Published in Cork’s Evening Echo 28th May 2014
Take a deep breath, fill your lungs, tuck in your chin for deeper tones and in the booming dramatic voice of movie trailers say… IN A WORLD…
Try that again, you didn’t get your voice quite deep enough… that’s it!
IN A WORLD… where superheroes battle daily with stiffness, wobbliness and shakiness to name but a few of the baddies in this movie called ‘Life with Multiple Sclerosis’.
IN A WORLD… where the internal mechanisms of this movie’s superheroes are frequently under attack from their own bodies!!
IN A WORLD… where this movie’s main character has been let down by her nervous system, where she endures the many effects of her daily battle with Multiple Sclerosis.
IN AN ‘OH SO CRAZY’ WORLD… where for no apparent reason (there are many theories, none definitive), this heroine’s nervous system decides to wage a war on her own body, by attacking the outer lining of her nerves – the Myelin Sheath.
‘Myelin is an insulating layer that forms around nerves, including those in the brain and spinal cord. The purpose of the myelin sheath is to allow impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, the impulses slow down.’
(Source: Medline Plus Medical Encyclopedia).
Picture the plastic insulation around electric cables. Damage to the Myelin, results in signals getting blocked and muddled between the brain and limbs, eyes, spine or wherever MS decides to pounce unannounced.
Today is World MS Day.
A day for raising awareness.
A day for empowerment.
A day for raising money to support Multiple Sclerosis organisations worldwide.
Apparently it’s also a day for celebration.
Celebrating WHAT exactly?
Am I celebrating the fact that some nights I am woken regularly with muscle cramps in my legs?
Am I celebrating the fact that some mornings my legs are so stiff it can take few minutes to get myself moving?
Am I celebrating the fact that I’m finding it harder to do everyday tasks such as emptying and filling my own dishwasher without taking breaks?
Am I celebrating the fact that during this morning’s shower, I needed to use the seat? The seat that was installed ‘just in case’, which is normally used by my daughter or I for shaving our legs?
Who cares? I do!
Small victories are important to me. They keep my spirit up. It is these tiny every day battles between my illness and I that frustrate me. Small things like needing to sit while I lather up my hair. As I asked, who cares? As I said, I do!
Today am I celebrating that following a long day, where a friend’s daughter made her first communion; I feel great. I managed the church, hotel, party in their house and travelling in between without mishap? I resisted the temptation to use the bouncy castle.
Today am I celebrating the fact of in spite of my symptoms, in spite of the effects MS has on my life, I am a happy, determined and almost fully functioning human being?
Today am I celebrating my wonderful friends and family for their endless support and patience?
YES I AM!
Today I am celebrating that I am winning a mental battle even if I’m losing a physical one. Today I am standing tall and looking the world straight in the eye. I am declaring that today, on World MS Day I am ready to continue fighting this disease with stubbornness and resilience.
IN A WORLD… where I say to MS that I will FIGHT YOU, but I absolutely refuse to celebrate you!