This is the second half of the contribution my husband, Chimp, asked to make to the blog. Part I is here.
Maybe you went to bed last night with the whole thing figured out, and you think you’ve written a third story. But The Disease got up two hours before you, had four cups of coffee and reinvented itself after it read your draft. You wrote that story – and a hundred drafts before it – because you wanted to feel like you controlled The Disease, that the world would behave itself if you pushed the right buttons in the right order. But you do not control The Disease. You cannot control it for her, and you cannot control what her suffering does to you. You live a life where those things you cannot control are pushed to the fore. You cannot stop resisting it, because doing so is walking out on her. You must become someone who is not diminished by these things. How do you live a life where what matters most is not in your control?
“Remember then that if you think the things which are by nature slavish to be free, and the things which are in the power of others to be your own, you will be hindered, you will lament, you will be disturbed, you will blame both gods and men: but if you think that only which is your own to be your own, and if you think that what is another’s, as it really is, belongs to another, no man will ever compel you, no man will hinder you, you will never blame any man, you will accuse no man, you will do nothing involuntarily (against your will), no man will harm you, you will have no enemy, for you will not suffer any harm.” -Epictetus, Enchiridion (§1)
The Disease isn’t mine, of course. I go out into the world, my muscles do what I tell them to do, and given ten minutes and a flat place – comfortable or not – I’ll be asleep. A dozen twee declarations about our intertwined fates and the love we have for one another might go here, but they are ways not to talk about the disparity. The special twist for me is that all of this came into my life, but didn’t come for me. Had it come for me, I would have known what to do.
I’ve been sick much of my life. When I was a teenager, ankylosing spondylitis struck me out of the blue. The pain was incredible, and the inflammation so bad that it dislocated my collarbone one day when I was 15. Just sitting on my bed, and pop – dislocated. My joints got so bad the first two years of college that I could barely walk many days, and I never told people because I was afraid I would have to leave school. But my life now is healthier and less circumscribed by my illness than any life I imagined for myself back then.
Had this come for me, I would have already had decades to practice my responses, and had wisdom ready to dispense in fortune cookie-sized bites. But that’s not what happened. It came for her, and I see it from a distance, through the windows of a room I can’t enter. Each little event in it is something I can neither wholly control nor let go.
Despite my profession, I have not been a fervent self-contemplator since adolescence. The philosophy I do is more the squiggly-symbols-and-hang-out-with-the-neuroscientists kind, not the why-are-we-here-and-how-do-we-live kind. Most of those veins of philosophy came to feel trite and self-involved, written by men of leisure for their peers. I like the kind of philosophy that I do because I like abstract problems. I don’t think I have particularly insightful things to say about the “big problems” that people associate with philosophy.
I remembered the quote that opens this section, though. When The Disease really took hold and our world narrowed, I started reading some of the Greek stoics. (A note to my academic friends: No, I am not an orthodox Stoic. Just bits and pieces here.) There is really nothing of comfort in that passage, nor the work from which it’s drawn. (He even warns you, “On no occasion call yourself a philosopher, and do not speak much among the uninstructed about theorems…” so I guess I’ll keep my squiggly symbols to myself.)
Something about it resonated with me, however. As her health declined, I was shaving off parts of my life that no longer served me or served my helping her. I stopped watching television, and never missed it. I have no idea what happens in an episode of Jersey Shore. Hobbies strike me as strange. Why do something to take you away from what is central to your life? The pharmacist on the midnight shift at our local Walgreen’s asked me one night how I could stay so calm when he made me wait. I told him I just don’t worry about what I don’t need to worry about.
If it seems as though I have some special insight there, it’s simply that circumstances have made that line much bolder for me. Too many things were competing for the energy I have, and those I can let go, I will let go. There is something too pat and truistic about saying that you have to decide what’s important and set aside what’s not. But taking it as a goal, something to remind yourself every day, every moment, every decision, was one very fruitful way of coming to terms with what has been happening to her.
If there is a knock on stoics like Epictetus, it was their sense that you could simply shut off your unpleasant emotions. Not being slavish to that which was not in your power and all that. In the terms tossed around therapists’ offices these days, this can be the worst sort of repression. That’s an uncharitable reading, at the very least, but even a more charitable one does force a certain choice. Jocelyn’s health is not something that I can control; to be intimately tied up with her suffering is to sign up for years, decades, of circumscribed living and crisis after crisis just to keep her afloat.
Why make those attachments at all? People have said this to me in all seriousness. They tell me that staying with her is remarkable, and that they just couldn’t see themselves doing it. They’d be out the door in a month, they tell me. I am sure they mean this as a compliment, but I find myself thinking, “Man, I know some no-good sonsabitches.” Not all discomforts are unwanted, and not all detachments free us up. There is a foolishness in craving things so desperately that your desires drag you from one sort of self-ruin to another, always keeping peace out of reach. And there is a hollowing out of a human life if that peace comes at the expense of love or solidarity. If the stoics point me in that direction, this is going to be a short ride with a bad idea.
What I drew more fruitfully from those writers was a sense that I had been doing something very wrong, something that I had probably been doing very wrong my whole life. As Yoda said, “Never his mind on where he was. Hmm? What he was doing.” When she was getting sick, I would imagine what the future might be. Maybe she would be hindered, but it would be like my friends who had chronic illnesses they could treat. Some meds, some limits, but nothing terrible. It became clear that I was probably wrong in doing that. I don’t mean that I had just guessed wrong about what was coming, which I had, but that making those guesses and attaching myself to them was the wrong thing to do. Putting off what each moment was bringing let the weight of them build up, and it invariably came back to crush me.
When things were bad, I would tell myself this was the worst of it, and that insulated me from the sting of that moment. Look away from the present and wait for something better. But no one can sustain that for long, and I am no exception to the rule. After weeks or months of doing this, I would hit a wall and barely be able to get out of bed or go to work some days.
The close cousin to this breakdown was my reaction to any improvement in her condition. When things were better, I would imagine the upward trend continuing in an unbroken string of recoveries. The thought of a full life – maybe more fervently lived than the days before – would be there in the back of my mind. But you cannot sustain that either. The sweetness of the fantasy devalues the little uptick in the present. When you are snapped back into the moment, as you will be, it is all the more unbearable. If your desires involve perfect futures, always well out of reach, then the present can only disappoint you and you will lose all sense of the value of what has actually come.
I found myself repeating something to myself and, at times, to others. I should let the good days be good and let the bad days be bad. The worst moments should not be denied, nor simply accepted. They are going to come, and they are going to be every bit as bad as one can imagine. To pretend otherwise is to turn away from a moment in which I am both invested and needed, removing myself when she is most alone. It is trading a life in this world for numbness. And just as surely, there will be good days and good moments, if we are open to them. The good days will be finite in number, but they were always going to be finite, as they are for everyone. And what is good about them is quite real, and more fit for our concern than futures that will never come to pass. You will blind yourself to them if you do not see them as part of that larger whole.
Just today, the day I drafted this, I helped her get a bath. Reading that might sound like heartbreaking drudge work to you. My employer offers long-term care insurance plans to defray future costs of having someone come in and take over such tasks for you. (Not worth it for us, at this moment, just fyi.) People fear and avoid this sort of task, because of what it represents. Loss. Incapacity. A never-expected responsibility. Not me. I’m the bath f#*$in’ master. Water at 104, just dipping into 103 on the fancy Thermapen thermometer she bought in better days, having long been an accomplished cook; hand towel to drape over her shoulders, her t-shirt and pajama bottoms, all in reverse order to throw one-handed over my left shoulder as she’s getting out. I got my technique and everything. I don’t be ticklin’ or nothin’.
A bath with her starts with washing her hair, which is the most splendidly intimate act you could imagine. To have your hands in someone’s hair, to be welcome there, to feel part of another body relax in the cradle of your fingertips. Have you ever felt that? Without waiting for the next thing, wondering where this would lead, or wishing it was something else instead? I have. Just this afternoon, in fact.
“If by eternity is understood not endless temporal duration but timelessness, then he lives eternally who lives in the present. Our life is endless in the way that our visual field is without limit.” -Wittgenstein, Tractatus Logico-Philosophicus (6.4311)
I find your words so moving, so sensitive and so loving, that it brought tears to my eyes, especially this: “To have your hands in someone’s hair, to be welcome there, to feel part of another body relax in the cradle of your fingertips. Have you ever felt that? Without waiting for the next thing, wondering where this would lead, or wishing it was something else instead? I have. Just this afternoon, in fact.” Bless you for sharing this.
Jocelyn, you are very blessed to have this man in your life.
Love & loveliness between the two of you 🙂 Thank you for sharing this, I can’t speak for anyone else, but this is comforting, something to look back & read on days when there seems a lack of compassion, humanity & simple loving care.
Thanks, Patricia. Thank you, Leonie. Hope it helps down the road.
Whoops, extra thanks in that comment. Read charitably…
You’re not a saint, M, but if I ever find myself in a similar situation, I would be very happy to handle it as well as you do.
Your mutual devotion uplifts you both. Your love for Jocelyn is obviously deep, and she equally obviously adores you. Keeping a positive outlook while acknowledging the inevitable times of despair and anger at your situation also is a plus. Despite what you and Jocelyn say, you are special folks and we cherish you.
Thanks again, Carol.
Forget all the poets and the novelists: You have just described what love is, what mature, deep love is about. It means helping and taking care of your partner when it’s needed. Describing the bath scenario reminded me of what millions of parents do with their children every day. Millions do it with elderly parents — or, as you have done with a beloved partner.
This particular sentence brought tears to my eyes: “But there is a hollowing out of a human life if that peace comes at the expense of love or solidarity.” Yes. That is absolutely brilliant and beautiful and true. It’s not only love, as you point out, but it’s solidarity. I think that about being someone who opposes war and feels that about people around the world or people who are hungry, homeless, alone. However, maybe those of us reading it will think more about our relationships, too, families, friends.
You both are so special that I don’t know if I can even express it except to wish you both good days and laughter. And the possibility that some of these researchers will find a treatment that works and will improve your lives — and soon!
I am sending best wishes for the holiday season to both of you and the feline family, and for the new year.
May all the same come your way, Kathy.
Thank you for reminding me of my Buddhist lessons. There is no past; there is no future; there is only now. The wanting, the craving is what causes suffering. You have managed to do this and you are reaping the rich rewards.
I always thought I was a *bad* Buddhist. (Certainly dropped too many f-bombs to square with the “right speech” part of the eightfold path.) There’s a sort of acceptance I could never embrace – a detachment from *all* desire, a fatalism about the suffering of others – but perhaps better readings of Buddhism wouldn’t lead in those directions. To not be consumed or undone by it, though, that I can get behind.
I see the intimacy and quiet joy that you two share at the end of the day during tje bedtime ritual -: quietly covering the windows, entertaining the cats, stacking pillows, checking pills and water glasses, chatting and laughing… Always there’s the quick reply to her “Chimp” with you quetly arriving at her side. What’s gone? The muddy footprints you made in the river wet, recently flooded yard, The plans to go up the corporate ladder. The possibilities. So you make different ways to celebrate. You live circumscribed but not with less love or affection or caring or sharing.
One can’t detach from all desire. That takes one out of the best of human relationships. Nor can one have fatalism about the suffering of others. I would not want to do either of those things. Caring about other people is being human, whether they’re close to one or ill or poverty-stricken victims of war around the world. Every day when I see the news, I feel anger and sadness at what’s going on, and if I didn’t, I would wonder what happened to me. It’s all part of the human condition.
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You know I love those stoics. The Roman stoics would, I think, be particularly sympathetic to you, since their lives were full of ambition and…well…stuff. Trying to find those moments of equilibrium, learning to pare away what is not essential was a challenge they fully recognized and struggled with. Seneca tells us that a patient mind can endure any disagreeable thing, but the noise of the bath complex next door annoyed the hell out of him all the same.
I don’t know if this is true for you, but for me care taking, while it can be a burden, offers the most unadulterated opportunity to create intimacy. When I think about the moments I share with Matt when he’s ill or Thomas in various capacities, there is a knowledge you gain–physically and emotionally–that is hard to acquire in other ways. I really cherish those moments, even if they are frequently accompanied by bodily fluids. You’ve perhaps already had a lifetime of such moments, but, as you’ve articulated so beautifully, that has offered you an openness to the present that most of us never achieve. Score: Chimp 1, Jersey Shore 0.
And nice way to work in the Pulp Fiction reference.
I think of you both often.
So beautifully said. You two embody Love, and should be an inspiration for all. Isn’t it funny how adversity, particularly chronic adversity, gives you the opportunity to either grow in wisdom & depth of character, or to implode/explode? It is our choice how to respond, to either flow with the river and travel to previously unknown shores, or to be drowned in the rapids, smashed against the rocks. You have both learned to flow, and while I’m sure there are times your heads are underwater & you struggle, you continue on, through the strength of your love and the hard lessons learned.
Thank you both for sharing yourselves with all of us. Namaste.
Thanks, Ash. Yes, I agree – there’s not much of a middle way in dealing with this. I’m eternally grateful that Chimp has responded the way he has, because what he does is not easy, though he makes it look so. When I met his parents very early on and saw how his dad treated his mom with tenderness and patience, I thought, “I want *that*.” And through his family’s example, it seems to be second nature to him. I’m very fortunate.
Thank you so much for taking the time to write this, Chimp. Just thank you.
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I just had the pleasure (and a wee bit of pain) of reading this. Thanks Chimp. Alot.
Chimp thanks you, Libby.
Qսel hasard je comptais justement rédiger un petit poste identique à celui-là