My mom refers to it as impermanence, but I call it change. And both words are are accurate. Nothing is permanent—everything changes. Sometimes the changes are small and sometimes they are big.
Last week my daughter got her driver's license. For the past 8 months, there have been almost daily conversations about driving: learning to drive; thinking of what it will be like when she can drive on her own. And now it's happened.
And for the most part I am relieved. The burden of driving her all over a city the size of Los Angeles was starting to wear me down. I was spending 3 or 4 hours a day in the car just getting her to and from school, dance, auditions, friends' houses, the store, restaurants...on and on. And it was causing us to fight. She felt stifled by the limits I imposed as to when or where I was willing to drive her places.
Suddenly this morning, I woke up and watched her get in her car and drive away. As I watched, there was almost a painful physical sensation, as if there had been another invisible umbilical cord that had held us together all these years and it was suddenly cut. But unlike in the hospital, when the nurse cut her umbilical cord because she no longer needed it to survive, this time she cut it...because she no longer needs it to survive.
She's growing up. She doesn't need to me to constantly watch over her. She doesn't need me to make sure she knows the proper directions and knows exactly where she's going.
It's taken me almost 40 years to realize I don't like change. Change is scary for me. When I was younger, I didn't think about it. Change would happen and I would simply adjust. But as I've gotten older, I find myself fighting things that are unfamiliar. It's hard to learn new routines, and it's hard to make adjustments to habits that make my days familiar.
And now, if I find myself confronted with impending change, I immediately find myself worrying. I assume that changes will be for the worse, and I have to remind myself that all of the good things in my life were brought about by change. That change isn't always bad. Sometimes change is pleasant. At the end of the day, we just don't know. Sometimes things I thought were good changes, ended up being negative experiences, and sometimes things that were changes I hadn't wanted ended up being blessings in disguise.
My mom refers to her state of sickness as her "baseline." I've sort of adopted the idea of a baseline as the place where I am able to balance the good and the bad, the happiness and the sadness. Sometimes there are days where I am thrown off my baseline because I am feeling particularly sad. And there are other days where I am feeling excited and happy.
When I find myself feeling out of sorts, if I take a minute to re-center myself and think about what I'm doing, I can usually find my baseline again. I can find that place within me where I can see that most changes, whether they feel good or feel bad, are not actually movement higher or lower, up or down, but more parallel. I can see that most change doesn't mean things get "better" or "worse." They just shift around.
So, as I sit here with a slightly heavy heart, I am reminding myself that my sadness about my daughter being able to drive, being able to have independence, is joyful for her, which brings joy to me. And the changes that feel painful to me because she is more independent are necessary for her on her road to becoming an adult.
I can't always stop myself from wishing I could stop change from happening. But I know I can't stop it. Nothing can stay the same. Nothing should stay the same.
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Here's my interview with my mom on this topic:
You often write about impermanence. Would you say this is a concept that became more important to you after you became ill?
I don't know whether it became more important, but it certainly became more evident. I realized that my life and the world was all about change, change, change—which is the name of the chapter on impermanence in one of my books. Impermanence is a universal law. It doesn't just come from Buddhism. It's recognized by all religions and by science too.
But change can be wrenching. Your essay talks about that. It certainly was wrenching for me when I got sick and had to give up a profession I thought I'd be in for another 20 years. Perhaps because it's a universal experience, the Buddha focused on change a lot—how we'll all grow old, and we'll all experience illness, and we'll all be separated from those we love.
Many people think about separation as referring to death, but it can apply to any separation. For me, it applied when you and Jamal [Mara's brother] moved out of the house. That separation was really painful. You talked about Malia now driving on her own, and I thought that, as much as it was a burden for you to have to drive her everywhere, it did put you next to each other in the car. And that physical closeness nourishes a relationship. So suddenly you're not in the car with her, so I see that as a kind of separation that may not be easy for you—and maybe not for her either.
When I write about impermanence, I always focus on what I refer to as its corollaries: uncertainly and unpredictability. Because if change is ever present, then we can't be sure what's going to happen next. Uncertainty and unpredictability are uncomfortable, that's for sure. No wonder we don't like change. Imagine if we could control what's going to happen next, whether it be in our personal lives or globally—it would be easy to be content. But that's not the way life is. So one of the things that helps me is to work on making peace with impermanence and the fact that we control so little.
Are there specific Buddhist practices you can share that help with coping with change?
My books are full of practices. I write about impermanence and unpredictability a lot. So I'm going to share something I've never shared before. This is something called the five remembrances. It comes from the Buddha's list of what we're all going to experience in life at some point, like it or not. A lot of Buddhists recite these remembrances daily. I offer it here, knowing that it might not suit everyone. If it isn't right for you, that's fine.
So here are the five remembrances:
- I am of the nature to grow old.
- I am of the nature to have ill health.
- I am of the nature to die.
- All that I cherish and everyone I love will change. I cannot escape being separated from them.
- My actions are my only belongings.
Whew. Talk about tough love! But don't take the Buddha's word for it. If you think about it, all of these are true. The first four are about change. They describe four experiences that are a natural part of the life cycle. This is why it helps to make peace with them.
I'm sharing them because I've been finding them helpful. Here's how I use them. I don't automatically recite them every day, but if something related to one of them pops into my mind (for example, a concern about growing old or fear about death), I immediately stop whatever I'm doing, and I recite the five remembrances silently to myself.
This is definitely having a positive affect on me. At first, reciting them felt strange to me—even shocking at times—but gradually, it's helped me to regard growing old, being ill, dying, and being separated from those I love as a normal part of the life cycle and that's taking the fear of them away. That's why I'm sharing it—in case others find it helpful.
Sometimes after people experience a big change in their lives, they feel regret. Do you have any advice for people who find themselves stuck with regretful thoughts?
There are two kinds of regret. First, we can regret the paths we didn't follow, the dreams we didn't pursue. With those, I suggest saying to yourself something like: "Everyone experiences this kind of regret. Everyone has dreams and plans they wish had work out. I may be disappointed but I'm going to move on with the life I have right now, today."
Second, there's regret that arises when we do something that might have hurt someone or even made ourselves feel bad. That kind of regret feels really bad. In my view, when something feels really bad—like guilt, for example—it rarely serves a useful purpose. Here, though I'd say that this kind of regret does serve one useful purpose: you may be able to learn from it.
Here's how I suggest handling it. First, don't blame yourself—forgive yourself for what you did. If you don't forgive yourself, it's hard to move forward. Next, see if you can learn from whatever you're regretting by investigating it—thinking about it. Was it something you said? Or some unkind thought? When I talk about action I'm including thoughts, speech, and actual behavior. So, it could just be a thought—for example, rushing to judgment about someone. I used to do that a lot.
Usually this kind of regret arises after you've acted out of greed—you want something and you don't care who you hurt to get it—or out of anger or ill-will towards someone. So look for those things. Were you being greedy or harboring ill-will for someone else?
Once you can identify what you did that's making you feel regret, resolve not to do it again. (Remember that fifth remembrance: your actions are your only belongings.) And if you find yourself doing it again, investigate what happened, and renew your resolve.
Bottom line: everyone has regrets. But if you get stuck on them, you're living in the past. For me, life is too short to do that. So I would say, forgive yourself—why not? You've said something unskillful, or you snapped at someone, or you didn't spend enough time with someone—just forgive yourself. Then resolve not to engage in that behavior again.
Having done that, forget about it. Move on. You can't control the thoughts that pop into your mind. So, if you feel regret—you feel regret. Don't make it worse by dwelling on it and assigning blame. Acknowledge it and move on. One thing I feel certain of: living in the past is the road to bitterness and anger, not the road to happiness.
Early on in our lives, we learn that being sick is no fun. When we're kids, being sick feels bad and it means we don't get to play or go to a birthday party. When we get a bit older, being sick becomes even more burdensome because it means we can't get our homework done or we have to miss work. But for me, it wasn't until I became a parent that being sick took on even greater significance.
As the mother of an infant, being sick meant that I wasn't sure I would be able to take care of my daughter. And that terrified me. I was already sleep deprived and feeling lost as to how I was supposed take care of a little human life. The addition of a fever or an infection made me realize that my own health felt like a secondary concern compared to what my other responsibilities were. I couldn't not feed my daughter just because I had a fever. She still needed me to change her diaper or put on her jacket.
And during periods of severe depression, the worry about how my own mental illness was affecting my daughter compounded the confusion, guilt, and anxiety I had always felt.
For my mother, getting an additional illness on top of her chronic illness is hard to cope with. She calls it, "sick upon sick." I often wondered, how a person who already feels sick all the time feels when they are more sick.
For people who are generally healthy, getting something like a cold can be an annoyance. But if you are already so sick that you can't leave your house, how does the effect of a cold or a fever impact you?
Here are some questions I asked my mom about this.
Because of how limited you already are, do you worry about your current illness getting worse, or getting a new illness, or becoming injured?
It's not that I sit around and worry every day that something else will happen. But if you ask me and I think about it, I have to say that I do worry. Not so much about my original illness getting worse because it's been almost 16 years and so I feel as if it's settled into what it's going to be. But I do worry about the last two things you mentioned.
And I did in fact get a serious additional illness, on top of the original one—breast cancer. I'd been chronically ill for 13 years when I was diagnosed and it's become an ongoing additional health issue for me. The medications I've been given to prevent a re-occurrence have side effects that I have a lot of trouble with, and we think it may be because of my preexisting illness. In fact, one of the side-effects is that the medication exacerbates the symptoms of that illness. So yeah, it's been hard.
I also worry that something will happen and I'll have to be hospitalized. Part of my concern about that comes from reading other people's experiences about how doctors and other hospital staff seem not to understand that a person can be very sick but look fine. So I have a plan that if I'm ever hospitalized, I'll have the doctors get in touch with my primary care doctor so that he can explain my illness and how it might impact or be impacted by various treatments. Actually, this is what my primary doctor told me to do since many people in the medical profession don't understand Chronic Fatigue Syndrome (now called Myalgic Encephalomyelitis or ME/CFS).
When I got breast cancer, the doctors and medical staff were fantastic except for one thing. Only one of them acted as if my chronic illness was relevant. It was the anesthesiologist, and he asked me a bunch of questions about it but only because he happened to know someone who has ME/CFS.
At some point you broke your ankle. How did you handle that?
Ah, yes, that was my experience with an injury being a kind of "sick upon sick." I write about it in my first book, How to Be Sick. My husband was out of town, so I was on my own. If I hadn't already been sick, I would have gone to the doctor right away. Instead, after I tripped down the step and knew something was terribly wrong with my ankle, I crawled to my bed, pulled my laptop over, and looked on the internet. It said that if I couldn't walk on it the next day it was probably broken. So I waited and spent the day crawling everywhere I needed to go.
When I couldn't walk on it the next morning, I called a friend. He took me to my doctor who had me get an x-ray and then put a cast on it. The healing was a lengthy process. My doctor arranged for a physical therapist to come to the house for several weeks. He also wanted me to see an orthopedist so I had to do that. He ordered his own set of x-rays and then put on a different kind of cast.
The whole experience was way outside the zone of what I'm comfortably able to do, given my chronic illness. So although it was only a broken ankle, it exacerbated the ME/CFS for weeks. So yeah, that was an injury that made my chronic illness worse because it forced me to be more active than I'm able to be.
What's the worst thing about being "sick upon sick"?
When I think of "sick upon sick," I tend to think about a cold or the flu, not something like breast cancer. I'll answer your question based on those first two—what I call acute illnesses. The worst thing about getting an acute illness is the effect it has on my sleep. The single most important thing that determines how I'm going to feel on any given day is how well I slept the night before. I can sleep well and still feel lousy, but if I sleep poorly, I always have a rough day ahead of me. When I'm sick upon sick, like most people, I don't sleep well. For someone who's otherwise healthy, it's no big deal. But for me, it makes my ongoing illness worse.
A close second to sleep is the emotional impact. It's hard enough feeling sick all the time, so having an acute illness is like a second blow. I have to remind myself to use the practices I teach other people—that everything is impermanent and will pass, like the a rain storm; that I still have blessings to count; that life always has it's ups and downs and this is simply one of those downs. Those kind of things.
Oh, there's one other thing and that's that often the medications I'm given for something acute can exacerbate the ME/CFS. That's tough. For example, I suffer from chronic bladder infections. When they come on, it's terribly painful until the antibiotics start to work. I do have a prescribed pain medication I can take, but it makes my chronic illness much worse for some reason. So there's always this dilemma that medications that help with an acute illness may make my chronic illness worse.
What advice would you give people who have become "sick upon sick"?
I would advise them to remember that healthy people come down with colds and the flu too. It's not reasonable to expect that because you already have a chronic illness, you won't get something on top of it. So, don't think of yourself as having been singled out for bad treatment in life. Illness—and injuries too—are a natural part of the human life cycle. So, recognize that and don't blame yourself for what's happened.
I'd also say that if you get an acute illness, pamper yourself. The law of impermanence will be your friend here, because the acute illness will go away. In the meantime be as nice to yourself as you can.
Have you ever worried that an acute illness will turn into a chronic one?
I have but, you know, some people who are healthy have told me that they worry about that too. When an acute illness makes my chronic illness worse, I do sometimes worry that I won't get back to what I call my baseline; but I always have. Even though that baseline isn't very high, it's still my baseline. It's what I've come to know and accept.
Is there anything positive you can think of about being "sick upon sick"?
It's hard to think of positive things. There is this crazy positive thing that some doctors have mentioned. We think my chronic illness is caused by an immune system dysfunction of some kind—that my immune system is upregulated, meaning that it's overactive. And so, there's always this hope that some kind of traumatic event to my health could reset my immune system—like restarting a computer. Unfortunately, doctors don't know how to do that with the immune system. My doctor and I joke about it sometimes, but we're actually serious. We even shared that both of us were hoping that maybe the radiation I got for the breast cancer would re-set my immune system. It didn't. But I guess this shows that there's a potential positive aspect to everything.
When you've recovered from an acute illness do you ever think, "Wow, I'm not as sick as I could be"? That would be a positive.
I guess that does happen. It certainly happened with the breast cancer. It took me nine months to recover from the six weeks of radiation treatment. It gave me extra fatigue to the point where I was having trouble functioning. So when that extra fatigue cleared up, I did feel relieved not to be as sick as I could be—to be more like my "old sick self" as I sometimes call it.
This doesn't directly relate to your question about an acute illness, but I do hear from people who say that they're glad they became chronically ill because it forced them to live a more relaxed and slow lifestyle. But I hear from just as many people who feel trapped and miserable due to pain and illness. It's nice to know, though, that there are some people who have found positives in it.
I tend to say to myself, "This isn't what I chose and I wish I weren't sick, but I'm going to make the best of it because this is the life I have."
