Finding my feet

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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.

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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.

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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.

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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.

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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.

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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.

Lucy x

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23 thoughts on “Finding my feet

  1. Laura potter says:

    What an absolutely beautiful post to read. I can’t feel your pain as I haven’t lost my partner and no two grievances are the same but I too am not living the life I dreamed, Instagram is a love hate relationship. To read such an honest and open post is so brave and refreshing to read

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  2. captaincharley says:

    Beautifully written. I lost my best friend back in May to a freak bicycle accident. Although my loss is not quite the same as losing a partner, your words have still spoken to me and given me inspiration.

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  3. Mary kay says:

    The hurt and pain is a million times more than any of us can imagine. Hopes and dreams are shattered and gone. As you wrote there is no beginning or end. We do not want to let go of a loved one. You are doing everything right. You are navigating the grief with your writing, sewing and creativity. You are learning how to keep moving and we are so happy for that. Lots of hugs.

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  4. art2inspireahl says:

    Thank you courageously open sharing of this beautifully written post which will help others who are grieving .Sending you much love and thoughts for your continuing journey of life.

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  5. Staci says:

    Beautifully stated and courageously handled. Loss of life and of love doesn’t have an expiration date. Every new day is a next step and if all we can do is continue to breathe in and breathe out, then we are golden. My thoughts and prayers are with you. Thank you so very much for sharing.

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  6. romysews says:

    I’m so sorry for your loss and have to admit that I am awful and awkward at talking about death and grief, so it’s helpful to read your post, even if it makes me terribly sad at the unfairness of it. I’m also glad that you’ve raised awareness of the Brain Tumour Charity; my nanna died of a brain tumour when I was 5 so I don’t really remember her, and sometimes miss the times we could’ve had. I’ll definitely keep an eye out for future fundraising events 🙂

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  7. Rachael says:

    I’ve been reading your blog for a few weeks now, ever since coming across your lovely studio space featured on Tilly & the Buttons’ blog. My heart breaks for you, for what you’ve gone through when you should be planning for that future you’ve so eloquently written about in this post. We’re the same age and I’m married too – reading your blog posts about your husband have made me more conscious of appreciating the time my husband and I have together. I’m sure you don’t wish to hear that the way you’re choosing to face this is inspiring, but it is; you’re choosing to pursue happiness and making his memory have a wonderful impact in your fundraising.

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  8. Lynsey says:

    Amazing post, you have have written from your heart and made me think of grief in a different way. Life can be shit and damn right cruel, you are dealing with your grief in your own way and I’m sure Michel would be incredibly proud of what you have achieved and how far you’ve come. By bringing awareness to brain tumours, the charity and grief you are helping so many people. By concentrating on the next thing, one at a time you will continue to carve out your next chapter, the love and support you are getting will help to make each one the best it can be. Follow your heart, take classes, make things, do what you love and make each new chapter different. I think you are going to do some lovely and amazing things and I would love to come along for the ride. (Ps since having my bag (which I use all the time!!) Tip top like soda pop has became a fav saying in house) lots of love to you and your family xx

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  9. Cat says:

    ‘You just have to be there and not look away.’ We are indeed not good at dealing with grief. This is so helpful, so important to talk about and it is my favourite of your blog posts. Kindest thoughts, prayers and best wishes.

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  10. Sarah says:

    I’m glad you write about Michael. I agree that grief isn’t a problem but a necessary experience and you deserve all the love and support you need and more.

    I’m an ocean away but I’m showing up here. Sending you hugs.

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  11. shirleyrainbow says:

    Grieving and loss are definitely topics we struggle to talk about. My best friend died nearly ten years ago from cancer and I still can hardly speak about it, I just can’t think of what to say. No one knows what to say back! Looking after yourself at this time is so important and it’s easy to get caught in a whirl of activity. I hope you find the balance and can continue to share how you are doing. Big hugs to you xxxx

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  12. Kezzie says:

    I cried with you here. It is so unfair that you lost the love of your life and no, that grief will never die and no one can know it or be able to placate it in any way- only Michael being here could do that. But we can care and be here and listen when you want to write about it even if we can do nothing. You are an inspiration and I know you will find the way and the new path your life has taken, no matter how long it takes.xx

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  13. Monique says:

    Dear Lucy, your blogpost keeps me thinking of you and Michael all day. Cried over it, too. Life can be so unfair. I wish we all are more thoughtful and caring for the people around us. You enlighten me by your writing and by the beautiful pictures. You are such an inspiring woman in so many different ways. Your perspective and your wisdom, your flair and ….lust for smiles and color light up the room, too.
    Just keep telling us what you want to share. We are here. We care and we ‘listen’ to you. We support you from everywhere in this world. We even cry with you and smile from time to time.

    Monique, from the Netherlands.

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  14. Amanda says:

    Hi Lucy. I’ve only just read this post. In a way I’m glad I didn’t read it before I met you, because talking about these things face to face was such a healing and soothing experience. You’re are in a place that I’m heading towards and seeing how you are dealing with it, the ways you’ve decided to cope gave me the first real hope I’ve felt since Jenny was diagnosed. All I know is that I’m connected to you and your Mum now. It seems meant to be and we can offer each other the bits of support and understanding that out battered hearts allow and out weary bodies can cope with. I’m so glad you’re both in my life. My new friends xxxxx

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  15. @rachelcole226 says:

    I came across this post by searching for the Brain Tumour Charity on WordPress – I haven’t lost a husband to a Brain Tumour but my brother died from one just over ten years ago. I read your post, which is incredibly honest and eloquent. I hope you don’t mind me posting but so much resonated with me: the empty platitudes that people said to me and my parents brought home how most people are terrible at talking to bereaved. Some feel the need to say something and a fair few stay away for fear of saying the wrong thing or as if grief or loss is contagious. The most helpful thing anyone said to me about grief at the time is that it’s like you’ve lost a leg and you’ll never get it back nor “get over it”. Although you might get a prosthetic leg and learn to walk again, and to the outside world your limp will become less obvious so you look like you’re whole, you will always feel the loss. I don’t know if you find that remotely helpful but that has stayed with me over the last decade. Take care. Xx

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    • smileandmake says:

      Thank you so much for your comment. I’m so sorry for your loss. The analogy of the lost leg really does help, and it’s not something I’ve heard before. Thank you x

      Liked by 1 person

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