On the 17th March 2022 three letters changed my life forever – My consultant neurologist, informed me that I have “MND”.
I am an avid sportsman, and competed at a good level in, rugby, swimming, karting, ten-pin bowling, and tennis. In the summer of 2021, I was playing tennis for my club Rickmansworth in Hertfordshire to celebrate their 100-year anniversary against the British army national team. Towards the end of my match, I lost grip of my tennis racket, and it would fly out of my hand for no then apparent reason. Piecing together my pretty complex medical history having had five major back and shoulder surgeries, this was, in reflection, something that had happened since 2019. At the time, it was dealt with by various surgeries and intensive sports physio. With the benefit now of hindsight, there was clearly more serious issues than orthopaedic.
The period from March to November 2022 was the darkest time of my life. I was confused, angry, intensely sad, and lost. Due to the severity of diagnosis, my hospital consultant team went through exhaustive tests during this period to see whether my condition might be several illnesses that mimic MND. It was on the 28th November 2022, when my consultant neurologist confirmed that I had motor neurone disease (MND/ALS).
On the 01st December, 2022 I travelled to Egypt (Hurghada) to try and personally make sense of everything. I had wonderful support from some very close friends and family from my original diagnosis, but now I had to plan how to share my illness with my three children, mum, sisters, and other family and friends. This period was even more life changing for me, I decided and committed to go forward in the most positive way possible for whatever time I have left in my life. It would have been very easy to curl up in a ball and be completely defeated. My mantra since then has and now, will always be “Never Give Up”.
I had a perfect storm of challenges in when and how I would share the news. My 81-year-old Mum was going to New Zealand for 3-months in January 2023 to be with my sister and family – She would not have gone if I had told her immediately. My eldest daughter, Lauren, was living with me, and in December got a dream job offer in Cornwall to rescue and rehabilitate seals. My youngest daughter Georgia was in her final few months of her degree at Nottingham university, and my son David had important exams at Cardiff university. They also had their 21st birthday 19th March 2023 – I was never ever going to upset or detract from that. I made a decision to finally share my news with everyone in May 2023. It was, and will forever be, the saddest time of my life. Knowing that sharing the details of my illness would create intense pain and hurt for those that I cherish and love the most. It is very confusing for family and friends, as they see someone who looks ok, is breaking a world record, but has a terminal illness. That is still hard for them now to correlate that. We talk all the time, and I swore that I will share everything now without holding back, as they deserve to have their time with me.
Whilst in Hurghada I had the idea of breaking the Guinness world record (GWR) for the longest ever open water swim, non-stop and unaided, for a person living with MND. The GWR team took a few months and gave me a target. I trained for over 300km in Hurghada, Murcia, Cornwall, and the Denham waterski club. On the 28th September 2023 I achieved the world record of 11km, with my three children, Lauren, David and Georgia swimming the last 1.5km with me. The conditions were awful! Really cold water and high winds, I pulled my groin after only 4km which meant I had to swim on one leg for the last 7km, and I had post-swim hyperthermia. That said, there were 100s of supporters at the lake, and live coverage from BBC breakfast, ITV, BBC London and 3CR radio. Looking back at the incredible support and media coverage, I feel very proud that the reasons for the world record attempt were achieved and these were.
- For people and families who live with MND and other terminal illnesses, that you can still make a difference as the impossible can sometimes be made possible.
- To raise more awareness of MND/ALS and funding for MND research and the fantastic, Challenging MND team, and, MND Association (MNDA) who provide incredible support for those who live with MND/ALS and their families
- Whilst my children are long past me giving them life lessons – I just needed to give them one last one. “Never Give Up” even if the odds are stacked against you.
- It would have been very easy for me to curl up in a ball and accept my fate, however the swim attempt gave me something personally to focus on and to make a difference
When I received the official news of confirmation of the world record, I immediately went for a walk to a place by the fields where I go to talk to my dad, who died in 2021. I was very close to my dad. It was at this point (over 4-months from the swim date) that I was overwhelmed with personal pride for what I had achieved, and it reminded me of various BBC & ITV reporters who talked to me about legacy. I did not set out on this journey to achieve a legacy, but now I can, with immense pride, accept that a legacy has been created and that the generations of O’Brien’s to come will always know what I achieved – I feel immensely grateful to have had this opportunity to make a difference. I am not sure how much life I have left, but I am grateful for each day, and I intend to live every day in the most positive way I can.
My journey took an unexpected turn, but I have met the most wonderful people in the last 2-years. The team at MNDA have shown great support to me and my family, and the brilliant team at Challenging MND, headed by Liana, with an absolute hero founder in the MND warrior who is Alex Gibson. Challenging MND is one of the most brilliant charities as it was set up to help people with MND and their families to experience and create amazing memories that will last forever. I am already planning that amazing memory with me and my children thanks to Challenging MND – Thank you for everything you do.
When the odds are all stacked against you, and you feel like giving up, we can still all make a difference to peoples lives and our own. The mantra of Never Give Up now resides in my kitchen alongside the poem by Dylan Thomas “Do Not Go Gentle into That Good Night” – My eldest daughter Lauren is running in the London Marathon on her 25th Birthday 21st April for MNDA. Most importantly, I received so many messages from people that I don’t even know who have either lost loved ones to MND/ALS, or they have this dreadful disease. Every message included the word “Inspirational” – That means the world to me. To this end, it has lifted my spirits up, I did make a difference, and I intend to keep making a difference until my very last breath.