To My Mom On What Might Be Her Last Mother’s Day

When I crawl into bed and snuggle into her soft side, my mom smells of lavender. Each night either my sister or I spray a mist on her hands and face before we put her to bed, a ritual we have kept up since she was diagnosed with brain cancer early last year. Lying beside her is my favorite part of our nightly routine. When I walk into her room after a long day I am tired, too, but as I wheel her to the bathroom I launch into stories about my day, or the funny things my young children have done. When there is extra time I often give her a hand or foot massage, though when I ask her whether she’d prefer me to rub her hands or cuddle in bed, she always chooses the latter, like I do.

Mom (right) and her sister Wendy in Hawaii in the sixties.

Mom (right) and her sister Wendy in Hawaii in the sixties.

 

I often think of the day, several weeks before she was sent by ambulance to the hospital, when I took her calloused feet in my lap and gave her a foot massage. “Why don’t I do this every time we hang out?” I wondered aloud, and Mom just laughed. I knew why, though. My mom wasn’t fond of being touched. I rarely got a hug when she left my house after our weekly lunches. When I said, “I love you Mom,” her most common response was “Mmmhmmm” as she walked away.

 

She doesn’t say much these days, as the tumor has taken up space where her language is formed, but there was a time – not so long ago – when I couldn’t get her to stop talking. Everything got her riled up or excited to solve the puzzle of the complicated symbols and messages that swirled around her. After she was diagnosed with paranoid schizophrenia when I was sixteen, her behavior made sense but her diagnosis helped little else. She became homeless after she threatened her mother with a knife, and remained that way until eighteen years later, when a fellow resident at a woman’s shelter found her lying on the floor unable to move her right side.

 

Mom, before her diagnosis.

Mom, before her diagnosis.

Rushing to the hospital this time, as a mother myself and as the daughter who had moved to Seattle to help Mom get medication and housing, I found myself at the last stop on a decades-long quest for peace and security: a hospital bed, a diagnosis that afforded little time, and somehow, a place to call her own, not in the way I had imagined, but at a non-profit Lutheran nursing facility that gave her a home when no one else would. When I spend time with her now I walk or drive the half-mile to her home and I know just where to find her, in room 158-W, with a view of the courtyard. She’s on a small dose of an anti-psychotic since her hospital stay, which tames the worst of her delusions. When we walk around the block, or read together, or sit and watch the kids run circles around us, it’s a much less complicated interaction. The paranoia that used to consume her and rule our conversations is at bay, and there is room for the real Judy to emerge. I see who she must have been as a teenager and a young woman: she is sweet, and funny, and she loves to laugh at herself. Her concern that we are safe is no longer all-consuming, and she has room to accept hugs and fist bumps from the young kids to whom she told outlandish stories once upon a time. The other day, when a troubling thought was racing around in her head, when she spoke of “Schwarzenneger’s race cars” and “LA police,” I helped her try to get hold of her struggling mind. “Mom, you can just say, ‘I love my children,’ over and over again if you want to stop thinking about that.” She stopped muttering and looked at me with surprise. After I leaned in to give her a goodbye hug, she motioned with her hand for me to lean in again. In a clear, strong voice – so unlike the tinny one she had used as she tried to expel her dark thoughts – she spoke words from the core of who she is. “You have blessed me with so many blessings.” She squeezed me tight and I teared up as her words filled again the empty space left when her illness took her away from us. I am awed by this woman with a will of steel who endured things that would have crushed me. And I’m so grateful that at the end of her life, she can put aside the fight to survive, and share that part of herself that eluded us all for so long.

Happy Mother’s Day Mom. I’m so glad you are mine.

A Few Dollar Bills and a Diagnosis

In my dresser’s top drawer, tucked away inside a plastic bag that looks like it’s been through the wash, two dollar bills lay folded together. I cannot bear to put the bills in a more appropriate location, or use them for their intended purpose. Sometimes, when I catch sight of the bag, tears spring to my eyes.

I gave these dollars to my mom as she left my house on a Monday in January, as I always have. “Here’s your bus money,” I said, noting how strange it all was, yet how accustomed to it I had become. It was part of our ritual.

The next afternoon I received a surprising, but not unexpected call from Mom’s social worker. Early that morning someone had found her on the floor having difficulty using the right side of her body. She’s had a stroke, I thought. I was sure of it. A few weeks earlier, as she sat on the couch in our back room, she tried and had difficulty touching her right fingers together. I tried to get her to see a doctor, but she wouldn’t hear of it. Her social worker and I had been keeping an eye on her ever since.

By the time my husband had made it home to be with the kids, Mom had been in the hospital for over eight hours. Her face lit up in a smile when she saw me as I rushed into the room, but she was tired and having trouble speaking from what turned out to have been a seizure. Her tongue was swollen and purple from biting it during the ordeal.

Over the next few days a picture unfolded of what was happening inside her brain. “She has a large mass over her left frontal lobe that is pushing into her corpus colossum,” a young, but kind resident doctor told me in the bright hallway outside her room. “We’ll know more tomorrow after the neurosurgeons examine her scans.” As I spoke with family members about what a “large mass” could possibly be, all kinds of hopeful thoughts were offered: perhaps it was benign, perhaps it was a massive blood clot from her concussion twenty years before, perhaps, perhaps, perhaps… The neurosurgeon who came to deliver the news and to show me the pictures of her brain did not have such good news.

“This is a very nasty tumor,” he said, gently. “The life expectancy with tumors like these is between 18-36 months.”

I didn’t hear most of what he said after that. My brain was filled with one thought: if only it had been a stroke.

*   *   *

After wrestling with the doctors not to send her back to the street – which they intended to do the day after we learned her diagnosis, but that’s another LONG story – my mom consented to brain surgery to biopsy the tumor, to a small dose of an anti-psychotic called resperidone, and rested in the hospital for several weeks while we tried to find her a place to stay. “It’s incredible what we’ve been able to accomplish,” my sister rightly said, when I relayed my challenges with getting her housing, the final linchpin in taking care of her. ” If she wasn’t dying, we’d be jumping for joy.”

As we sought out a place for my mother to live, we met wall after wall. Everyone within the Seattle area rejected her because Medicaid is her only insurance and Medicaid pays very little. We were looking at sending her hundreds of miles away, which I couldn’t bear, or taking her into my home, which sounded almost as impossible. And then, a woman at Columbia Lutheran Home, just blocks from my house, said, “You’ve touched my heart. Let me see what I can do.”

Today, almost three months after her diagnosis, my mom is living in a very nice facility – all day long – and just was admitted to hospice care. These days, I would give my right arm for eighteen months, but my mother is unlikely to see her sixtieth birthday this August. Her Stage IV Glioblastoma, the most aggressive form of brain cancer, is beginning to get the upper hand. However, my mother, who has endured heartbreak and hardship for most of her adult life, remains sweet and kind. She is grateful for the chance to see us on a daily basis, and so are we. Her gentle, sweet spirit has shown up during this time of great challenge, and we couldn’t be more grateful for the chance to tell her the things that we’ve always wanted to say, but that didn’t always get communicated in just this way.

We love you. 

We are grateful for you. 

We are so, so glad you are my mother. 

And, always, underneath:

God, how we will miss you. 

A Home For The Homeless In My Neighborhood

There’s a new affordable housing facility going up in downtown Ballard less than a mile from my house. The Nyer Urness House, built by Compass Housing Alliance, will provide eighty apartments for formerly chronically homeless men and women. I received a letter the other day asking if I would help welcome my new neighbors by sponsoring an apartment for $1,000, which will be used to purchase needed supplies for one apartment and also help furnish the common rooms.

Nyer Urness opening Spring 2013

Nyer Urness opening Spring 2013

I know about this housing facility because my mother’s social worker at her current home, a shelter downtown, put her on the list to receive an apartment. My mother has lived in shelters for almost twenty years, usually in a large room with a designated bed and locker where she can keep her things as long as she shows up every night at 6PM when they open the door, and leaves early in the morning when the close the shelter for the day. Because my mother is homeless, most days she walks around downtown. If she has bus tickets she may ride around for a while, or hang out at the women’s day shelter. When she was receiving benefits before they were cut and eventually ran out (she refused to sign the papers that would continue them because of delusions about her social worker), she used to take the ferry to Bainbridge Island and peek in the shop windows. These days she complains of her knees and the cold, and I do what I can to help ease her discomfort, but her illness often prohibits her from taking the offered help.

In a few months all of this may end for my mom. She’ll still be schizophrenic, but she’ll have a roof over head, a caring community, and her family close by. I can only hope and pray she will take a gigantic leap and try something so, so new by moving away from the familiar night shelter environment. I don’t know that this will happen, but I do know that someone’s mother or father or sister or brother will be moving off the streets in a matter of months. And I want to be part of making their new homes welcoming and inviting. If everyone who was unable to give $1000 gave a small amount, we could, as a community, help bring real compassion into the lives of those who are taking  a new and perhaps scary first step into a place they can call their own. A place where they can sleep in, store their things without a padlock, watch the program they want to watch, or read a book without listening to someone else’s fight. Where they can be home.

Join me, by donating here. (And would you let me know that you did? I’d love to try to pool the amount so we can put up a plaque outside one of the apartments to acknowledge the gifts…perhaps from Ballard Moms and Dads?)  You can also donate household items through a Target registry, also available through the link.

Thank you. So much.

 

Eleven Learned Conversation Skills

Laconic [luh-kon-ik]: using very few words.

I learned the meaning of laconic after I met my husband. Naturally less talkative, he marvels how I can work a room. But this was not always the case, let me tell you. For years I was painfully shy. Being outward focused rather than intensely nervous is a dramatic shift in my personality that started when I learned that God values me intrinsically, and feels the same about everyone else. Even the people that scare me.

Talking to new people is a skill I’ve been at pains to develop. I still get nervous (and have plenty of awkward conversations), but I’ve learned a few things about making small talk with people I don’t know.  After  a recent experience at our daughter’s school, my husband asked me how I learned to do it. Here’s what I came up with, the incomplete list I try to remember in these settings. I hope it helps those of you who feel challenged by these situations, too.

1) Remember you are not alone. Virtually everyone finds new situations intimidating. Your job is to focus on putting other people at ease, not your own fear.

2) Ask questions. A sure win: the subject people most enjoy discussing: themselves or their children.

3) Smile. Keep your head up, eyes off the floor. If you need to, look at the wall, just don’t stare at the floor!

4) Enunciate! I was talking to someone at a function like this and I had absolutely no idea what he was saying. I felt sorry for him because he was so shy, but that’s not the way you want to be remembered.

 5) Know your opener, and focus on common ground if you can. Practice at home or on the way to the event. It will be much more natural that way and you’ll feel more at ease.

6) Know your exit and find the right lull (before things get awkward!). For example: “It’s been great to talk to you. I’ve been meaning to ask —- a question. Have a great evening.”

7) Take the initiative. Be the first to say hello. I was afraid of people and awkward silences for so long that I spent years in the corner, feeling stupid and pitied. It was excruciating. Now, even though it’s still scary, I feel more in control and less awkward.

8) Speak with confidence. I still feel expendable in unfamiliar settings with confident, accomplished people. I’m just a mom and someone trying to be a writer, I tell myself. Then I remember what my therapist told me: Fake it ’til you make it. You are a writer, blogger, mother, entrepreneur, waitress, whatever. You have expertise others can (and want to) learn from.

9) Exercise your curiosity. Rather than spending an hour feeling awkward and uncomfortable, I now take the chance to learn each time I meet someone new. I view it as an opportunity to connect or help someone else feel at ease.

10) Don’t get derailed by setbacks. I often can’t get my sentence out right. I stumble and stammer. Then I smile and laugh at myself. How big of a deal is it, really?

11) Have fun! If you reorient your thinking to see functions as an opportunity to connect and learn, you – and everyone around you – will enjoy themselves. It’s true. After all, you can’t just hide at home forever.

When You Want Your Mom

My daughter, Quinn, started kindergarten a few weeks ago. Like most kids making this challenging transition, we’ve had some rough days. And we’ve had some that were downright awful. Like today.

While my husband and I tried to get her dressed – forced her, really – she was kicking, screaming, hitting, crying. Finally, I just left the house – without shoes, the real sticking point – and carried her the six blocks to school. We were late, of course. Sylvia, our crossing guard, noticed. “Bad day?” she asked, as I led Quinn across the street, her arms folded tightly against her chest. When we arrived in her classroom the teacher noticed, too. “Hi Quinn!” she said, in her cheery way, and came over and put her arm around Quinn’s shoulders. As I walked home I fought tears. I know lots of people go through this, but I felt alone and at a loss. I worried that Quinn needs help I am not able to give her. I worried she will anxiously move through her day, like I did through so much of school. Walking back toward Sylvia, I determined to maintain my composure, to not let her see how hard this is.

And then, halfway home, I let the tears fall. There’s a feeling I get when things go sideways, and I didn’t push that away either. I wanted to talk to my mom, wanted hear her reassure me in a motherly way that it’s all going to be okay. Knowing I’d never be able to do that made me feel even more alone. Rather than wallowing in my misery, as I usually do, I decided to do the healthy thing instead: I called my sister. And my sister suggested something else I’d been trying to avoid: she suggested I ask for help, that I tell the teacher what’s going on and enlist her aid. So, reluctantly but hopefully, I did. Kicking and screaming, but I did.

Swimming In The Kiddie Pool

Last week, my mom came over as usual on Friday afternoon. It had been beautiful all week and really warm. There was even an excessive heat advisory that will make you Midwesterners laugh: it was going to be 94 degrees for two days in a row. Mom, being the smart lady that she is, brought three swimming suits with her in a small black embroidered purse. She knows we have an alligator pool we like to inflate when the temperature rises.

Mom headed outside after lunch and pulled the pool toward the middle of the yard, next to the adirondack chairs. Mom is not one to make her needs or desires known so when she asked where the pump was so she could fill it up with air and then with water I moved quickly, smiling all the while. Like any woman who hasn’t worn a suit in years, or even a season, she tried on all three before she settled on a cornflower blue. We sat out together in the hot sun while the kids played with cups in the cool water. Within minutes my 20-month old gave up on splashing his sister and came over with cupfuls that he poured down my legs. “Mommy turn, Mommy turn,” he said, in his husky voice, as the chilly water ran down my knee and over my foot.

It only took a few minutes to get hot enough to want to stand in the pool. When the kids exited to play on the slide Mom stood and then quickly sat down and dunked her body in the pool that was just a few inches deep. It was enough for her. It had been at least 15 years since she’d put on a bathing suit and sat around in the backyard on a hot afternoon.

I Can’t Tell You

I can’t tell you what it’s like to hear voices. But I can tell you what Mom’s face looks like. How she stops and stares, and listens as if someone were whispering in her ear.

I can’t tell you what causes schizophrenia (and neither, definitively, can the researchers), but if the whole world is made up of spiritual beings, as I somehow come to believe not long ago, then I do not find it hard to imagine that the sinister, frightening, self-destructive things that my mother hears do indeed come from an enemy of her body and soul. I know, because I live in the twenty-first century, that this destruction is a disorder in the physical matter of her mind.

I can’t tell you what goes on in my mom’s body when she hears voices, but I can tell you about the time that I heard the voice of God. I can tell you how I wondered…could this be it? Could this be the beginning of the end? But a greater part of me knew, in that way you somehow just know, that it was indeed the voice of something other than myself.

I can’t tell you if my mom ever wondered if she was losing her mind. If, in her early twenties, the voices that speak to all of us suddenly got louder and more persistent. But I know that as I began to pray, to tune into the spirit within, I wondered which voice, among all the noise that clamored around in my head when I was quiet enough to listen, was the true and lovely voice of God.

I can’t tell you if my mom will ever get well, but I can tell you what it’s like to be her daughter again, and to believe there is reason to hope that my presence in her life makes a difference. To believe that it gives her entry back into the world that was taken from her so long ago, the world where the true and lovely voice of God whispers to me: love her, no matter what – even when it’s uncomfortable, even when it’s scary, even when it’s frustrating. Love her, and be with her, and she will be yours again, and you, hers.