From Toni: A Short History of My Life Before Chronic Illness

When big events happen in our lives, it's easy to forget that there was life before we were married, or before we had kids, or before we got into an accident.

When you meet my mother it's hard to believe that she has ever been anything other than the loving, gentle, adult person that she is now. If you met her after she became ill, then it might not occur to you that she was once a high-powered professional, working in a high stress environment as the dean of students at a law school and as a law professor.

But as is the case with everyone, the life experiences we accumulate form who we are. They become the roadmap that guides our future decisions. 

So here's a piece my mom wrote about her early life. She has written extensively about the years when she became ill. But this is the first time she is writing about some of the critical events from her formative years. 

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Thanks for this idea, Mara. It's certainly been odd for me to write about my life before I became ill, but I've enjoyed it a lot.

I’ll start with my father. I always start with him because he was one of the great joys of my life...and one of its great sorrows. When he was an infant, his family fled modern-day Ukraine to escape the pogroms (government organized or condoned anti-semitic riots in which thousands of Jews were killed). 

He grew up in a poor area of Los Angeles. He didn't have money to go to college so he started a business and became very successful. He and his sister, my Aunt Jen, opened one, then two, then three, then four upscale gift shops throughout the Los Angeles area. As a little girl, it didn't seem like anything out of the ordinary to me, but looking back, it was an impressive accomplishment.

Their offices were on the second floor of the store on Hollywood Blvd. This was when the boulevard was still glamorous. As a young child, I’d go to work with my dad when school was out. He’d give me “grown-up” things to do in the store. Then we’d go to our favorite lunch place and always order the same thing: a hamburger and a vanilla milkshake for each of us. Afterward, I’d spend time on my own walking up and down Hollywood Blvd. I wasn’t even 10 years old, but it was completely safe.

My dad was always fun to be with, whether I was going to work with him, or watching him in his little backyard carpentry shop, or just hanging out together. He was soft spoken and gentle. I have not one memory of his being unkind to me.

Then, suddenly, my world fell apart. My dad got leukemia and died within six months. I was 10 years old. I mourn that loss to this day, although I’ve come to terms with it in the sense that I’m able to see our life together as a complete life, even though a short one.

My mother tried to take my dad's place in the gift shop business, but it was too hard. (They were an interesting match: my dad with his high school diploma and my mom with an M.A from Stanford—a rarity for women at that time.) The strain of raising two children on her own, running four stores in different locations across the L.A. area, and having my domineering aunt as a business partner was too much for my mom. 

She told me about the day she decided she had to get out of the business. She was driving home from Hollywood to West L.A. where we lived. She was so tense and exhausted that she suddenly found herself driving on the wrong side of the road. That was it. She told my aunt she was finished, and they sold the business. The result was that we became downwardly mobile instead of continuing the upward climb we'd been on due to my dad's success in business. While our family friends moved to more upscale neighborhoods, we moved to a more modest one.

My junior and high school years were not happy ones. I missed my dad all the time, and I was embarrassed because I was the kid whose parent had died. I felt guilty about that embarrassment because it contained an element of anger at my dad for dying and making me stand out like a sore thumb, as the expression goes. 

That guilt lasted until I read Dick Cavett’s memoir when I was in my late teens. He lost a parent when he was ten, just like I had. It was his mom. He wrote that he felt guilty because he was angry at her for dying and making him feel embarrassed around other kids. Knowing that someone else felt how I did made the guilt and the embarrassment go away, just like that.

When I was in the 10th grade, my mom was swept off her feet by a man named Nathan who was, shall I say, not honorable. He was handsome and charismatic—and she was very lonely. They got married and life became miserable for me and my older brother, although as a senior in high school, he didn't live at home for long. I have dozens of stories I could tell about Nathan, but I’ll only share two. 

The first is that he made a pass at me. I fended him off thank goodness, but it was traumatic. I told my brother in secret but he went straight to my mom about it. She told me that the reason Nathan had tried to seduce me was that I reminded him of her when she was my age. She actually wanted me to feel sympathy for him.

When the story got out, my mom and Nathan were "driven" out of L.A. by relatives (on both her and my dad's side of the family). The two of them moved to England where they lived for the rest of their lives. He died about 10 years before she did. After his death, my mom and I tried to mend our relationship. She visited me in California every other year or so, partly because I was now married and had a baby. 

It took a long time, but eventually I forgave my mother for how she handled the incident with Nathan. I realized that her taking his side reflected how desperately lonely she was…and how desperately in love with him she was. Forgiving her was something I did for myself. I know, because it felt so good.

A second dishonorable thing that Nathan did was to raid a trust that my dad had set up for me and brother. We were to come into a sizeable amount of money when we turned 25, but the trust had a provision that allowed my mom to get at the assets if she needed them to support her children. Well, she didn’t need money to support us, but Nathan talked her into going to the bank trustee and convincing that person that she did. And so, the money that my father so carefully set aside for me and my brother went to Nathan in large part.

When I went to college, I felt reborn. Not only did I get away from Nathan (they hadn't moved to England yet) but I entered a whole new world of learning and friendships. It was at the University of California—Riverside, that I met Tony, my husband. We were dating each other’s roommates and so found ourselves hanging out a lot together while we waited for our respective dates. That friendship slowly blossomed into love. We became a couple the night of Kennedy’s assassination. At the risk of giving you TMI, our friends had gathered, in shock, at someone’s house. All of us were drinking heavily. I got so drunk that I threw up, not in a bowl, but on Tony. We’ve been inseparable ever since.

We moved to Davis so he could go to graduate school (he has a Ph.d. in Sociology). Four years after giving birth to our son, Jamal, we adopted Mara from Korea. My brother was adopted, so it seemed like the natural thing to do after having had the experience of one pregnancy. Life was good in our family, although we had the typical problems: money was tight, Jamal and Mara didn’t always get along when they hit their teens. Still, those were wonderful years in retrospect. I love my children with all my heart.

After Mara had settled into our family, I went to law school and then joined the faculty at U.C. Davis School of Law. When Jamal and Mara went off to college, I agreed to go into administration and became the law school’s dean of students. I stayed on that job for six years. I like to joke that that’s when my hair turned grey.

When I returned to teaching, I loved being back in the classroom and, based on my evaluations, the students loved having me. My children were in good marriages with spouses whom I loved. In short, I'd never been happier, both personally and professionally. Then Tony and I took that trip to Paris where I got sick…and that brings me to 2001 and the chronic illness that I write about so often.

Thank you so much for reading this brief story of my life.

Some last-minute editing on the bed

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.

Your Parents Are Both Named "Tony"? No Way!

So I grew up in a house with two parents, both named “Tony” and both “doctors.” My father, Anthony, has always gone by Tony and has a Phd in sociology. My mother, Antonia, has always gone by “Toni” and has a Juris Doctorate. So here’s how answering the phone in my house went:

Me: (answering the phone) Hello?

Caller: Hi, could I speak to Tony?

Me: Which one?

Caller: The one that works at the University.

Me: They both work at the University.

Caller: I’m looking for Doctor Bernhard?

Me: Both my parents are named Tony and they could both be called Doctor Bernhard.

Caller: They are?

Me: Yes.

Caller: Oh, well I guess I’m looking for Tony the man.

Me: Hold on.

This would sometimes happen multiple times a day. For people who knew our family it went like this:

Me: Hello?

Caller: Hi, can I talk to your mom?

-or-

Me: Hello?

Caller: Hi, can I talk to she Toni?

See, much clearer.

Explaining this whole name situation to teachers and new friends was also a challenge. Here’s a conversation with a friend:

Me: My dad’s name is Tony.

Friend: Wait, I thought your mom’s name was Toni.

Me: It is.

Friend: Your parents have the same name?

Me: Yes. 

Friend: Isn’t that confusing?

Me: It certainly can be.

Friend: That’s funny.

Me: Yes it is.

Repeat this conversation about 50 times and there you have my childhood.

I haven’t met many other people who have parents with the same names. I did have a friend in college whose parents were named Patrick and Patricia—Pat and Pat. We pretty much bonded instantly and knew we would be friends.

Supposedly my parents did contemplate naming my older brother Tony, but let’s all be glad they didn’t. There was enough “which Tony do you want?” deciphering in our house as it was.

Toni here:

Here are some of my experiences having the same name as my husband. (As Mara said, neither of us use our full names: Anthony or Antonia).

First, I recall that our two kids sometimes complained to us that callers were rude to them when they’d ask which “Toni” they wanted to speak to. The caller would think they were being a smart aleck kid and would say something to them like, “Don’t get smart with me. Let me talk to Toni (y) now!” Of course, that response still didn’t let Mara or Jamal know which one of their parents the caller wanted to talk to. 

I'm fairly certain that they both told me at some point that they didn’t like answering the phone because of this. Do you remember this, Mara? [Mara: No, I don’t remember people being rude, but I do remember it being confusing for people.]

Second, Tony and I have heard every joke that can be made about our names being the same, the most common one being: “You hate each other, right? You just couldn’t resist getting married since you have the same name.”

Third, people have nicknames for the two of us; we’ve heard every one of them multiple times: “Toni (y) squared,” “The two Tony’s,” “Tony he and Toni she.” People have proudly told us their nickname for us as if they were the first ones to invent it. We never tell them that we’ve heard the nickname dozens of times before.

Lastly (and most interesting to me): It is never a problem for Tony and me. People don't believe me when I tell them this. But if he calls out “Toni,” I know he means me. And if I call out “Tony,” he knows I mean him. (If we start talking to ourselves I guess this would become a problem!) So the two of us never notice that we have the same name even though our friends tell us it’s a hassle for them. One of them will say to the other, “I called Toni today,” and the other person has no idea which one of us got that call. (Some of them solve this by saying “Toni she” or “Toni he.”) 

I'm sorry for the hassle this has caused family and friends over the years, but I love how our having the same name goes unnoticed by the two of us almost 100% of the time!

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.

Expect the Unexpected: Two Versions of the Same Adventure

One of the many things that has been hard for me to adjust to as an adult is that we have to expect the unexpected. When I was younger, I always assumed that when I grew up, all the doubts about how to handle life would somehow evaporate. But as I finally grew into adulthood, it became clear that no matter how much I planned, no matter how much I thought about things...life didn't always do what I thought it would.

This has caused me endless hours of stress and anxiety. Especially after my daughter was born.

I like to know what’s coming. I like to feel like I have a plan. But there's simply no way to plan for everything. Believe me, I have tried. It ends up being very expensive, very frustrating, and not very effective.

This desire to want to be able to plan for every eventuality reminds me of a trip to Hawaii my family took when I was in middle school. We were vacationing in Kona on the Big Island. We were staying in a condo and had rented a jeep for the week to allow us to do some exploring. Needless to say, the trip took an unexpected turn.

Mara’s memory of the event: 

I was only 12 years old when we took this trip. I can’t say I remember very much. It was a typical family trip, we saw some of the major sites, did some shopping, ate at lots of restaurants. 

One day we were doing some sightseeing—including exploring a valley that was full of lush foliage and beautiful waterfalls. It felt very exciting. My dad was driving and I don't think he knew where he was going. There were no google maps or Siri to help us. I'm sure my mom had a map of the island with her, but there was no street map of where we were because there were no streets. There were no roads. At best they could be described as wide trails.

As we were driving, we crossed a couple of small streams, feeling brazen as we splashed our way across. Feeling adventurous, we encouraged my dad to keep driving. Eventually we came to a river. This was no little stream, it was a bonafide river. There was clearly a strong current as we saw the water swirl by us. We must have discussed whether or not we should try to cross it, although I don't remember it. But there must have been questions: Is the water too deep to get across? Is the car powerful enough? Should we turn around? Should we go for it? We went for it.

We got stuck. 

Like really stuck. The rocky bottom of the river trapped one of our wheels. I don't remember if the engine immediately died, but we were clearly not going to be able to maneuver the car forward or backward. 

Water quickly started flooding into the car. My parents hurried us out. My dad might have carried me because I recall the current being swift. My parents and my brother carefully waded through the water. One of my brother’s flip flops was swiftly swept away from us—we all said it was a sacrifice to the river gods. Perhaps it would bring us good luck. 

I'm not sure if the sacrifice of the flip flop was the cause, but shortly after we evacuated the car, as we stood on the banks of the river trying to figure out what to do, a jeep full of local boys stopped for us. I don't remember a lot about them other than they were clearly amused by the tourists who had abandoned their car in the middle of the river. But they were friendly. In very Hawaiian style, they seemed unconcerned about a bright red jeep in the middle of the river. And they immediately offered to help us. They took a tow line off their jeep and tied it to ours. They pulled our car out of the river.

Just like in the movies, we opened the doors and water poured out of the car.

We were all nervous to see if the car would start. Would we have to somehow try and get a tow company to find us in the middle of valley and tow us out? Was that even possible? 

The car started.

Being only 12, I’m sure there’s a lot missing from my version, but this is one of the only parts of that trip I remember. Once we were able to start the car we were able to laugh about it. I was young so I wasn’t worried about any financial ramifications of drowning a car so what I remember is that it was scary, and exciting, and funny and memorable. I remember how grateful we were to that group of local kids who were so friendly and helpful to strangers.

It was a bonding moment for our family that we often refer back to.

This memory has come in handy at times when trips I'm on have taken an unexpected turn. When something doesn't go the way I planned, I remember that my family once got stuck in a river, and that everything turned out fine. The trip wasn’t ruined. We were able to recover and move on. It reminds me that we are able to handle what we are faced with--even if we can’t prepare for it. 

Toni’s memory of the event:

Our memory of this event differs in several ways, but it was wonderful for me to relive the day through Mara’s description. Several of our recollections differ, but it’s funny that she mentioned her brother Jamal's flip flop floating down the river because that memory has stayed vivid in my mind all these years later.

So, here’s my version of events. We were driving through the lush Waipio Valley on the Big Island in our four-wheel drive jeep and had crossed several streams. When we got to one that was more river than stream, we talked for a few minutes about whether we could get across it. We were having so much fun on this adventure that we talked ourselves into thinking we could make it across. 

We couldn't.

When we got stuck in the middle of the river, the engine went dead, and the jeep started filling with water. We hustled out of it as fast as we could. Thankfully, we could still open the doors even though the water level inside was almost seat-high.

Here’s where my memory differs from Mara’s. It wasn’t the group of locals who pulled our jeep out of the river. It was a very old man. I can still see his face. The local kids she referred to (I’d say they were in their late teens) did indeed stop and help us though. I think there were four of them.

At first they teased us as if we were stupid tourists, but when we agreed with them, they changed their attitude toward us completely. They took us under their wing and began to take care of us. They stayed with us until the jeep started (as I recall, it took a while for the engine to turn over once the car was on dry land). Then they even accompanied us out of the valley (up a steep hill that only a four-wheel drive could negotiate) and helped us sop up the water in the car, using what towels we had. We’d fill each towel with water from inside the jeep, wring the towel out and then do it again. This took a while—maybe an hour. This wonderful group of kids stayed with us and became our protectors.

Now, about the old man. At some point, when we were on dry land but the jeep was stuck in the middle of the river (tilted a bit as I recall), I started walking back up the road to look for help. One family member came with me, but I don’t remember who it was. We came to a rice paddie and there was a man who I’d guess was in his 80s, sitting in a battered old jeep—it looked as old as he did. I asked him if he knew anyone who could help us and he said that he could. He drove us to the river and got a cable out of his jeep. We attached it to both jeeps and then he slowly drove his until it finally pulled ours out of the water.

We were so grateful and he looked so poor that Mara’s dad reached in his pocket and tried to give the man a 20 dollar bill. “No, no, no” he said, refusing to take it. We thanked him over and over...and then he drove off as if it had been no big deal. At some point during all of this, the local kids came upon us in their own jeep and, as I recounted, stayed with us until all was well.

This is one of my most treasured memories from the years of raising Mara and Jamal. My husband and I may have been negligent as parents to have tried to cross that river but, for some reason, I've never felt bad about it. Maybe it’s because, as Mara said, it was such a bonding experience for our family.


Writing about it here fills my heart with love for my husband and my two children.

Waipio Valley

You Don't Look Sick

“You don’t look sick.” Four simple words, but perhaps the phrase that over the years of my mom's illness has added the most to her suffering. “You look great, you must be feeling better.” People are just trying to be nice, but those kinds of comments can make her stomach turn even though she smiles in return. It’s that smile that masks the discomfort of her aching body and her rapidly beating heart. It’s that smile that keeps people around her from realizing how bad she’s feeling. 

When people say, “You don’t look sick,” she doesn’t want to be rude so most of the time she does the polite thing and simply replies with “Thank you” rather than trying to correct people's misconception. If it’s a closer friend, she might say, “I feel pretty sick though,” so they know what’s really going on since the truth is that she's very sick. It can use up all her energy to take a short walk or to go out for a rare meal at a restaurant. And when my mom sees herself in the mirror, she sees a sick person. 

Just as this is true for her, those with mental and physical illnesses usually have no outward sign that they’re not doing well, and this makes their struggle even more difficult for friends and family to understand. For most people who have never experienced a long enduring illness, it’s impossible to understand how sick people can feel even though they look completely healthy. And this often causes people who are sick to question themselves, adding even more suffering to their struggle.

Even though I don’t suffer from chronic physical illness, I can understand the frustration my mom has felt. I suffer from depression and anxiety, which are invisible diseases. You can’t see them. There’s no bleeding to indicate that I’m suffering. And because of the stigma attached to mental illness, I’ve become adept at putting forth great effort to hide my struggles. I’m so good at adapting that as recently as a month ago I told someone that I suffered from depression and anxiety and the person literally responded, “No way. No you don’t.” I wasn’t offended, just surprised that people truly can’t see how unhappy I often am just beneath the surface. It's not that I even want to them to be able to see it, it's just that it always surprises me that they can't. It feels to me as if a giant a stamp has marked my forehead with the message that I'm different from everyone else.

As I’ve gotten older, I’ve become more open about my mental battles because most people I talk to admit that they too are struggling with insecurities and unhappiness. And because I’ve been dealing with them for so long, I can often suggest books and authors that I've found helpful over the years. 

I’ve been dealing with how to cope with depression for so long I no longer feel stigmatized by it. It’s simply part of who I am. And the fact that I no longer feel as if I need to hide my depression has been incredibly freeing. As much as I can, I try to be honest with people, because being honest with them means I can be honest with myself. I don’t hit people over the head with the facts of my depression, but if the subject comes up, I don’t shy away from it.

Here’s how my mom responded to my questions on living with an invisible illness:

How does it make you feel when people say “You look great!”

To be honest, it's really frustrating. But I don't tell people that because I know their intentions are good. I've been chronically ill for almost 16 years, and I still dread the "You look great" greeting. And, I still don't have the perfect answer. Sometimes I joke, "Well, I spend so much time resting that I'm not aging." I say it as a joke to break the tension—some people find it funny, some don't. But oddly, it's true that I don't look much older than I did when I first got sick in 2001. 


Why do you think people assume you have to look sick to feel sick?

Well, in my view this culture does a poor job of educating us about the fact that many people have health problems—no matter what their. In the media, all you see is "Buy this, eat that, exercise this way—and you'll  be healthy." So first off, we're "taught" that people aren't supposed to get sick.

Secondly, there's very little discussion about how most people's health problems don't show on the outside—be it their physical or mental health. For example, people can be in terrible pain but they don't let it show. We should always assume that people don't necessarily feel inside the way they look outside. And we should always take people's word for how they feel no matter how they look. We should give them the benefit of the doubt and always believe them.

After I got sick, I realized that I had made the same mistake myself. There was a woman in our IT office at work who told me that she was in pain all the time. I remember thinking, "But she looks fine." So I try to be patient with people who don't understand because I didn't understand myself until it happened to me. But it would be nice if the culture didn't distort the truth so much.

What’s your advice for people feeling sick who don’t know how to respond when people tell them they look great?

Everyone has to find the words they feel most comfortable with, and your response is going to depend a lot on who says it to you. If you're feeling terrible and someone you trust tells you that you look great, consider being open about how you're really feeling. You might even talk a bit about your illness because they may be interested in hearing about what's going on with you. This can lead to you getting some much needed support. But if the "You look great" comment comes from someone who's just an acquaintance or the checker at the market, I've found that the best thing to do is to just say "Thanks" and change the subject.

Another piece of advice I'd give—and this applies to everyone whether chronically ill or not—is to not get down on yourself if you realize afterwards that you didn't give the perfect response. Don't look back and say, "Oh I should have said this" or "I should have said that...yada yada." Everyone looks back after a conversation is over and thinks of what the perfect response would have been. I suggest that as soon as you find yourself thinking about what you should have said, recognize that everyone does this, and then make the effort to let the interaction go.

What’s your advice for people who have friends or family who don’t believe they are sick?

I write a lot in my books and in my articles about how important it is to try and educate family and friends. But the fact is that some of them may not believe you're suffering—neither mentally nor physically. And that goes back to the fact that you look fine on the outside. 

If you have someone in your life who refuses to believe that you have health problems and they're mistreating you because of this, I recommend that you do everything you can to get that person out of your life. Sometimes you can, sometimes you can't. But, for example, if you have a friend who's always giving you a hard time because you can't do this or you can't do that, distance yourself from that person. It's better to have one or two friends who understand you than to have a lot of friends, some of whom don't treat you well. 

If you're not in a position to distance yourself from someone who refuses to believe that you're sick or in pain, I recommend practicing what Buddhists call equanimity. This is a balanced state of mind where we understand that life doesn't always go the way we want it to. Some people come through for us and some don't. 

The more we can make peace with this and accept it, the easier our life will be—and the happier we'll be. From the perspective of equanimity we'd say, "Well they don't believe I'm sick. Some people are going to be like that." Of course, you want to try and educate people but if that doesn't work, you don't want their lack of understanding to affect your peace of mind. 

I get so many emails from people who tell me that people say to them they're too young to be in pain all the time. Sadly, this can make them question the validity of their own condition. It's really important to not allow others who question the state of your health make you question the state of your health. You know how you feel. Be your own unconditional ally. Trust yourself.

How do you think the fact people can’t see your illness has affected how they responded to your condition, particularly early on in the illness? 


First of all, I can't be sure because no one ever said to my face "You're not really sick" or some of the other insensitive things that people have told me have had said to them. I'm fortunate no one has ever said anything mean to me. I have had people say to me "I'm tired all the time too," which simply means they don't get it because I'm not tired, I'm sick.

Early on, my friends and colleagues were confused about why I suddenly couldn't do the things I used to be able to do since I looked okay to them. Even to this day, 16 years later, I assume there are some people I know who probably think my illness is all in my head. Thank goodness my doctor knows it isn't, and my family and friends know it isn't. They see me enough that they can tell I'm truly sick. 

But if I run into people I don't see often, perhaps they think "Why does she say she's sick? She looks fine." It used to really bother me that people might not believe that I'm sick. For example, when I first got my disabled sticker, when I'd exit my car, I'd walk very slowly and actually try to look sick because I was afraid people would think "Why does she have a disabled sticker—she doesn't look sick." 

But I got over that because it was not healthy for me emotionally.

I would say 99 percent of the time, I feel: "This is how I am. It doesn't bother me what you think of me. Take me or leave me." I say 99 percent because every once in a while that old feeling pops up again. Something will happen where I wonder "What if they think I'm not really sick?" But it's very rare that I feel that way, thank goodness. And, as I mention earlier, it can be a self- destructive attitude because it can lead people to question their own judgment about the state of their health. 

So trust your judgment about how you feel, and take care of yourself according to how you feel. If you find yourself thinking, "What if they don't believe I'm sick?" just leave it alone and focus on taking care of yourself. Don't question your judgment. You know how you feel.

Any advice for people who are having trouble with their doctors?

If you have a doctor who doesn't believe that you are suffering the way you know you're suffering my first advice is to find another doctor. Do everything you can to find another doctor. 

If this is not a possibility, do some research on the internet and print out a short article or two to take with you to your next appointment. Some doctors are not open to information from the web, but printing out an article from an association specializing in the illness can show them that your problem is legitimate. Tell them you know they're busy but you hope they'll read it.

Lastly—and this is important—bring someone with you to your appointment if you possibly can. There's something about having a third party in the room that makes doctors take you more seriously. Perhaps because now there's a witness to the interaction. In addition, that person can confirm the symptoms you report and perhaps even speak up for you if you're feeling shy or intimidated. 

It's your right to have someone go along with you. For a long time I didn't realize that my husband could come into the exam room with me. But he can and when he's available, he always comes with me now. It's comforting for me, and I have found that it definitely makes a difference in how some doctors respond to me.

Top 10 Favorite Foods

It’s 2017!! 

To start off the year we thought we'd share some of our favorite foods because, well, we both love food! I say some favorites because we have so many that we could sit here all day and list what we like to eat. However, we're keeping it short and simple.

We hope you'll share your favorite foods in the comments below. Do you have a favorite winter food? Do you have a favorite holiday food? Give us some to add to our own list!

Toni’s favorite foods:

I’ll present mine as a Top-Ten List, David Letterman style, but with a bonus at the end.

#10: Grilled cheese sandwiches—I haven’t had one in years because I don’t eat wheat very often. Hmm. Maybe I’ll make one today.

#9: French onion soup—As #10 suggests, I love food with with cheese in it. I listed French onion soup because it reminds me of Paris.

#8: Teriyaki anything—If teriyaki sauce is on something, I’ll eat it.

#7: Tacos—From our local Taqueria that’s just down the block.

#6: Cherries—They speak for themselves.

#5: My husband’s caesar salad—He’s perfected it.

#4: “Have’a Corn Chips”—Made with tamari; put a bag within my reach and I will immediately eat every chip in it, including all the crumbled ones at the bottom. 

#3: My morning smoothie—I never get tired of it even though I always put in the same exact stuff: a bit of water, a banana, a big scoop of whey protein isolate, a heaping tablespoon of cocoa, a handful of spinach, three ice cubes.

#2: Sushi—I could eat it every day. Sadly, our favorite place in town just closed. We’re looking for a sushi take-out replacement, but Stacey’s Moshi Moshi will be hard to beat.

And my #1 favorite food: Dark, dark, dark chocolate.

My bonus favorite food: Anything my son’s mother-in-law, Jacqueline, cooks...and I do mean anything.

Mara’s favorite foods:

I’m also presenting my list Top-Ten style, but only because my mom did it first. I don’t share her love of Letterman. (He’s okay, but he doesn’t spring to mind when I’m making lists.) 

#10: Chicken Tikka Masala—I have to say that this only makes my list if it’s from a place called Khan’s near the Queenswater Bay tube stop in London. I never liked Indian food before we lived in London, and Khan’s Chicken Tikka Masala completely won me over. Best with fresh Naan. 

#9: PB&J—I love peanut butter and jelly. Sadly, I’m now allergic to peanuts so I can no longer eat it, but it’s probably for the best because I could eat three sandwiches in about ten minutes. Such comfort food.

#8: French onion soup—Like my mom, the soup does remind me of Paris, but I’ve always loved it. You’ll see from my list that I’m a soup fan, and there’s something about French onion, with the melty cheese on the soaked bread, and the onions in the broth—I could eat a whole pot of it. [This is Toni interjecting here: I could too!]

#7: Pizza—I’ve never had a pizza I didn’t like. (There’s some toppings I don’t like, but I just pick them off.) I even like frozen pizza.

#6: Spaghetti Bolognese—I’m always happy to eat spaghetti with a good meat sauce. 

#5: My dad’s caesar salad—My mom is right. He has perfected it. I do a decent job of copying his, but his is the best.

#4: Ramen—We discovered authentic ramen in Japan. I had always thought of ramen as the stuff in the grocery stores that's 10 for a dollar (which I like a lot!). But traditional Japanese ramen is a complex rich broth with delicious fresh noodles and savory meats. The marinated soft boiled eggs they add in are divine.

#3: Pho—This is a new favorite of mine. It’s a simple Vietnamese soup. Lighter than ramen, but so tasty. Add sriracha and hoisin, some fresh lime and basil. YUM. Fast and usually inexpensive! 

#2: Shrimp—I love shrimp. I like it pretty much any style. About ten years ago, for a few months I thought I was allergic to shrimp and I honestly grieved for weeks. That might have been an overreaction, but that’s how much I love shrimp. 

#1: SUSHI—I love it. I could eat it every day. Sushi in Japan was amazing. But really, sushi anywhere is amazing.

P.S. Reading over my food list, it makes me sound very worldly, but honestly I usually eat Soylent (liquid food,) a banana, and a plain turkey sandwich every day. None of these are “favorites” but they’re easy and fast! 

French onion soup made it onto both Toni and Mara's lists!