This inverted life

I wish I felt comfortable writing my way through this time.

I’d like to tell you about the fact that my son and I have been living at my mother’s since February because I needed to separate from my husband. I needed things to change. It was excruciating for a while and it is still not easy. We’re at a crossroads. We take things day by day. Sometimes I’ve only taken them moment by moment. We still plan on doing another radio show together. We are still family, connected by this amazing person we created — this person that I wouldn’t want to deprive of his father’s love or the ability to know who and where he comes from. One way or another, a new life will be built. I just have no idea what that life will look like.

I’d like to tell you about the remarkable meetings and support groups I’ve found for the families of addicts and alcoholics. About the evenings when I find myself in a room with people I never imagined knowing, let alone being vulnerable with, and how they humble and lift me. How this 78-year-old woman heard me state the facts of my life, asked to hug me, and, once I agreed, whispered “that is one heavy load you are carrying.” She closed her eyes and pressed her hand over my heart with a prayer. Her warmth thawed my many years of cynicism about Al-Anon meetings. She helped me to hear what I needed to hear, to take what I needed, as they are so fond of saying, and leave the rest.

I’d like to tell you what it’s like to live with a stepfather who is dying and has Lewy Body Disease, which combines the debilitating physical symptoms of Parkinsons with dementia. About the things I can’t see that are apparently here, like cars that keep pulling into the house, dead dogs lying around, men moving freezers, people with scissors and family members that have long since passed. How, before he stopped being able to walk a few weeks ago, he showed up in my room one morning because he couldn’t find my mother. He thought he had to hold his breath for as long as she wasn’t in the room with him. As I watch my mother try to manage each day, I see just how brutal the business of caregiving can be.

I’d like to tell you what a house feels like after hospice swoops in, about the book they gave my mother that details what to look for in the last weeks, days, hours and moments before a person dies. About how strange and refreshing it is to experience health care that probes a family about its mental, physical and spiritual well-being and looks for ways to help. About being the bearer of bad news to my stepdad’s sons with each clear and dramatic decline, especially the brother who has been my close friend since I was 19 and has a baby on the way this summer. About how generous the heart of my stepdad’s paid caregiver is as he shows up every morning and evening (on the days he’s not working) to carry him from the hospital bed to a recliner in the family room and back.

I’d like to tell you how vulnerable my son was before all of this. How frighteningly perceptive and unfairly aware he is of the world around him, of cells and stardust and disease and disaster. Or how often I feel like I’m on a razor-thin line, some days thinking that this experience, this period, could be a profound opportunity for him to understand more about life, relationships and death, other days terrified that all of this will screw him up, scar or emotionally maim him because it’s all so, so much for someone who is freshly five to carry.

I’d like to tell you about my uncle who passed away this past Sunday after his years-long battle with cancer. And I do mean battle. He fought for every moment he had on this earth, and didn’t fail to live each one that he could. During one early remission, he traveled to Africa and nearly got himself killed by leaving the tent when hippopotamuses were around. I would know so much less about what a strong, loving family man looks like if I hadn’t known him. I would know less about what a self-actualized, truly indefatigable person looks like. I also wouldn’t know how hostile to humans and dangerous a hippo can be. While I’m not planning a safari, that seems like an important thing to know.

So I’m telling you.

It’s been months now that I’ve felt like a person walking around with an oozing, emotional gunshot wound on her chest, visible only to those who know me or know what’s been going on because even as I avoid writing about it here, I say these things out loud when I’m out a lot. I have to. Friends — especially so many beautiful, generous, supportive moms — cautiously ask me about how things are going, and I keep disappointing them with clammy, sad facts, because I’ve become lousy at sugar-coating things. I had started to feel like I’d suffocate if I didn’t say what felt true today out loud, so I do it, and almost always immediately feel lighter because there are so many people who can understand or relate to some piece of what’s going on here, no matter how small. They honor me by listening and offering help and I feel totally selfish each time they do because I am so overloaded with my own stuff right now I don’t listen the way I usually do. I usually pride myself on my ability to listen.

Life feels inverted. I cry the most when good things happen. Each offer of help is a salve. Each small solution that I see hospice offer my mother chokes me up. Joyful moments make me so, so grateful. Each expression of love and friendship, each person who has said “you are doing better than you know” to me, each person who looks at me like I’m hemorrhaging but knows she isn’t a surgeon and offers some small kindness to me anyway has been a gift this year.

I’m turning 40 in three weeks and I don’t remember a more difficult or uncertain time. I also don’t remember feeling more blessed or more open-hearted. On bad days, I feel very alone, but on the good ones, I am less alone than ever. I am more grateful than ever.

A couple of Sundays ago my stepbrother put my little, strangely nonfunctional family unit on the guest list for his big music festival. The three of us saw Michael Franti and Spearhead, who we’ve loved for a long time. The band brought little kids onto the stage for the encore, “Say Hey,” and my son danced, jumped, pranced, twirled, sang and ran next to Franti, apparently without an iota of fear or apprehension in his body. He told me looked for me but couldn’t find me in the crowd, where I was smiling so hard that my face should have cracked open.

When he came down from the stage, he asked, “could you hear my little tiny voice up there? I was singing as loud as I could so you would hear me.” And while I couldn’t literally hear him, I could hear him, and see him, and feel him up there, so fully himself, there to enjoy more than perform, so full of energy and faith and confidence that he is, in fact, loved. That he was certain his mother was out there somewhere listening for his voice made me feel like a pretty good mom.

The next morning, I woke up with him clinging to me the way he has every morning since we’ve been in this place — like a life preserver.  He snuggled up to my ear and sang the song, punctuating each line with a hug around the neck: “I love you. I love you. I love you.”

Declan running across the stage (with Michael Franti).

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19 thoughts on “This inverted life”

  1. I'm glad you got that out. I wanted to tell you this on Sunday but didn't get a chance. As you likely know, my life was a big pile of suck from about april 2006 until, well, this february. Death, job loss, financial crisis, et. al. And then, magically, it started getting better. Maybe this isn't helpful since our run was for 4 years but I think yours will be shorter. And as someone who experienced a lot of emotional trauma as a child, I have to say that I think Declan will be ok. I think it's more about how the grownup handles the situation and from what I can tell, you're doing just fine.

  2. I have such hopes for you and Declan and Dan, Tracy. I'm sorry that this is all so lousy right now and am glad that you are finding glimmers in the darkness. You're an awesome woman and I'm honored to know you.

  3. Thank you for sharing this part of your life. You did it very powerfully. You have a wonderful talent. You have a beautiful, intelligent child. You have wonderful family and friends and you are well-respected. You are a beautiful, loving person. You are incredibly strong. You can get through this and someday you will smile easily. Keep writing about the truth. It will make you strong. I hope you find peace soon because I know you will find it.

  4. Wow. Feeling overwhelmed by these comments and several kind private messages I've received in the past 24 hours.

    Thank you, thank you, lovely people.

  5. giant tears are falling right now. You are an amazing human being my girl. I am hear for you- just small ears- but I am here. Declan is so blessed. I wish you lots of love and so much courage. xo Thank you for sharing this beautiful and real post.

  6. When hearing of my husband's illness (PTSD with psychosis and depression on top of innumerable "personality disorders"), people would sometimes offer sympathy [sic] with the words, "I know how you must feel." My response, "I hope not."

    I cannot know how it feels to walk through those sorrowful days, but I can tell you I've walked through my own. You aren't alone in that.

    Peace to you as you continue your journey of healing.

  7. I'm so sorry for everything you are going through right now. This seems like too much for one person to bear at the same time. The fact that you're handling it and keeping it together for your son is remarkable. I don't know if it helps you or not, but when the universe piles things on, I always think–how much it all sucks, yes–but then if I'm going to go through a rough patch, I'd rather go through it all at the same time instead of one bad thing at a time for years. ((( hugs for you )))

  8. It is difficult I know, difficult to experience and talking about all of it somehow makes it real. When my son was diagnosed with cancer, I had to go through all of it in stages. I am sorry you are going through all of this especially so much all at once. I've had a rough road for the last 14 years or so however, I want to encourage you to look for small victories, focus on Declan and you will all be stronger. It seems like an eternity but it does end and you can find joy and happiness even if your circumstances suck

  9. oh honey. i've been so out of touch. hiding maybe. and then, here. you.


    you brave girl, you. and even now, you find hope in unexpected places. there's more. there's more.


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