Hi everyone, happy Friday.
Today I want to share something very personal about me and that is all about my relationship with MND and how it impacts my life and how it changes my perspective on everything. July 9th marks the 4th year anniversary of the day I received my diagnosis of MND, I'm not gonna lie, it was a dreadful day that started out with anxiousness and ended in sadness. In a way, I was somewhat relieved to have an answer for those unexplained falls.
Also enjoy more pictures of me that I found in my archive.
From the get go, I refuse to let MND define me. I will still be a mum to my son and I will do the best that I can. So I sold my business and focused fully on being a mum. Deep down in my soul, I realised that I can't be with my son to see all the milestones in his life but I told myself that I will delay the progression anyway possible so I can spend more time him.
As of today, the extent of the disease progression includes complete paralysis to my arms, very limited movements of my legs and the loss of my speech. My cognitive function is still very much intact, and will continue to be while my body is shutting down. I still can't work out if this is a blessing or a curse... I now speak through a computer and yes I know people, my real voice sounds much better. Here's something that I found that has my real voice recorded prior to my diagnosis. Tell me what you think?
As MND progresses within my body, I feel more and more trapped within my own body. Simple things such as hugging my son is physically impossible for me now. I'm still upset about that but I can sook about it or I can change my thinking as it progresses. So I change my frame of mind and learn to accept it differently. I ask my carers to wrap my arms around my son for me.
In my previous life as a business owner, I learnt the importance of being adaptable. In Charles Darwins famous quote 'It is not the strongest or the most intelligent survive. It is the one that is most adaptable to change.' In the face of great uncertainties, sometimes all we have is our instincts to guide us. I know it's unorthodox to use a business school philosophy to guide me through a terminal illness but it works for me.
Along with MND, depression is a very real and dangerous reality for all people living with MND or a terminal illness, so it is no exception for myself. I firmly believe that it hasn't affected me a great deal although naturally some days are harder than others but so far because I changed my thinking along with MND and I can only accept my disability for what it is.
Like you, I don't know when I'll die. Statistically speaking, I only have one year left, but even with our advanced medical science, doctors still can't tell me exactly when MND will consume me. So I may have 60 years like Stephen Hawkins or two years or today. Nobody knows. So instead of fearing the unknown, I choose life. I'm a perfect example of life's short and unpredictable, so I can't let fear dictate my life, Instead, I embrace it. I choose to live my life to the fullest. Instead of worrying about the milestones I'll be missing, I choose to live for the moments that I'm yet to witness before I die. One of the biggest struggles I have is whenever a holiday rolls around during the year, especially on birthdays, Christmas or mother's day, in the back of my mind, I always think, would this be the last one? Would this be the last family photo ever taken? But then again I choose to focus to hold on to this moment by taking as many photos as I can. I tell myself that I have made it this far, let's aim for another year!
Before I was diagnosed with MND, I was a workaholic, always putting work ahead of everything else. I had great rewards because of that but my life wasn't enriched because I had no time for anything else. MND is not exactly the realirt check that I had in mind but I've never been happier than I am now. It took a terminal illness to make me realise what's more important in my life. Life is difficult, there's no doubt about it, but I am more aware of the beauty that coexist with the sadness and the suffering. Also I'm grateful that I am still able to enjoy the sweetness and the joy of fleeting moments. Take my story as a cautionary tale or as inspiration, but find your happiness now, don't wait, because life is short and unpredictable!
Here's a question for you, what do you live by? How do you make sure you live your life to the fullest? Please comment down below and remember how fragile and beautiful life can be...so embrace it!
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Негізгі бет Me Myself and MND | My relationship with MND, MND/ALS
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