My journey with severe grief, and I hope this can help even just one person.

[stefan]

My journey with severe grief.

My mistake.

Boy, did I get “grief” wrong.

After my wife died I was completely flat. There were things to do and I got through them. Every morning when I woke up I would actively remember Louisa, say a little hello; perhaps it was a prayer, I’m not sure but I said it. I said to myself “live forward, remember backwards” and I got on as best I could. I read about grief, got its measure, and “got on with it”.

I felt like there was a grey cloud seeping through me and around me that sapped my energy and positivity but actually it was getting a bit lighter every day. I really was beginning to see my new life unfold before me and whilst I had to work at it I could remain quite positive and vital. I was still coming to grips with the horrors that occur during cancer and a longish case of multiple organ failure, but even these I felt like I was managing. My wife died on the 31st May 2023 and by the middle of July I had taken myself away for 5 weeks to be amongst far flung friends. By October I was home again and “feeling pretty good considering, thanks”.

Then a lot of things happened at once. Some good, some very good. By early November I could imagine myself perhaps not single in the medium-term, I could see myself travelling and generally doing what suited me. I was enjoying my days again.

Hey, that’s not right.

I should have guessed something was up in mid-November when my sleep began to get stolen. If I woke up that was it. I could sleep a few hours during the day but I wouldn’t get back to sleep that night. I tried, but I couldn’t. Perhaps a week later the dreams started, re-running events from our last four months together.; medical, emotional; but filtering deeper emotional stuff like arguments with and between family, disparaging comments regarding my caring, and on and on.

“What, excuse me? Did you just say, ‘but filtering deeper emotional stuff like arguments with family, disparaging comments regarding my caring?’ My alter ego.

“Yes, why?” That’s me this time.

My alter ego again; “Well, because everyone said you did an amazing job. Everyone. Family, hospital staff, Louisa said thank you and squeezed your hand just a day before she died.”

“Yeah,” I say, “But in that dream J was saying how she was getting too much Ordine and that would kill her not the cancer. The inference was I was killing Louisa (break down to weeping and crying deep inside), I had it come back in my dream. Its all coming back in my dreams and I remember it”.

“But that was J’s grief talking” screams my alter ego.

But it is no good, common sense literally cannot prevail. More dreams more negatives. Sometimes waking me up minutes after I get to sleep. I would get under an hour’s sleep in 24 hours, but I kept working – the cycle would “break”, surely. It didn’t.

It got worse. Over a fortnight I was dragged into hell. My hands were shaking, my head was screaming at me; mad conversations and erratic behaviours – even to me. Eat, feel sick, maybe vomit; repeat. Hot. Sweaty. Freezing. Cool. Sweating. Dry skin, boiling. Shivering. I collapsed three times in a couple of weeks and found myself lying on the ground, twice the cat and dog trying to do anything that helped. I don’t even know what caused me to collapse. My heart broke. You might be out there reading this with a broken heart. It is real.

Constant cramps. Spasms in my chest that doubled me over and knocked the wind out of me. Many times in a row, hitting and quaking my body until I was completely out of air.

And I suppose I was unlucky as a number of personal relationships collapsed; I didn’t need that, especially then. I didn’t need her friends (in a small town) to walk away from me when we saw each other or after a brief greeting. It was worse because it was obvious. It was their grief; but I didn’t need it.

Favourite Uncle dies. Brother has huge aneurysm on his aorta and the operation has to wait. First Christmas… And more.

And the dreams got worse reaching far back into the years and our history with illness.

Feeling very, very isolated. Lots of phone calls to friends (thank you all!!), but very alone, very isolated.

I’ve had enough, let me go too!

I wanted to be gone. “Why am I being punished for losing my partner. I nursed her, I looked after her, I gave her every ounce of energy I had and now you ******** Gods punish me more!!! How dare you. Just come and kill me then you cowardly ******.” I was in a gorge nobody sees and nobody visits. Nobody heard me screaming at the sky.

(And I was angry about how they treated Louisa. They, those Gods I railed at, had gone one step too far with her disease and I had to lie like no-one’s business to stop her realising.)

How did I get to there. And then how did I get to here from there? It wasn’t that long ago, just weeks.

A fresh breeze.

I felt it lift. Like when you have heavy cold for a week then one afternoon you start to feel better and by the following midday you are almost better. I wasn’t almost better but the next morning my chest didn’t ache, my breath wasn’t laboured and my hands weren’t shaking. I probably got four or five hours sleep. I had breakfast and didn’t even feel sick. In my case three days later I felt a control and balance that had been absent for maybe eight to ten weeks. A fresh breeze was blowing all around me.

What I didn’t know.

But actually, that’s not what caused the grief to lift. That grief event had run its course perhaps? I don’t know; but I wasn’t doing anything different from a fortnight before when it didn’t lift so its probably something like that.
Huh?

There are neurons (brain cells) in your heart that only react to a certain sort of grief. Then they make your heart feel like it is breaking. They can permanently damage your heart if the grief goes on too long. Likewise, the gut; neurons in your gut can make you feel or be sick constantly, they mess with your digestion too. But lack of sleep is one of grief’s most effective weapons. The shaking hands, the mania, the obsessiveness. I’m not sure where the crying comes from, the head or the heart. Your chemical drivers are changing too, so that you have a chemical profile very much like a person suffering depression but different.

No energy or massive energy swings, sore muscles, no strength. My vision was very poor and even with my reading glasses (which I wasn’t using all that often a couple of weeks before) I had trouble reading. My long focus wasn’t much different and I constantly used my driving glasses. My tinitus was so loud at times I had trouble hearing conversations. I couldn’t do Sudoku’s or play Wordle. Chess simply didn’t make sense. My brain wasn’t working even close to what it normally does. I fear as I write that is still the case.

So what; why?

I had learnt to forget the worst things in Louisa’s and my world leading up to her death. Maybe even forgetting had become habitual.

The first diagnosis of cancer was weeks after our honeymoon. She was sick most of the honeymoon but no-one could pin down why. The hysterectomy damaged the ovaries and a subsequent surgery failed to remove them so her hormone production was, at best, erratic and insufficient ever after.

Two years later the thyroid was removed. (The Surgeon, “You know, you are going to die of cancer and it could be quite soon. Enjoy yourselves”.) Cancer again. Radiation this time. Her body couldn’t convert synthetic T3 to T4, the main chemicals the thyroid gland produces, and nobody could or was willing to do anything about it. Eventually I found Dr B and she survived, in his words “by weeks”. That was 18 months to two years after the surgery.

Leukaemia. No markers, “but the blood tests say Leukaemia.”. Graves disease. Blood pressure swings. Helicopter on standby. Months dragged into years. First name terms at the hospital; “Bring her down”, any time of the day or night. We kept doing what we loved but in ever decreasing quantities.

2019 and a fast moving highly aggressive breast cancer. Five weeks after getting a lovely new dog, a maximum of ten weeks after our first proper holiday in years. Chemo – oh, Louisa had Multiple Chemical Sensitivity so chemo was really dangerous. 9 months of chemo. Radiation. Went wrong again so lots and lots of pain. January 23 2023 metastasis of breast cancer. Over 100 points of cancer larger than 3mm. Many over 2cm. Death four months and three days later.

Hey!!!

Why didn’t anyone tell me – why isn’t it on the Net… That history of mine; that history of yours – your grief is that. All of it! Twelve years of stress, horror, fear, support, of every ounce of my energy going to the brightest light in my life? Of love, of laughter… That is what my grief feasted on.

Once you find the right Science on the Net and you have similar to my history you find out you are going to get this level of grief. Why didn’t anyone tell me? For warned is for armed! This is not “feeling depressed”. This is savage, nasty, vindictive. This grief is out to get you; at least that’s how it feels when you are the sufferer.

Well, feast it did, and will again. I hope I can spot it coming next time and at least be a little prepared. According to one source I am likely to have two more extreme episodes of grief with periods of more regular (grey cloud) grief dropped in there too. But there will be many, many more good days coming my way and those good days will become more and more frequent.

I had thought that caring for Louisa and making her journey as safe and as meaningful for her as I could help to make it was the hardest thing I had ever done in my life and would ever do in my life. It wasn’t. The grief, the illness that is grief, which descended on me six months after she died shattered me. It reached deep into me; it made me ache, convulse, it stole my thoughts and my feelings, it stole my beliefs, it destroyed time itself as days just inched by; and it very nearly stole my spirit.

Then it lifted.

But then it lifted.

What doesn’t change?

I still have to re-invent my life. I still have to find purpose and fill in the moments of pleasure that were once filled with my beautiful Louisa. I still crave touch; a kiss, a hug, a brush of the hands as we passed each other in the garden, holding hands on a walk. I am scared I will never experience touch, love and that deep interconnectedness with another again; and I am desperate to, every minute of every day. But the grief that made me want to be dead? It is finished, over; it has passed.

I’m writing this two weeks after screaming at a gorge because the (could it be called “clinical”) grief has passed. The mental and physical illness that is severe grief; the grief you get when you lose the most important person in your life; that has lifted. It has shaken me, thrown me off balance, badly damaged some relationships – some of which may not ever recover – it has left me a bit stunned but it has left me. And for all the world it has left me exactly where I was when it descended upon me.

A fortnight after screaming at a gorge I am researching where I want to live, what towns offer me the lifestyle I want to have as a single person. Music as a musician, dancing, evening sport, a surf beach, canoeing, accessible nice bush, bicycle, motorcycle and walking clubs, or do I stay here.

Grief is an illness. It is very, very hard. And yes, I believe it does punish you for losing a loved one; grief punishes you for being punished. But grief can pass. And when it lifts you change again. You become more like the person you knew; the person you and the one you loved would recognise. The challenges are still there when you come out of it but you will better be able to face them then.

• This topic was modified 2 months, 2 weeks ago by onlinecommunity.
• This topic was modified 2 months, 2 weeks ago by onlinecommunity.

Topic

[vmbetelgeuse]

Hi Stefan,

I’m truly sorry to hear about your profound loss and the emotional journey you’ve been on. Grief is very much a complex and unpredictable companion, isn’t it? It doesn’t follow a linear path, and sometimes it catches us off guard, even when we think we’re managing.

Your approach of “live forward, remember backwards” is both sad and wise. It’s a delicate balance, honoring the past while allowing yourself to step into a new chapter. The grey cloud you described, gradually lightening, speaks to the resilience within you. It’s remarkable how our hearts find ways to heal, even when the weight seems insurmountable.

Normalising grief is essential. It’s not a sign of weakness; it’s a testament to the depth of love and connection we shared with those we’ve lost. Your willingness to share your journey here contributes to that normalisation. Others who read your words may find solace, knowing they’re not alone in their feelings.

And then, as life often does, it threw you a curveball. The stolen sleep, the dreams—those haunting echoes of moments shared and emotions felt. It’s as if grief decided to revisit, to remind you that healing isn’t linear. It’s okay to feel confused, to question why. You’re navigating uncharted waters, my friend.

Hope lies in the fact that you’ve already proven your resilience. You’ve faced unimaginable pain and still found moments of joy, even if they were fleeting. As you move forward, consider continued support — a compassionate listener, your grief counselor, or a community of others who’ve walked this path. They can offer insights, validation, and a reminder that healing isn’t a race, it’s a journey.

Remember, you’re not alone, and there’s strength in vulnerability. Your heart, though scarred, still beats with purpose. And perhaps, in those quiet moments, when the dreams visit, you’ll find fragments of healing too.

Thank you for sharing your story. May your days continue to hold both sorrow and unexpected rays of light.

• This reply was modified 2 months, 2 weeks ago by onlinecommunity.

[stefan]

Hi vmbetelgeuse,

Thankyou for the reply. It was beautifully heartfelt and written. I truly hope that by expressing my journey it may help others.

Stefan

[vmbetelgeuse]

Hi @stefan,

I hope you are travelling well.

Thank you for your kind words. I’m glad my response resonated with you. Sharing our journeys can indeed be a powerful way to connect with others and offer support. I hope your openness surrounding grief continues to inspire and uplift those who read your words.

[greta23]

I’m deeply moved by your raw and honest account of navigating profound grief. Your resilience shines through as you share the intricacies of loss and the tumultuous journey towards healing. Grief, a relentless companion, can indeed manifest as an illness that reshapes every aspect of life. Your ability to articulate the pain, the shattered moments, and the gradual emergence from the darkest depths is not only courageous but also offers solace to those traversing similar paths. Your exploration of re-inventing life and seeking touch and love resonates profoundly. Your words are a testament to the human spirit’s capacity to endure, evolve, and eventually rediscover joy. May your journey forward be marked by increasing moments of peace, connection, and the rebuilding of a life filled with purpose and love.

[VM_Hill0]

Hi @Stefan,
Your journey through severe grief is profoundly moving and speaks to the depth of love and loss you’ve experienced. It’s evident that you’ve navigated through incredibly challenging terrain, from the heart-wrenching moments of care and loss to the tumultuous aftermath of grief’s relentless grip.

Your candid reflection on the progression of grief, from the initial numbness to the overwhelming onslaught of emotions and physical manifestations, resonates with anyone who has experienced profound loss. The way you describe the insidious nature of grief, how it permeates every aspect of your being and alters your very existence, is hauntingly accurate.

It’s heartening to hear that, despite the darkest depths you’ve faced, there’s a glimmer of hope and renewal on the horizon. Your resilience shines through as you begin to envision a future beyond the suffocating weight of grief, seeking out new possibilities and embracing the potential for joy once more.

Your words serve as a poignant reminder that grief is not just an emotion but an illness that can consume and overwhelm. Yet, amidst the pain and turmoil, there lies the possibility of healing and growth. Your journey is a testament to the human spirit’s capacity to endure and emerge transformed, even in the face of unimaginable loss.

Thank you for sharing your story with such honesty and vulnerability. Your courage in confronting the complexities of grief will undoubtedly resonate with others who are navigating similar paths. May you continue to find solace and strength as you forge ahead, honoring the memory of your beloved Louisa while embracing the promise of new beginnings.

All the best Stefan

[lejla]

Thank you so much for sharing this honest and raw experience of your grief. I am so sorry for your loss. I lost my younger brother very suddenly and shockingly just over a year ago. I to felt like I was getting things done, helping everyone else and being the ‘strong one’. It’s recently hit me like a tonne of bricks and I’ve crumbled under the enormous trauma I’ve experienced. I also feel I’m unhealthy physically, having random bouts of pain and illness. I now know the effect that profound grief and trauma can have on our bodies.
This is such a difficult journey for us all, but when I read stories like yours I’m reminded that I’m not alone.

[VM-willowtree]

@Lejla I just saw your response on another forum, you had the most beautiful words of comfort to offer to someone else in their grief and a willingness to share your own experience. Sometimes I feel like I never know what to say to someone dealing with loss and grief, but I feel like your words spoke to me and meant a lot to me, and I can imagine for others too.
Then- seeing this post where you feel like you are the strong one for everyone else, especially after seeing your beautiful words with other members… I really want to acknowledge you in that, for the strength you have to support everyone else, and also for the strength required for you to get through this past year and cope with your own grief and loss. I cannot imagine what you have experienced or how you are feeling but I am in awe of you.
And I know it is such a gift to have a kind and genuine soul like you in our community, sharing your vulnerability, your pain, your wisdom and your beautiful words. please make sure you are looking after yourself too, saving yourself some of that love and compassion you hold for so many others.

Sending lots of love to you Lejla x

[Author]

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