Our Gratitude List for February. What Are You Grateful for this Month?

Here are three things that Toni is grateful for this month, and three things that Mara is grateful for. Enjoy!

From Toni

—This has been a tough month for me healthwise—too many doctors' appointments and too many side-effects from medications, and so I'm grateful that February has only 28 days!


—I'm grateful for my mid-day nap. Last Saturday, it was only because I napped that I was able to visit in front of the house for two hours when old friends whom I hadn't seen for over five years came through town and stopped by to visit.

—I'm grateful that, so far, I seem to be able to dabble in watercolors after striking out at oils and acrylics. With watercolors, I can recline in my lounger and paint on paper that I've taped to a board on my lap. I can ruin a watercolor with one misplaced stroke of the brush, and so I throw away more pieces than I keep. This is helping me overcome my perfectionist streak and that's another reason I'm grateful for this particular medium.

From Mara

—I am grateful for my rice cooker. My daughter wanted to try and eat vegan for a week, so I joined in the experiment to support her. (If you know me, this is the ultimate test of my love for my daughter because I am very much a meat eater.) I am not a person who cooks very much so, for the most part, I spent the week eating rice and tofu. And I'm very grateful for the rice cooker that my mother-in-law gave me for Christmas because it was easy to create big, lovely, perfectly cooked batches of rice for us!

—I am very grateful for our sturdy old house. We have had more rain this year in California than in the last decade. A storm last weekend brought with it 5-7 inches of rainfall within a few hours. All over Facebook I saw posts from friends dealing with leaks and power outages. Our house is small and it's in need of some touch-ups. It only has one full bathroom (much to our daughter's frustration). But in the 13 years we've lived here, it has never leaked. So when it's storming outside, I feel safe and protected in our lovely home. Very grateful.

—I am grateful for our crazy cat. We adopted a cat last year. He's a ginger cat and my husband named him Demetrius. He's quite a character. Both of the doors to our backyard have glass panels, and he has figured out that if he throws himself with lots of drama up against them that gets our attention and we'll let him in. But about 50% of the time, once we've gotten up from wherever we were sitting and walked across the room to the door to let him in, he decides he doesn't want to come in anymore. When we open the door, he either runs away or he stands and looks at us as if we've interrupted him. This drives me crazy. 

But he's a constant reminder that I am not in charge of the universe. Demetrius is his own little being. He's not a stuffed animal. He doesn't live for just my pleasure. And he reminds me that I can get mad that I can't control him, or I can just let it go and wait for him to throw himself up against the door again so I can get up and let him in again. And he'll come in if he wants.

One of Toni's watercolors

Helpless Is Not Hopeless

There have been many times in my life when I felt helpless and only a handful when I was hopeless. 

It has taken me most of my life to realize that helpless and hopeless are not the same thing—to realize that the thought that I feel helpless and actually being helpless are very different. For me, feeling helpless simply means I don't know how to help myself in that moment. Hopelessness is when you think you can't be helped, or you think you don't deserve to be helped.

And that is a very scary place to be.

People who have never suffered from depression or never had to struggle through adversity may not understand what I'm talking about. And if that's the case, I'm truly happy for you. Because my greatest wish for everyone is that they can live a life without feeling hopeless.

I'm not going to sit here and pretend that I have all the answers to suddenly make your life a perfect package with a bow on top, because I don't. I regularly find myself feeling helpless, especially when I don't know how to help myself go beyond something that is worrying me. However, I finally came to realize that when things start to get very difficult for me, the feelings of helplessness descend into hopelessness when I started to believe that things will never change—that I'd always feel a certain way or I'd always be in the same situation.

As we've already written about a lot in our blog, change is one of life's constants. If we can count on nothing else, we can count on change. And this realization is one of the things that has helped me stop a downward spiral toward despair when things feel bad. I know now that things will change. It might not always be a big change. But just as in walking, taking one step, even a small one, moves you forward. If you add up all your steps, you will realize you've traveled a far distance.

Lao Tzu said, "The journey of a thousand miles begins with one step." I think about this often as I remind myself that I need to keep myself moving forward, physically and mentally. I remind myself that I can't predict the future, so I don't know what life will be like in a day or a week or a year. 

My dad, a Buddhist teacher, has been working with and counseling prisoners at Folsom Prison. These are men with violent pasts. They're not ever getting out of jail. I asked him, "How do these men not give up? What keeps them living?" He thought about my question for a moment and then replied, "They have lives. They don't have lives that you and I would recognize, but they do live. They have friends. They have a social structure. It's what they live for." Some of the prisoners he works with have learned to meditate. They have learned to find peace and feel joy within themselves. They continue moving forward in the ways they can.

My mother often says, "This is the life we've been given." I've truly taken that one to heart. My life is the life I have. I spent many years being angry that my life wasn't the way I thought it would be, or should be. I felt dissatisfied that I couldn't make my life be a certain way. And every time I found myself consumed by those thoughts, they would lead me to feeling hopeless.

But if I simply acknowledge the life I have and take steps toward living the life I want—then there is hope. And, yes, sometimes feelings of helplessness arise. But that's ok. It's ok to feel helpless. And it's okay to ask for help. And it's ok to allow yourself to be helped. And then, once again, you can start taking those steps forward. If I look back on the path my life has taken, there are so many things I'm grateful for. So many things I cherish that I never could have known were possible. 

Questions for my mom:

Have you ever had a time in your life when you felt hopeless?

I don't think you can get to be my age without feeling hopeless at one time or another. I think it happens to everyone. But it's rare for me these days. I liked what you said about helplessness and hopelessness being different. You also mentioned feelings of not deserving to be helped, and I'm really fortunate in that way because I've never felt that I don't deserve to be helped. I don't get down on myself in that way. But I can feel as if I "can't" be helped and that does lead to feeling hopeless. 

The reason I rarely feel hopeless anymore is that, over the years, I've changed my perspective on life. I don't expect life to be rosy all the time. I don't expect to always like everything that's happening in my personal life or in the world. I know this means that I've lowered my expectations, which some people may think is a negative approach, but, for me, it depends on the context. In the context of trying to diminish being susceptible to feelings of hopelessness, I think it's skillful to lower expectations—to know you're not always going to get what you want.

Do you recall what action you took to help yourself move forward past those negative thoughts?

In addition to that change of perspective, I have a couple of tools for dealing with feelings of hopelessness. One is that I treat hopelessness as an arising and passing mental state or feeling or emotion—whichever word you like. Like you said in your essay, change is universal, so I treat hopelessness as a temporary visitor to the mind. 

One of the ways I do this is to describe it to myself in a way that makes the feeling not a permanent part of who I am. So I may say, "Hopelessness is present today." I know that sounds awkward, but it's very different from saying, "I am a hopeless-filled person." When you dis-identify with the emotion in the way I've described, you lessen its hold of you and that makes it pass away more quickly. When you're able to see it as a temporary mental state, it's easier to wait it out. 

The second thing I do to keep feelings of hopelessness at bay comes from a Zen saying: keep a don't-know mind. Readers of my books will be very familiar with this idea! "Don't-Know Mind" has been tremendously freeing to me, including freeing me from hopelessness. After all, none of us knows what will happen in the future. We don't even know what tomorrow will bring, personally or globally. It could be an unexpected positive change.

So rather than worrying about the future, which can lead to hopelessness, my advice is to acknowledge when you're feeling hopeless, but to also recognize that you don't know how things will play out. Maybe something wonderful will happen! I know it's a cliché, but tomorrow is a new day. We have a friend who fell in love at 71. Neither he nor the woman—who's about the same age— thought there'd be another love for them in their lives. But there it is. You just never know.


But I do want to add something important. If someone who is reading this piece has been feeling hopeless for weeks on end—maybe 2-3 weeks straight—then they need to seek help. Reach out to a friend or get help from a therapist. Feeling hopeless for that long is a sign of clinical depression. A person can be depressed and not feel hopeless, but the two often go hand-in-hand. You should always keep an eye on how long a dark mood sticks around and, if it's a few weeks, then take some steps toward getting help for yourself. 

Do you think people with chronic illness are more likely to struggle with feelings of hopelessness?

I would say that all things being equal, yes. But to me, living with chronic illness in a country like the U.S., in most cases can't be compared to a parent who is living in a dirt-bottomed tent in a refugee camp with her three kids with hardly any food, no sanitation, and no idea how or when she's going to get out of there. Hopelessness in that situation is truly tragic.

Back to your question of whether people who are chronically ill are more likely to feel hopeless. If we are comparing healthy people to chronically ill people with all other factors generally being equal, then, yes, I do think that being chronically ill can lead to feelings of hopelessness. The reason is that people who are chronically ill (which includes chronic pain) feel powerless to do anything to improve their medical situation. 

Of course, there are healthy people who can feel powerless too. Maybe they're in a bad relationship or they're unhappy at work and have no alternatives. That's truly sad. For the most part, though, healthy people can find a way to change their situation because they have some control over it. By contrast, people who are chronically ill can't control what's happening to them physically and/or mentally, and they often feel there are no alternatives for them in life. Feeling that way can give rise to feeling hopeless. I know it happens because chronically ill people write to me about it all the time. 

Whether people are in good health or not, hopelessness is disheartening and it feels terrible. My heart goes out to anyone who's feeling that way right now and I hope our suggestions will help.

Change Is The Only Constant

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. 


---------------------------------------

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.

Penny For Your Thoughts

I found a penny today while I was jogging. I was breathless and tired, but I stopped and picked it up and clutched it in my hand for the rest of my workout. Holding small items like that in my hands while I’m exercising is not something I particularly enjoy. This is because my hands get sweaty and it’s hard for me to not drop things like my phone. And I don’t like stopping when I’m jogging because when I stop my momentum, it’s very hard for me to get started again. But I stop for pennies. 

I haven’t always picked up “lucky pennies.” There have been years when I just ignored them. But I have a friend who believes that money she finds are gifts from her mother in heaven. She often posts on social media about how she knows her mom was sending her love that day because she found a penny. So for a long time this idea about pennies was always floating in the back of my mind. I would see them in the street and think of my friend, but I rarely picked them up.

Last year I went through a very tough time. I take medication for both my depression and anxiety, and all the medications needed to be adjusted. Combine that with trying to raise a teenage daughter without all of us losing our minds, and it made for an emotionally unbalanced time. During my darkest moments, I started noticing money on the streets. A dime. A nickel. A penny. Two pennies. I wasn’t convinced that it meant anything, but at some point I realized I didn’t need to be convinced. I just wanted to be open to the possibility that maybe the universe was trying to send me love, hope...anything. 

So I started picking them up. 

One day I texted my friend a picture of a bright shiny new penny I found and told her I was thinking of her. She replied, “Put it in your bra over your left boob.” I replied, “That’s a very strange suggestion” and she wrote back, saying, “It’s the closest to your heart and that’s the closest to heaven.”

I’m still not doing that because my brain can’t reconcile the idea of jogging with pennies in my bra. But I do clutch them in my hands for the duration of my runs. It might be for a block; it might be for several miles. But I do it. And having the pennies in my hands reminds me to be grateful. It reminds me to be present. It reminds me that there might be something bigger out there in the universe. 

About a month ago, I was on a long walk. I was debating about whether or not I felt like it was the right time to start looking for a job. My daughter is older and much more independent, so my main role as her caretaker and driver is no longer taking up as much of my time. But I wasn’t sure I was mentally ready to get a job. I’d been having such a rough time. And, after 16 years of not working in traditional settings, I was feeling insecure about whether or not I could even do a job, let alone figure out how to get someone to hire me. I was feeling confused and frustrated. 

At some point during that walk, while I was giving myself a little pep talk about not letting my insecurities and anxiety stop me from trying, I realized that I might try and not succeed, but that not trying at all would be worse. And at that very moment I saw a dollar bill on the sidewalk right in front of me. It was folded up into a little square and laying in front of me as if someone had put it there for me to find. Again, I’m not particularly superstitious, but I truly felt in that moment that it was a message encouraging me to follow the positive thoughts I was having. Perhaps the universe was telling me that this was the path I needed to follow. 

Within a month I found a job. 

Today the penny I found was in a little puddle of water from the recent rain. It was old and corroded, its surface barely recognizable. But I instantly felt love with that old penny. No matter what it had endured, it had survived to provide me a little hope this morning. 

Thank you penny. 

"Sick Upon Sick": Handling Sickness When You're Already Chronically Ill

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."

Our Gratitude List for January. What Are You Grateful for This Month?

Sometimes it's easy to focus on the negative things in our lives. That's why we wanted to take a day each month to remember a few things that we are grateful for. Here are some things we are grateful for this January!

Mara:

—The rain. I am grateful we've had so much rain this month. Yes, I'm not always grateful in the moment—like when I'm getting soaked or my floors are covered in muddy paw prints. But I am thankful that we've gotten some relief from the terrible drought we've been suffering through. (I live in Southern California.) 

—An extra car. We purchased a car for our daughter last month. She's turning 16 in a couple weeks and we decided to get her a car early for two reasons: 1) we had time to shop during the holidays; and 2) with the rebates on electric vehicles, it made sense to get the car before year end. We debated about whether it was worth it to pay an extra month of insurance, but in the end we decided it was. Well, last week I was sitting at a traffic light when a truck turned left and ripped the bumper off my car. Nobody was injured because it was going slow (I wasn't moving at all), but it has taken my car out of commission for a while. So I am extremely grateful that there is a car on hand that I can use while my car is getting fixed. 

—Health Insurance. Ok, I know this is a repeat from last month's list, but with the pending repeal of the ACA, I feel it's important for me to remember how grateful I am that my family does not have to worry about whether or not our insurance will go away. A couple of weeks ago, my daughter thought she had pink eye. She's never had it before so we weren't sure, but because we have insurance it was not a problem for us to go to urgent care and get her medicine. We didn't have to wait to see if it got worse. We didn't have to decide if it was really important. We could just go and get her taken care of. It kept her eyes from become more infected. It made it less likely that anyone around her would get infected. We were able to catch it early enough that she didn't even have to miss school. So I am once again so grateful for health insurance. And I am taking this moment to say that I believe it is the right of all people to have access to medical care.

Toni:

Here are three things I'm grateful for this first month of 2017:

—Hail. Like Mara, I'm grateful that the rain has ended the drought for us for now (I live in Northern California). Last week we were treated to a rare occurrence in our part of California: hail that didn't melt right away when it hit the ground. When it started, we opened the back door and watched (and listened) as it turned the backyard white. My husband took a picture of this unexpected treat:

—Alex, dog walker and trainer. With all the rain, it's been hard to exercise our dog, Scout, and this is a dog whose energy is limitless. Alex takes Scout out three times a week no matter what the weather is like. At times this month, it was pouring rain all day, but Alex always showed up on time. I'm grateful for his reliability and for his willingness to watch Scout whenever she needs to be left alone for longer than I'm comfortable with, such as when I have to go to Sacramento to see the doctor. (Speaking of doctors, I agree with Mara about everyone having the right to medical care. Dozens of countries, many that are much poorer than ours, provide universal health coverage for their citizens. It's tragic that we may lose the gains we've made in this direction under the ACA.)

—My husband's work at Folsom Prison. He's a volunteer chaplain at Folsom. He goes twice a week, sometimes three, and teaches mindfulness meditation to some of the most hardened prisoners to help them with impulse control, pain management, and the depression that can set in when you've been in prison for decades. 

He is changing their lives. Every week he comes home with stories about one of his "guys" having shared how he's benefitting from what he's learned. One week, an inmate shared how he was about to start a fight with someone (which would land him in solitary) but stopped himself with some mindful breathing, which gave him time to realize that what he was about to do would only make things worse for him. Some of the men have even started feeling compassion for each other. The work my husband does there is remarkable and I'm grateful to him for it.

I wonder what February has in store for me.

The Bumpy Road to Acceptance and the Happiness It Brings

I recently heard the quote “Being an adult is learning to live with disappointment.” I’m not sure I agree with it, but I understand what it means. It means that no matter how amazing our lives are, we aren’t always going to get what we want. And being an adult means we have to learn how to cope with disappointment. 

And yet, I think it’s more helpful to focus acceptance rather than disappointment. I think adulthood is about learning to accept things with grace. Accepting the good things and accepting the bad things. Taking responsibility for the things we need to be responsible for. 

Growing up, I was considered mature at a young age. People always told me I was a little adult or they'd say, “Oh I thought you were so much older.” And that was because I took on a lot of responsibility as a young person and that impressed people. So I grew up thinking I was adult because I could do all these things that were considered “adult.” But the reality was I had no idea what it meant to be an adult. 

Yes, I had no problem taking on responsibility for big projects. I could choreograph an entire musical full of adults. I could tell people what to do and be super organized. But I had very little idea about being responsible for my own life.

Growing up, my parents were great and they were supportive of me in every way. I almost think they were too supportive. I became a grown-up person without ever understanding how to get my laundry done regularly. Or how to clean up after myself in the kitchen. I grew up not realizing that it was an inconvenience to everyone around me if I left my dirty cups all over the house. I was well into my 20's before I didn’t expect my parents to solve problems for me when it wasn’t “convenient” for me to do so. 

My teens and my early twenties are filled with memories of waiting for my life to start. I was in a rush to get out high school and to go to college. I was in a rush to get out of college and get married and get a job. I was in rush to have kids.  

Those years are a blur to me because I kept thinking "This is what I’m doing until my real life begins." I thought I didn’t need to worry about being happy because I assumed I’d be happy when I finally was "grown up." The problem with thinking this way was that, at some point, I realized that life was passing me by and the idea of arriving at the mythical place of “happiness” wasn’t happening.

It wasn’t until my late twenties, after I had a child, that I finally began to understand what it meant to be an adult. I couldn’t not do the laundry just because I didn’t feel like it. I couldn’t stay in bed if I didn’t feel well. Frankly, aside from my mom—who will probably always feel sorry for me—nobody was feeling sorry for me. I was an adult. What felt like overwhelming responsibility and inconvenience to me was simply what millions of other parents had faced all through time: being an adult. 

Even after having a child, I felt as if I still had so much time. I thought there was the possibility of starting an amazing company or becoming famous or doing whatever I wanted at the time. But when I reached my 30's, I started to get an unsettling feeling of dissatisfaction. I realized that most of those dreams were probably no longer a possibility. I began wondering to myself, “If I never do anything more with my life, will I be okay with that?” For several years I was unsure and this led to that underlying feeling of dissatisfaction.

Then I started second-guessing my life. I'd think, “If I'd just done this I'd feel happier” or “If I just do that I’ll feel happier.” But no matter how much I accomplished or tried to become what I thought I wanted to become, the feelings of insecurity and doubt remained. I got a job. I lost the baby weight. I did some professional acting.  I started a dance company. But it was never enough. 

Finally, I realized that nothing I did was going to make me feel better. It clicked inside my brain that to truly feel better I had be able to accept what I am. I had to be able to accept what I am right in this moment. 

To be honest, if I could truly explain how I came to this revelation, I'd probably be a millionaire. The idea that true happiness is to be found by accepting yourself has been around a long time. But no one can tell you exactly how to do it. And it’s not easy. It’s not something you can simply read about and suddenly feel different. Even after I realized that acceptance was the key to my feeling better, it didn’t change everything for me overnight. 

It’s taken years. It’s taken years of wrestling with the concept of acceptance—even challenging the idea—before I finally learned to trust that my life isn’t about what I have done in the past or will do in the future. It’s about right now. That if I can accept where I am right now, then I will be able to accept myself where I am in the next moment. And the next. And the next. 

Even now, there are often times when I'm filled with doubts and fear. When that happens, I can feel myself getting caught in the whirlwind of fighting against what is or find myself wondering “What if?” But the difference is that I'm able to catch myself now. I'm able to slow myself down and remind myself that whatever scenarios I’ve created in my mind don’t matter. All that matters is this moment. All that matters is putting one foot in front of the other; taking one breath after another. 

And while this state of mind doesn’t solve all my problems—I still often struggle—it definitely helps. It helps me accept that the life I am living is the life I am living. I can choose to enjoy it—to really appreciate it—or I can choose to be unhappy. I am choosing to try to be happy. I am choosing to accept what my life is. It doesn’t mean that I'm never disappointed, or that I will stop growing or trying new things and reaching for new stars; but whatever happens...is what happens. And I will choose to try and make the best of it. 

For my mom, becoming chronically ill has truly challenged her ideas about acceptance. Here are her answers to my questions about it.

When you realized that your illness was probably chronic, what was your reaction?

My reaction in the early months and years was denial. Denial, anger, and a lot of self-blame. It was because I thought back then that people didn't get sick and not recover, and the people around me seemed to feel the same way—even if they weren't trying to be judgmental. So I thought, what's wrong with me that I'm not getting better? There was a lot of self-blame which is very common when people first become chronically ill.

My reaction changed when I realized that this illness was just an illness. Even though I was sick, I was still a whole person—just as anyone who is disabled is still a whole person. A person missing a limb is still a whole person. That's when I stopped blaming myself. And when the self-blame went away, so did a lot of the denial and anger. I still get angry every once in a while, but it used to be the way I felt all the time. It was awful. I hid it. I hid it from my kids and my friends. But my husband knew. And I knew.

How long do you think it took before you were able to start to come to terms with acceptance of your illness?

I get asked that question a lot, and it always throws me because it's been 15 1/2 years since I became chronically ill, so it's getting harder and harder to remember. Not harder to remember when I got sick—that's seared into my mind. But it's hard to remember when I started to turn my mind around. 

So, what I do is count backward from when I started writing my first book because that was when the mental healing began. I would say it took about six years to start to accept this illness. I can only hope that my books, my writing, and maybe these interviews help other people not take so long to start moving toward acceptance. Life is too short.

For some people acceptance is the same thing as giving up, or resignation. For you, what is the difference between acceptance and resignation?

Acceptance, as I see it, is acknowledging where you have to start in your life. And for me the main feature of where I have to start is that I'm sick. I'm chronically ill. There's hope in acceptance because you can't take steps to make things better for yourself until you stop and acknowledge how things are for you right now.

So, take a moment to truly acknowledge how you feel and take that as your starting point. For me, that starting point is: "I'm in a body that's sick." Whatever your starting point is, from there, you can open to possibilities of what you might be able to do within the limitations of your illness.

I can't take credit for the expression "start where you are." The Tibetan Buddhist teacher Pema Chodron has a book titled, Start Where You Are, and that title really resonated with me, so I use it to help myself and help others. The emphasis is on start—starting to see possibilities for making changes in your life. Start with an open and mind and an open heart. That's acceptance.

Resignation, on the other hand, is giving up on life. There's tremendous aversion in it and a lot of anger and resentment. It's the attitude of "Life is unfair. I give up. I'll just be miserable from now on." We've all been there. That's resignation. You're treading water when you're feeling that way, and so there's no chance to improve your life.

But there's hope in acceptance.

I went through a resignation phase. But then I realized that, even though I'm limited in what I can do, I'm still alive. You talked about this in your terrific piece above—how you've chosen to be happy. (Sorry for a little detour here, Mara, but I want to comment on one thing in your piece—I don't feel sorry for you. I do worry about you at times though, so that sounds like a more accurate characterization—to me anyway!)

Okay. Back to choosing to be happy. Obviously, no one can be happy all the time but, like you, I've also chosen it as a direction. I choose to find things that are fulfilling to do with my life. I choose to look for joy where I can find it. 

When you're resigned you don't move forward and so you can't even make choices that are likely to make things better for you. That's why resignation is a sad place to be. We've all been there, but hopefully by recognizing the feeling when it arises, we can learn to acknowledge it and move on.

What is your advice for people who are struggling with the idea of acceptance of their current situation?

I have to go to some of the Buddha's teachings here to answer that. Most people have heard of the first noble truth. In it, the Buddha provided a list of the experiences we can all expect in life. And one of the things on that list is illness. There are other things, such as growing old, separation from loved ones, etc. (I'm sure these lessons are included in other religious teachings as well, but I am familiar with Buddhism.)

So I look at the Buddha's list and think, "Wow. Chronic illness is a natural part of the life cycle." That teaching has helped me a lot. It made a huge difference to me to be able to say that this is one of the things on the list that all of us can expect to experience even though it's unpleasant. And so, since illness an inevitable part of human existence, I'd advise people not to fight their current situation. Try to see it as just the way your particular life is unfolding. Illness could happen to anyone. 

It's also helpful to remember that everyone has things about their lives they're not happy with. For those who are healthy, it might be not being able to find love or hating their job. Life offers us many wonderful things but it also has its share of sorrows, and they're on that list from the first noble truth. 

The response to a tough situation should not be resignation because that carries so many negative and painful emotions with it. That said, if it's too hard to move right away from resignation to acceptance, I suggest practicing self-compassion. All that means is recognizing that you're suffering and being nice to yourself about it. So, acknowledge how hard it is to be sick or in pain, and be nice to yourself about it. You can even speak kindly to yourself about how hard it is. In my books, I suggest crafting self-compassion phrases that you can say silently to yourself, almost like a mantra. 

There's no way around it, it's hard to feel sick all the time. Really hard. But it's easier if you can accept it. To do that, take your chronic illness as your starting point and then look around for what might be enjoyable for you. And always, always, be nice to yourself.

What It's Like to Be a Caregiver and the One Being Cared For

If you struggle with a chronic illness, mental or physical, having people in your life who are close to you can be a blessing and a burden.

Sharing your life with someone, even under the best of circumstances can be hard. Add struggles into the mix—whether they be sickness, or finances, or any of life's other challenges—and relationships can be difficult.

Never has this been more true for me than when I've suffered during extended periods of depression. During these times, dealing with myself seemed almost impossible. Add to that the burden I felt to be a good mother to my daughter and to be any kind of spouse to my husband, and it felt like an insurmountable feat. 

I felt like I was causing them to be unhappy, but there was nothing I could do to fix it. My feelings of guilt made the depression even more oppressive. I am fortunate to have a husband who has always been supportive of me. And even though he never expressed anger towards me, or tried to make me feel bad for the times when I was unable to support him back or even contribute much to the relationship in any way, the feelings of guilt I had were sometimes unbearable.

I’m guessing (although my mom and dad will explore this further in the interview below) that people with physical illnesses or disabilities have similar, if not more extreme, feelings of thinking they're a burden to their loved ones and caregivers.

We wanted to take some time to explore the role of caregivers. So in this blog, as an added bonus, I get to interview my dad who has spent the last 16 years being my mother’s primary source of mental and physical support.

Like me, my mom is extremely lucky to have a spouse who has supported her unconditionally. We know not everyone is as fortunate.

To clear up any potential confusion in the interview, my parents are Toni (that's my mom whom you all know) and Tony (that's my dad). 

Toni about Tony:

Describe how having a chronic illness has changed your marriage.

It's been hard. In some ways, we're closer because of it, but it's been hard anyway. For one thing, we don't go out into the world together and do things. When you don't do things together, not only do you miss the fun of sharing an activity, but you also don't get to share with each other your impressions of the events or of the people you visited with. So, it's harder for us to share our lives because we do so much less together.

In addition, because of that, we've developed, for the first time in our lives—and this is not necessarily a bad thing—different interests because we're not able to do the same things. This means we have to work harder to make sure we don't grow apart. We do that by making an effort to ask each other what we've been up to, by playing some games we like, and watching TV together.  But it's a challenge. I think all partners in this situation have to actively make an effort to keep from growing apart. 

I also think it's important to keep your relationship from being only about the fact that one of you is chronically ill. The fact is, you could spend all day talking about it, but it's a good idea to find things to talk about and to do together that aren't related to being sick.

Has there been any time during your sickness when you wondered if your marriage would survive?

No. And I say that with a lot of gratitude because I know how lucky I am in that regard. It's partly because we had a strong marriage before I got sick, and we'd been together a long time already. But that's us. I hear from people all the time whose spouses or partners have left them.

It's one of the true tragedies of chronic illness—people get abandoned. Especially a parent with children. It happens mostly to women. Their spouses or partners just take off. They don't have the desire or the ability to be a caregiver. Again, this is something I've talked about before—how our culture comes up short in educating people that this may happen. It says in the marriage vows "in sickness and in health," but people don't realize they might actually have to be a long-term caregiver for a spouse who gets ill. 

So, no, I've never wondered if my marriage would survive because I can't imagine a scenario where that would happen. But I am very aware of how fortunate I am, and I count that blessing every day, even if I don't express it to my husband.

Can you give people who are sick any advice on how to cope with feelings of guilt they might have that being sick is a burden to their caregivers?

First of all, I think that feeling is understandable. I've felt guilty at times. I'm doing better now, but I've said to my husband too many times to count, "I've ruined your life," or "I'm so sorry." He always assures me that I haven't ruined his life and that there's no need to apologize, yet I still say these things to him sometimes.

The way I've been mostly able to overcome feelings of guilt is by recognizing this this isn't something I had control over. It's not my fault. People get sick, whether mentally or physically. It's one of the risks of being alive, so feeling guilty about the burden that it might impose on your caregiver serves no useful purpose. 

Actually, in my view, guilt never serves a useful purpose. The reason I say that is that it handcuffs us mentally and that keeps us from problem-solving and moving in a positive direction in our lives. What I mean is that it keeps us from thinking about how we might make things better for ourselves and our caregivers. I know it may be easier said than done, but I suggest that instead of spending your time feeling guilty about being a burden to your caregiver—do something nice for him or her. Think of some little thing you can do to show your appreciation, because guilt doesn't solve anything. And there's no reason for it because this stuff happens in live. It's nobody's fault.

So you instead of feeling guilty about being a burden to your caregiver, you would say it would be more helpful to focus on being grateful for them?

Yes. Think of the ways you're grateful for your caregiver and do something to show him or her that you feel that way. It may only be saying "thank you" or giving a hug. For example, on a day when I'm feeling good enough, I go in the kitchen and do the dishes. My husband does the cooking and the dishes every single day. So rather than feeling guilty that he does this, I try to pitch in when I'm able. It's a small way of thanking him for all that he does for me.

Do you have any advice for people who are chronically ill who have trouble communicating their feelings to their caregivers?

This is something I cover a lot in my books, and I offer several ideas for what to do when you're having trouble communicating. One suggestion is to have a third party present. That person can give you support and might help you express yourself in ways you're not able to.

Here's another suggestion that has helped people a lot. If you're having trouble communicating your feelings to your caregiver—write him or her a letter. I thought of this idea because, many years ago, I had friends who were in couples therapy. They were unable to speak to each other without one or both of them shutting down, so communication was impossible. Their therapist suggested that they write letters to each other. The wife told me that it led to a breakthrough because each of them was finally able to understand how the other one felt.

I know it can work in a caregiver situation because I mentioned this idea of writing a letter in an article that was published online, and I got an email from a reader who said, "This is how I got my mother to understand my chronic illness." Instead of taking care of her daughter, her mother was basically harassing her. The mother was constantly telling her to get up and go out—that kind of thing. So the daughter wrote her mother a letter in which she described what her day-to-day life was like and how hard it was to feel sick all the time. She said it completely turned their relationship around—her mother became her greatest support. 

So it's an interesting idea. I actually wrote a letter myself early on in my illness. The text of it is in my first book, How To Be Sick. I sent it to some of my friends, explaining why I'd suddenly become so undependable—having to cancel visits at the last minute, etc. I'm not sure what effect it had, but I do know that I felt better having written it. Actually, I now remember that two of them said something like: "This was really helpful. I didn't realize what was going on with you." So the idea of a letter—or an email—goes beyond just caregivers as a way to communicate what you're going through.

One more thing on this subject, In my most recent book, I wrote about something called "active listening." It's another way of facilitating communication. The key is to use the word "I" more than the word "you." This is effective, first, because the word "you" can be taken as a criticism and second, because the word "I" simply expresses how you feel and no one can deny how you feel. This is called "sending I messages instead of you messages." So always check your speech and check your writing and try to express things from your point of view. No one likes to be attacked, even gently, so this is a non-confrontational way for you to express how you feel.

[Note from Mara: My mom's latest book, How to Live Well with Chronic Pain and Illness has two chapters devoted to helping caregivers.]

We were fortunate that my dad, Tony, was willing to contribute some thoughts this week about being a caregiver and how my mom's illness has affected him.

Tony about Toni:

As a caregiver, what are the biggest challenges you've faced?

The appearance of chronic illness in life may not be a welcome change, but we didn't have much to do with our appearance in life in the first place, so the biggest challenge is learning how to deal with what we didn't plan for and don't want, without making things worse for everyone involved. You can't expect to make things better if you can't keep from making them worse in the first place, so acting out of disappointment, frustration, or anger doesn't improve anyone's life. The biggest challenge is overcoming our wish to hold onto the way we'd rather things be.

Do you ever feel angry at Toni for being sick? Do you ever feel frustrated about it? And if you feel either one of those, how do you work through those feelings?


I don't feel angry about it, but I do feel sad. I can see how hard it is for her to be unable to do things even as simple as going out to dinner or joining others in socializing in the house. It's pretty unrealistic for me to be angry because she can't regain her health—she certainly would if she could. Perhaps realizing that life comes with a raft of stuff you don't want no matter who you are is working through it? 

If you met someone who just discovered they were going to be the primary caregiver for someone with a chronic illness, what are a couple of pieces of advice you'd give them to ease their transition into the caregiver role?

Any specific advice I might offer would depend so much on the particular disability. A caregiver who needs to deal with someone losing mental capability as with Alzheimer's is very different from having to deal with the problems associated with a condition like Toni's where she is still fully present mentally but pretty much stuck in the house feeling lousy. 

Overall, I'd remind someone just beginning life with chronic illness—either as patient or caregiver—that life doesn't unfold according to any model we have of how it should be, and that expecting (much less requiring) things to be a particular way is only setting ourselves up for the added frustration and anger that come from not getting what we want. If we don't roll with the punches life throws at us, they'll knock us right down and leave us there. So I guess my advice would be to do the best you can and learn along the way.

Toni and her husband (and caregiver) Tony on their wedding day.