !!

I am aware of what lies ahead, it fills me with dread. If I let my mind wander I go into deep panic so for now I shall stay in my world and dream of a time my dreams will come true……..