One of the most important conversations I had with my brother was shortly before he died.
We spoke about our shared childhood, our grief and our plans to make our futures (and those of our children) much, much better. I had been though a bad time that summer and he implicitly understood.
He didn’t make it.
At the time of his death, I was on a huge dose of medicine to cope with my MS symptoms, mostly nerve pain. After he died, as the pain was so great, I decided to come off all my MS symptom medications; after all, what did it matter when grief was consuming me. I talked to my fabulous neurologist and we devised a tapering plan over six months.
I did it in two weeks – I do not recommend it – but my pain was so massive I didn’t feel it mattered, I would cope.
I went through the detox, I coped and friends rallied round, as they still do, insomnia being one of the lingering effects to deal with.
Stopping medication – I was on 600mg Pregabalin daily, as well as two other meds – made me cry. I cried over a McDonald’s breakfast. I cried about a Wateraid advert. I cried over everything.
But mostly, I cried about my brother.
He was incredible, always wanting to help those least able to shout in our society. He cared passionately about the underdog and championed their cause. He made so many friends, I lose track. Anyone at his funeral would bear witness to this.
We did many things over the years – he teased me, he goaded me, he laughed. But he always, always had my back. He was so proud I was taking my PhD and looked forward to my graduation as he knew how hard I had fought to get this far. We talked about him starting a blog to share his experiences of helping others.
And then he died.
The pain is indescribable. He was so vibrant, so alive. So here.
And now he is not.
As a 58 year old woman that has been coping with MS for 50 years, I have been following your blogs for many years. Your honesty and strength in your battles has given me inspiration and hope. Although, your recent blog concerns me. I’m so sorry for the loss of your brother, and can only image the heart wrenching pain you are going through. Grief is a miserable emotion that impacts our lives in so many ways. I hope that you will consider seeing a grief counselor and/or a grief support group. Letting the grief affect your own health…by stopping your much needed meds…cannot be healthy for you, medically or emotionally. Please think about the loved ones around you, especially The Teenager, they love you, they need you…
Sending hugs, love and prayers. God Bless.
Thank you! I have signed up to see a grief counsellor, just waiting for an appointment. I’ve had incredible support from my friends and you guys through Twitter.
I felt the meds were dragging me down and making me too numb to everything and I do feel a lot better for it. I’m trying natural supplements and meditation. I need to get through this! My absolute focus is Christopher and in a way it has been a good thing that he has been at University this term, as I have had a real chance to grieve alone. I can’t wait to have him back for Christmas – and I’m planning to make it as happy and joyful as possible. The last thing my brother would have wanted is for us to stay in this pain forever XX
It so great to see that you’ve posted I’ve really missed your blogs. I know that you are going through a very tough time and all my thoughts are with you. Take care.
Thanks Bev! I’ve missed writing but so hard to know what to say. X
Having lost my mum almost 40 years ago, I can honestly tell you that you never ever get over it. It’s just another new normal. The Kuubler Ross grief level thing is not the only one. You don’t necessarily move through all 5 stages, & almost certainly not in the nice order that she describes. You will always grieve your brother, some times of the year & even of life are harder. But the advice to see someone or join one of those groups that the undertaker run after a few months the is a good one. They didn’t exist when mum died, but I have friends who have made friends at those groups. It’s a taboo that our society has sanitised away. He gentle with yourself, normal grieving takes 2 years, sudden death is one of the harder ones to learn to live with. But please keep posting, & being so honest, few of us are so honest about how it really feels, me or grief.
Thank you so much for sharing your story 🙂 And for talking about being honest about grief. It will inevitably touch as all at some point, so why we don’t talk about it more, I have no idea! You’re right, it’s a taboo and something almost shameful to talk about, especially when it is sudden.
For me, the grieving has been back and forwards, totally no set stages at all! The smallest thing can set me off. We don’t have the radio on at work right now as I’m finding the Christmas songs hard. I try to find some kind of joy in every day, no matter how little it might be. X
I’m so glad to see you back! At first I thought it was because you were suffering with a relapse brought on by your brothers passing, then I thought you had stopped blogging altogether and deleted your name from my tool bar. Happy to say that you are now reinstated.
I can shed tears at the drop of a hat, for no reason. Hate it when it happens in company although my daughter, her partner and my eldest grand-daughter are used to it now and make a joke of it, which brings a smile to my face.
Although I’m not a professional I think counselling is a good idea for your grief.
I just didn’t really know how to put everything into words and also didn’t want to depress people too much, but everyone has been amazingly kind and it’s good to talk about death, especially sudden death, I think.
Counselling is definitely a good idea, and I’m so grateful to my Uni tutor with putting me in touch with the Uni services.
It’s a tough time, but am determined to create something good out of this, whether it’s being open about mental health and grieving or urging men in particular to speak out before it’s too late. X
My Dad died suddenly and unexpectedly in his sleep one night when he was 46 years old. He hadn’t been ill nor was there anything ‘wrong’ with him. The post mortem revealed that he died from a heart attack which was his only one. To say it was a shock is an understatement. There wasn’t any counselling offered or available then, so we had to deal with his passing however we could. This was in 1963 and it is only the last ten years or so when I realised my eyes don’t water any more when I think or talk of him.
This is why I suggested you go to counselling if you can, so that you can come to terms with his passing. You will still grieve and be angry that he died too young and be aware of everything he is missing out on, but it may make his going a bit less raw for you so you can come to terms with it.
I’m so sorry to hear this Joan. Sudden death really is horrendously cruel.
I remember when my dad died back in the late 70’s, none of us kids were offered any kind of counselling at all, it didn’t seem to be the done thing. I wish we all had, looking back. At least my brother’s children have a lot more support available to them. X
Dear stumbling
So sorry to hear about your brother – I too was wondering if you’d stopped the bloggs but I was ‘hacked’ and had a lot of problems getting sorted so thought maybe you’d just dropped off my iPad!
So pleased to find you again and send love and best wishes to you and your wonderful ex teenager and hope you have a memorable and happy Christmas. The hurt you are feeling never goes away but does become bearable.
Val x
Hi there, thank you so much for your message!
We’re having a very quiet Christmas this year, changing things around slightly to make it different.
Hoping to be blogging again in the New Year! Have a wonderful Christmas 🙂 XX