Living with CFS: approaching the anniversaries of deaths

Days that remind you more of loss

One of the hardest things to do in life is to face, every year, the days that remind you of the death of someone loved and dear.

This will be our first year without my Dad for Thanksgiving.

And to see how that interacts with the things that are still going on in YOUR life, good and bad, but still in life – and not after it.

And no matter how close you are to someone else’s family, no matter how much you thought it affected you, and you shared someone else’s pain, when it is your own pain you have to deal with it all over again.

It is impossible to do enough

Another guilt? Wondering if you have done everything you can for the person whose grief you share, but more remotely. Don’t worry. You haven’t. Maybe you can’t.

There are deaths in the family I’m removed from – the hidden cost of living far from home. If you see someone rarely, you are less affected, by definition: there are simply fewer moments that remind you of the loss. You see the grief as if reflected from a muddy surface. You can imagine – but, even with empathy, imagination is not experience.

After you see Rosemary’s Baby, and experience the intensity of loving a child even if its father is the devil himself, you go home. If you have children, they are NOT the devil’s spawn. The emotional intensity the moviemakers confer is of limited duration. The most they can hope to achieve is an intense moment or two during and soon after.

Maturity consists in going there, not hiding. Realizing how little you have helped someone else, at the same time you realize you cannot be helped yourself: grief will have its way and its time. Wishing you had done more, could have done more, could still do anything that might really help someone else’s grief.

Grief and loss are self-centered – for everyone

It all comes back to ME: if someone else dies, I can die, too. WILL die, too.

It does no good to try to distance yourself from that thought – even as you tell yourself not everything in life has to be about YOU. We are creatures who see everything through the light of our own consciousness. Because that’s all we have.

And all of this hurts, will hurt, never really stops hurting: every human on this planet must deal with the deaths of all loved ones who go before. Which sounds lovely and general and lofty. Until it is your own parent. Or worse, your own child.

It is harder for those who can’t afford grief

This is harder for people with CFS. A PWC (person with CFS) has two bad choices on how to react. Don’t take my word for it: I will explain.

The first choice is to react the way a normal person reacts: many different ways, but most of them involving feeling the emotions, the sadness, the knowledge that nothing will ever be the same – and then having to deal with the aftermath of that reaction for far longer than a normal person would.

The second choice is to mute your own reaction, to avoid the triggers, to grieve very slowly and mildly – so you can survive. To know yourself, remember your own limits, and push away what you can, suppress, minimize, avoid, circumvent.

For me, with CFS as a constant anchor around my neck, I grieve that I cannot grieve more. Normal grief is paralyzing to ‘normal,’ ‘able’ people. To me, the aftermath of the adrenaline is crippling. As I have gotten a bit better over the years, I can take more without coming to a full stop – but not much. Normal grief is cleansing, as are tears. I can’t afford normal grief. I don’t cry any more. Not really. My body is extremely limited in how it processes the metabolites of grief. I have learned to guard – I remember too well how the aftermaths have been.

The appearance of unconcern is just that, appearance

It makes me appear cold. Unconcerned. Uncaring. When all I wish is that I were able to just let go, I’m doing the self-talk that makes the stages of grief go faster: “If I can’t change something, I must reach the acceptance stage sooner.” And there is nothing more unchangeable than death. I hate it. Moderately, of course.

It would be stupid for me to let my grief go on longer than the grief of those who are the primary mourners – but experiencing even a fraction of their grief will, in effect, do exactly that – because it takes me so long to recover from even a portion of normal emotions.

You don’t see this discussed much: how the disease affects the ability of otherwise empathetic people to experience both the emotional experiences, and the healing thoughts that need to follow. A stunted emotional outlook BY NECESSITY is another cruel twist to add to the effect of the disease: I can choose a stunted response to what happens, and still be felled by the recovery – or I can choose (or be forced into) a proper emotional response, and pay disproportionately for it and be seen as exaggerated in my response. Not pleasant choices to contemplate, but ones which must be acknowledged.

Just as eating a lot of sugar and putting yourself into a diabetic coma when your parent dies would be seen as a possibly logical but really stupid action, letting in all of the waves of grief is a really stupid action when you KNOW, from previous experience, how much it will cost – and how, if you truly give in, you will be seen by those who have to deal with you as a diva? prima donna? person having an emotional response they are not entitled to? More Catholic than the Pope?

Anniversaries – when it’s harder to ignore loss

There are anniversaries coming – there always are. A few this year are being hard to deal with because the grief is so fresh – and because it reminds me so strongly of the intensity of previous ones. I thoroughly hate that I must continually mute my own feelings. Writing them down helps – at least I can acknowledge them before trying to ruthlessly suppress them.

It is NOT all about me, but this disease has a lot more to answer for than is realized.


12 thoughts on “Living with CFS: approaching the anniversaries of deaths

    1. Alicia Butcher Ehrhardt Post author

      Thanks, Naleta. You understand.

      I think it was Miss Manners who wrote something I’ve always remembered: there are formalized words for ALL etiquette situations because people, left to their own devices in a stressful situation, ALWAYS say the wrong thing.

      I don’t know when ‘I’m so sorry’ became ‘I’m so sorry for your loss.’ I don’t like the change. But that’s just me. It is STILL far better than telling someone their dad is ‘in a better place.’ No, he isn’t. The better place would have been at the head of the table, carving the turkey.

      And there are NO words for even bigger tragedies. Nothing you can come up with on the spur of the moment.

      Liked by 1 person

  1. cenobyte

    Anniversaries like this are the shits. It’s toughest for me at Christmas because that was Mum’s favourite holiday. And she spoiled me. It sounds maudlin but I miss the Santa gifts – she went out of her way to make sure everyone always had gifts from Santa under the tree. When she died, that job fell to me, and guess what? Nobody gets Santa gifts for Santa. It’s just one tiny reminder, every year, of how much she is missed.

    And she was young. Very young. 56.

    I cannot imagine living through this heavy, heavy grief with chronic illness. Try to take this time for fond memories, and know that we are here, reading.

    Happy Thanksgving, Alicia.


    1. Alicia Butcher Ehrhardt Post author

      I miss all the things my Mother did – and she’s still with us. She just hasn’t been able to do them for years. My sympathies.

      Chronic illness forces a bunch of things on you – you deal as best you can. For many years, I did ALL the gifts – because I didn’t have the time and energy to teach the kids, take them shopping, help them choose and wrap and label – as much as I would have (maybe) otherwise.

      They got a lot more of me being home – but it wasn’t GOOD quality time, the time I would have liked to give them. OTOH, if I had stayed healthy, my career might have had a huge impact on our family life in a different way.

      In an atmosphere of scarcity, you cut, and choose, and cut. Your standards drop to rock bottom. The worst part: you know what’s going on, and can’t change it. You can’t give up your job and stay home with the kids – you’re already doing it.

      Most of the time I’m upbeat (or drag myself there) – it helps nothing to be morose. It doesn’t fix anything, and infects the rest of the time.

      Every once in a while, I dare to let myself reflect.

      I don’t believe in ‘everything happens for a reason.’ I believe in doing the best you can as much as you can, and working to be at peace with that.

      Thanks for stopping by – good to see you here.


  2. Widdershins

    “I don’t cry any more. ” … I think I would break if I couldn’t cry. But then again, I can’t run up and down stairs, and that hasn’t broken me.
    We do what we can and keep on writing.
    Take care.



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