113 days

16 weeks… 113 days… 2712 hours… 162,720 minutes. Time continues to pass by at the speed of light, yet sometimes it feels as though the clock remains stuck on 11.

It’s hard to comprehend that it has been 16 weeks on Saturday since my darling mum left the Earth for a much better place. People keep saying that time is a great healer, but to be honest, the pain seems to worsen as time goes on. I seem to be stumbling through life at the moment trying to do all the things I need to do, still trying to find my spark which went the day I lost my best friend. Some days are better than others, but the smile, laugh and ‘getting on with it’ attitude is entirely a facade.

Last weekend, I was going through mum’s drawers and found these two cards wrapped up together, which I’ve never seen before. I took it as a sign from mum, but it hit me like a ton of bricks – that overwhelming feeling of grief. I cried and cried, overwhelmed with the thought of never seeing her smiling face again. It hurts so, so much.

While I’m reluctantly accepting this new, strange and uncomfortable life without mum’s physical presence, I’ve also accepted the fact that I’m never going to get over losing mum. Others say they do, but I know I won’t – especially with the relationship that we had. She waited so long for me to enter her life, and I only wish that I had her for longer in mine – though no time would ever be long enough.

I’m lucky and blessed to have a close group of family and friends I can call upon anytime of the day, and many other people who have been so kind to me. In one sense it helps, but in another it doesn’t. As the door closes and I come home, the place feels empty. I feel empty. Life feels so lonely.

Work keeps me busy, and at times it is the last thing I want to do, but it does help as a distraction. Yet, sometimes, it feels as though I’m drowning. I’ve certainly contributed to some of the wet weather we’ve seen recently too. The tears come when you least expect them – when I hear a song, or watch a film, or visit somewhere we both used to love. There have been tears on planes, trains, in the car, in the shops, and in restaurants, and I’m sure there’ll be many more of those too.

Aside from the overwhelming sadness and grief which has consumed me, I’ve also experienced anger and resentment at a totally new level. Not just towards the fact that I’ve lost my mum, but when I see others treating their loved ones badly. So many other people, many years older than me, are so, so privileged to still have their mums on this Earth, yet seem so wrapped up with their own agendas that they forget about them – and that makes me incredibly angry. I would do anything to have my mum back, and I wish others realised how lucky they are before it’s too late.

Grief also makes you do strange things – well, you may say strange, I don’t think they are. Just like when she was here, I talk to mum all of the time – in my head and out aloud. It’s the only thing that helps – to keep her alive in my heart, soul and mind. I still keep picking up my phone when I’m out to call her – a habit that will take some time to not do; just like when I’m stuck, and I would turn to mum and say, ‘what should I do?’ I still do it, but hearing her answer is harder than before.

One attitude which has changed since mum passed away is actually something I think she’d be rather pleased at. I’ve always been a perpetual worrier – to the surprise of many! However, a lot of those worries and anxieties have gone, quite literally. I care deeply about a lot of things, but then for a lot of other things, I’ve come to the conclusion that I really don’t give one anymore! Nothing seems to phase me now. The worst thing that could possibly happen to me, has happened. So whatever else life has to throw at me, it can gladly do so, and I’ll greet it with open arms… or a baseball bat!

I’ve tried to write, but I’ve struggled over the last few months, particularly about mum. I only need to write ‘mum’ and there are tears rolling down my face. However, I’m determined to write more about my incredible mum, and the beautiful person she was and always will be, as well as all of the things which have happened to us as a family and the things I want to change in the world. So this is a start, at least. Because, everything I do will always be for you, mum – and I hope it makes you proud.

A mother is your first friend, your best friend, your forever friend.”

Written by Simon R. Stones

Simon R. Stones BSc (Hons) MMRS is a multi-award-winning patient advocate, consultant, researcher, and writer from Manchester in the United Kingdom. He is recognised as one of the top 100 most influential people with disabilities in the UK, and was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with a variety of health conditions, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood, as well as a carer for his late mum. He is currently an Associate Fellow of the Royal Commonwealth Society and a trustee of RAiISE. He is the former President of the European Network of Fibromyalgia Associations (ENFA).

4 comments

  1. I nearly cried reading this, I’m so sorry.. Nothing I say with go anywhere close to being enough.
    I’m very close with my mum and can’t bear to consider losing her, I just can’t go there. Reading this broke my heart, I’m just so sorry. I can see where you’re coming from with the anger and resentment part. It’s not the same, but I feel a sense of anger and annoyance at those so flippant about children, who don’t care about their babies and seem to not appreciate just how lucky they are to be able to have children (as I’m someone that’s now no longer going to have that as a possibility in their future).
    I’m glad treasured your mum and will continue to do so with her memory. If your compassion in this post is anything to go by, don’t think you have anything to worry about with making her proud  ♥
    Caz x

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  2. I’m so glad you have written this as hard as it is. It felt as if I could have written the same when I was 24 and lost the most important person in my life…my mum. I would come home from work and pick up the phone to call her and as i started to dial the number i would realise she wasnt there and this went on for months. All those things i wanted to tell her – it was all left as unfinished business as she was gone so suddenly- no chance to say goodbye. When friends have falling out with their parents, i warn them they dont know what is going to happen tomorrow – i dont want them to live with regrets. And all those dilemmas i needed mum’s help with… somehow i felt a piece of her inside me telling me what decision to make. I came across a couple of things that helped me a lot…the poem “A bend in the road” and also a little story about a boat sailing away from our shores and how sad we are to see it leave – but on heavens shores there is a massive celebration as the boat is arriving. My regret is also bottling up my grief for so long (if you’ve ever read Oliver Jeffers heart and the bottle – that is me!) Because then when the grief struck around 10 years later – it struck really hard and affected my life massively. So you are wise writing these things now. Many people will be helped by what you have written and are thinking of you.

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  3. Gosh, my heart breaks for you, keep writing Simon about your Mum, deepest sympathy for your loss. I don’t know you personally and yet I am proud of you, I have followed your journey, because I have been a member of Juvenile Arthritis Parents and Families on line community, you are such an amazing advocate, your positive personality has shined through your on line words, dedication, drive and most of all perseverance despite your own adversity. You don’t have to hope your mum is proud she most certainly is. What an amazing son caring for your mum. Keep going you will find strength from the most unexpected places. Kind regards.

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