What Grace?

A friend of mine was talking about the painful process of figuring out how to help her seriously ill father while also being a good parent to her young children and pursuing a rewarding but demanding career. She works in a leadership position where everyone relies on her to set the tone, and model the highest standards of integrity and compassion, regardless of how chaotic and painful things feel inside.

“I hope that I can help my family cope with all this with as much grace as you did when you were helping your mom,” she said.

“Really?” I asked. “I seemed graceful? I was NOT graceful. I yelled at airline employees and insurance company representatives who are paid minimum wage for people like me to take out my frustrations with their stupid company on them. I kicked my luggage and cried uncontrollably next to the turnstiles at the airport. I yelled at a guy at dunkin donuts for not honoring a coupon. I was short with my kids, I slept in all the time, I drank too much. I sobbed in my neurologist’s office when they wouldn’t give me antidepressants to help my migraines and anxiety. They weren’t even saying I shouldn’t go on them -- they just said I should ask my primary care doctor for them. I was a complete mess, most of the time. I can’t believe you thought I was showing any grace.”

She looked so relieved. “Thank you for telling me that,” she said.

My friend is a picture of grace. Impeccably dressed, she exercises regularly and parents with patience and thoughfulness. She excels as a leader and seizes opportunities to build her career and develop an even more impressive professional presence. She lives in a stylish home that reflects her family’s distinct identity and taste. She travels internationally, and she writes with a skill that could make you weep. She is a good friend.

When my mother was dying, I would see her, and tears would well up in her eyes as she listened to my story. I would tell her I felt shredded inside -- torn and pulled and stretched thin and absolutely useless to everyone and yet required to be helpful and competent always. I ate unhealthfully and stopped going to therapy and ignored every bit of helpful advice anyone gave me about taking care of myself. I felt disconnected from my kids, and when I was with them I worried I should be with my mom. When I was with her, I worried about how my kids were doing, and felt guilty for the burden I was imposing on my husband by being away. I felt like a complete and utter mess. Yet my friend thought I’m the one who had it together.

Why do we think other people handle things so much better than we do? If we like someone, especially, we think that because they aren’t walking around with mascara running down their face or hair matted from forgetting basic hygiene, that they have their act together unlike we do (even though we’re basically showered and coherent most of the time). I know a few folks who struggle with severe depression, and even these folks seem graceful and kind -- they may not be career go-getters -- they may hold back in some areas, but they love their kids and take time to make their children’s lives more joyful. When they leave their house, they look good, even if they are feeling awful.

My friend and I, and many of us, it seems, have made the same mistake of thinking we must be failing because boy, does holding it all together feel hard. But the truth that strikes me as I think about my friend is that it feels hard because it IS hard. Life is hard. People we love will suffer, and they will die, and we will be powerless to stop it. We will get sick, our bodies will hurt and grow tired, and people will do things that make us angry. There will be injustice beyond our power to stop, and it will directly hurt people we know. Our children will experience pain -- they will learn that life is painful. Adversity will enter our lives in a messy jumble that we cannot pull apart.

We don’t get to “take things as they come,” because sometimes things come at us so fast, and from so many directions that we get knocked to the floor. In my own life, within the past four years my younger son received a potentially life-threatening diagnosis, his brother was diagnosed with a developmental disability, my husband was laid off from his job, my career maintained a stressfully amorphous quality, and then my mother was diagnosed with a debilitating terminal illness, ALS, from which she died just 14 months after the diagnosis was confirmed.

This was all very, very hard. And the whole time, I felt bad about how I handled it.

One time, my sister and I were driving a bright red rental car from Chicago, where we had each flown in, to Macomb, Illinois -- about four hours away. We were talking and venting, laughing and getting choked up, scheming about how to remain a team as we helped our mother and her partner face her awful illness. We were the only two who knew what it was like, what we were going through -- the difficult dance of being dutiful daughters while pushing our brilliant and stubbornly independent mother to allow others to help her when she needed it.

Lost in conversation, I lost track of my speed until I saw the police car’s lights and heard the siren. I pulled over to the side of the road, and I started to cry. I told the officer, “I’m so sorry, I lost track of my speed -- we are driving to see our mother, who is dying.” My sister tried to speak up for me and tell him I don’t usually drive like that, and he snapped at her, “Don’t tell me how to do my job,” taking my license and returning to his squadcar.

We sat in stunned silence, waiting for him to return. He brought back my license and handed me a written warning. “I”m giving you this warning NOT because of what you said, but because you have a clean driving record,” he said. “MY mother goes to the hospital every single day because she is also sick,” he said, “and I don’t USE HER ILLNESS as an EXCUSE for BREAKING the law.”

“Thank you,” I gasped, “I’m sorry,” I repeated, beginning to shake with anger and shame. My sister and I got out of the car to switch drivers, moving swiftly, startling him in the process. He stepped back, then said, more kindly, “I hope your mother gets better."

“SHE WON’T,” we both shouted, slamming the doors; my sister pulling out onto the highway and driving away at an appropriate speed.

This is what we do to ourselves. We lecture ourselves that the struggles we face are no excuse for failing to live up to our idea of how we are "supposed" to be. Why do we do that? Why do we act like an arrogant cop, ready to bust ourselves for making mistakes or having moments when we lose ourselves in our emotions? Why do we police our own grief for any sign of weakness or imperfection?

I also wonder why we assume everyone else is ok. When my mother was facing her illness and I was traveling to see her at least monthly, then every couple of weeks, other people would open up to me about the burdens they were carrying. Most of my coworkers and many of my friends struggled to be dutiful children to aging parents who were starting to decline in health or mental capacity. Many of my friends have children with learning disabilities, allergies, or health concerns. Friends have crappy bosses, or more bills than they can pay; I have friends who’ve had cancer or lost a spouse to illness or accident.

None of us are full of grace all the time. None of us is spared of the burdens of living and working and loving who we love.

Instead of policing ourselves, we should spend as much time as we can commisserating, gossiping, sharing stories and laughing. We should catch ourselves being kind, notice that we are coping, reward ourselves for making it through the day instead of punishing ourselves for the effort it takes.

“That’s life,” the saying goes -- often as a way to get someone, for instance a sullen teen-ager, to stop complaining. But there’s another way to say that: affirmatively, as an acknowledgement that yes, this is hard, and this is how life is. This is life.

A saying I like better is: the only way forward is through. Stumbling clumsily, with jagged edges and shredded patience, the grace that we show emerges simply from our continuing to go on. We get up in the morning, we show love to our family, we work and complain, we sob and we laugh. That’s life.

Remembering my mother

I think about my mother every day. I know that the people who loved her and were loved by her think of her all the time, too. For those who were unable to attend her memorial service, I wanted to share some of the images, music, and words from that day.

You can read the obituary that Phyllis and I wrote for our mother here and here. There were several news items on WIU's website and listservs and facebook pages of feminist organizations helped to spread the sad news.

We held the memorial service at the WIU Multicultural Center. My mother had been an active supporter of the creation of a welcoming home for the Gwendolyn Brooks Cultural Center, Casa Latina, and the Women's Center. My mother and ten other women contributed towards the installation of a stained glass window in the library/lounge of the Women's Center, "Honoring our Mothers."

Our dear family friends the Howds, Nulls, and Diehl-Earlies helped us to select the artwork and set up the space, along with my friend Parisa Parsa, who officiated the ceremony. Phyllis and I chose to have only roses for flowers, and we all worked together to create memory boards filled with pictures and to select pieces of my mother's artwork -- her collages and a few decoupaged items. We also displayed the photograph from the Women of Western Centennial Phographic Exhibit.

At the welcome table we placed a small vase of roses, the programs, a photo of my mother with Phyllis and me, a guestbook and a box filled with rubber bracelets embossed with WWPD -- which stands for What Would Phyllis Do? This was a comment that so many people had made to us during the week following our death. Many of us, including Phyllis and I, felt lost without her.  We wanted to ask her advice on what to do.

Of course, it's intended to be funny, too, because my mother was often very forceful in her advice-giving and could laugh at herself for this trait while still insisting that you listen to what she was telling you. Anyone who reads this and would like a bracelet, email me your address and I will send you one.

Jim chose the opening and closing song -- they were both songs that my mother would interrupt conversation for, telling Jim to turn up the volume so we could all listen.  When we sat drinking wine and deciding on music for the program, Jim put this one on and we all sat quietly, the tears beginning to flow. We knew this was the one to start with.

Rebekah DelRio - Llorando

My Uncle Patrick then shared his Eulogy. We had asked him to share some memories about what our mother was like as a young woman -- where she came from. Patrick's memories and images truly captured just how cool my mother was.


Phyllis read her Eulogy next, in which she captured our mother's thinking, her beliefs, and what she stood for personally and professionally. She chose "American Tune," to end, capturing the spirit of my mother and giving us all moment of reflection -- a lullaby to comfort us.

Eva Cassidy - American Tune 

 Next I read my Eulogy, attempting to capture my mother's role in so many lives as a generous and caring source of strength, comfort and good advice.The song I chose to follow my words was "Nobody Does it Better," and yes, it was supposed to be funny. I also can't imagine who could possibly replace my mother's sage advice and ability to know how things should be done.

Carly Simon - Nobody Does it Better

Jim spoke extemporaneously, thanking everyone for coming and explaining that the music we had been listening to were all important to my mother and had a connection to my mother. They were songs that my mother loved, or songs that made us think of my mother. He expressed how much it means to see so many people who love her like we do.

He then asked everyone to listen closely, and asked for the volume to be turned up, so the music could fill the room.

At the Four Corners with Jim

Philip Glass - Forgetting

Parisa ended with a prayer, and we collected ourselves and shared tears and hugs over refreshments provided by our friends. 

Jim's kids returned to the house and set out a beautiful reception for everyone to return to when we were ready to leave the memorial.

It was a day filled with love and I thank all who drove miles to be there, who shared words and hugs, and who made donations in my mother's honor. 

In total, approximately $2,000 was donated to both the McDonough District Hospital Hospice and the WIU Women's Center, and around $4,500 was donated to WIUM Tri-States Public Radio.

My mother's name has been added to the Memorial wall at the hospital, next to my father's. We also received notification of many donations to the ALS Association or Les Turner ALS Foundation.

The faculty senate at WIU passed a resolution in mom's honor, and I recently learned that she had been named Professor Emeritus, which I had not realized. According to her colleague Janna Dietz, an undergraduate political science paper will be awarded in her name beginning this year and her friends and colleagues are working toward a named scholarship that will honor her teaching contributions. 


It's an incredible comfort to see all of these memorial tributes honoring my mother and we are blessed to be surrounded by such love.  I hope that these remembrances and images are helpful for those who wish to feel part of that day of remembrance.

Holding

I've been thinking about the phrase, putting my life on hold. 

My mother is in the end stages of ALS, aka Lou Gehrig's disease. It's as awful as you think it is. There was a time period where we thought it was ALS, then she was told it was Multiple Sclerosis, and we were like, crying tears of joy and relief. It's just MS, thank God! But then she got a third opinion. Doctors hesitate to issue death sentences and therefore hesitate to be definitive with this particular diagnosis, but it was confirmed to be ALS.

My mother is hilarious. When something good happens to her these days -- like she got a big tax refund because she had thousands and thousands of dollars in deductions because of all of her medical expenses -- she smiles and delivers her favorite punchline, I'm so lucky. 

Having an awful illness really does make you courageous. It's something people say, oh she's so courageous to battle this disease. If you're on the inside, part of you cynically thinks, well, what else is she going to do, give up and die? But then on the other hand, it's probably true that we human beings do have a lot of courage. The simple fact we don't give up and die proves it. So yes, my mother is courageous. 

The frustrating thing of course is that I didn't need this stupid, awful illness to show me that -- I already knew that from the way she has always lived her life, a loud-mouthed, opinionated, brilliant thinker who challenged the utter stupidity of prejudice in countless ways as a mother, teacher and small-town activist. She raised two feminist daughters who believe that our identities, happiness, bodies and minds have value -- no small feat in our culture. 

I'm 39, and I think about the fact that she finished her PhD after 40. Who does that? Who believes strongly enough in themselves to finish college *after* they have kids, then goes on to pursue a PhD in their 30s -- finishing just as her kids enter adolescence? Who has the self-confidence to agree to pause her tenure-track to apply for an interim Dean position, when the University President takes notice of what an outspoken and kick-ass leader she is among the faculty? Then, accepts the permanent position, making her the first woman Dean of the College of Arts and Sciences at Western Illinois University. Then negotiates an awesome golden parachute during a later regime change, securing a cozy retirement for herself and showing the rest of us "this is how it's done, ladies." 

Who does that? My mom.

So, I've put my life on hold to help care for her. I took a formal leave of absence from my work, after calculating that we can survive on Kevin's salary for a few months. I spend about equal amounts of time with my mother and her parter in Illinois, and with my family here in Cambridge, doing my best to keep up with the emotional, educational, financial, and therapeutic/medical needs of my children. Although traditionally I love my work, it's easy not to work when my mother's needs are so much greater. It's very, very hard to be away from my kids. I am grateful to have a husband who is a true life partner and keeps the homestead humming along while I'm away. I'm grateful that my sister and I can take turns so my mom and her loving, amazing partner Jim are less alone in this "end stage."

Everything is on hold. The kids aren't doing activities because it's too crazy to keep up. I'm not working, and don't volunteer for the kids' school if I can avoid it. All I do is focus on taking care of my children and taking care of my mom.

When I'm in Illinois, I spend a lot of time sitting with her while she sleeps. She sleeps in her power wheelchair because she can't reposition her body and her back begins to ache terribly if she tries to lie in bed. Her bed is adjustable, but her wheelchair is customized and has a lot more ways you can move. Among its cruel ironies, ALS paralyzes you but does not take away your sensations. You can think and feel as always. So if your foot has become twisted, you can't straighten it out. ALS has also robbed her of her ability to speak, so she makes noises and points - thankfully she can still move her arms - until you work out what is causing her pain and help her fix it. When you relieve her pain, she has to lie back, exhausted from the effort to communicate. 

It's ok to leave her alone while she sleeps, but it scares me to think of her struggling, alone, unable to call for help. Jim takes incredible care of her, but he needs to be able to leave the house sometimes. She is utterly dependent on others despite holding onto every last ounce of independence that remains: her ability to make decisions, to type a message on her iPad, to drive her wheelchair, to lift a strap on one of her medical devices. Jim, my sister, and I have to be a team - supported by friends, my sister's husband and mine,  the hospice nurses and my mother's neurologist - in caring for my mother.

I help her administer medications. She has some regular pills she takes, which we crush and dissolve in water and inject through her feeding tube. Feeding tubes sound invasive, but hers is just this little rubber hose with a nozzle on the end that goes into her belly, held in place by a plastic disc. I insert the end of another plastic tube into the nozzle, and formula flows through from a bag containing formula --  like what babies get but formulated for adults. She does feedings twice a day, napping and watching tv, or checking email while she is nourished. 

I help her get her biPap machine on -- her arms have recently grown very tired, and when she tries to pull the headstraps back over her head, sometimes she has to stop to rest because it is so exhausting. I help get the back part, and she positions the nose piece. Although she prefers to have Jim help her with her most personal bodily needs, sometimes I help her to use the bathroom. They installed an expensive, un-insured piece of equipment in their bedroom and bathroom which is the primary reason she is not in a nursing home: an electric lift. With the push of a button, we lift her in her sling out of her wheelchair and slide the sling along a track in the ceiling so that she can then be lowered onto the toilet, or between her chair and bed. The only time she gets into bed is to have a sponge bath. It's too hard for her to sit up on the shower chair they were able to use for many months. 

I also help her use these foam swabs to apply a medication inside her mouth, because she has thrush -- a yeast overgrowth caused by being immunocompromised and unable to swallow. It's also exacerbated by the nebulizer treatments she has to do to maximize her airways. I help her with the nebulizer and this thing called "the vest," which provides percussive rattling to her ribcage to loosen up secretions that build up because she cannot effectively cough.

I give my mother morphine and ativan to help calm her body and make breathing feel like less of a struggle. My mother does not want to go onto a ventilator, and her particular course of illness is causing her diaphragm to be slowly paralyzed, which will eventually stop her breathing. Her lungs are healthy; she could get pneumonia from aspirating liquids, but more likely her perfectly healthy lungs will become nearly motionless. She will stop being able to pull oxygen into them and expel carbon dioxide from them. She will go into a deep sleep and then she will die, and I will miss her terribly.

So, I have put my life on hold. Holding implies an uninvited pause -- an in-between space. Sometimes it feels like the opening scenes of The Graduate, where Dustin Hoffman is gliding along a people mover inside an airport -- in between terminals, in between college and real life, floating along, in between. Being on hold with health insurance companies and healthcare subcontractors has been a major activity of mine since my mother became unable to be understood on the phone, and it is sometimes frustrating. Some days feel like that, like when I'm sitting at home in Cambridge in my pajamas, wondering if I should be doing something different than watching reality tv and folding laundry. 


Other times, when I make my mother laugh,
or she types into her iPad something really helpful like, "I need you, but your family needs you too. Go home to them" -- I feel the other sense of hold. I feel held by her love, even as she grows weaker. And I know that my love -- and the love of her partner, my sister, and her dear friends -- are holding my mom. This cocoon that illness has woven for us blocks out the light, but it also sustains us.