“I’m sorry. I’ll be quick. I want to let you know a caregiver won’t be coming today, after all”.
“Oh. Who was on”?
“Liza”, I say.
And then I quietly leave the room, closing
the door gently behind me.
As I return to the living room, I reflect on our relationship. Cari and I met through a mutual friend. I had heard she had epilepsy, too, and I really wanted to know how she managed.
I had a lot of compassionate friends, but I knew it would be different if I met someone who dealt with the same issues that I did. I wanted to know: how did she cope? Did she have seizures often? What kind? Did she take meds? Were they under control?
We eventually got together and shared information, and shortly thereafter, became friends. The friendship turned into attraction and we fell in love. A year later, we exchanged vows in a wedding ceremony in our front yard.
When I knew we were falling in love, when I knew this was a relationship I wanted to pursue, I realized at some point we would need help (I had learned in the first few months of knowing her that she had other health challenges, including debilitating migraines, chronic sinusitis, and what eventually culminated in arthritis throughout her body, due to past injuries and years of playing sports. On top of that, she occasionally walked in her sleep!). At first, this help came from friends who were willing to step in when we were both down for the count, mostly to do needed errands. But I knew as we aged, we would need more assistance.
Evening is my favorite time of day, because it means that Cari will come out of her den and we’ll watch TV together for a couple of hours before the caregiver shows up for the night. One of our cats (Reggie) curls up between us as we watch our favorite programs. It’s family time for us.
I love this ritual. We may not talk much, but that doesn’t matter; her presence is really all I need. She gives me something that no one else can, because she understands what it is like to live with chronic conditions and because some of those conditions overlap.
Over the past 25 years, we have seen each other through seizures, pain, emotional ups and downs, struggles with doctors, changes in medications and even menopause. We have figured it out. We get each other. And that gives me incredible comfort, and that is what has kept us together.
There are times, though, when one of us becomes insecure and wonders: Am I too much for her?
Here’s my response when it’s she that feels this way:
The following is an excerpt from I Am, I Am, I Am – Seventeen Brushes with Death – a Memoir by Maggie O’Farrell. She had many brushes with death and this excerpt is about her recovery from encephalitis. Her description of recuperation is brilliant.
“Writing about this is hard, not in the sense that it is a difficult time for me to revisit. It’s not that it’s unwieldy or painful material to think about or mould into sentences and paragraphs. It’s more that the time I spent in hospital is the hinge on which my childhood swung. Until that morning I woke up with a headache, I was one person, and after it, I was quite another. No more bolting along pavements for me, no more running away from home, no more running at all. I could never go back to the self I was before and I have no sense of who I might have been if I hadn’t contracted encephalitis as a young child.
The experiences you live through while gravely ill take on a near-mystical quality. Fever, pain, medicine, immobility: all these things give you both clarity and also distance, depending on which is riding in the ascendant.
I recall my encephalitis, in its most acute phase, in flashes, in staccato bursts, in isolated scenes. Some things are as raw and immediate as the moment they happened; these, I can inhabit as myself, in the first person, in the present tense, if you like. Others I have almost to force myself to confront and I watch them as I might a film: there is a child in a hospital bed, in a wheelchair, on an operating table; there is a child who cannot move. How can that child ever have been me?
Of its aftermath, the rehabilitation, I have a stronger sense. The coming home from hospital, the weeks and months of being at home, in bed, drifting up and down on currents of sleep, listening in on the conversations, meals, emotions, arrivals and departures of family life below. The visitors who came, bearing books and soft-toy animals and, once, a man from over the road bringing a basket of baby guinea pigs, which he let loose in my bed, their tiny, clawed, panicked pink feet skittering up and down my wasted legs.
Convalescence is a strange, removed state. Hours, days, whole weeks can slide by without your participation. You, as the convalescent, are swaddled in quiet and immobility. You are the only still thing in the house, caught in stasis, a fly in amber. You lie there on your bed like it draped stone effigy on a tomb. As the only sound you hear is that of your own body, its minutiae assumes great import, becomes magnified: the throb of your pulse, the rasp of hair shaft against the cotton weave of your pillow, the shifting of your limbs beneath the weight of blankets, the watery occlusion when eyelid meets eyelid, the sylvan susurration of air leaving and entering your mouth. The mattress presses up from underneath, bearing you aloft. The drink of water waits beside your bed, tiny silvered bubbles pressing their faces to the glass. Distances that used to appear minor – from your bed to the door, the stretch of landing to the loo, the dressing-table to the window – now take on great, immeasurable length. Outside the walls, the day turns from morning to lunchtime to afternoon to evening, then back again (O’Farrell, 2005, p. 226-228).
Dieuwke, one of my nighttime caregivers, settles herself in the rocker next to my bed, as I sit up and pull the covers up around me. She tells me about her lunch date with her friend. I always like hearing her stories and look forward to them.
“She had this insight about herself”, Dieuwke says smiling. “She realizes she’s pretty tuned into the broader aspects of reality”, she spreads her arms out wide. “She meditates regularly for long periods of time, she can have all these revelations, and can be quite psychic. But the practical things in life, she’s not so good at”. She pauses and rearranges the blanket around her knees.
“You know, it’s funny – I was just thinking about the same sort of thing just today”, I start.
It seems to me that there are 2 realities going on at the same time. There’s this boundless dimension of reality you could say, and then there’s this concentrated, detailed reality. It’s hard for me to put into words”.
Dieuwke nods and looks at me intently as I sit up straighter.
I continue, “I can relate to your friend. I meditate, contemplate, I ponder about the Big Questions in life, but I have a harder time focusing on getting things done, even when I’m feeling ok”. I laugh “I can get these great ideas about what I want to write about in my blog and jot them down. But then the work of it is harder for me – the writing and re-writing, the editing. I’m not as fond of that as I am about the initial idea. I have to get my head out of the clouds and my feet on the ground”. I look at Dieuwke, who has a slight smirk on her face. She knows this about me already. She looks like she’s about to speak, but I put up my hand to stop her. “Wait a minute. There’s more”. Dieuwke raises her eyebrows.
I go on. “How does this understanding of the vastness of being help when we’re in the middle of great difficulty? When we feel like we can’t go on? When the pain, whether it’s emotional or physical, is just too much? For that matter, how does that kind of awareness help when we’re organizing our closet, cleaning out the fridge, or other kinds of chores”? I pause again. “I’ve been thinking awareness is kind of like a Maglite”.
“A Maglite”?, says Dieuwke skeptically. “Yes, a Maglite. If you twist it one way, the light becomes broad, like the vastness of the universe, but you can’t see the particulars around you. If you twist it the other way, you can’t see the bigger picture. To get things done in the physical world, you have to minimize the beam”.
Dieuwke tilts her head, considering this.
I continue. “Let me give you another example: I continue, “when I drive my car, I have to focus on driving, not the wonders of the Infinite, or else… I don’t know, I’d run off the road. Or, if I have to have a difficult conversation with someone, I can’t just focus on The Realm of Unlimited Possibilities – I have to say something”.
Dieuwke nods slowly (taking this in), but I see I need to say more for her to grok what I’m talking about.
“I remember one time when I had to go to my neurologist. I knew it was not going to be an easy visit, and that I needed to talk to him about a medication I was taking, so before I went into the office, I got very centered. When he came in, he already looked cross and in a hurry. I brought up how I wanted to handle my medication situation and he started to raise his voice, and even got a little angry. But, I immediately narrowed my focus – twisting the Maglite to one end, you could say – and stood my ground. I was not going to be intimidated! I was very, very tired that day and my stress level had been high or weeks, so I really had to use my energy wisely and not get distracted by his attitude, or veer off course. I didn’t back down, but I also didn’t retaliate. And although in the end we didn’t agree, and I had to go to another doctor who could better serve me, I felt good about how I handled myself. If the Maglite had been twisted the other way, I would’ve probably gotten scattered and spacey and maybe given in to how he wanted things to go down”.
Dieuwke responds, “Well… it’s like you said. The Maglite has the same power, whether you twist it this way or the other. It comes from the same source. My feeling is we have to be skillful about how we use that power. Every situation requires something different. It’s not really that there are 2 realities. There’s only one”. She nods, as if agreeing with herself. “Some people have an easier time in the physical world. Other people seem to have it easier in the unseen world. But, they’re both the same world, really – they just seem different. We all need a certain balance. Some people think that the physical world is pretty much all there is. Others pretty much dismiss the physical world, thinking it’s insignificant”.
I feel satisfied with this conversation and am starting to feel sleepy. I scooch down and get my entire body under the covers and position my pillow under my head.
“We’ve figured it all now, I’m sure of it. We finally got enlightened”, I say, and smile.
It’s about time”, Dieuwke says. We both chuckle and I close my eyes.
“Long married, Fiona (Julie Christie) and Grant (Gordon Pinsent) find their mutual devotion tested by her struggle with Alzheimer’s disease. When it becomes apparent that the condition is worsening, she checks into a rest home. Grant visits her a month later and finds that his wife has grown close to Aubrey (Michael Murphy), a fellow resident. Jealous and hurt, Grant finally seeks help from Aubrey’s wife (Olympia Dukakis) when Fiona suffers a crisis.
Release date: May 4, 2007 (USA), Director: Sarah Polley, Screenplay: Sarah Polley”, and David Wharnsby, editor
My observance: Julie Christie is extraordinary in this role. You can almost see the deterioration of the disease by the expressions on her face as her memories slip and slide away from her. Great acting
“In a real sense, all of life is interrelated. All persons are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly. I can never be what I ought to be until you are what you ought to be, and you can never be what you ought to be until I am what I ought to be. This is the inter-related structure of reality.” ~ Martin Luther King, Jr.
One day while living in upstate New York, I decide to go with a group of friends to Vermont to stay at one of their parents’ home, who are away for the weekend. I am excited about this, because it is a house in the country and it’s mid-October and I know the colors in the surrounding hills will be bursting with colors. However, as usual, I haven’t been sleeping well and so when my friends decide to go for a hike, I feel too weary to join them, and instead, opt to lie down and rest in one of the big, cozy beds.
I must have dozed off, because the next thing I know is complete disorientation and a sensation of being caught in between worlds – the living and the dead, you could say. I feel incapacitated by fear and that is all I know. I don’t even know my name. I look around me and I can’t recognize anything – not the floral bedspreads, the bedside lamps, the room itself. The fear is so intense, yet so familiar, and then I begin to identify its movement and texture and how it relates to seizures. Am I going to have a seizure? The idea of this further frightens me and I grab onto the bed covers, as if holding on to something solid will help me stay here instead of leaving my body. I struggle again, to make sense of my surroundings, but again, I recognize nothing.
I call out again and again, but there’s no answer. My panic rises as I realize I am all alone.
After a bit, I remember a phone number, but I have no idea whose it is; but in the midst of my intense confusion, it feels like a life saver. Luckily, there is a phone on the bedside table, and I find I am able to retain the numbers long enough and the ability to punch in the numbers, to complete the call.
Someone picks up. “Hello?” – a woman’s voice.
“H – hello?”, I say tentatively, “Do you know who I am?”
I have happened to call my parents in California and my mother immediately recognized my voice. It is a difficult conversation – for me, because I am trying to form thoughts to put into words, and for her, because she is 3,000 miles away and there is very little she can do to help me. Throughout our exchange, I realize that I had a seizure, not that I was going to have one – a phenomenon that repeats itself throughout my life. Although she cannot help me find out where I am, just knowing what happened and who I am is, for the moment, enough for me to calm down a little. Her voice is an anchor for me, and I hang on to it for dear life.
Soon afterwards, my friends arrive, and I sort out where I am and where I live and other basic information.
The rest of the weekend, though, is spent in recovery. I am depleted through and through. I don’t fit into the human realm, yet. I am just a wounded animal, licking my wounds – a scream lodged in my beaten body.
I recently saw a documentary called Teddy Pendergrass: If You Don’t Know Me (Flooks, Lichtenstein & Tempest, 2018), about the life and death of Teddy Pendergrass. For those of you who don’t know, Teddy Pendergrass was a soul singer who became popular in the ‘70s. But at 31, at the height of his fame, he had a bad car accident that made him a quadriplegic. Fortunately, he was able to breathe on his own, talk, and raise his arms half-way.
Understandably, he fell into a deep depression. Can you imagine? He went from being a famous, successful star to suddenly becoming some guy in a wheelchair; hardly able to move. He hadn’t invested his money well and didn’t have much to support himself and his family. Talk about changes in identity!
He ended up
going to a therapist who was also in a wheelchair. Session after session, Teddy
showed up, but finally came to the conclusion to end his life. His therapist
told him that he had a moral obligation to tell his family his decision, and
Teddy agreed to have one last session with all of them there.
When the time came, his family begged him not to take his life, but Teddy was adamant he was not going to change his mind. On the way out the door, he said to his therapist, “Well, I probably won’t see you again, so good-bye”.
therapist hung on to the word “probably” and then suggested the most surprising
thing: that he set up a time for his family and close friends to get together
and stage a funeral for him, during which time Teddy would be covered with a
sheet. He was not to say a word while everyone spoke about him as if he were dead.
everyone finished, the sheet was lifted and he said, “I want to live”.
He then concentrated
on building up his strength and because he was able to lift his arms, he could
exercise his lungs and was eventually able to sing.
who hadn’t been in a wheelchair that long himself, said, “saving his life was
like saving my own”.
I love this
story. Not so much because he went on to find fame and fortune again, but
because he took his suicidal thoughts as far as he could without actually playing
it out. This unorthodox ritual is finally what it took to turn him around and
give him the inspiration he needed to find purpose in his life again.
what his friends and family told him that changed his mind? What would I say to
a loved one in a similar situation? Why hadn’t their desperate pleadings in the
therapy session make a difference, but what was said in the funeral did. What
would I want to hear if I were playing dead?
What would you need to hear to help keep you going in the worst of times? Can you tell yourself these things now? How do we accept the unacceptable in our lives? What abilities do you still have, and what can you do to continue to develop them? Can you find purpose and meaning in your life just the way you are? What do you value about yourself? Can you ask your loved ones now what they value about you, what it is they would miss if you were dead?
too, reminded me of the book Tuesdayswith Morrie, a true account by Mitch Albom
(1997). Morrie was Mitch’s mentor who ended up having a terminal illness.
Morrie decided that he wanted a memorial service while he was alive, so that he
could hear what it was that people loved about him. His thought was: why wait
until I am dead when I can’t hear what they say?