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I tragically lost my beloved husband to the cruellest of all Diseases earlier this year, ALS/Motor Neurone Disease, he was just 53. He fought so hard every day to stay with me for 2 years after his shocking diagnosis, never complaining, always remaining positive and cheerful as was his wonderful nature, he was so very brave, an utter inspiration. He never ever gave up hope, despite all of his pain and suffering, he simply said he wasn’t frightened for himself, but he was very frightened for me and what it meant for my life moving forward. It was simple, he loved me, I loved him, he was truly the most selfless beautiful soul I have ever known and I was privileged that he chose to love me. I am blessed that we found each other and shared so much love, laughter and devotion for the years we were given together, even though it is so very very hard to understand why on earth this happened to him and why we were not lucky enough to grow old together, life is so very unfair sometimes, but as he often said 'whoever said life would be fair Lau'. He was the most wonderful beautiful, intelligent, funny, kind, caring, loving, loyal man I have ever known, and I adored him.
As those who have also been through this terrible situation will sadly know all too well, ALS/Motor Neurone Disease is the most devastating, exhausting, gut wrenchingly difficult thing someone could live through. Watching someone you love leave you a little every day and not being able to do a thing to stop it is absolutely sickening and the feelings of helplessness are unbearable. Watching their body fail them slowly every day until they are terrifyingly locked inside a body that simply doesn’t work anymore, even unable to breath unassisted, is beyond words. I am so sorry for those dear souls who have gone through this awful Disease and lost their brave battles and I am so sorry for those of us who had to live through it too, it truly is absolutely devastating.
Over the past months I have tried desperately to get my head around everything that happened and come to terms with the fact that I have lost him. I have tried so so many things including bereavement counselling, keeping busy, always having plans in my diary, going away for short breaks with friends and my sister, I even went away on my own to be with my thoughts...but nothing has really helped.
During the past few weeks I have come to realise that only those who have tragically had to go through the same awful situation could ever truly understand how hard this is, how it was during their illness and how hard it is now that they have left us.
Love and support from friends, family and work colleagues etc is of course amazing and a blessing, however, no one could ever truly understand what we have all been through, how could they bless them, it will only ever be those unlucky people who find themselves in this situation that ever could.
I have searched and searched the internet but I just couldn’t find any local groups where people like myself could spend time with others who are sadly going through the same tragedy to offer support, friendship and understanding to each other. So instead I thought I would be brave and see if there are any others out there who would like to join a little friendship group where perhaps we could meet up from time to time and support each other, perhaps arrange to do some nice things together in memory of those beautiful souls so wickedly struck down by this awful sickening illness and taken from us so we can honour their memories. Perhaps in doing that who knows, maybe just maybe we may find some comfort in all of this sadness by helping each other smile again, who knows we may even make some wonderful meaningful friendships along the way to help us all during these difficult times as we try to move forward with our lives.
Best wishes,
Laura

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