“We all die. The goal isn’t to live forever; the goal is to create something that will.”
Time. There’s never enough of it.
We never live the same day twice, yet somehow the days, weeks, months and years roll by without us even realising. Yet when something stops you in your tracks, the instant knee-jerk reaction is panic and fear that we don’t have enough time left to achieve what we have left to do. Following my recent diagnosis of Motor Neurone Disease, that's my current thought.
How long will I be here?
How will my family and friends cope with seeing me deteriorate before their eyes?
How will I cope?
What will I leave behind?
If truth be told, these are my constant worries about what is yet to come, but now I have been allowed to truly live in the moment and not look ahead of tomorrow. I can honestly say it is life-changing from that perspective. What once caused lots of worries now bears very little importance.
I am in my sixth year of marriage with my beautiful husband James, and we are parents to ‘Little Man’. Sadly Saturday 5th March 2022 saw my life change forever - my diagnosis of MND, aged 35. I was sitting in the neurologist's office after months of tests and investigations to be informed of my diagnosis. My heart stopped. my life stopped. My immediate feeling was that life would end tomorrow, yet I still wanted to do so much. 35 years of my life have been fantastic, but now someone told me it was over. I was angry. How could life be over at 35?
I know the coming weeks and months will see me, my family and friends facing the actual reality of the disease and the challenges that we will face. I truly hope one day in the not too distant future that a cure is found for MND, but for now, we will try to slow its progression via medical treatments and clinical trials and keep my mental health in a good position.
Motor Neurone Disease is a Neuro Degenerative Disease (NDD) which means my central nervous system is unable to send signals to my motor neurones which are critical to moving limbs and control movement. Time is not on my side. For 50% of sufferers, life expectancy from diagnosis is less than 3 years, and the disease will gradually impact my ability to use my limbs, to be able to speak and in time, potentially my ability to breathe unaided.
My symptoms appear to be progressing slowly, with my hands and arms being the most affected at the moment. Some small everyday things are complex; cleaning my teeth, buttoning a shirt, tying my shoelaces. Also, chronic fatigue can hit and leave me exhausted, but in the main, I am still able to lead a relatively everyday life for the time being. It feels like an invisible illness as to anyone who saw me; I don’t look like someone who has a terminal illness. But then again, what does that look like?
Time has suddenly taken on a whole new meaning. The area of life that I am struggling with the most is the tension of using my limited time to focus on the most important people to me and spending time on things I need to do to accommodate the change MND demands. This includes changing our financial plan to provide for the needs of my condition and the needs of my family whilst I am alive. What gets me most is how my family will handle matters once I am gone. I don’t want them to have to suffer like I am. I want that burden not to be there. They will have gone through enough.
MND creates many new needs – housing facilities, transport arrangements, communication needs, medical and care. These costs are likely to be at their highest, just as my ability to earn money and provide will be at its lowest as the disease takes greater hold.
Aside from our own needs, I am determined to help in the broader fight against MND and indeed Neuro Degenerative Diseases in general, to help others and contribute to the quest to find a cure. In 2021 the UK government secured £50m towards funding research for a cure for MND. So with that in mind, I want to hit and smash my target of £50,000.00.
From the funds raised, I want to leave a lasting legacy;
- To raise much-needed funds for the MND Association
- To fund research to support others in the same position as me
- To raise funds to support the additional financial needs my family are now faced with;
- To be able to fund and complete my bucket list
Sharing my diagnosis
has been extremely difficult, but one I felt needed to be shared. MND research is underfunded, and there is very little out there for younger people who face this diagnosis. We have already seen the generosity and warmth shown to our family, and it has been very overseeing to have that support and love. It means more than you’ll ever know.
So now over to you - lots have said they want to do something for us. This is the page where you can do just that - by supporting me to reach my target. Your help, support and donation will stay with my family and me forever. There will never be enough words to thank you and for the change, this will make whilst I am here and after I am gone.
Please feel free to share with anyone you think appropriate.
With my very best wishes, Sam