blog - MS and life
Fading Memories
Born into a working-class family where my father would go to work every day in the same factory my grandad and his father before him toiled, while my grandad on my mother’s side worked in Fine Wool Fabrics, then The People Newspaper as their driver, the local paper where sometimes it contained little but spit and cheek, only then the next week it blew your mind with the neighborhood gossip. I think I recall him at one stage declaring he was driving an oil truck when he was merely thirteen. Then there were the greyhounds at the track, how he had loved those dogs. All the while my mother who had had no choice with five small ones to stay home and do what most assumed not that hard a job in comparison to those in the work force, stayed home. Yet those same people neglected to bring to mind that she had been working from the age of fourteen as a picker in Fine Wool Fabrics, until moving onto a fulltime two-year secretarial course to enable herself to obtain a job for the Civil Service and Health Boards, until finally at seventeen she had landed a Council job, well until I was born. I have been told that she had been unable to handle leaving two small babies at home, so one lunchtime while visiting me at my grandparents where I stayed while my parents worked, took me to the doctor seeing that I was sick, put me in my pram, wheeled it to the Council and handed in her resignation. Only afterward had to go home and wait for my father to finish work to inform him she no longer had a job. The factory where my father worked closed that December, followed by the recession in 1984. By now one of my sisters had been born. There were many times during my younger years where going to an aunt’s house for a visit was a treat, only little did I know they went for the reason that there was no food in the house to eat, with no more charm bracelet ‘pound notes’ to break open for bread and milk. Only now I smiled at the thought, for I had constantly been oblivious to the hardships my parents under went in a bid to keeping us all under the illusion that they had it all under control. The small details that abscond from memory as time goes by are always the finest ones, especially when they make a reappearance if only for a moment. Waking on a winter’s morning for school only to find my father had lit the most wonderful fire, sparks flying with the promise of heating the back of my legs, while fighting for the spot closest to the heart before the rest of my siblings arrived, uniforms in hand to be warmed before putting them on. Or the sound of my mother banging on the side of the saucepan with a wooden spoon informing us all that the porridge was ready for consuming, all the while shouting in her not so awake voice for us all to hurry up before we were late. Then there are the moments that never return. A sisters First Holy Communion, there was a party or so I have been told as my mother was in hospital at the time, once again so I have been informed, only there is not a single thing in my memory which informs me of this piece of evidence that this in fact transpired. Supposedly we all went to dinner the week after to a place which later burned down, leading me to believe that my mind is not only playing tricks on me but so are my siblings. My own seventh, eighth and ninth birthdays, yet I can recall the day that same sister was brought home from the hospital. How my great aunt who had long ago stepped up as our grandmother, held her before me and asked ‘well what do you think?’ I recall grunting much to my mother’s amusement and my aunt’s laughter. The same woman who reddened by backside as they would say for getting lost while out purchasing clothes for us all one Saturday. The memory of running down the road towards my grandad Tom’s house in the direction of the open arms of my father, my three year old legs were going to break free of the concrete beneath them leaving me to fly like a bird. I had gotten a new haircut and couldn’t wait to show it off, and I can still recall my own laughter at being picked up and span around until my head of straight blonde now bobbed cut hair was dizzy. Memories of standing watch as my mother made homemade bread, or French plaited both my sisters’ hair because one day I would need to know how these things were done. Then there are the memories which no matter how hard you attempt to stomp them out, they will under no circumstances recede into that dark place where they belong, they are the ones that will plague but what is more, they will command your attention until that very day you take your last breath. The memory of my youngest brother blue in his cot one morning is a recollection I wished not to recall, as Aileen asked ‘why is the baby blue?’ My father snatching him from his cot as he ran down the stairs blowing in his face, all the while my oldest brother Lee was freaking out, I was crying along with Aileen, yet our youngest sister Stephanie was playing totally oblivious to what was going on. My mother screamed in horror that her child was dead, just as my father burst from the house, bear footed, shirtless and headed single-mindedly running as fast as humanly possible for the doctors around the corner. My mother dashing throughout the house close to losing her mind as she tried to figure out what to do with the other four of us just as she tore after him. Having no car or form of transport resulted in our family doctor breaking speed limits to get him to the hospital in a bid to save his life. And there is where my recollection of the incident concludes, I know nothing further of what arose subsequent to that. Hence being informed that a neighbor who I am extremely fond of, came to the house to watch over us while our parents where at the hospital. Of course there are the memories I may find entertaining that no one else might if I could in fact remember them, like the day I was doing my homework in the garden and my sister Aileen kept pushing my arm as I tried to write, in retaliation as any child focusing on keeping her teacher happy, I swung around stabbing her with my pen into the top of her leg. She screeched in agony whereas I promised her the world to remain quiet furthermore not tattle on me. She has the scar to prove that it did come about, me on the other hand, I just laugh as yet again I consider the fact that perhaps they are jesting me, well with the exception of the scar, I believe that enlightens me that this one may possibly be accurate.
“Karen?”
“Yeah,” I said as I put my medication into my mouth and swallowed.
“Do you remember the time Lee painted his bike black including the tires and brought it through the house?’
“Yes I do,” watching as her face changed before my very eyes gave me a feeling of success, I can get involved in the conversation now. “I remember him getting his ass kicked.”
“Yes he did,” her laugh was infectious when she relaxed enough to let it come easy. “Or Stephanie singing into the banister of the stairs?” watching her as she continued to reminisce, I hadn’t it in me to tell her the conversation was already lost on me. ‘Singing into the banister? When did this happen? Wasn’t it the chord from the electric kettle?’ “You okay? You look confused,” her voice had changed somewhat making me feel anxious that I was really that transparent.
“No, I’m okay, I guess I had just always thought it was something else.”
“Yeah the chord from the kettle,” giggling again, she tapped me on the arm unknowingly as her head fell backwards as once again her laughter came. “She was so cute, the little blonde head on her, and the pout.” My face must have lightened a little for when she wiped the tears from her eyes she looked at me strangely, only said nothing, she didn’t have too. I think my own fears were rubbing off on her and she hated it. The one thing I have learned since the beginning of my MS battle, is that what I feel, all of my siblings feel. My heartache, pain, and anger but most of all the fear of being regarded in a different way than everyone else, but right now I had a memory that was accurate and it compelled me to feel invigorated.
“What about the time Stephanie was climbing the door frame and spotted mam and dad hiding the Santa toys,” now they all laughed, but yet again I have no recollection of this. ‘What the hell is she talking about?’
“Or when Lee was hanging upside down from the attic door with the binoculars wearing Simon’s baby hat,” my mother piped up snorting at the memory, “You took the photo,” she added looking at me. ‘Just smile back and nod your head,’ I said to myself as I watched and listened to the stories come one after the other with the realization that only a handful made sense.
“And then you swallowing your tooth,” Aileen added laughing so loud I couldn’t help chuckle at her childishness, all the while a frown formed on my brow as I forced myself to recollect what she was talking about. ‘What bloody tooth?’
“No that was Lee, I distinctly remember him swallowing his tooth and crying because he thought the tooth fairy wasn’t going to come.” I added full of confidence only to have her correct me with, “no, it was you and you screamed the house down.” ‘Well shit!’ was all I could think as yet again my memory had eluded me.
These days as you can see are much different, while in place of my parents keeping us all under the illusion that they had it all under control, it was now my turn.
Running the Extra Mile
A potentially disabling disease of the brain and spinal cord, ie: central nervous system. Disrupting the flow of information within the brain, and between the brain and body. Yes, ladies and gentlemen what is the basis of the bane of my existence. Now I could get into the whole spiel of how hard it is to live with MS, but that has never been how I deal with this addition to my life. Did I ever imagine myself running and making it until the end without dying mid route lol NO I did not. Running has never been my thing. In all honestly until then I couldn’t run the length of myself. And truth be told I am not sure I will ever do this again. It hurt! A lot! My right hip hated me from mile 3, to the extent I was dragging my leg over the finish line. But, the point is - I dragged it!
Over the years I have read and watched so many videos of fellow MS warriors running, pushing the boundaries of the bodies they have been given, and all I could think was, “Someday, I’m going to do that too.” Months of training every day, diet changes, an emotional battle with oneself, yet in the back of your mind you can see the end result. You see those who can no longer partake, the ones who lived for the sport who now sit on the sidelines tears in their eyes just longing for the chance to run yet again. To walk. To stand.
By mile 4 I could no longer feel my right foot, and all I could think of was what it would be like to sit in a wheelchair and watch from the sidelines. By mile 5 tears streaked my face and I had no choice but to stop, but to continue walking if only to keep the motion of my legs going one foot after another. And then it happened. A man, someone I didn’t know stopped running and asked if I was okay. It was then my anger grew within and while smiling and thanking him for his concern on the inside I was fuming. Walking turned to running, and I didn’t stop until I passed him on the track, the pain now unbearable as it made its way into my lower back, my shoulders already numb. Yes, I am okay, because I in that moment I choose to be.
The final mile brought with it both horror and ecstasy. Horror at the idea of how my body would punish me for the next week, and ecstasy because I had the drive to punish my body.
"We do not sit, we walk. We do not walk, we run. We do not cry, we fight."
And then Nothing
At the moment I am in the process of writing the 4th book in my Sekhet Saga, "Whispers from the Grave" While I love to say that being a writer is the best job in the world - right now it is proving itself my nemesis. Not me per say, but my mind. My awareness. My desire to aspire to greatness.
I witness the words, I can describe what they look like, what they would sound like, what they could taste like if that is the case. But can I get my brain to liberate them? Big fat 'Not on your life.' I call my husband and say "It sounds like this word, it signifies this, represents this, implies this." And he proceeds to list out a variety of words, and for the most part he actually hits on it.
I recently read in an online comment by some stranger that having MS is a death sentence. Is it? I don't see it in that way. Maybe I'm just too terrified to admit that this person was right. Maybe I should write about it, but then what?
Again, I hit on the foundation that while I write daily, combat with my legs on a regular basis to do what I tell them too, because I need to get to work, I nevertheless return to the fact that while I love to write every day, every so often my own brain denies me the right. Isn’t it funny how the one thing that should be there to aid you through life, can now disallow the one thing that has kept you going through the worst days to happen? I sit at my laptop for an hour at a time, place my fingers on the keys, and look out the window. The things that race through my mind are wonderful. Stories of war, love, pain. Still my fingers don't move. I see the characters, hear their voices and still my fingers don't move. I guess this means that these stories are just for me and what a shame that is.
I bow my head to those who can sit and write their own story. Their personal memories good and bad. Would it open up your mind to other things. Would the memories that cram the space between your ears be gone, only to be filled with something new and exciting? That is a question for the scholars. Can you actually replace memories once placed out into the dreamlands, the abyss, no longer to be retained, locked away for your own personal use? Sometimes I do wonder if that would help a heart to heal? To forgive. To allow distant memories to fade, until they are no more, lifting a vale of darkness and betrayal.
My illness, my struggle, my tears, my laughter. And even as I write this, I smile and think to myself, "That story is mine, and mine alone." The truth is, there are somethings better left unwritten, the battle of one’s life is a personal one, that once spoken is no longer your inner most powerful secrets. It is no longer yours; it belongs to the Universe and every living creature in it. Besides, today my brain would not play nicely. It allows snippets of ideas, and nothing more.
The American Dream
Having moved from Wexford town to the Pacific North-West of America in 2012, there are things that will never change. For starters Wexford will always be home. Home is where the heart is, in my case home is where my family are. For many people who believe that you just pack your bags and move to another country and things are so easy, the reality is, that statement couldn’t be further from the truth.
It all begins in Dublin. Paperwork, fingerprints, background checks, foreign addresses that you will be residing in, lawyers once you arrive, interviews, Homeland Security, more finger prints, background checks. Applying for S.S.N number, getting a job, driver’s license, driving on the other side of the road, people saying ‘Have a nice day.’ Looking for tire swings – not seeing any tire swings. The movies lied! Turning the heat on every time you want a shower because you are so used to the emersion heater, the toilets hold more water so when you flush you just hope you don’t flood the place, the money feels different, the people sound different - now it is you with the accent. Folks implore you to speak just to listen to you, and who would have thought the number ‘3’ could be so entertaining? Arriving on a six-month traveling visa, I got to witness the magnificence of the Red Woods of California, the Goonies house of Oregon and the wonders of the South. Following that six-months, I extended my visa and a year later got married. Yes, the questions are exactly as they are in the movies, even down the colour of your spouse’s toothbrush. The interesting hoops one has to jump through, not to mention the money it takes is substantial, yet this is what we do to ensure we keep our way of living.
Residing in what is deemed desert, with five seasons. Yes, five seasons – Winter, Spring Summer, Autumn and fire season. Hence you learn how to adapt to the weather incredibly fast. From snow that leaves you digging your way out every morning to go to work (things do not shut down), to fires that cover the sun overhead. Would I change it? Not a chance.
Living in Europe there is the idea that America’s in general are a very cocky and arrogant race of people. For me it couldn’t be further from the truth. Of course, like anywhere in the world there are always those who stand out leaving the rest to be shamed. Just like the stigma that every Irish person is an alcoholic.
American food is so… flavoured? I’m not sure if that is the correct word, but if everyone is like my husband, the food is seasoned, and seasoned and yes, you got it – seasoned. Mexican food makes me happy on so many levels, nevertheless I do miss the Premier fish and chips.
Then there is going to the local pub. No more do I match my little black dress to my stilettoes on the weekend. Instead, I wear a comfortable pair of jeans, a flannel shirt and if I am feeling adventurous: flipflops.
Following years of writing, making mistakes and focusing on where I wanted my career to go, things have finally balanced out with the release of book one in the Sekhet Saga through Wild Wolf Publishing. Like always I go back to my roots, to churches I spent many a Sunday daydreaming in, and friends I keep alive in my characters. The American Dream does exist. It is there for the taking. If you work for it!