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By John Mathew Smith & www.celebrity-photos.com from Laurel Maryland, USA – KennyRogers, CC BY-SA 2.0, https://commons.wikimedia.org/w/index.php?curid=75141455

Kenny Rogers died last night. He was my mom’s absolute, first-line celebrity crush. She used to joke that she would marry him in a second if he showed up at her door. Every time we got in the car to head out to cross-country ski, we would settle in to our prescribed places in her baby blue Volkswagen square back and she’d pop in a cassette and crank the volume. If it was a sunny day, we’d roll the windows down and sing along, she and I, while Katy stared out the window trying not to get carsick and Chris cranked up the sound on his Walkman to drown us out.

I don’t know that I was a massive fan of Kenny Rogers, but I loved the effect his music had on Mom. Before she and Dad divorced, he was pretty much in charge of the music for road trips – Doobie Brothers, Little River Band, those were his choices and I never really thought about whether or not Mom would have chosen them. But after the divorce, it was Kenny Rogers and Anne Murray in Mom’s car, belted out with feeling. I think I get it more now. After my divorce I had the sensation that there was more room in the world for my choices, that while I hadn’t disliked the music or trips my ex chose, I hadn’t ever felt fully free to stretch my limbs out in to space and freely choose what I would have preferred.

My ex and I had similar taste in music – we both grew up with Def Leppard, Led Zeppelin, The Cars, The Rolling Stones, Mötley Crüe. But I also loved REM, 10,000 Maniacs, Depeche Mode, and The Thompson Twins. As young adults, he drifted toward Green Day and The Killers, which I liked, but I stockpiled Indigo Girls and Annie Lennox and Pink as well, which he jokingly called “chick music.” It was really a seamless, unspoken understanding that when he was in the car, we’d listen to his preferences and when he wasn’t the girls and I could indulge ourselves with our girly stuff.

Right now, as mom is sequestered inside her assisted living facility, safely taken care of but also on hospice, I am resisting pulling up the audio of “If I Ever Fall in Love Again” because I know it will push me over the edge of this lump in my throat in to a crying jag and I’m not ready. I’m reserving it because I cry at least once a day now, and I find a sweet release, but this cry will be different. It will be the tears I shed for the loss of my mom’s voice. The only place I can hear it now is in my own head and I don’t want to waste it or erase it or cover it up with Kenny and Anne singing to each other. It will be the tears I shed on behalf of mom because she won’t know that he’s gone and couldn’t grieve for him. It will be the tears I shed for the idea that I might not see Mom again if she dies before they lift the ban on visitors. I want to sit with her and hold her hand one more time, maybe sing some lines from The Gambler to her and dig deep in to her reserves one time to see if her spirit can conjure up that feeling of freedom, wheeling along the highway, windows down, one hand surfing the waves of air as we laugh and harmonize on our way to play in the snow together.

“You got to know when to hold ’em
Know when to fold ’em
Know when to walk away
Know when to run…”

I have orchids in my kitchen window – five medium-sized plants that I’ve been gifted over the years that I coax in to blooming about once a year. I’m always surprised and rather pleased when the stems begin poking out from the folds of the thick, dark green leaves and I’ve somehow managed to keep them alive enough to show their gorgeous flowers at least one more time.

Someone asked me once how I do it – what’s the secret. She had never been able to get an orchid to bloom again and she was keen to understand.

Benign neglect, I said. Honestly. I keep them in the kitchen window not only so the cat and dogs won’t devour the leaves and unruly air shoots, but also so I remember to give them water every few weeks.

**

Today is my mother’s birthday and it is the second birthday in a row when I won’t see her in person or give her a hug. The second birthday in a row that she has lived in a memory care facility and been wholly unaware of her birthday. The second birthday in a row that I haven’t sent her a card or flowers because she doesn’t know who I am and she wouldn’t understand getting a gift and she doesn’t even know it’s her birthday unless someone tells her and then she promptly forgets.

The last time I saw Mom, I sat with her in the dining area and fed her soup and while I was terribly happy to be with her, I may as well have been one of the staff who feeds her. I focused on making sure I didn’t rush her, that she was eating enough, that the soup didn’t go cold and feel awful in her mouth. I talked to her in a constant stream of consciousness banter, much like I had with my children when they were little, sitting in a high chair, opening wide when they saw the spoon coming in. The woman who sat across from us fed herself and tucked napkins and plastic cups and other people’s spoons in to her bra and when we made eye contact she said, “you know she doesn’t understand you. She doesn’t know who you are.”

**

In the months when the orchids aren’t blooming, I wonder if this is the year they just won’t throw up those showy flowers. I fret about the roots that stick out like bedhead, but I know I can’t trim them or tuck them inside the pot. I have to let them reach out and take the moisture from the air, but they encroach on the dish drainer and bump in to the windowpane and I brush against them when I turn the faucet to hot.

About once a month I carefully lift each plant and place it in the deep kitchen sink. I dissolve the sky-blue crystalline orchid food in a gallon jug of warm water and drench each one in turn. The bark soaks up the water and I think about how orchids cling to trees in the tropics, absorb nutrients from rocks and soil and exist in nearly every corner of the planet. They are both delicate and ubiquitous. They need me and they don’t. Benign neglect.

**

Mom stopped knowing who I was nearly four years ago. Before that, we spoke several times a week on the phone about whatever was easy for her. The weather, mostly, because all you have to do is look outside to talk about that. There is no need to try and remember details or conjure up names, and even when she couldn’t think of the word for rain, she could still say “water falling from the sky.” I saved the last voice mail she ever left me, not really knowing it was the last one, but when I dropped my phone in a parking lot at the grocery store a year ago, it disappeared. I can’t tell you how sad that makes me.

I have a microcassette sitting in my closet that I know has her voice on it, but I haven’t listened to it yet. I found it last year when I cleaned out her bedroom, sorting through shoes and piles of old bills and cancelled checks and the cough drops she hoarded in every pocket, bin, and drawer she had. I don’t have a micro cassette player, but I took the tape so that I can one day hear her voice again. I can’t imagine what she was recording, but it doesn’t really matter.

**

A leaf on one of the orchids has gone yellow. They do that sometimes and it always makes me worry, but after a week or so, I carefully cut it away and just keep with the program. I wonder how they know to re-direct their energy toward the rest of the plant and let this one leaf wither away. I wonder if I’m making it worse by surgically removing the dying leaf or if I’m giving it a leg up. I like to imagine I’m helping.

I wonder if it’s silly to think of mourning that part of you that is no longer needed. Being sentimental about one path when what you really need to do is refocus your efforts in another direction might be a waste of time. If cutting this withering leaf off means that the plant can use that energy to bloom again, maybe it’s the right thing to do. I suspect plants don’t exist in terms of Right and Wrong and it’s only human beings that try to make meaning where there is none. This is just the way life works.

**

I like to think that Mom is beloved. The last time I visited her, one of the caregivers remarked to me that she really enjoyed being around my mom, that she was very sweet. I don’t know if she says that to all the families or not, but it made me feel good. Mom was always fiercely independent and hated asking for help, so when she first moved in to the care facility, even though she didn’t have the words to fight, she fought in other ways. It was hard for her to be taken care of, and I worried that it meant she would be a difficult patient.

I feel guilty that I’m not the one taking care of her, but I also know that she would be furious if she knew I were the one taking care of her. She hated asking me for help more than anyone, so I suppose it’s for the best that when I do go visit and sit with her, spooning soup in to her mouth, she doesn’t know it’s me.

Last weekend I went to visit my mom for the first time since she moved to a memory care facility. It’s been a long time coming and while I felt good about this particular place, it was also good to visit a few times over a few days to really absorb the feel of the place, the vibe of the caregivers, understand how it all works.

The first time I went, my dear friend Susan came with me. We’ve known each other for almost 40 years and she and Mom were friends for a couple decades, so having her there felt really natural.

Without oversharing, I will say that the first ten minutes or so were hard. There were some difficult things to witness and if you’ve ever spent time with a loved one who has Alzheimer’s, you might understand. Knowing this woman who was so independent and capable for most of my life, it is sometimes hard to acknowledge all that she has lost, how reliant she is on others to care for her.

Susan and I sat at her kitchen counter the following morning, talking about it over coffee, and I was reminded of how strong the pull is to DO something when we feel that way. And then, almost immediately, I was reminded of how grateful I am that I’ve cultivated the ability to not respond to that compulsion in the moment.

If you’re like me, you grew up being taught that any time you felt scared or uncertain or really sad, that was a call to action; that the thing to do was to assess the situation and put a plan in place to both alleviate those feelings and prevent them from happening again. Over time, I got really good at doing that – I became a control freak. I prided myself on my ability to anticipate potential disasters and keep them from occurring, mitigate the possibility that I would be blindsided.

When things happened that I couldn’t have predicted, I allowed myself a brief moment of intense emotion (flashes of anger, a crying jag, a mini panic attack), steeled myself, and moved on.

Eventually, that did several things:

  • fed the false notion that I am in control (and thus, that when disaster does strike, it’s because I am not smart enough to accurately predict or prevent it), 
  • turned me in to a DOING person instead of a FEELING person (which reduced my ability to empathize with others and to feel the full range of emotions human beings are designed to feel), 
  • exhausted my reserves because I was racing around putting out fires all the time – the vast majority of which weren’t mine to put out, 
  • reinforced the idea that it’s perfectly normal to avoid feeling certain emotions that are uncomfortable (and thus, justified that glass of wine or piece of cake or other unhealthy coping mechanism I utilized when I ran out of ideas about how to eliminate sadness/fear/anger),
  • put me at the center of the situation, as though my feelings were the most important consideration.
I became an alternately frantic and depleted half-person who was ultimately incredibly unhappy, despite all of my efforts to the contrary. 
But as I sat with Mom the other night, I reminded myself that difficult feelings do not compel me to act. Just because something is hard to witness doesn’t mean I have to DO anything about it. [Obviously, there are exceptions. If someone is in physical pain or imminent danger – yup, I’m diving in if I can.] And if I can ground myself in that moment enough to just acknowledge that what I’m experiencing is really hard and I’d rather not be feeling it, it helps me to focus my efforts. It may be that an hour or more later I will decide that there’s something I can do that will help – but those acts are purposeful, effective, and efficient. The way I used to handle things like that was scattershot – come up with all of the things I could do to cover any potentiality, make lists, call people, insert myself into the situation to “fix” things so that they wouldn’t make me uncomfortable. 
For the record, Susan didn’t like this conversation at all, and I totally get it. There is something seductive about knowing that we can effect change in any situation, especially ones that make us sad or scared or angry. And often we can be in control. For a while. Until we wear out. For me, learning to sit with painful feelings was a survival mechanism. I wouldn’t have lasted long at the pace I was going if I continued to think that I had to address every unpleasant situation I found myself in. I can say that my life isn’t any easier now, but I’m a heck of a lot happier and I believe that the things I choose to do are making a much bigger difference than before. 

Are you a person who sees the glass as half full or half empty? I like this exercise in perspective, because it’s an easy way to remind ourselves that we always have a choice. But I’ve recently begun to evolve my thoughts on this common allegory.

It started when I saw a meme (I know, memes. Ugh. But sometimes…) that said: It doesn’t matter whether the glass is half full or half empty. Remember, the glass is refillable. 

I was struck by how easy it is to get trapped into the idea that there are only two ways to see that glass. So often, we convince ourselves that there are only opposing ideas – black or white, right or wrong. We are all familiar with the sayings that begin with “there are two kinds of people: those who….” I liked the notion that the glass was refillable. I adopted it. I wrote it down. I told my kids about it.

To be certain, there are times when we want to fill that glass up higher, and when it makes sense to do so. When one of my daughters does poorly on an exam or school project, I want to remind her that there is always time to do better, that she can move beyond this difficult moment and learn from it and grow. She can be sad that the glass seems half empty, acknowledge it, and then make an effort to create a different scenario next time.

But yesterday, while my mind was wandering, I bumped up against the limitations of that metaphor. I am someone who struggles with control-freakishness but I have learned to use mindfulness to  lower my anxiety levels and my need to fix things. I realized that thinking about the glass as refillable moves me away from acceptance and creates the often false assumption that whatever situation I find myself in has to be changed in order to be tenable. I don’t want to lose the power of being in the moment with the glass as it is because I really believe that, often, this is where the magic of growth and learning come from. When we quickly try to move beyond our disappointment or discomfort with the current situation we find ourselves in (ie. racing to fill up that glass), we aren’t giving ourselves the opportunity to practice acceptance and really honor our experience in the present moment. Beyond that, there are unfortunately some things that can’t be altered or ‘fixed,’ and then what do we do with the glass?

My mom has Alzheimer’s and, as these things go, she is in need of constant care taking. That glass isn’t refillable. There is no way to reverse or fix what is happening. But, that doesn’t mean that I have to choose between seeing the glass as half full or half empty. Truthfully, it is both at the same time. It is half full and half empty. Yes, she unable to be independent and take care of her daily needs. AND, she has an incredibly loving husband who cares for her with love and affection and works hard to make sure that she is safe and comfortable. For now, that is the metaphor I want to embrace – the simultaneous existence of lack and abundance and their very reliance on each other in order to exist.

I had thought that, since I lost one parent already, there would be a sense of familiarity, of deja vu, of “been there, done that” when I lost the next one. Not in a dismissive way, just an “ok, I’ve got this, I know what to expect” kind of way.

Nope.

Dad was diagnosed with lung cancer. He told me early on, I was there to listen, I went down when he had surgery to remove part of his left lung and some lymph nodes, I let him bounce ideas off of me for future treatments. We weren’t certain of the timeline, but we knew he was sick and he was absolutely honest with me about how sick he was. It was excoriatingly, skin-flayingly, teeth-grindingly painful in the last week to watch him suffer. He knew me until the minute he died in my arms.

But Alzheimer’s or dementia or whatever the hell this is that Mom has is a completely different animal. She isn’t having some diseased cells cut away. She isn’t calling me to tell me about the latest drugs or therapies her doctor has offered. She might live for six months or six years. She has no idea who I am.

This one-sided relationship is teeth-grindingly painful in a completely different way. When Dad took a turn for the worse, it was obvious. Over a period of several days, he began having pain in his legs and hips and when they took x-rays it was clear that the cancer had spread to his bones. An MRI showed it was in his brain, too – the cancer cells lit up like the night sky I once saw in the middle of nowhere, New Mexico. From that point forward, we knew there was no rallying, no bouncing back.

Mom’s slide has been gradual except when it seems to leap forward, and there have been many times over the last year when she was almost able to snap out of it and recognize me and have a conversation. The cruelest part of that is that it gave me hope. It made me wonder how we could capture those lucid moments and prolong them, whether there was some magical drug that she could take that would clear the way for a return to herself. Those moments, when they are gone, are all I can hope for and envision, but they are much fewer and farther between and I know I won’t get a signal that tells me I’ve seen the last one. I didn’t get a sign the last time I spoke to Mom on the phone that said it wouldn’t happen again. I didn’t get a warning the last time she called me by name and knew I was her daughter so that I could savor it.

There is a part of me that wonders if I am a little bit narcissistic in my grief. A part that thinks maybe it shouldn’t matter so much whether she knows who I am, that tells me to just get on with caring for her the best way I know how without worrying whether she remembers I’m hers. Because somehow, I want to be special. I don’t want to be just one of another cast of characters who comes through to visit and smile at her. I want to be her daughter, not for any sort of recognition of my efforts, but because I mean something more. There is something about the reciprocity of a loving relationship that makes it feel whole. When I sat with Dad during his last days, holding his hand and telling him stories, even though he couldn’t speak, there was a familiarity. He squeezed my hand and his eyes danced during the funny parts, and his rough, calloused thumb rubbed back and forth against mine when I was being serious. We had a history that was fully intact until the moment he took his last breath and when I grieved for him, I grieved for all of it simultaneously, the loss of his body, his Self, and our relationship.

This time, I am grieving in stages. While there are parts of Mom’s Self that are still fully intact – her sarcasm and playfulness comes out sometimes with her husband – I have lost the history of our relationship as mother and daughter. She knows I am familiar, but she doesn’t know why. Our inside jokes now belong to me, even though she is physically still here. When we sit together, I can’t tell her stories about my kids or my husband because it confuses her – she doesn’t know these people, why am I talking about them? We can’t reminisce or look forward to sharing family holidays together or significant moments in the future because she isn’t coming to my girls’ high school graduations or weddings. There is a quality of suspended animation to it all, a sense that I am walking without a foundation beneath me.

I wish I had a succinct ending to this post. I usually am able to close the loop with some sort of insight, but maybe the fact that I can’t this time is an apt metaphor for how all of this feels right now – loose and unfinished.

“Love isn’t a state of perfect caring. It’s an active noun like struggle. To love someone is to strive to accept that person exactly the way he or she is, right here and now.” Fred Rogers

“Love is an action, never simply a feeling.” bell hooks

As a kid, I thought love was a commodity. Something that I could acquire if I only had the right currency. And I often felt as though I had hit upon the right combination of things to do and say and be, but, as with all other things we pay for and think we own, once I had it, I was forever fearful of losing it. Because if love is a thing not freely given, it can be taken away. I never felt as though I had the power in this particular scenario, which meant that I was always hustling to stay one step ahead.

Perhaps the trickiest part of this view of love was that the cost of it was different for each person I encountered. Mom seemed to need very little to bestow her affection on me until life became more complicated and she was single and raising three kids. Unfortunately, I equated anger and disapproval with a lack of love, as I think most kids do.

As I got older, I experimented with giving and taking away love as a way to get some control over my own life. At least, I thought it was love I was giving and taking away, but it turns out that wasn’t true. I recall attempting to punish my dad by ignoring him or being strictly businesslike in my conversations with him. I gave not-so-subtle signals by withholding physical affection and not making eye contact. But I never stopped loving him, and I never stopped wanting to know that he loved me. I just thought that we had taken love out of the equation when it turns out it was there in the background while we mucked around with each others’ feelings in an attempt to gain power.

It wasn’t until I had Eve that I became aware that love is not a thing in the sense of other things. It is not static or transferable. I cannot give someone else my love for them, I simply love them. Whether either of us chooses to recognize its existence at any given time is another issue. As for love, it is simply there. Available. Pulsing.

With Dad, the struggle came about when I chose to focus on what he owed me for my love. I resented the fact that I loved him so deeply and he wasn’t fulfilling his part of the bargain. He wasn’t wooing me with apologies and admissions and the honesty that I so desperately (thought) I wanted. I resented the fact that I (thought I) had to work so hard to obtain his love – get good grades, work hard at a sport and a job, be polite and ladylike – and that one small misstep put me back at the start like a game of Sorry. But when I had Eve, I realized that I had been wrong all along. There is nothing this child can do that would ever cause me to take away my love for her. It is not even possible. The fact is, I didn’t choose to love this child, I simply do. There are certainly times when I choose to ignore that fact, push it aside and focus on something she has done or said that hurts me, but the truth is, I am only hurt because I love her.

I recall reading a parenting book at some point that cautioned that parents should remind their children often that they are loved unconditionally, and for a while I went about my life believing that my parents’ biggest mistake was in not telling us that. I vowed to remedy the situation by telling both my children and my parents that I love them unconditionally. But these days I feel as though all love is unconditional. If I truly abandon myself to loving another being, I cannot place conditions on it. It is doing love a disservice to pretend that it is a commodity that can be earned or paid for. Perhaps the best part of all of this for me is the knowledge that love exists out there in the world in vast quantities. Regardless of my actions or accomplishments or physical appearance, I can access love at any time. That’s a pretty cool thing to remember when things get tough.

 

My mother loves animals, but none more than cats. There has not been a day in my 43 years that she has not lived with at least one cat, and while she doesn’t go looking for them, the strays always manage to find her and move in.

My grandmother hated cats. I don’t know precisely why, but despite the fact that almost all five of her children grew up to have cats for pets, she was disdainful of them and wanted nothing to do with them. Grandma loved baseball, teaching, reading and traveling. Cats, she had no time or love for. Until she developed Alzheimer’s.

My aunt and uncle had a house in the hills above Santa Barbara and one summer, shortly after my grandmother began really struggling with her memory, a wildfire ripped through those hills and burned their house to the ground. For an agonizing bit of time, the family looked for their beloved cat, Cecil. When they found him, hiding among the hills, safe and sound, Grandma fell in love with him. We were all astonished. This woman who, for sixty years or more, had loudly proclaimed her hatred for felines, suddenly found a companion in Cecil, an enormous orange and white tabby.

One of my favorite pictures of her is this one, proudly clutching her new friend as he barely tolerates it.

Last weekend when I was at Mom’s house, I noticed her fixation on her cats. They both enjoy being outside during the day, and when we were at home, Mom got up every five minutes or so to peek out the windows or open the garage door to check on them. I was so taken aback by the size of her favorite, Moses, that I asked her if I could take a picture to send to Eve and Lola. I swear he’s part raccoon. He must weigh 40 pounds, and part of that is because Mom feeds him over and over again all day long, forgetting that she has already done it, and he isn’t about to protest. 

First of all, let me say that I know Mom would be upset if she knew this photo was posted. I know it’s not the most flattering shot of her, but it is the only one I got before the cat got too heavy for her to hold. I was struck, later, by the similarities I saw. Even though Mom has always loved cats and Grandma hated them for most of her life, the comfort and companionship they both got from interacting with cats is the same.

For the few days I was with Mom, we were both exhausted. I could see her trying really hard to hold on to the thread of conversation, to pay attention to everything I said and it made me wonder if I ought to slow down or tell the same stories over and over again to somehow set them in her brain. (That wouldn’t have been hard – I found myself telling her the same things repeatedly simply because she asked the same questions again and again. Ironically, I wondered if she heard me doing that and thought that I was getting forgetful). By the end of the day, we were both entirely wasted from the effort. And that was when I noticed what happened when she sat with the cat. Her face relaxed, her shoulders relaxed. Her entire being settled. I don’t know if it was the tactile sense of petting the cat or the rhythmic purring, the weight (oh, the weight!) on her lap, or just the fact that she could communicate nonverbally, but she was at ease. She could just interact with him by sitting quietly and petting him without any expectation that she would remember it or make conversation.

It’s no wonder she is looking for the cats all day long. They are familiar to her and she can do exactly the things they expect of her – feed them, let them in and out of the house, and sit with them quietly. It has to be a huge relief to get moments during the day that are like this when so much else feels confusing and chaotic. I’m pleased that my grandmother had Cecil for a while, despite her mostly lifelong hatred of cats. If he knew, he never let on.

“My brain is just mush right now!”
“It’s all just a blur. I don’t know why I can’t remember.”
“You can put it in that…thing over there that is meant to have food in it. That big, white thing. Right there.”

Mom is struggling. Whether it is due to her poorly controlled diabetes or the onset of dementia, or her family’s gene pool playing out its hand and dealing her the early-onset Alzheimer’s her mother had, I don’t know. And frankly, it doesn’t matter. The reality is, she can’t be alone these days for long without consequences. And since her husband recently spent a few days in the hospital for surgery, my brother and spent a few days tag-teaming her.  I got up at the crack of dawn on Saturday morning and headed down I-5, a little over four hours in the car chasing NPR stations as I went without one stop to pee or eat.  It’s been six months since I saw her, although I speak to her on the phone every few days, and I’ve been increasingly worried about her.

I wasn’t quite sure what I would find, but I was on edge. Her husband went in early Thursday morning for surgery and she sat vigil at the hospital, calling me every few hours to report, and getting increasingly panicky. By the fourth call, she had lost the thread that he was there for surgery and wondered why the doctors were giving him antibiotics and wouldn’t let him come home.  At 7:30, she called to report that she was at home, but it took her more than an hour to find her car in the parking lot at their small, local hospital, and she was annoyed.  When I checked on her Friday morning, she wasn’t sure whether she would go visit him, but she still couldn’t remember that he’d had surgery. She said he was at the hospital with a “bad cold.” My brother spent the afternoon and evening with her on Friday and texted me updates that scared us both. He considered hiding her car keys, but couldn’t get her out of the room long enough to dig in her purse and find them.

The hurricane of emotions picked me up and threw me side-to-side. I agonized over the four-hour distance between us, the kids I have at home that still need me a great deal, and thoughts of where do we go from here. Occasionally, I railed at the genetic sequence that put this destination squarely within my own sights and called Bubba to remind him that I’ve ordered him to push me off the edge of the Grand Canyon as soon as I forget the names of my friends and family. Time and time again I was sucked back into the ruts that demanded I “fix it,” find a solution, put some plan in place to deal with all of this.

And on my way home today, I remembered; it’s not about me. It just isn’t. This is about her. Occasionally, I saw glimpses of fear before she masked them. I felt tenderness when she followed me into the kitchen to see what I was cooking for dinner and lamented my eventual departure. I watched as she doted on her two cats, continually seeking them out to be sure they were warm and dry and fed. And when I have the presence of mind to recall that this is about Mom, I can relax and listen. I can sit with her and listen to the same stories over and over and reflect on what her touchstones are, think about the moments in her day that she holds on to. If I listen closely enough, she will tell me what she wants, and for now, that is the most important thing.

Stephen Hawking. Photo by NASA

I’ve been thinking a lot about communication lately. I just finished reading Ghost Boy by Martin Pistorius. It’s the story of Martin, who succumbed to a mystery disease when he was a young boy that put him into a coma for two years. When he “awoke,” he was unable to speak or move any part of his body other than his eyes and some minimal movements of one hand. It took years before someone was able to assess him for brain damage and fit him with a computer device that enabled him to communicate with the world and everyone was shocked at how much he was aware of and understood during the time he was mute and paralyzed.

I have to say, the book wasn’t my favorite, literarily-speaking, but it did spark a lot of thought processes in my head.  And ultimately, it led to me watching The Theory of Everything last Friday night. I have loved Stephen Hawking’s brain since I first read Black Holes and Baby Universes for fun in high school. (Yes, I was that nerd). I went on to read “A Brief History of Time” and was completely hooked.  His story was different, in that people knew he was brilliant before he began struggling with the symptoms of ALS and could no longer speak or take care of himself, but I was still fascinated by how heavily verbal communication weighs in our assessment of each other as human beings.

I remember when my grandmother was rendered mute by Alzheimer’s disease. Although she had been increasingly confused prior to that time, it was still confusing to me whether or not she understood the lion’s share of what was going on around her. I recall thinking that I would go crazy if I were trapped inside my own head and body, unable to respond or make my needs known.

As a young mother, I recognized my infant’s frustrated cries as just that – a desperate longing to tell me what she wanted and to have some control over her world.  Fortunately for her, normal developmental progression let her gradually gain that control. But until she could, I had to change my response to her by listening in a different way, paying attention to her body language and context, the time of day and where her eyes moved. I had to trust that she was doing her best to communicate with me and it was on me to slow down, change my expectations, decipher the clues.  When I came from a place of love and genuine desire to know, while it was often challenging and crazy-making, I was able to be more patient.

Some of the stories Martin told about how he was treated by caregivers in various care homes were horrifying. The lack of humanity he was shown simply because he was unable to speak or move his body the way he wanted to made me sad. And it made me think about how often we expect others to communicate with us in the ways we are accustomed to, instead of thinking outside the box. Fortunately, there are those out there who are committed to finding ways to help people like Martin and Stephen Hawking express themselves.  As for me, the next time I encounter someone who doesn’t communicate exactly like I do, I hope I’ll have the presence of heart to slow down and find another way to listen.

I am sitting in my cluttered kitchen contemplating a new vision for today. I had plans to go to yoga and then lunch with a friend to catch up a little on her new career endeavors and mine, but she “called in sick.” For the time being, I’ve put two spaghetti squash into the oven to roast so I can have a head start on making dinner tonight and I’m at the kitchen table eating leftover enchilada filling with avocado and thinking about the extra hours I’ve been given today.

Yesterday I called my mom. She recently quit her job for a variety of reasons (she is 70+ years old and won’t call it a retirement) and is struggling with memory loss.  She has good days and bad, and she seemed cheerful yesterday when she answered the phone, although she quickly confessed that she had a headache so she was sitting on the couch with the cat, hoping it would go away.  She lamented the grey shroud of fog outside her family room windows and went so far as to blame her headache on that. I wondered if it had more to do with her blood sugar, but didn’t say that aloud.

Frankly, I’m feeling a little guilty that I am so excited about gaining a few hours today to get things done. I’m feeling badly that there are so many things to do on my list that it might take me 15 minutes to decide which of them to begin with. Mom doesn’t really have anything to do and it shows. Her husband gets up every day and heads to their carpet store and while I don’t know how much he enjoys the work, it’s something. I don’t know what Mom does. I know she doesn’t prepare any food for herself anymore. She doesn’t remember to take her Metformin on her own. She doesn’t make her way efficiently through paragraphs of legal mumbo-jumbo as she helps clients buy and sell their homes. I think, mostly, she sits with the cat.

My list runs the gamut from picking up (and then installing) two new parts for my dishwasher, settling a bill with the chiropractor and dropping off donations to the homeless shelter nearby to creating a business plan and website design for a new venture I’m creating. There is also laundry, dog-walking and cleaning out the litter box to accomplish, among other things. I’m not feeling overwhelmed or frustrated. Instead, I’m feeling purposeful and energized, knowing that these things are by turns mundane and vital and wondering how Mom can get some of that in her life.

After chatting for nearly an hour yesterday, we were winding down the conversation and Mom suddenly said, “THANK you SO much for calling!  Thank you!”  And, although she didn’t sound sad or lonely, my heart broke a little bit at the thought of her sitting on the couch with the cat, alone in the fog with nothing to do today. I guess I don’t blame her for not calling it ‘retirement.’