One Sunday afternoon, I was speaking with a good friend on Zoom and we shared screens to look at my website.
Something was there, but it was not my beautiful web site. It was unreadable, and the pages didn’t work, and my heart sank.
When it happened, because I don’t know anything about websites, the thing was a complete mystery. To me it meant my website was gone, and never to be recaptured again.
Very quickly, I noticed I felt genuine despair. And grief. It was truly painful. I was mourning like you mourn a beloved person.
And so, where do I turn with my absolute grief? I immediately went to Yumi and with tears in my eyes I said, “Yumi, you’re never going to believe this, but my website is gone,” and I started to sob and he just took my head in his hands the way he always has, and, I could feel in his arms, “I’m with you, I’m with you, I’m with you.”
If you are new to us as a couple, Yumi fell last year, hit his head, and has cognitive impairments now that limit his ability to process information at an adult level. And, were I to name him by his diagnosis, I wouldn’t have gone to him in my grief because you don’t, as a caregiver, go to the person you’re giving care to with your distress.
If you are new to us as a couple, I want you to know that I have a new Yumi now. He fell a few times last year and hit his head. It has changed both his cognition as well as his memory. I have said goodbye to the 28th husband he was before, and I have said hello to the 29th husband that he is now.
Were I to name him by his diagnosis, and think of him that way I wouldn’t have gone to him in my grief because you don’t, as a caregiver, take your distress go to the person you’re giving care to.
But in this newest adventure with Yumi, I’m not his caregiver. We are care partners, and so it was completely right that I turned to him in my deepest distress.
What lives in him these days is what always has been there: his love for me, his care for me, the deepest, deepest care for me. Now, it’s in his eyes, sometimes in such a pure way that it’s almost unbearable; there’s that much love there.
Because of that love and because we are care partners, I just let myself go the way I used to, and I cried about the loss of my web site. And as he held me, I could tell, he was basically saying, “I have all the time in the world just for you.” I could just feel it.
For days after I was haunted. I knew the site was gone, and although I knew my team was looking into it, my belief that it was gone left me in such pain. Even though my team sent me an email when it was fixed, I didn’t really believe it. It took until Thursday during a meeting when they showed me and it was beautiful and perfect again that I believed it was really back. That says a lot about what I know about web sites!
With regard to my experience with Yumi during this time, obviously, this was a lesson I needed to get—that I could still count on him in this way. And it came in the perfect way; I didn’t understand the “it’s fixed” message because I needed to go to Yumi several times. One time with Yumi caring for me would have been amazing. But across four days, there were several times when I went to him to say “I’m haunted,” and he would just save me. And in those days, I learned that his ability to give me solace was solid.
It’s interesting. Friends sometimes say to me, “I’m so sorry. I know you must have some terrible times every day.”
In reality, it’s entirely the opposite. I have gorgeous times every day. Yes, thinking I’d lost the website was a terrible thing, but it had nothing to do with Yumi or our life together; this new adventure we’re living together.
I find that many people believe that when you’re a caregiver, you’re dealing with someone who is diminished. And that you’re not going to get what you used to get in the relationship, and that not getting that is incredibly sad.
And I did mourn my 28th husband because of the same level of humor that wasn’t there, anymore, or the organizational skill for our life, and because of not having conversations together, or enjoying music together in the same ways, and because of everything new to this and everything that was no longer. I mourned.
But I decided one Sunday morning, that I’d been there, done that. I’m welcoming husband number 29. I got to know this 29th husband, and that’s when the pandemic hit. And, I got to spend endless time with him to know him. I shared a bit about that in this post.
Here’s something truly big that I’ve learned:
When things changed, the name I gave for this adventure was Rallying Around the Essence. I don’t think I really knew what that meant last year, but I now know—that’s what’s happening.
I’ve learned in such a beautiful way that our essence stays intact. That is something we all need to know because no matter what people go through, no matter the traumas, the hurts, the losses, or the way people will say, “I’m broken, I’m damaged,” the truth is that a person’s essence remains intact. Yes, initially there is that whole survival pattern as a shield to help you through the most difficult initial moments. But, once that dissolves, you are who you really are. You are in your essence.
And so with Yumi, when I went to him in my grief over the website, he may not have understood what was happening, but he embraced me so perfectly and gave me such solace—maybe even more purely than he used to. Now, he’s just in his human essence, in full human essence, intact in his goodness, his kindness, his depth, his soulfulness, his joy in living, his radiance, and his love. And, in my grief, he offered every bit of that to me. His essence is still intact.
And I think that’s why, for example, I never use a diagnosis, not even with Yumi or… Yumi didn’t use it with me when I had breast cancer. It was Rallying Around the Boob because the moment you make it about the diagnosis, you’ve put the person in a box of that diagnosis.
Our essence can’t be boxed. It’s eternal. It’s eternal, and it’s all encompassing, and the potential of our essence is unlimited.
So, I’m watching Yumi’s love for me grow because he is experiencing how much I welcome him and who he is today in the things we do together, and he can see I have joy in it all.
Like with his shower. We both love it. I never do it unless we have as much time as we need, so that he can always experience it in complete relaxation, and with a massage every time with special cream. I said to him, “How did your skin ever survive if I didn’t put cream on you your whole life?” He smiled at me.
Everything changed when we moved from having me be his caregiver, to our being carepartners.
Because you see, if I see it as care-giving, then that hour of a shower would be something else for me to get done. But if it’s that we’re having the best of times, and we’re loving each other, and he’s getting a massage, and his toes are getting taken care of and his hands, and we’re just together, and there’s this mutual gratitude, then it’s just a splendid hour of our day together.
I learn over and over that life isn’t a problem to be solved, but an adventure to be lived.
And, if we see a person who has a diagnosis, who needs care, as another thing to be managed or another thing to fit into an already busy day, then of course you’re in isolation, trying to solve a problem.
But when it’s an adventure, you live it together, in connection.
I don’t want to appear to be saying that everything is exciting and entirely fun. But everything I do with Yumi is another way of loving him, and growing in our relationship. It’s a new way of life, and of being together, and it’s so very beautiful.
I am grateful for the lesson of the lost web site—to learn how to live and love together even more deeply than even I knew we could.