My ALS Adventure – About Grief

I’ve been thinking about this from a dear family member:  “I think it’s ok that while “trying to spot where habitual experiences no longer correspond to reality” we also grieve the loss”.

Is grief in fact a healthy response to loss? 

I’ve written before about my Buddhist classmate whose husband had very recently died after a very short illness.  “Many of us grieve for two years or more” I told her.  “I hope you will not suffer such pain for so long”“I’m not trying to avoid grief” she replied.  “I’m bringing it onto my path”.

She was courageously observing her suffering and by noticing and reflecting on her emotions, she was training herself to accept her new situation.

Grieving is not noticing and reflecting but wallowing in suffering.  It is self-pity.

In grief we torment ourselves with dreams of the past and fears of the future, numbing ourselves to the present until at last we’re worn out and we grudgingly accept the new situation.  That’s not healthy.

What is healthy is to notice and feel our experience now, to remain fully alive.  We can feel both the moments of sadness and all the other thoughts and feelings without getting trapped by them.

When one of my grandchildren speaks and I can’t reply, if I just notice my sad feeling then smile and respond in whatever way I can, the sadness vanishes.  Better for me and much better for my grandchild.

It can be like the sadness that sometimes comes even now, fifty years after she died, when I want to talk with my mom.  That sadness is momentary.

When I poured my formula this morning a memory of the fragrance, taste and texture of delicious fried breakfasts arose.   I was sad for a moment because I can’t enjoy them now.  Then I saw Felicity smile.

Grief is wallowing in movies manufactured by our imagination.  We’re so habituated to them that we often don’t even notice when they start to play.  The moment we do, however, we can open our senses and feel our fresh new experience in this moment.

Of course, it takes practice to notice when our movies start up and although I practice diligently, I do still sometimes fall for them.   But I notice them sooner and that’s liberating.

Felicity said it all so much more clearly 🙂

Felicity’s Reply

There have been many occasions when I have grieved, when Martin first received the diagnosis, when he could no longer talk to me, when I was afraid that we might not be together much longer and at all the little milestones along the path of his illness, but I have mostly come to terms with it now.

I realize that Martin is still here, that we can still communicate, and that fortunately the ALS does not seem to be spreading to other areas yet.  The PEG tube has made a huge difference.  I don’t have to worry every time I hear him coughing after eating, afraid that he has inhaled food and will end up choking or with pneumonia.  I don’t have to watch him struggling to swallow teaspoonfuls of food at each meal, and he is getting stronger by the day.

I find it more helpful to analyze exactly what I’m feeling and discuss it with Martin than let an overall feeling of sadness and despair take control.  I’m part realist and part optimist, I’ve always tried to accept what is and figure out ways to make life better for both of us under the circumstances we find ourselves in at any given time.

Interestingly, I found the transition difficult from always being conscious of what I was going to make for dinner and choosing food that Martin would like, to only having to please myself once he had the PEG tube and subsisted on a formula.

I’ve spent the better part of my life taking care of others and it took me a couple of weeks to not feel guilty at just pleasing myself, eating salads instead of a cooked meal for dinner etc.  I’m over that now though I do still miss it at times.

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