We Are Not Afraid

OK. So Mom passed away this evening. I’ve never liked that euphemism, Passed Away, but having seen her passage, having watched her breathe her actual last breath, surrounded by her local children and a grandchild who felt compelled to leave home and hearth to be there, it really was a passing. Yes, she died. And I refuse to say I “lost” my mother (thanks to my euphemism-hating “Neighbor”). But still, this was a much less harsh passage than could have been. And it was much less harsh than the passage my father made 30 years ago, with doctors pounding on him, trying to get his heart to beat, and finally, his resident wife sending in word to “let him go.”

I’m grateful for the support from friends on Facebook and my friends in three dimensions, and my family, the amazing Fuellemans from all over the country (or, all over the west coast) who called and sent texts and love. I even heard from my bonus mom. You’d think she wouldn’t care much about her husband’s first wife, but she does, because she is a kind-hearted, warm and loving human who was thrust into step-parenthood at a young age. Suzi is an amazing woman who managed to love me even when only a mother could.

I’m rambling (forgive me, please) but have to get back to the fact that people I know well, and those I barely know, have all weighed in on the journey Mom has been on for seven years. Most recently, the journey has had a clear end in sight. And tonight I learned that that’s OK.

She was wheeled out of HospiceCare tonight to “We shall overcome” a song I often sing with her because I know it and so did she, with the simple verses. The version I found was Pete Seeger, and in his usual Pete way he had to add some talk and then an exta verse: “we are not afraid.” And looking at my sister and my niece, and those people standing to honor the life that was my mom, even though she was in their care for less than a day, I wanted to grab said niece’s hand and say “see, we don’t have to be afraid.”

There’s only one more of Mom’s generation left, that I know at least. And then it will be us.

We are not afraid.

Tidying “magic”

I’ve read the famous book, the one about how tidying a specific way is life changing. You can find it yourself, The Life Changing Magic of Tidying Up, by Marie Kondo.

And although I have eight thousand other things to do, on September 2 I will start, as Ms. Kondo admonishes, by placing all my clothing in a pile and touching each item. Kondo uses the floor; I have a dog so I will use the guest bed.

I will turn off background music. I will pick up each item and ask myself “Does this spark joy?” Clothing that sparks joy will be set aside so I can find it homes. Clothing that fails to spark joy will be passed on. If I am following Ms. Kondo all the way, I will thank each item I let go of, for whatever service it provided.

Over the weekend, I will tackle books. I have more books than clothes, and I like books better than clothes, so I am expecting this will be harder for me than clothing. It is the same process: gather, touch and ask, find home.

And then it’s on to paper. I think the gathering of the paper will take a week, but I hope that’s not true. I’m not sure I will be able to let go of as much paper as Ms. Kondo suggests, but I aim to try.

So why am I following a woman from Japan as she talks about tidying? Because the very first step of her process is to set out your vision for your home. And because she promises that once you complete the process, there will be room in your life for other things. I’ve connected with others who have KonMari’d or KM’d their home, and the details of the freedom they offer, whether they have children and pets, or are single, or whatever, their testimony makes me want to follow this young woman from halfway across the world.

My vision is simple: I want to build in time and space. I want to create a home that is welcoming, to guests, yes, and to me. I want to spend less time taking care of the things in my house, and more time with people. I long to spend my time doing things other than chores. I look around and the list of tasks is long. Removing non-joy-sparking items will free room and space for those items that really do spark joy. By eliminating the things that don’t, I’ll have room in my life for things that do. And more importantly, for people who do as well. When others have spoken of their tidying journey, they talk about having room and space in their life, and therefore in their mind. I long for the long lists to disappear, the squirrel brain that is always hunting. Is this the perfect answer? I don’t know; I’m willing to try.

I welcome you to join me on this journey.

Holding on

Mom singing in 2011 when we came across the Solidarity Singers outside the Capitol.

Mom singing in 2011 when we came across the Solidarity Singers outside the Capitol.

I’ve been having some strange dreams lately. Last night I dreamt I took Mom to some event, too large for her to really feel engaged. We wandered and I was doing a really good job of being present, or so I thought.

Mom was hungry so I asked her to sit down while I filled a plate for her. I soon found myself listening to others chat easily, something we don’t do any longer. When I turned back to Mom, she was sobbing, in a way she does in real life. Her tears were streaming down her face and puddling on the floor.

I set her food down, wrapped my arms around her and rocked her back and forth like a baby and said “You’re safe; I’m here. I love you,” over and over and over.

As I came out of the dream, my arms were empty but I was still saying in my heart “You’re safe; I’m here. I love you.” This time I was hoping that from across town she could feel my love.

Meditation this morning was a bit easier. The other day I heard Daniel Goleman talking about the Dalai Lama and how Westerners have embraced meditation for their own health and well being and the Dalai Lama believes meditation is a way to increase compassion and bring harmony to the world. It was the exact kick I needed to be comfortable with “loving kindness” meditation.

Holding my mom in that dream was also a loving kindness meditation. “May you be safe. May you be happy. May you live a life of ease.”

Passion?

My new neighbors moved in and one promptly left to volunteer for a medical mission that lasted several months. Now the second one is going. When I mentioned that I’d miss her — because I will — and that I am excited for her because this kind of service is her passion, she agreed. I lamented that I lack a passion for anything right now.

She said “your dog is your passion.”

I love my dog. I do. She’s sweet and kind and gentle and has been a blessing to my life. She helps me get to know my neighbors. She makes me smile when I find her sleepy and soft when I get home. Her nails on the floor are the best alarm clock ever, because then she puts her head on the bed and stares at me.

She is not my passion. She’s my dog. Passion is bigger. A former friend said the place to put your heart and your work is where the greatest need meets your greatest passion. That’s my paraphrase of a quote by Frederick Buechner. You can find it here.

When I look around at all the work that needs doing, I long for the kind of passion that makes me forsake all other things. That’s not me, though. I like my work. I like my friends. I like lots of activities, and I have a few passions. But none that overtake my life. This is certainly not how I imagined my life.

I want something that unbalances me. Protesting climate change has put me in uncomfortable places for a cause that’s bigger than I am, bigger than the people I know and love, even. That’s the kind of passion I seek. The kind of passion that will make me forget to sleep or eat sometimes. The kind that will give me reason to live again.

It’s time to start finding.

Still Mom

The novel, Still Alice, by Lisa Genova shares the story of Alice Howland, a professor at Harvard, who develops early-onset Alzheimer’s disease. When my mom was diagnosed, lots of people called it “early onset” which it was not. She developed the disease in her mid to late 70s and has gone steadily downhill in the last couple of years.
Even though Alice is affected when she’s 50, the details of the loss are as clear to me as if I were sitting across the table from my mom. The family responses to the disease, for very different reasons, are very similar to the responses in our family.

In the last year, the disease has progressed more rapidly than I expected. Mom is worse off than I thought she would be at this time, but not as far gone as she will be. But this book helped me remember how much of her is still in there.

It’s actually quite heartbreaking, listening to Alice make plans for when she can no longer follow directions (hint, she can’t follow the directions).

In the last week I’ve had the honor to connect with two people who have recently (within the last year or so) been diagnosed with Alzheimer’s disease. One, a woman I have known from a distance as long as I’ve been alive, seemed like her old self today when we connected again. We talked about books and her children and my parents. We hugged and promised to see each other again. The other asked me a dozen times during a one-hour appointment if I had ever met someone I work with. He introduced me to his dog again and again.

In both those people, as in my mother, the brilliance still shines through. The caring is there. The love is there. They are, still themselves.

I do a disservice to my mom when I forget that, when all I see is what is gone. She’s still my mom.

Still.

Brains on Alzheimer’s

Each time I think I’m going to do a warm, thoughtful, engaging post on balance (and I have a few in my drafts folder, so they’re coming) I’m struck by the thing, the one thing, that is the focus of my life these days. I’m struck by my mother’s dementia.

The image I have is of yarn. My mother was an avid craftsperson, knitting and crocheting through most of her life. She made amazing quilts that, as my niece said, felt like a hug. A lovely woman visits Mom a couple times a month, and they work on yarn projects. Mom’s hands remember what to do, even if her brain can’t quite make the connection. But when she is left alone with yarn, she twists it and knots it in ways I can’t fathom. The smooth balls of yarn, they’re your brain. And like the broken eggs in those old anti-drug commercials, the twisted mixed up yarn, that’s her brain on Alzheimer’s.

If I couldn’t laugh, I’d cry.

Oh, wait, I do cry. I cry most of the times I leave her. I cry when I’m running, or lifting weights. I cry after meditation.

And I continue to search for balance. But then I spend work time calling doctors, arranging for care, trying to sneak out to visit her, or interview a nurse. Don’t get me wrong; I know we’re lucky our mom is in a safe place. I’ve gotten to know some of the staff members, those folks who help her at 3 a.m., those folks who arrange to bring her coffee at 5 a.m. and a cup before bed. Those are the people doing the work that I can’t.

I can’t do it. I can’t sacrifice my life, such as it is, to her. Even though, even especially because, she once did the same for me. She once lived her life for her children. And as her child, I feel guilty that I’m not living my life for her. I have thought about moving her into my little home. I don’t know how to make that work. She needs more time, care and attention than one person can give. I would have to quit my job and still she would have to go to a day care place.

When my brother refused to let our mom return to his home after a visit to Wisconsin, I considered having her live with me. Then, she was still well enough that we could have made it work, but I still would have had to change jobs at the very least, work part time and hire outside help. Now, even the social worker says it’s not possible.

And yet, other families make it work. Is it because they pull together? Sharing the load makes the load easier to carry.

Those pieces of yarn, those balls and then the tangled masses, they feel somehow like life. Like the pieces that if only I could untangle them, I could fit all the pieces together. I could make this work. I could, somehow, make this work.

This just doesn’t work.

Worship in community

The other day I told a new online friend that I like mediation and yoga and they serve much of my spiritual desire, but “I like worshipping in community.”

So last week, standing in the Seattle/Tacoma airport, I saw the people worshipping. And I don’t mean this to be sacrilegious, but we all stood, gathered around the luggage carousel, watching and waiting for the gaping maw and the black conveyer belt to disgorge our belongings. Like waiting for the oracle, to tell us the truth of our very selves.

My truth, this trip: I took too much stuff, trying to pack for work and for play.

I thought it was funny, that’s all. But no music. Best part of worship in community is the music.

More 2-mile opportunity

So, I’ve been short of milk a few times, and I think ordering the pizza to be delivered from the place that’s less than 2 miles probably shorted the spirit of my little challenge, but this does have me driving less. How much less? I’m not sure.

Certainly, I’ve lived up to my more than 2-year-old resolution to take the bus at least 50 percent of the time more in the last two weeks. (I like the bus. I don’t read in moving vehicles, so I listen to podcasts, mostly of Marketplace.)That’s driving less. And I’ve bundled errands, as we’re all taught to do but most of us don’t really follow through.

I’ve walked to both the hardware store and the bookstore, sometimes combining errands with walking my dog (the co-op is very specific that it does not want said dog left unattended while I shop — insert sad face here). I walked to the credit union at lunch, although that’s not new.

But I have certainly not been perfect about this 2-mile thing. I drove to the chiropractor the other day, because walking would have made me late. I’ve not yet walked to either the local grocery store or the co-op, although both are within my limit. Maybe it’s because I’m living out of my freezer these days.

This all is a journey, I know. I am not supposed to be perfect, but I wanted this to be more seamless. And we haven’t even gotten to the cold weather during which I expect a challenge.

Two miles. It’s not that far. And that walk begins with a single step.

Grasping life

My niece posted a link to Hands Free Mama on her Facebook page this past weekend. She said all parents should read it (it’s the one called “How to Miss a Childhood“) but it really hit home for me as well.

I’m not a parent. But I began wander through this blog, connecting her message with the way I treat my mom, my friends, my dog. I do talk on the phone when I’m walking my dog, although not all that often. I do talk on the phone when I’m driving, too, sometimes. But I also check my phone when I’m with my mom or a friend, and that’s not polite.

In my quest to be more present, more engaged in the people around me, in my job when I’m at work, in the folks I love when I’m with them, I find that leaving the phone off and away from me is a good thing. My mom, who has dementia, doesn’t really grasp the cell phone anyway. For her, when she reaches me on the phone, I’m always “at home.” And when she reaches me on the phone, I want to be completely engaged with her, the same way I aspire to be when I am with her, even though it’s challenging.

This is part of the journey to balance, too, this letting go of technology and the hold it has on us. I’ve always thought I was pretty good about this, but I can do better.

My goal is that when you’re with me, I will be fully there, one breath at a time.