When I was in college I spent a semester living in Germany and traveling around Europe. I started taking German in 9th grade, but 7 years later when I went to Germany, I still struggled with basic conversation. Many of my classmates grew up in German speaking families and they had a distinct advantage being bilingual. By the time I came back home though, I was fluent enough that I could carry on all my daily activities, eating, shopping, traveling, finances, etc in German. I was really proud of that accomplishment.
When I returned though, i experienced something unusual that I haven’t heard other people talk about, but there has to be a name for this. As the time since I’d returned from Germany increased, I didn’t have the opportunity to practice conversation, so I started forgetting a lot of it.
The funny thing is that when I forgot a German word, I forgot the corresponding English word for a while too. I actually had a lot of trouble just having a normal conversation in english.
It may not have looked like it from the outside, but inside my brain I struggled to have simple conversations while searching for the English translation of the German word I’d forgotten.
I feel like I’m experiencing something similar with Michael. He dealt with his disability from his brain surgery for nearly 3 1/2 years before he died. He never drove again after that surgery and it was his number one goal to drive his Jeep. He had purchased it only a month prior to being diagnosed.
I transitioned from his adventurous partner in crime to his supporter and fetcher as he recovered from surgery. Without going through the whole timeline for the past 3 years, I’l just say that he had a brief period of about 6 months when he was happy, energetic and able to help with things around the house, walk in the woods, and go shopping in Costco with me.
But as the cancer and the effects of radiation and surgical scarring all progressed, he gradually lost abilities a little at a time. Fast forward to the last 6 weeks and he was unable to get up out of bed, or shift his body in the bed.
He was completely dependent on first nurses and techs in the hospital, then myself and caregivers at home for 100% of his comfort needs.
In between the woods walks and the bedside care, his abilities declined stochastically … unpredictable in timing, but certain in it’s progression. Each time there was a change in his abilities or needs I would initially experience the same quality of fear, anxiety and anger all over again, only to then get used to his new normal.
In the beginning I couldn’t have imaged where we would be this past month. And the more time that goes by even the weight of that sentence will change…I can’t say he died 2 weeks ago which is fresh enough that even strangers give me hugs if it happens to come up. No one gives spontaneous hugs or cards when it’s been 2 years since someone died.
Here’s the weird part…now that he’s gone and I’m in the house alone, I feel…normal. I mean, I’m sad, and I think about him all the time…but the last 9 months were so traumatic for me with continuous anxiety about his decline.
He’d have a decline and i’d wonder how was I going to take care of him at home? Right up until the day I couldn’t take care of him. Even on that day I was worried that they’d try to send him home with me, but I was out of options at home.
I got used to Michael being a fixture in his spot on the sofa…always there…always right there when I came home and opened the door. He didn’t go upstairs for the final 6 months because he was too weak.
But his mind took longer than his body to accept those kinds of changes. He was frustrated and sad and just wanted to be around as long as possible for his children and grandchildren.
I sat here wondering why I feel so “normal” after all of this? I think it’s like the Vergessen phenomenon (Vergessen = forget in German). I think as I forget the emotional trauma I experienced, I forget the person he was at that time as well.
Hospice was 100% saturated with caring for a dying man. It was hard and sad but needed to be done. Save for a few moments, I have not willingly put my mind back in that time period to relive what we did. It’s like my subconscious is protecting myself by not allowing me to go there with my thoughts.
At the same time, remembering when Michael was physically independent, with a sharp wit and smiling most of the time…that’s painful too. It makes me sad to think about it for more than a few moments, so I don’t. In time I will, and there is no hurry.
So in forgetting my own experiences being his partner, lover and caregiver…and all the associated loss that I experienced even while he was alive…I’m forgetting HIM during that time period as well.
It hurts to remember him being disabled. I just got used to his needs and didn’t think of him while taking care of him, even as we struggled with bedside commodes, wheelchairs and ramps, and having a lift installed which took 6 months with permits and contractors (oh my).
Can you put a price on the amount of life and activity that having the lift enabled? Our last dinner out was just 3-4 weeks before I took him to the hospital (that was just 6 weeks ago) …was it worth the savings drawdown to push him down the street to get a hamburger? Listen to live music? Watch one of the bridge beams arriving and go all the way down to the park at Braddock and Forbes for one day? Absolutely…those are all priceless memories.
So just like the Vergessen Phenomenon, as I forget how hard these last weeks and months were, I also forget what he was like during that time. Not willfully.
So just like those months where instead of having a conversation in English I was alone with my thoughts in my head….Instead of struggling with sad memories of him sick or well…it’s just me here in my house like I was before we started dating.
“I” feels eerily normal. And if I think about THAT…that makes me wonder if this is normal? I’m changed, but I’m not devastated by his death, I was devastated by his last 3 years of life and I think he was as well.
“I” feels eerily normal. And if I think about THAT…that makes me wonder if this is normal? I’m changed, but I’m not devastated by his death, I was devastated by his last 3 years of life
My friend Sarah sent me this poem the other day and it resonates so well. And I think I’m Ok, but I’m not 100% sure, and that’s OK too.
i carry your heart with me
i carry your heart with me
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
i carry your heart(i carry it in my heart)