It’s tough out there right now. As I write this, and in the U.K. alone, perhaps 50,000 family and friends, (more or less 20,000, because we’re in both a guessing game and watching political football), are mourning a loved one. Gone to a virus none of us had heard of just a few distant months ago.
In that same brief, surreal period, others have lost equally loved ones to something else. Accidents, scary illnesses, and old age? Well, they trample on, regardless of what makes the headlines.
And very few of us dealing with the mounting waves of shock, bewilderment and fear have been allowed to manage the grief process. No proper funerals with cucumber sandwiches and sherry. No final, bitter-sweet gatherings. No hugs. Tears via Zoom.
There’s a much-used ‘five stages of grief’ model to describe what we tend to go through: Denial, anger, bargaining, depression and acceptance.There’s a ‘seven stages’ version too I believe. We all experience grief in different ways, and definitely not always in the same order. But it’s a good start to help make sense of the embuggerment that is total loss. Here’s a brief explanation with some suitable plinky plonky music… https://youtu.be/Q2BJsOQypuw
It feels to me like the whole world, more or less, is in a world of pain and grief right now. Not just at the hundreds of thousands of lost souls to Covid. Or to anything else. But at lost livelihoods, lost businesses, lost pastimes, lost freedoms. Lost senses of self. And into that grief is mixed a rising anxiety for the future. In so many ways, a diagnosis with MS is not unlike the Covid experience we’re collectively stumbling through. Something has been stripped away, and we’re reeling.
MSers… We’ve got this, we’re ok.
I’ve known three intense ‘Griefdoms’ in my life:
1. The first feels a bit shallow in relative terms, but in 1999, we lost everything we owned in an electrical fire. A loved-up future Mrs W and I had recently moved in together in a Parisian apartment. We came home one evening to a burnt out shell. We were left with the clothes we were wearing, and some geraniums we had bought for the window boxes.
Any acrid burned smell brings memories flooding back, but we dealt with that one ok as a team. Mrs W went headlong Into ‘denial’ mode, throwing herself into work and even taking a business trip to LA while probably in full-on PTSD. After some initial tears, I went into the ‘Bargaining’ phase, spending every night after work sorting through debris to produce a chunky insurance claim.
And life moved on. Just without our joint CD collection – melted into a sorry heap – and some charred or destroyed photos. Those were the only two things we were genuinely sad about after getting the hang of losing knickers, sofas and fridges.
2. My Multiple Sclerosis diagnosis. A hazy, prolonged shock at the beginning, with lots of denial to get me through the first few years. I regret that phase in a way, because I should have gone exercise-mad to keep myself as mobile as possible, for as long as possible.
Nobody told me that, and I’m not even sure the MS gurus at the time were convinced of the importance of exercise for our long-term prognosis. Hey ho. Shut up Mark, don’t look back…
I’m thoroughly in the acceptance phase now. Coping with Multiple Sclerosis day to day. Enjoying life. Seeking new challenges. Wearing silly clothes. Campaigning. Exercising. Eating a healthy diet. Plus naughty cake and naughtier Prosecco. Oops.
I am still knocked back into different grief ‘stages’ when a new symptom pops up. Or when I see a Facebook memory, yanking me back to healthier times. Or suddenly realising, (what’s the opposite of Eureka?) that I can’t do something any more… I dip into counselling every couple of years to keep myself on a level-ish keel. It’s ok. I’m ok.
MSers, we’re ok.
3. My sister my sister my sister. No longer with us. Gosh, it’s been three years and whilst there are now whole days I can forget that she’s gone, it can all come rushing back so quickly and painfully. The loss can still be utterly raw. I wrote about it when the loss was still fresh. https://onemanandhiscatheters.com/2017/04/grief-is-like-a-box-of-chocolates/ .
Based on my experience losing Vicky, I think – though admittedly only three years in – that I’m all signed up to the view that grief never really goes away. It just becomes a part of you. You learn to deal with it. I have no plans to forget my sis anyway, no plans to let her fade away.
And MS, I guess, whether I like it or not, (I don’t!) is also not gonna go away. I think MSers are probably rather well-trained to cope with the Covid ‘phenomenon’. And I’m afraid an awful lot of disabled people are well-versed in isolation and services being deprived.
MSers, disabled friends, we’re ok. We’ve got this.
I’ve come across Tom Hanks’ response to life right now. He’s used it to refer to current American politics. And to the experience of Covid. ‘This too, shall pass’ he says, borrowing what is apparently an ancient Persian saying: https://edition.cnn.com/2020/03/23/entertainment/tom-hank-rita-wilson-coronavirus-feeling-better-trnd/index.html
I do believe that Covid too, shall pass. Not as quickly as our shock at the Paris fire. But quicker than my sibling grief. And definitely quicker than my here-to-stay Multiple Sclerosis.
It may not feel like it right now, but we’re gonna be ok…
My word – THANK YOU for this Mark Webb!
I’ve had numerous ‘Griefdoms’ (great word, BTW) – certainly not limited to my MS diagnosis, as well. 10+ years post-DX I fully concur with every beautifully stated point you make.
If living with multiple sclerosis has taught me anything – it’s that I’m so much stronger and more resourceful than I might have ever known (or needed) myself to be. And that’s something I hope everyone knows about THEMselves, as well (MS or not – and my hope for them is the ‘or not’ part).
You ARE stronger than you think. This (pandemic) will pass. We WILL be ok. We will.
Everybody (to borrow a little from The Blues Brothers 😉
Thank you Mark for the positive reminder (and the great read – you’re a lovely writer).
Saw your comment on LinkedIn too and very much appreciate it. This was one of the hardest blogs I have had to write. Not in the emotional sense, but in trying to get a balance when I knew it might affect people.
Glad you took something positive from it and I’ve had some lovely feedback…
Mark this brought tears to my eyes. Beautifully written and life is often like this, but I was listening to an interview with a lady who has a podcast, called the Grief podcast, you might find it interesting. Grief around the loss of the life you may have had if you didn’t have a medical condition is one I’m familiar with but you’re right, acceptance and hope are so important. Always so positive. Can’t wait to catch up after we are allowed out again.
Sorry Ruth, I see you posted this ages ago, oops. So focused on fundraising I have neglected my blog.
Hope they were good tears. I wrote this in the middle of binge-watching ‘After Life’, which also made me cry regularly whilst being uplifting… I struggle with Ricky Gervais sometimes, but on this topic he has been amazing.
There is definately a lot to learn about this issue. I like all of the points you made. Aundrea Milton Adams
Thank you! I will plough on…
Major thankies for the blog article.Really thank you! Great. Harley Clyburn
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Thank you. I think
Thanks-a-mundo for the blog post. Want more. Nick Lamoore
Will do my best,,,
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