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Recently, one of the other guys in my caregiver support group (Jack’s Caregiver Coalition) emailed me and asked what being a caregiver means to me. Here is what I wrote back.

The person I love most in the world has late stage cancer. Being a caregiver to her is the hardest and most important thing I have ever done in my life. I hate that I have to do it and I wish more than anything that Cassie didn’t have cancer but I am grateful that I feel equipped to play this role. More than anything else, being a caregiver to me means being present. Being around. Listening. Loving. Being there with Cassie, not always to help with something (though that is part of it) but just being in it with her. It’s hard but it’s beautiful too in a way I can’t really describe. It’s also unrelenting. There is never a day she doesn’t have metastatic breast cancer so there is never a day off from being a caregiver. I don’t say that because I am looking for sympathy just to state that’s the reality. You are always on (even when there’s down time you are still on heightened alert). You are always scared. I worry all of the time about Cassie and while I don’t actively think about it I know that somewhere in the dark recesses of my mind I am scared about what will happen when she dies. I can’t imagine my life without her so I choose to focus right now on our life together for whatever time we have left. It’s hard and it’s sad and it’s loaded with grief for what we have lost but we are in it together. Caregiver and caregetter loving as fiercely (if not more fiercely) than ever.

I don’t know the first time I heard the expression “Hope isn’t a strategy” but I have certainly quoted it a number of times over the years. Usually it is something I’ve said to a client or a campaign I was advising as a way to make the case that we needed a plan or a more focused set of goals, priorities and tactics. It would usually engender a laugh and was a good way to provoke discussion. 

Last week though, I found myself saying the exact opposite. I was talking to some fellow cancer-caregivers and we were all discussing how scared, anxious and overwhelmed we were by the current situation. Now not only do our spouses/partners have cancer but they are also at heightened risk of getting Covid-19 and while that is scary for everyone it is especially frightening for those who already have severely compromised immune systems.

So we talked about our fears and all the plans in our lives that have changed. The fear of even stepping into a store because it might result in infection and god-forbid an even earlier death of our loved one. The “bucket-list” trips that people are cancelling without knowing if they will ever get to take them. The sadness and loneliness of not being able to accompany our partners to the doctor. How do you process all of this? How do you not have it overwhelm you?

That’s when I found myself saying: “Maybe hope is a strategy.” It immediately rang true because for me and others in this situation it is actually the only thing we have. Cassie was feeling awful the other day (almost couldn’t get out of bed) and really the only thing I could do was hope that she would feel better the next day. I hope all of the time that new medicines will be discovered. I hope that we have more time together. I’m encouraging us to make future plans and hope we can follow-through on them. I hope that I won’t wake up crushingly sad, or if I do, that I can hopefully find something that day to put a smile on my face. 

And now, in the middle of this new scary pandemic, I am finding that for me hope is more important than ever. There is so much fear, so much I am angry about. So many injustices and so many unknowns. The only way I can handle it all is through the hope of better days ahead. Hope that we will learn from this and act accordingly. Hope that suffering will be less than predicted. 

So I guess hope can be a strategy and I’m embracing it as I face both cancer and Coronavirus.

Today I turn 52. Historically I have always loved my birthday. You can ask any of my friends and they’ll likely attest to my birthday zeal. I always looked forward to it, counted down the days, and usually planned multiple celebrations including the exact same birthday dinner year after year. This isn’t as self-absorbed as it probably sounds, as I also love other people’s birthdays. I think that all birthdays are special — warranting attention, love and gratitude.

This year though, as my birthday arrives, I am overcome with ambivalence. On the one hand, I am looking forward to spending the day with Cassie and seeing friends and family this weekend. On the other hand, I no longer want to mark the passage of time. Nor do I welcome the sense that the years seem to be speeding up. Since Cassie’s diagnosis, I feel like our relationship with time is changing. I want the years to move slower not faster. If we really only have limited years left I don’t want to acknowledge another one passing. I feel that with my birthday I can hear a giant clock ticking faster and louder and I want to cover my ears.

When Cassie and I were talking about this at breakfast yesterday, she said: “I guess birthdays are like everything else now — they’re different.” That seems right. We are living in a new normal and nothing is exempt not even birthdays or holidays (New Year’s Eve is another tough one when it comes to marking time). We still feel joy but it’s often more muted. We still celebrate but with a different lens. We still embrace gratitude but also accept what we have lost as our life has changed. We know we can’t stop time but we want to slow it down, day-by-day, as much as we can. 

This year, as I blow out the candles on the giant birthday cake that I always share with my niece Sylvia I won’t be wishing for the Cubs to win the World Series in 2020. I’ll be looking at Cassie and wishing for more time.  

One of the hardest and most surreal parts of Cassie’s diagnosis has been dealing with what we have been calling “living grief.” It’s the grief we feel right now for the life we lost, for the dreams we fear we have to give up and for the sadness and emptiness that we carry around. It’s there every single day and at this point, doesn’t appear to be lessening at all. It’s heavy.

On Sunday, May 12 (Mother’s Day) our living grief met new grief when my mom died. She had been suffering from a serious blood condition for some time but her death was sudden and unexpected. In fact, the day before she entered the hospital, we were together celebrating her granddaughter Mimi’s second birthday. Mom was in rare form and good spirits. She was making plans for the future, arguing with me about driving and seemed so vibrant and full of life. Then, just seven days later, she was gone.

My two brothers and I were at her side for those final days. We got to say goodbye and we celebrated her life with family and friends at a beautiful service in her hometown of Chicago. We shared stories. We looked at pictures. We ate heartily at two Shivas (which is basically a Jewish wake with bagels, cured meats and smoked fish) and we rejoiced in what a wonderful mother,  mother-in-law and grandmother she had been. Then all the “doing” stopped and the grief hit like a freight train.

I am still reeling of course and keep expecting her to call or wanting to call her.  She moved to Minnesota almost two years ago and lived five minutes from me and Cassie. We saw her often and talked to her daily. We shopped and ate together. We shared books. We bemoaned Trump. We laughed a lot. She was a huge presence in our lives which now feel too quiet and empty.

It’s so sad. My chest hurts. I can’t sleep. I feel slow —  like I am walking through water. I remember much of this from when my dad died, even more suddenly in 2015, but what I am experiencing now somehow seems both familiar and different and harder all at the same time.  

I think part of what makes it so hard right now in particular, is that this is our first crisis since Cassie’s diagnosis and we are both facing this new crisis already depleted. Before, when one of us was going through something bad, that person would lean harder on the other. One of us could serve as a rock in our relationship. This time we were both already in crisis when mom died. The grief I feel around the loss of my mom and the grief I feel around Cassie’s illness is also grief that Cassie is experiencing. How do we balance the need to support each other while taking care of ourselves and experiencing our own grief? Cassie’s illness impacts both of us. The death of my mom impacts both of us. Grief has met grief and it feels almost unbearable.

So what do you do when this happens? When your living grief runs head-first into new grief. I don’t know other then I guess you try to make room for it. That’s what we have already been attempting to do around Cassie’s illness — create room for our new reality even though we don’t want to.

Grief is so tangible and so heavy. You can’t ignore it but it doesn’t just fit neatly into your life. We have to slow down, name it and let other things go so we can handle the new weight that grief adds. Now with even more weight, I think we need to go even slower. Let even more things go. Create more room in our life for the sadness, loneliness and emptiness. This probably isn’t the last time that grief will meet grief for us, so we need to try and muddle through, practice extreme patience with each other and learn what we can about ourselves and our grief processes. We need to let others help us and love us. We need to grab lightness and joy when and where we can. Most of all though, I think we just need to accept that it’s going to be really heavy and hard for a while and that’s just what happens when grief meets grief.

In her last post, Cassie mentioned our nightly tradition of writing in our gratitude journals. What she didn’t know was that I stopped journaling the day she was diagnosed.

I wasn’t feeling grateful. I was pissed. Angry at the world. Not understanding why something like this would happen to such a good person. Why had the cancer come back? Why didn’t the doctors catch all of it 16 years ago when it first appeared? Why couldn’t they cure it now? Why, why, why? Fuck. Fuck. Fuck.  That’s how I felt. Not grateful, rageful.

Then, in my first appointment following Cassie’s diagnosis, my therapist Craig said: “The most important thing right now is gratitude.” I told him right away that I didn’t see it. I mean yes, I was grateful we had health insurance and flexibility around work and for our supportive community, but that was it. I was too angry and scared to be deeply grateful.

He looked at me and said. “You’re really hurting. You’re in a ton of pain. And you’re really terrified, right?” Yes to all three, I affirmed. Well he went on to say: “Maybe the reason it hurts so much, and is so painful, is because those things are in direct proportion to how much you love Cassie and that’s what you should be grateful for.”

I looked at him and took it in. Started to speak then stopped and thought some more. He was right. Cassie and I are blessed with a great love and that is why this hurts so much and is so scary — because the love of my life is sick and I hate everything about that. But I am grateful for our love, now more than ever.

I told Craig he had earned his therapist gold star that day. That night I shared all this with Cassie and we both embraced the idea that pain and gratitude might now be intertwined in ways we didn’t previously understand. Then I took out my gratitude journal and started writing again. The thing I was most grateful for that day, and every day since: “Time left with Cassie.”