“If grief is the negative image of love and if it hurts just as much as it was worth then pain is a form of remembering” – author Julian Barnes, in conversation with Robert Peston.
This is a post I’ve been wanting to share for some time but I wasn’t quite sure how, or even if, I should write it. I hesitated as although I have written about loss and grief before, I have tried to do so in a positive voice, because I believe that is the best way I can honour Michael. This is a lot more honest and personal than anything else I have written and I’m not sure if this is something anyone will want to read, but I feel it is important for me to write this now, partly because I find writing so therapeutic and also because I am learning that modern society is horrendous at dealing with bereavement, especially in younger people, and if we don’t talk about it that will never change. I also often worry that I’ve become so used to being strong and putting on my brave face that I make all this seem easier than it is, or as if I’m coping better than I really am.
Something I am still finding incredibly difficult is having to speak from my perspective alone. Talking about what I feel and what I have lost seems insignificant when the biggest loss of all is Michael’s – the life he should have lived, the years he should have filled with his infectious personality and immense capacity for love. But I know I have to learn to talk in these terms, so here goes.
It’s been just over 7 months since Michael died and somehow I am surviving the days and tentatively taking steps into this new world without him. For anyone, the loss of a partner is life altering. Your entire future disappears; not just the love and companionship of the partner you have lost but also the hopes and dreams for the life you planned together. As we were at a very particular point in our lives when Michael was taken ill where everything we had been planning for was just about to happen, the extent of the loss was magnified.
Before Michael became ill, we were a young married couple and life was full of possibility. We met in Oxford, fell in love, moved to London together, got married, left London for new jobs in Nottingham, and were desperately saving to buy our first house and move back to my hometown of Newcastle-under-Lyme ready to start a family. Then in January 2014, the day before we were due to sign contracts for the purchase of our first house, Michael had a seizure which led to the discovery of a Grade 3 cancerous brain tumour, and our world was turned upside down.
Above all else Michael needed me and I had to be by his side, and so from that day I did not go back to work. We had to let go of the house we were buying while he focused on getting through surgery, and so we put our dreams on hold. At first we hoped it might just be for a few months while he recovered from the surgery and got through a gruelling course of radiotherapy. Michael and I both loved to plan, and had so far approached our life together with endless enthusiasm and ideas for how to make the most out of each chapter. This was to become an important coping mechanism for us, and so we began to adjust.
We took the leap of moving Michael’s care from Nottingham to Newcastle-under-Lyme so that we could still relocate as planned. We moved into a small rental property close to the hospital so we could easily walk to his treatment sessions each day. We unpacked our new home, filling it with happiness and colour. We embraced all of the extra time we now had together, even if it was mostly spent either at home while Michael rested or on tentative trips venturing little further than our own postcode. We scaled back our dreams and looked at smaller houses we might buy once he got through the treatment and we could both gradually go back to work. We talked about new careers and options, trying to embrace the silver lining of this life altering change, and we clung on to hope.
But the treatment didn’t work and the side effects made Michael incredibly poorly, so a few months turned into a year, with more surgery and chemotherapy planned. Again we tried to adapt to the change. We moved to another rental house within walking distance of my parents, family and oldest friends so we had the support we needed on our doorstep. We stopped talking about buying houses or trying new careers because it all seemed too painful, but the dreams were still there in our hearts and our secret shared Pinterest boards. We cherished every moment and tried to continue making the best of the time we had. And we hoped.
At the beginning of 2016 Michael became more unwell and we were told there was nothing more we could do. Seven weeks later I lost the love of my life, the other half of my whole. Suddenly there was no more hope because we couldn’t save him, and there was never going to be a silver lining.
I moved out of our rented house and back home with my parents, not just out of necessity but also choice. I am fortunate to be incredibly close with my parents and they were by our side every step of the way from the moment Michael was first taken ill, so it was a natural decision. I don’t want to live alone now and I couldn’t function without my Mum and Dad’s love and support, and their loss was just as significant as they loved Michael deeply, so now we look after each other while we find our way in these dark days. I decided to take some time out rather than trying to go back to my previous career, largely because I was a Solicitor specialising in preparing Wills and dealing with the administration of estates when someone dies, which I obviously couldn’t face now. My job also feels like part of a life that doesn’t really belong to me anymore.
Despite not working, in the months that have passed I have kept myself busy. I packed up and moved out of our house, dealt with all of the painful practicalities of loss and decorated and settled into my bedroom at my new/old home with my Mum & Dad. I discovered some artists’ studios available in Stoke and, feeling like trying something new, I signed up for a creative space to share with my Mum. I set up our beautiful studio with the hope that once I feel ready we might start hosting fun creative workshops in the space, but until then as a place to take time out from the world and heal. I’ve learned dressmaking and made 36 dresses and 2 jumpsuits, and started to learn pattern drafting with a view to potentially selling the dresses I make.
Most significantly, I have set up a fund with The Brain Tumour Charity in Michael’s name to raise money for brain tumour research which is drastically underfunded and has little public awareness, then created and launched a range of fundraising products inspired by my Michael, organised a fundraising auction, and took part in two wonderfully successful fundraising events organised by Michael’s friends, so that in total we have already raised over £10,000. So you could say I’ve been busy, and all at a time when I am in the murky depths of grief and it takes most of my energy just to get out of bed each morning.
I’m not saying any of this to blow my own trumpet, but more as a small acknowledgement of what I have achieved at the hardest time in my life, and I guess a justification for why I haven’t just gone back to work. I know that my life is different to most people my age (29, in case you were wondering). I knew it would be from the moment a doctor in A&E took me into a side room to show me the MRI scan revealing a brain tumour. I’ve experienced the extremes of life in a way most people will, fortunately, never understand and I am a very different person because of it. To borrow from the brilliant writer Nora McInerny Purmort (who I have raved about before as everything she has written about her own loss has helped me immensely):
“Yes you are thankful that you had it at all, that you were loved and seen, that you lived your vows fully, that you witnessed life and suffering and death while all your peers were like, I don’t know what you were doing but probably just something more normal and sometimes hi I hate you for that I can’t help it I’m sorry I’m in therapy. Sad isn’t the right word. It’s bigger than that, so much bigger.”
So now I’m trying to learn how to acknowledge the difference, and try to cope with the anger and jealousy I often feel for anyone who gets to live the life I should have had. What I wanted was a calm but happy life, with a husband and a family, a decent job, a nice house. That is not going to be my life now. There are no more rules to follow and it’s time for me to tentatively start treading my own path. I am determined that Michael’s legacy will be what shapes my life rather than ruins it. I am fighting every day to try and establish an existence holding on to what I can from our plans for our life together, in so far as is possible now I have to go it alone. And most importantly I have a huge responsibility of living for the both of us now. That’s what helps me to take on each day even when it all feels too much.
Whilst I am starting to rebuild my life, I am not trying to “move on”. I am learning that Michael’s death isn’t something I will ever get over, and nor should I, and that grief for the loss of my soulmate will become part of who I am just as much as his love is.
When you lose someone, you are often routinely offered platitudes and clichéd phrases about time being a healer and how someday you will move on. In most cases such comments are well meaning and really no-one’s fault – as a society we are terrible at talking about grief, and most of us instinctively want to say something cheering and positive in the face of sadness. Yet I have found this approach to be unhelpful and incredibly difficult when you are talking to someone who is bereaved. You cannot fix the problem or cure their grief and chances are they don’t want you to. Michael and I loved each other so intensely that it would be completely wrong for me to do anything other than feel this pain. What I need is for people to just be there experiencing it with me, and trusting me to let it shape the type of person I want to become. You don’t have to make it better. You just have to be there, and not look away. The best anyone can do is to show up, sometimes to help me to escape it or other times to just be at my side in the darkness. As Megan Devine wrote in the Huffington Post, “when we don’t see grief as a problem to be solved, but instead as an experience to be supported, loved, and witnessed — then we can really talk about what helps.”
So what comes next? Right now, I’m just trying to take my time, and every day is still a challenge. I know that I can’t yet give all of my creative ideas for the future quite the attention they deserve, so for now our studio will continue to be a place to while away a calm and peaceful afternoon at the sewing machine, and hope that perhaps next year I might be ready to give it a go. I’m also having a bit of a love/hate relationship with the internet at times. You all know how much I love the Instagram community as I’ve gained so much friendship and support from it, but it can be intense, overwhelming and hard to keep up with, so I’m working on finding a better balance.
I’m also going to be taking a little bit of a slower pace with fundraising for The Michael Barry Fund over the next few months. Setting everything up and turning my initial fundraising ideas into a reality has taken a lot of energy. Whilst the charity work is incredibly important to me and something I am making a lifelong commitment to, and a huge part of what has saved me these past few months, I’m realising that I also need to take a little more time to figure out my own life in the midst of it all. But I have so many more ideas up my sleeve once I’ve had a little rest, and I know our friends and family will be keeping up the sterling fundraising in the meantime. I’ll also be continuing to sell my Tip Top wares through Etsy and occasionally in real life too.
I’m sure this has been an incredibly heavy going read, and I know that my little blog is usually a place where people might like to stumble upon pretty pictures of dresses I’ve made. But writing about Michael and our story, both the magnificence of the love we shared and the horror of the illness which took him from me, is really an inseparable part of all this. It’s the reason I’m writing this blog and trying something new rather than sitting behind a desk in my old life, and I hope this gives a little more context and understanding, so please indulge the interruption.