Reflections of 2019

Each year, on December 31st, I write my ‘reflections of…’ post – as an opportunity to look back on the year, as well as to think about where I’m going in the new one. It is usually a joy to write; but not this year. In all honesty, it has been a challenge to get the words out of my head.

May the tears cried in 2019 water the seeds planted for 2020.”

Count your blessings

Today, be thankful and think how rich you are. Your family are priceless. Your health is wealth. Your time is gold.”

2019 has been the worst year of my life. My world changed forever on Saturday 16th November when my darling mum, Sandra, passed away. Death is the one certainty in life for us all, but we never think it will ‘happen’ – and there’s certainly never a time when we feel ‘ready’ to say goodbye to those we cherish so dearly. Mum was unbelievably strong, to the very end, until her time came to sleep and be free. She fought with such bravery and determination. She powered through surgery in December 2018 to remove a tumour from her pancreas, survived a number of infections (including several episodes of sepsis), and came through the most horrendous ordeal after falling and fracturing her arm – among hundreds of different treatments, interventions and appointments.

In May, after mum’s fall, she was needing more and more help, and so I took the decision to suspend my PhD, so that I could be at home, 24/7, to make sure she had the best care and support possible. After her last hospital stay in August, I made her two promises. The first was that she wouldn’t go back into hospital. The second was that the only home she would ever live in was my home. Thankfully, I kept them both.

Our family, friends and neighbours came together to celebrate her wonderful life on Thursday 28th November, in what was a beautiful funeral for a beautiful person. She certainly gave me the strength to read her eulogy. Dad and I were so overwhelmed with the amount of messages, cards, prayers, love and support shown to us throughout this difficult time. It means so much to have so many wonderful people around us. We are so very blessed.

As we try to move forward, the pain of losing mum will never go, and I’ll never get over losing my best friend, nor will dad. Our lives have changed forever, and we now have to exist missing a big piece of our heart. My mum was simply amazing – and always will be. The one thing she wanted (and kept reminding me of) was for me to live my life to the fullest – which I’ve always tried to do, and will most certainly do now. Wherever I now go, whatever I may do, my mum will be with me, and experiencing it all. For as long as I’m living and breathing, so will her memory. It seems fitting for me to share the lyrics of Il Divo’s ‘Mama’, which was played at mum’s funeral. It encapsulates my thoughts and feelings so very much.

Mama thank you for who I am
Thank you for all the things I’m not
Forgive me for the words unsaid
For the times I forgot

Mama remember all my life
You showed me love, you sacrificed
Think of those young and early days
How I’ve changed
Along the way, along the way

And I know you believed
And I know you had dreams
And I’m sorry it took all this time to see
That I am where I am because of your truth
And I miss you, I miss you

Mama forgive the times you cried
Forgive me for not making right
All of the storms I may have caused
And I’ve been wrong
Dry your eyes, dry your eyes

‘Cause I know you believed
And I know you had dreams
And I’m sorry it took all this time to see
That I am where I am because of your truth
And I miss you, I miss you

Mama I hope this makes you smile
I hope you’re happy with my life
At peace with every choice I made
How I’ve changed
Along the way, along the way
‘Cause I know you believed in all of my dreams
And I owe it all to you, mama

Our last family photograph together, on my 26th birthday.

All that I am, or hope to be, I owe to my angel mother.”

Travel with no regrets

While 2019 has been a much quieter year for obvious reasons, I’ve still managed to see some of the world through my advocacy work – visiting five different countries. I’ve had the privilege of meeting and catching up with so many lovely friends and colleagues through what I do. As I enter 2020, the travel diary is going to become crazy! I could either sit at home feeling sorry for myself, or get out there and see the world while I can. Life is so short. I never want to look back thinking ‘if only’. When I do look back, I’ll be wanting to reminisce of the amazing things I’ve seen and experienced, and that’s entirely what I intend to do.

Live with no excuses, and travel with no regrets.

My 2019 travels have featured:

  • Czechia: Prague
  • Greece: Heraklion (Crete)
  • Netherlands: Amsterdam
  • Switzerland:  Zurich
  • USA: New Brunswick (NJ), New York City (NY)

There’s also a few from across the UK as well – we have lots of beautiful places on our very doorstep.

There are lots of places on the cards for 2020, including Dublin, Philadelphia, Chicago, Zurich, Bruges, Hamburg and Amsterdam. I’m still going for the 30 countries by 30 challenge too! I’ve ticked off 20 countries, so I’ve got to see another 10 before 2023… which certainly won’t be a problem!

Living and breathing advocacy

I live and breathe my ‘work’ – quite literally! My PhD and patient advocacy work have been on the back-burner since May, but that hasn’t stopped me from fighting for what we need, right now, for people of all ages living with health conditions. Throughout mum’s illness, I’ve had to fight, and fight, and fight for what she needed – and that should not be the case. I’m entering 2020 with even more fuel in the fire – determined to make positive changes to our world.

Do small things with great love.”

I’ll be starting out by pushing for local action, after experiencing the worrying reality of palliative and end-of-life care. I never want some of things we’ve experienced to happen to anybody else, and I won’t rest until things change.

If all had gone to plan, I should have completed and submitted my PhD thesis in December 2019, and would have been starting a new full-time job in January 2020. However, life doesn’t always go to plan – and as I’ve already said, some things are more important. Seeing as my PhD was already on hold, I’ve decided to leave it that way until February 2020, giving myself the time and space to grieve. The new plan is to get things done and dusted by summer, and be a Doctor (of philosophy that is) this time next year!

2019 has also seen me expand my work as a freelance consultant, specialising in patient advocacy, public involvement in research, and plain language summaries of research publications. I’ve been blessed to work with some amazing colleagues, and look forward to all that 2020 will bring.

There’s also the many courses, conferences and meetings that I’ve been to as well. While fewer than previous years for obvious reasons, there are still too many to mention, so here are some quick stats to give you a flavour of what’s been on the cards in 2019:

  • I’ve taken part in 18 courses;
  • I’ve worked on 16 research projects (plus other pieces of work);
  • I’ve participated in 17 conferences and health-related events;
  • I’ve joined 11 new research networks, organisations and/or committees;
  • I’ve hosted 4 tweet chats;
  • I’ve delivered 1 online course;
  • I’ve facilitated 6 workshops and presentation sessions;
  • I’ve delivered 1 lecture to child nursing students;
  • I’ve published 44 pieces of research, including 7 journal articles, 1 book chapter, 1 editorial article, 24 conference proceedings, 8 poster presentations and 3 technical reports;
  • I’ve delivered 4 oral presentations;
  • I’ve authored and/or have been mentioned in 23 external blogs, press releases and publications;
  • I’ve published 47 blog posts on my website!

I have continued to grow my website in 2019, and there’s plenty of ideas on the horizon for the 2020s. In 2019, 4,643 people visited www.simonstones.com, attracting 9,353 views from 102 countries.

I was thrilled to be included in the Disability Power List 100 2019 – an annual publication of the 100 most influential people with disabilities in the UK. To say that this was a shock is an understatement – and I’m blessed that mum was here to witness it.

I’ve continued as a trustee of Fibromyalgia Action UK, where I have been involved in a variety of activities, including overseeing internal and external research opportunities and partnerships. I also continued as a trustee and Secretary of RAiISE. I am blessed with my ‘RAiISE Family’, who really have become more like family than friends and colleagues. We have so much planned for 2020, taking our small charity to the next stage of its journey towards transforming experiences for young people living with invisible illnesses across the UK.

I also continued as a Board Member of two European organisations – the European Network for Children with Arthritis (ENCA) and the European Network of Fibromyalgia Associations (ENFA). In May 2019, during the General Assembly of ENFA, I was elected President, succeeding the marvellous Souzi Makri. My Presidency has been challenging in light of personal circumstances, but we’ve already achieved a great deal as we begin to evolve the organisation with ‘2020 vision’. I’m super excited to lead ENFA into the 2020s, supported by a fabulous Board and member organisations, tackling the biggest challenges facing the fibromyalgia community in Europe, and further afield.

I’ve continued to play an active role within the European League Against Rheumatism (EULAR) community. I continued my work as a member of the Emerging EULAR Network (EMEUNET) of young rheumatologists and researchers, sitting on the social media subgroup once again. 2019 also saw me step down and ‘retire’ from the EULAR Young PARE Working Group, which I was a member of from inception in 2015. I remain a member of the EULAR Study Group for Collaborative Research and the EULAR Patient Research Partner Network.

I was honoured to once again join the judging panel responsible for selecting the UK essay that will be shortlisted for the Edgar Stene Prize 2020, and I’ve also been quite active in reviewing a variety of manuscripts for different journals in 2019, as well as conference abstracts submitted for presentation to the Cochrane Colloquium 2019. I’ve continued to be a patient insight partner with Versus Arthritis too.

Alongside new additions in 2019, I’ve continued to work with all of the existing groups of which I am affiliated with! This includes the National Institute for Health Research (NIHR) as a patient research ambassador, The University of Manchester’s Centre for Musculoskeletal Research User Group as a virtual member, the European Young Person’s Advisory Group Network (eYPAGnet) and the International Children’s Advisory Network (iCAN)

After seven years as a member of the Paediatric Rheumatology Clinical Studies Group, where my patient advocacy journey began, I decided to step down from the group. I’ve been blessed to be part of this team, which has transformed my personal and professional life. I hope that my presence has been a positive influence on the paediatric rheumatology research agenda too.

All of these wonderful opportunities are of course enriched by so many wonderful friends and family along the way in 2019. I am so grateful and thankful for the people in my life.

Good things come to those who believe, better things come to those who are patient, and the best things come to those who don’t give up.”

You only have one chance at life

As we enter 2020 and a new decade, the most important things to do are to enjoy your life and be happy – it’s all that matters.

Wishing you a happy, healthy and wonderful 2020!

In memory of my darling mum, best friend and daily inspiration. You are loved beyond words, and missed beyond measure.

3 comments

  1. Such beautiful words about your mum Simon, and despite the pain of losing her you and dad will get through the hard times.

    You continue to inspire me, you truly are a wonderful man, fabulous to know you and hope we get to meet again this year.
    As an advocate peer you shine brightly like any star.

    Fluffie hugs for you and best wishes for you and your dad.

    Carole Sian 🦋💜🦋

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: