Wednesday, June 21, 2017

How Do You Cool Off in the Summer?

Mara here:

Yikes! It's hot! Here in California, we're having a bit of a heat wave. Contrary to what people believe about California, unless you live on the coast, it gets hot—triple digits hot!

Growing up in northern California, our house didn't have air conditioning. There were several weeks of the year when the temperatures were unbearable. Fortunately, we did have a swimming pool and I remember spending endless hours in the pool simply trying to keep cool when summer temperatures arrived. 

As I've gotten older, my tolerance for the heat has significantly decreased. If I'm too warm, I have trouble concentrating and I get very irritable (even more irritable than I normally am, haha!).

My husband and I fortunately have air conditioning in our home, but even with air conditioning, sometimes I feel too warm. Short of turning our entire house into a refrigerator, which neither the environment nor our bank account would appreciate, I've come up with a few things I do when summer arrives to help keep myself cool.

Frozen Bananas

Eating frozen bananas is a recent discovery. If you let bananas become very ripe and then cut them into slices and freeze them, they are a delicious treat! And they cool me down, sometimes I'm even shivering by the time I've finished a bag of them. This was a nice discovery for me because I can't eat dairy, so bananas are a perfect alternative. You can also blend them with fruit to make delicious frozen smoothies. 

Wet Hair

I normally shower in the evenings. I started doing that when I was young because my hair was very long and it was too cold in the mornings to go to school with wet hair. Not being a fan of how long it took to blow dry my hair, I started showering at night. During the summer though, I sometimes jump in the shower in the morning or even just run my head under the faucet because having my hair damp during the day helps keep me cool!

Resting on the Wood Floors

This is another things I started doing when I was a child. It would sometimes be so hot at night in my childhood home, I couldn't sleep. I discovered that if I slept directly on the wood floors, spread out like a cat, I'd cool off and fall asleep. I don't sleep the whole night on the floor anymore because my achy body would never forgive me, but there have been quite a few nights my husband has woken up in the middle of the night to find me reading on our floor as he tries to walk to the bathroom. Everyone I know thinks it's strange that I do this, but honestly it cools me off so quickly!

Toni here:

Mara lives in southern California and I'm in northern California—yes, northern California, but not the Bay Area where it rarely gets really hot. I'm in the northern part of what we call the Central Valley, which used to be mostly farmland and now has big cities like Fresno, Stockton, and Sacramento.

And wow has it been hot here. Hot, as in 108 degrees, although I read that Phoenix and other cities in the southwest of the U.S. have been as high as 120. (BTW, I'm using Fahrenheit as the measure. I still don't think in Celsius.) 

Here are two things I do to keep cool. 

My new invention: a wet towel around the back of my neck

This only works if I'm not lying down, unless I don't care if my pillow gets wet. I got the idea while I was watching the Australian and then the French Open tennis tournaments on TV this year. On hot days, during the two minute break after every two games, I'd see the players put an ice bag around the back of their necks. Unfortunately, I don't like to put ice on my body, even when I know it's what I'm supposed to do when, for example, my knee hurts. So a wet towel it is.

Pray to the air conditioning gods that it won't stop working

Here's a little story. Yes, while Mara and her brother were growing up in this house, we didn't have air conditioning. (I'm sorry, Mara.) For some reason, I thought putting it in would cost something like $20,000 dollars, so I told them we'd have to make do with our swamp cooler. It worked okay so long as: (a) it wasn't hotter than about 95 degrees (or maybe it was 90—you'd have to ask Mara); and (b) it wasn't humid, which isn't common in the Central Valley but does happen from time to time. 

After Mara and her brother moved out, one September weekend they came to Davis with their spouses for a wedding of a close friend. It was incredibly hot. Everyone took a cool shower or at least toweled off before getting dressed up for the wedding (which was being held outside, with my husband officiating). Within minutes of getting dressed, we were all sweating again. 

As I recall, Mara (who is always brutally honest—something I love about her) said something like: "If you want us to come back, you'll have to get air conditioning."

I didn't know if she was serious, but I didn't want to test her (!), so I got an estimate for putting in central heat and air. (We also only had wall heaters.) I was embarrassed to find that it was only about $2,000. We had it put in and, wow, was that fortuitous for me because this chronic illness of mine finds the heat to be unbearable. 

And that's why I'm praying to the air conditioning gods during this heat wave!


Do you have things you like to do to cool yourself down when it's hot? We hope you share them in the comments.

Sunday, June 18, 2017

Why Do Humans Have No Sense of Time?

Mara here.

Being a human is hard.

I never really thought about how complicated it was to be human until I had to try and explain to my daughter the various phases human experience. I had a similar experience while I was teaching her to drive: I never realized how dangerous driving is until I was trapped in a car with someone who had no idea how to do it, yet felt indestructible. I was positive we were both going to die at any moment. 

Growing up and becoming an adult is a complicated process. I don't remember it being hard because I think one of the big faults of humans as a species is that most of us don't have any sense of the many ways in which we're deluded. When I was 10, I thought I was ready to be an adult. When I was 18, I thought I was an adult. At 30, I felt very grown up and adulty. Now, at 42, I'm feeling positively matronly. 

Having conversations with my daughter, who is 16, makes me rather sheepishly remember how awkward I felt when I was 16. I thought I was already grown up and that my life was settled and wouldn't change. And so I thought that I'd always be awkward, unhappy me—both as a 16 year old and as I got older. 

Even now, although I'm a lot older and somewhat wiser, it's hard to remember that things change—constantly. When I'm having a particularly tough day, I feel as if things will always feel tough. It's so hard to believe that change will happen. As a species, we seem to have difficulty staying present in the moment even though the only thing we can experience is the now. We can't be in the future, but we constantly think about it anyway; and when we do, we see ourselves in the future as we are now. It gets very confusing. 

Humans also seem to have difficulty remembering that the future happens whether we want it to or not, and that we can't know what things will be like in the future, as much as we think, hope, and pray that we can make it turn out a certain way.

A few evenings ago, my daughter was feeling a little funky. She is experiencing typical teenager angst about friends and boys. And I heard words come out of her mouth that I remember coming out of my mouth—that worry that she will never get married. My 16 year old kid is convinced she will "die alone." With my eyes rolling—probably a rather patronizing sight to her—I'm pretty sure my response was similar to the way my parents responded: "You won't die alone. You're still very young," etc., etc. 

In hindsight, I know that I was overly emotional and dramatic when I was a teenager and I see that in her now. She, however, can't know that. She is worried that she will feel exactly like she feels now forever, even though she knows she already feels differently than she did just a few months ago. 

Time is difficult for our brains to comprehend. Or maybe it's simply that emotions feel timeless and permanent, so it's hard for us to realize that they are changing...and will continue to change. Our emotions and our reactions to things are always changing to incorporate our current interpretation of all our life experiences. 

I fall into this trap myself. When I am feeling depressed, it's easy for me to fall down the rabbit hole of worrying that I will always feel depressed. Or even to forget that there are times I don't feel depressed. It feels so all encompassing in the moment that it's hard to keep things in perspective.

But as I discussed life and growing up with my daughter the other night, I realized that it does help to remember that everything moves forward. We move forward emotionally. We forget old things and we experience new things. We physically move forward. We grow. We age. Time is always ticking by. Even if my daughter wakes up tomorrow and feel anxious, there will be new things that come along. She will meet new people. She will have new experiences. So things might feel similar, but they won't be the same. Life doesn't just freeze.

It helps for me remember that for myself. Even though I feel grown up, I am actually still growing. When I think about myself tomorrow, in my mind I am seeing myself as the same exact person I am today. But I won't be the same and things around me won't be the same. So I can't know what tomorrow will be like. It might be a lot like today, but it might not. And I can spend today worrying or I can try to just remind myself that no matter what I do, tomorrow will never be exactly the same as today. 

It's hard to remember that time never stops. We know from the dates on the calendar that time is going by, but we don't always feel it physically in our bodies. It almost feels like magic. We go to sleep and wake up and yesterday—a whole day—has passed by. 

So for my daughter, it's hard for her to understand that she won't feel the same forever. And it's only after decades of proof that things don't stay the same that I can confidently assure her that she won't always feel like an emotionally wobbly teenager. She will change. Her life will change. 

Time is elusive, even when we don't want it to be. Sometimes we wish we could slow time down and sometimes we wish we could speed things up or simply skip a day or two. But without fail it passes by...even when we don't realize it.

Here are some questions I asked my mom on this subject:

I know when you were a teenager, you went through some very difficult life experiences. Did you have the same concerns my daughter does—that you would feel the way you did as a teenager forever?

Absolutely. For various reasons, I was depressed when I was a teenager, and I worried about a lot of things, including what you mentioned—whether I'd ever find love.

I write about this depression briefly in my second book, How To Wake Up. It's in the chapter about how we treat however we currently feel as permanent. I refer to it as "clinging to an identity." We suffer when we do this because all identities are impermanent, just like everything else. Change is tough for all of us, but I like to say that it can be our friend. We can use the fact of impermanence to remind ourselves that how we feel now is not how we're going to feel always. I didn't see this as a teenager. I defined myself as "depressed person." I thought "This is how I will be the rest of my life."

But when I left home to go to college, the depression lifted. So that was a real lesson for me except I was too young to see it as a lesson. It's been something I've had to learn over and over again in life. I love the way the poet Rilke expresses it: "No feeling is final." If we could all remember that, life would be a lot easier for us. It's good to keep reminding ourselves of that: no feeling is final.

When dealing with your illness, even after all your years of Buddhist study, do you ever still find yourself stuck in the mindset of "being sick" as something that's external to the inevitable changes that come with time?

Oh yes. Actually this relates to the question above because that feeling of being stuck happens when I'm defining myself as "sick person" just like I defined myself as "depressed person" when I was a teenager. Yes, I am sick, but I'm much more than that. So I try not to define myself by my illness or by any one particular thing. That said, there are days I do feel stuck in the identity of "sick person." It can be triggered by many things such as having to miss something I want to attend. 

For me, the key to getting unstuck is mindfulness. That's a word that is over-used, but I'll tell you what I mean by it: becoming aware of what's going on in my mind—in this case, that I'm taking one aspect of my life, illness, and blowing it up until that's all I am: Toni Bernhard, sick person. That's a stuck feeling and it's very painful mentally.

Sometimes just becoming aware that I'm defining myself in this narrow way is enough to get unstuck. Sometimes it's not. When it's not, people who've read my books know that my fallback is always to go straight to self-compassion. Sometimes I even speak silently to myself. In this case, I might say, "It's hard to feel sick all the time; of course sometimes you're going to feel stuck." I try to be very sympathetic with myself regarding whatever is happening to me. It alleviates a lot of mental pain and that helps me get unstuck.

I do better when I keep myself undefined and stay away from identities. Even positive identities can make us feel stuck. For example, when my first book came out, I took on the identity of "published author," something that lot's of people want to be. As "published author," I spent a lot of time on the internet looking at stuff like book sales statistics. It's amazing what you can track on the web, for example, how many books of yours sold in Philadelphia two days ago. Spending what little energy I have in this way was not a good use of my time. Even worse for my mental state, I'd feel bad if there was a week of poor sales.  

I finally realized that I was creating a lot of suffering this way; when I let go of that "published author" identity, it was a huge relief. I said to myself: "The book is out and will make its own way in the world." It was a little moment of liberation.

So I try to stay undefined and that helps me not get stuck.

I keep a journal to help me track the fact that I do actually feel different day-to-day. It's easy for me to look back on a week and simply tell myself that I felt "bad" that whole week. But if I take time to write down more specifically what's going on in my mind, then I can look back and remember that there is always variation to what's happening in my life. Have you ever done that with the physical symptoms of your illness? 

I did that in the first couple of years after I became chronically ill, but I don't do it anymore. That said, I do keep track of my symptoms if I want to assess the effect of a medication on them. So, for example, I'm doing it now because, although I was successfully treated for breast cancer, I'm supposed to take a particular type of medication that lowers the risk of the cancer recurring other places in my body (something I didn't even know could happen). But the medication exacerbates the symptoms of my chronic illness. Currently, I'm on the fourth different type of this medication, and if this one doesn't work for me, I'm out of options.

So, I do keep track of how medications are effecting me. The reason I don't track my symptoms otherwise is that I pretty much feel the same way day-in and day-out. It's pretty monotonous. This isn't the case for most people with chronic illness and, for them, daily tracking of their symptoms can be extremely helpful. They can match a change in their symptoms with something they did or didn't do. They can keep track of things like the effects of a particular diet or of napping during the day. So I highly recommend it. It just isn't something that hasn't been helpful to me because my illness is so monotonous (as I call it). I pretty much feel the same way every day.

By the way, Mara, I really enjoyed your essay on how we humans have trouble understanding the workings of time.

Wednesday, June 14, 2017

Do You Ever Wish for a Superpower?

Mara here: I recently saw the movie Wonder Woman. I'm a fan of superhero action movies and thought this one was done well. It was fun and action packed. As a little girl I remember wrapping tin foil around my wrists and running around the park next to our house, pretending to deflect bullets.

And it made me come back to a question I often ask myself, which is this: If I could have a superhuman power, which one would I want? Strength, invisibility, time travel?

Usually, when I ask this, I immediately think of how amazing it would be to be a healer—to have the ability to take away people's pain, whether it be mental or physical. But I worry that I wouldn't be strong enough to handle that responsibility. I think the fact that it would be impossible to help everyone would destroy me pretty quickly. 

So my second choice is to be able to fly. I have a recurring dream in which I'm flying. Not like superman or a bird, but more like a kite, where I have to run fast and then take a huge leap. I get picked up by the wind and suddenly I'm soaring and floating. I can't seem to keep myself up in the air indefinitely. But if I can get enough momentum and there's wind, I can soar through the air like leaves being carried by a current.

My dreams always feel real, and I always feel as if my flying is a secret that nobody else is supposed to know I can do. 

Those moments I'm soaring through the air feel so exhilarating. I feel completely free in a way that I haven't been able to recreate in my conscious life.


Toni here. It was so fascinating for me to read Mara's piece because what happens in her dreams now is what happened in mine when I was a little girl. I had so much fun in those dreams, flying all over the place, watching people who didn't know I was watching (I was invisible). I'm so glad that Mara has a recurring dream that she can fly!

What superpower would I want? I thought this would be a tough one for me because my first thought was that I'm not interested in having a superpower. But then I read the list of Mara's possibilities and realized that it's time travel for me! Travel to the past not the future though. I'd like to "taste" a dozen different eras, such as ancient Greek and the Renaissance and the Elizabethan era. But there are some dark times in history that I wouldn't want to go back to, so I guess there's a condition I need to impose on this superpower: I get to choose what "time" I travel to or the deal's off!

What about you? Have you ever wished for a super human power? 

The Elizabethan Era

Sunday, June 11, 2017

Pets: Companionship and Comfort When Life Gets Tough

Most people I know have a pet. And it’s not hard to understand why, throughout history, humans have had animal companions. What’s not to like about a pet? I can understand why a person might decide not have one. Pets can be expensive. And if you work or travel a lot, maybe you don’t feel you can take care of a pet. But it’s hard for me to imagine simply not wanting to have a fur baby.

Growing up, we always had a dog in the house. My mom is a big fan of dogs and she's allergic to cats, so we always had a dog—usually a Standard Poodle. I have so many memories growing up with our faithful dog, Dopple, keeping me company on my bed. I remember feeling comforted if I was home alone, knowing he'd bark to protect me if I needed him. Being an animal lover, I often had other pets too—fish or hamsters, sometimes a bird. So there was always at least one animal in the house.

As an adult, when my husband and I lived in apartments, we had cats. And while cats are very different from dogs, they still provide comfort and affection. And cats are much easier to take care of than dogs. There is something unique about a relationship to animals you know are depending on you to take care of them. I can’t imagine my family without our furry companions.

After our daughter was born and we moved into a house, we got a dog. I always wanted a dog and we also thought a dog would be a good friend for our daughter, who is an only child. Our cats were a little afraid of her since she liked to chase them, so they didn’t provide any comfort for her. And I, having grown up in a dog household, definitely didn’t want her growing up feeling nervous about dogs. 

So we decided to rescue a dog. We looked at rescue sites, and from the first moment our daughter set eyes on a picture of Pidu (the dog we eventually adopted), she was in love. Pidu became her best friend and loved her with unwavering loyalty. When her father and I would argue with her, Pidu was always on her side and would keep her company as she stormed into her room. When she was sad, he was (and still is) always there to give her a cuddle and sit quietly by her, ready to provide unconditional love.

Pidu is a love ball. He’s gentle in every way and always happy to see us. He’s a constant source of love and companionship for everyone in the house. He's the first face we see when we arrive home and he's the last face we see when we leave. That’s really the amazing thing about pets—how much love they give us.

Our cats, Jasmine and Demetrius, are equally as loving as Pidu but in the sort of standoff-ish way cats are. Whereas Pidu gives open and unquestioning love, the cats are quirky and seem to question everything. But, contrary to their reputation, cats are extremely affectionate. And like dogs, they can be goofy and entertaining. 

It's amazing how much personality animals have. If you aren't familiar with animals, it's easy to think about them as two-dimensional, more like stuffed animals. But for anyone who has had a pet, you know that they each have well-rounded personalities. Some dogs are clever, some are dumb. Some are goofy, with a sense of humor, and some are more thoughtful and quiet.

Pidu is as sweet as sweet can be, but he has his quirks. He doesn't like the wind. He won't go outside if it's raining, and if you fart in his presence he runs away. He's absolutely terrified of farting noises!

Cats also have distinct personalities. One of our cats is very particular. She's prissy and won't let you mess with her. She's a princess and wants to be treated as such, and is quick to bite or swipe at you if you annoy her. Our other cat is a goof ball. He's clumsy and brutish. He leaves dead animal prizes for us by our back door, and insists on cuddles when he's tired.

Aside from the fact pets are fun and lovable, one of the most important things they contribute to a family is that they take us, the humans, outside of ourselves. Our fur babies have the magical ability to take our minds off our daily worries in a way that being with other humans can’t. There’s something about their little furry faces that make everything else that bothers us disappear, even if it’s just for a few moments. 

Animals are also at peace with themselves in a way that most humans aren't. They truly live in the moment, appreciating what's in front of them. They don't dwell on the past or worry about the future. They are very present. And I think that is part of the reason that spending time cuddling a pet can be very calming and restorative. They help to bring us into the present moment.

More recently, as my struggles with depression and anxiety have increased, my attachment to my pets has increased. My dependence on them has become much more significant as I have lost my ability and desire to deal with many things outside the house. And having my pets around means that being at home is never lonely. They keep me company and remind me that I’m not alone. They also make me feel needed, and that's a powerful thing to be reminded of when life feels difficult.

Two of Mara's pets Jasmine and Pidu

I know that my mom has had a similar experience with dogs since she becoming chronically ill, particularly her current one, Scout. As her universe got smaller because she was no longer able to work or leave the house, having the companionship of a dog has become a vital part of her life.

How would you describe your relationship to dogs throughout your life?

There's a story that goes with my answer to this question. When I was ten years old, my dad was dying of leukemia. A therapist friend of my mother's told her to get me a dog to help me cope with the loss I was about to experience. So she got me a Beagle puppy and I named her Connie. We'd had other dogs before and I liked them, but they were never particularly special to me.

It was different with Connie, though. She became my comfort. She meant so much to me that it changed my relationship to dogs. In fact, when your dad and I were talking about getting married, I said: “Sounds like a great idea, but we always have to have a dog.” And, except for a few months here and there, we've always had one. So my relationship with dogs throughout my life is easy to describe: I love them and I always want one in the house. And it traces back to Connie.

How do you think getting sick changed the way you related to your pets?

We’ve had three dogs during the time I’ve been chronically ill. Winnie, a Standard Poodle, was toward the end of her life when I got sick, and being sick actually allowed us to prolong her life for many months because she needed someone at home all the time to care for her. So because I was sick and at home, I could do that. She was a sweetheart. 

Then we got Rusty, partly because Beagles are hounds and I wanted another hound dog. Unlike Beagles though, Rusty was a big dog—a Redbone. 

He was the first dog that your dad got really close to. He didn’t grow up with dogs the way I did. I think he bonded with Rusty partly because I was sick and so not always good company. But also, Rusty was smart and stubborn and pushy—so he needed training and your dad undertook that. As a result, they really bonded. I enjoyed Rusty, but I wouldn’t say we had a close bond. Physically, he was the most beautiful dog I've ever had and he howled like a blues singer. He was truly unique. But I tend to think of him as your dad’s dog.

Now we have Scout, who is supposedly a Lab, but doesn’t really look like one and is about half the size of the Labs I've known. As you know, I’m extremely close to her. In fact, I adore her. But I don’t attribute those feelings to my being sick. That's because I was sick through Rusty’s entire life span, but was never as close to him as I am to Scout. 

I could be wrong, but it feels like my special relationship to Scout is more about Scout’s personality than about my being chronically ill. For one thing, she's so good-natured and goofy that she cheers me up all the time. Mainly though, she’s the most affectionate dog I’ve ever had and she’s devoted to me. Look at the picture at the bottom of this post and you’ll see what I mean. 

For example, she loves it when people come over, but if I have to leave the front of the house to lie down, she follows me into the bedroom and keeps me company on the bed. So she’s a great companion for me. Right now, your dad is gone for two weeks so it’s me and Scout. Me and Scout.

Can you imagine being sick and housebound without a dog as part of your family?

No, I can’t imagine it. When it comes to having a dog, I am that ten-year old kid whose Beagle helped me cope with the loss of a parent I was really close to. I write a lot about “want/don’t-want mind” and how it can be such a source of dissatisfaction and unhappiness for us. But I have to admit that, when it comes to Scout, I have a "want mind." I want her around always. It’s only when I consciously reflect on the realities of life that I can let go of that wanting and just say to myself, “Enjoy her while we’re together.” 

I guess I was trying to get an answer as to whether or not you think it’s valuable for people who are chronically ill to have the companionship of a pet?

Actually, I wrote a piece for Psychology Today about whether pets and chronic illness are a good match. Here's the link to the article:

People who have pets tell me that their pets are a tremendous comfort to them and are also great companions. So, I'd definitely consider getting one if you're chronically ill. That said, a lot of people live in circumstances where they either can’t have a pet (maybe they're in an apartment building that doesn't allow them), or they can't afford one. One of the tragic things about being chronically ill is that, if you don’t have good health insurance, most of your money is used up taking care of your health. Dogs particularly need care, such as exercise. I hire someone to take Scout for walks and he's also helped to train her. I know how fortunate I am that I can afford to do that. 

But to answer your question, yes, I think pets can be wonderful for people who are chronically ill. It need not be a dog or even a cat. It could be a bird or a hamster!

Scout and Toni

Wednesday, June 7, 2017

Things We're Not Good At, But Wish We Were

Mara here. I am skilled at a wide range of things, and I've dabbled in a lot of activities. On the blog, we've shared jobs we've previously had, and both my mom's and my lists had a lot of different types of work included.

But there are a few things I've tried that I'm simply not good at. I wish I were good at them. And I suppose if I really focused all my energy on studying these things, I could probably get proficient at them. But although I'm stubborn—I'm not that stubborn. I'm okay with being mediocre, even bad, at some things. That's kind of the cool thing about humans. We're good at different things. And we all want to do different things.

So here are few things I'm just simply not good at: 

Cooking. I am just not good at cooking. I can do it...sort of. But I get bored. And it's messy. And I don't like following all the rules. I am amazed at the idea that some people want to own a restaurant. I can't get my brain to understand how anyone thinks that would be an enjoyable way to spend my time. I do like printing out recipes. I like the idea of cooking yummy things. But after about 10 minutes of stirring things and making pots dirty, the idea of running to our local taco stand always seems like a much better idea.

Math. I don't have a math brain. I can read a book and write a report on it in one night. But math just doesn't make sense to me. Well, basic math makes sense to me. But once I get past Geometry (which I was very good at), everything else is tedious to me. Too many abstract letters and theories. My brother was extremely good at math, so it was a little disheartening for me to discover that math was not going to come easily to me. As math got more complicated, even  if I understood what I was supposed to be doing, my answers were always wrong. Fortunately my daughter is great at math. So I feel good that I didn't somehow genetically pass on my mathematical ineptitude.

Drawing. My skills at drawing are limited to very bad stick figures. I'm good at doodling. I love doodling. Just squiggling scribbles and drawing hearts and stars on stuff. But I really can't make things look like real things. And I know that art doesn't have to be realistic, but I always wanted to be able to draw things like horses and ballerinas. Unfortunately, I'm terrible at proportion. And I don't have a lot of control over my hands so lines are squiggly and circles are really just blobs. My mom is a great artist, so it's always been disappointing to me that I wasn't able to do it. It's definitely something I wish I were better at!


Toni here. What follows are three things I wish I were good at but am not.

Playing a musical instrument. It's not that I haven't tried. I took classical guitar and piano lessons when I was a kid and piano lessons again as an adult. I love music but have absolutely no feel for playing it. When I try, all I keep thinking is "Please let the next note I hit be the right one!" Memorizing a piece doesn't help. I still just think about hitting the right note. I can't relax and get into the groove. You do not want to hear me play an instrument. I guarantee!

Throwing a ball. My nine-year old granddaughter throws a ball better than I do. Need I say more? (Mara Note: I am also terrible at this...)

Playing tennis. I wouldn't be able to play now, but when I was stuck in bed in Paris for three weeks 16 years ago (which marked the beginning of my ongoing chronic illness), the French Open was the only thing on TV I could understand. As a result, in Paris and then back home in California, I became a (spectator) student of the game. I wish I'd had the experience of executing all the shots I've come to love, from lobs to overheads to drop shots. Unfortunately, the few times in my life I did try to play, I spent 90% of the time picking up the balls I either hit into the net or out of bounds. 

Sunday, June 4, 2017

Our Thoughts About Getting Older

Being human is strange. We have our bodies and we have our minds. For most of my life, I’ve thought of them as the same thing: me. I am me and "me" includes my thoughts and my body. 

As we get older, some of us try to separate mind and body; we try to distinguish what we look like from who we think we really are. We start thinking that perhaps our thoughts make us who we are. But recently I discovered that apparently I can't separate my mind from my body. This was proven by the realization that I need reading glasses.

On the face of it, this seems fairly mundane. I’m in my 40's, so it seems reasonable that I might need glasses—many people do at this age. But I was surprised how jarring it felt to me. I don’t mind wearing the glasses, although it is annoying that I’m always leaving them in the wrong place, and it’s hard to lie on my side and read because the glasses jab my face.

What's was jarring was the realization was that my weaker vision is permanent. For about six months, I could tell that something was changing with my eyes, but I didn’t know what it was. When I'd wake up in the morning, everything was fuzzy. When I looked at my phone, I had to let a few minutes pass until I could focus on it. And, after a lifetime of above average vision, it simply didn’t occur to me that my eyes were weakening. At first I assumed I was just extra tired. Then I started to wonder if there was something wrong with me. The worrier in me takes over and thoughts of illness start to flood through my brain. 

One night as I was reading in bed, my husband jokingly looked over at me and said, “I think you need a longer arm.”

Until he said that, I didn't realize I was holding my Kindle as far away from my eyes as possible—my arm locked at the elbow sticking out perpendicularly. Because of my incredibly short arms, this is not that far away. It suddenly clicked in my mind that my blurry vision and headaches probably simply meant that I needed reading glasses.

So now I have reading glasses. Actually, I have six pairs of glasses strategically placed all over the house because otherwise I would never know where any of them are. And reading is no longer a struggle. 

But my blurry, non-glasses, vision is still confusing for me. This is because it seems so arbitrary. After the birth of my daughter, I was exhausted for many years. And so the fact that I might naturally feel less energetic now because of getting older, has never seemed strange, because I was already tired for so many years from raising a kid.

But with my vision, it seems as if nothing changed externally in my life. I could see just fine one day. And then the next day, I couldn't see clearly. I can’t actually see the deterioration of the tissue in my eyes, so it feels random. I'm definitely not used to it. In the past, not being able to make my eyes focus meant that something was wrong. I was feverish or had banged my head. It’s harder than I expected to make myself understand that blurry vision is now the new normal. 

It still surprises me when I look down at my phone or at a form and can’t make the words come into focus. I often still have that split second of panic when I wake up and the world is blurry. It’s hard to change my self-identification as someone with good vision to someone who needs glasses. It’s not a vanity thing. I don’t care how wearing the glasses makes me look. 

This reaction to the glasses is interesting because I’m not a person who broods about getting older. Birthdays don’t bother me, for example. But the glasses are an unavoidable reminder that my body is aging. And while we sort of prepare ourselves for eventually being “old,” it’s the many little physical changes, spread over decades, that separate our youthful selves from our older selves—changes such as aching fingers, age spots on my face, new food allergies, difficulty sleeping and, now, needing reading glasses.

My daughter has been studying biology and psychology, and now regularly likes to inform me that we grow and develop until around our mid-twenties. After that we start dying. Literally. Cells start dying off. When she noticed that I'd started wearing glasses, she looked pensive for a moment then shrugged her shoulders and said, “Well, you are dying.” 

And while she’s (mostly) joking, it is true. Our bodies get worn and things get creaky. So adjusting to needing glasses has been an interesting reminder to simply allow myself to get older—to adjust my thoughts from, “There’s something wrong with my eyes,” to “These are my eyes now; they need glasses.” Sometimes my back needs a heating pad. There might come a day when my legs need a wheelchair. 

It’s often hard for me to see my life as a whole story. I get caught up in what’s happening now, or my mind is not in sync with my body. When I see my husband and my daughter, I think of them as a whole arc of experiences. I remember getting married and I remember celebrating our twenty-year anniversary. I remember my daughter's birth and I remember her getting a driver’s license. 

And so, I need to remember that my story has an arc too. And changes to my body and my mind are part of that arc. 

Because of her illness, my mother’s physical transition was not gradual. Always a very youthful person (people have always thought she was younger than she was), she went from being a vibrant woman to seemingly aged overnight because of the sudden limitations in her ability to do things. While my physical aging is gradual, my mom’s changes were rapid. Within a few months, she had to adjust from being an active working person to one whose physical limitations were significant. Plus, she still has to contend with the normal pesky changes that come with getting older. 

So I wondered what her thoughts are on how her illness has affected her attitude toward getting older.

Before you were sick, did the idea of getting older bother you?

It didn't really and I think that's because, as I was getting older, I was also feeling more at peace with life. When I was younger, I was always searching for some key to permanent happiness. I'm not searching for that anymore, and the reward has been that I actually am happier...I just know it's always going to come and go. I've made peace with the fact that life is a mixture of pleasant and unpleasant experiences. I don't expect to always like how things are going—personally or globally. 

Also, as I age, I'm more accepting of the way I am and the way other people are. That's made a big difference because, when I stopped trying to change myself and others, a huge burden dropped away. 

Do you think being sick has changed your feelings?

It has, but perhaps not in the way you might think. Getting older doesn't bother me. I actually feel "older but wiser" and I don't mind the "wise" part at all! What bothers me is an ongoing concern that, due to my illness, being old will turn into some kind of nightmare where I won't be able to take care of myself properly or I won't be able to take care of your dad if he needs it. He's been my caregiver for 16 years now. What if he needs a caregiver?

So, that's my main concern about aging. Of course, I don't like the aches and pains that accompany getting older. But I'm content to put up with them so long as there are things I still enjoy in life.

Do you think you notice physically aging more or less because of the limitations of your illness?

Oddly enough, outwardly, I've aged much less than my healthy friends who are around my age. I'm always shocked when I see someone I haven't seen for several years because they almost always look so old. Yet, they tell me I look just the same and, except for some loose skin on my upper arms, I do look pretty much the same as I did 16 years ago when I got sick.

When people tell me how good I look or how I don't look a day older than when they saw me last, I joke with them that I'm not aging because I'm not using my body up since I'm resting all the time. Nutty as this theory sounds, I enjoy believing it (erroneously probably), although it does concern me that I can't engage in any type of strenuous exercise, which everyone says is a key to aging well.

To answer your question, what I've noticed is that I seem to be aging less than my friends. Even so, I'd trade this phenomenon for being as healthy and fit as they are.

Wednesday, May 31, 2017

Our Gratitude List for May. What are you Grateful for?

Yikes, it's the end of May! Thinking about June always makes me hear the song "June is Bustin' Out All Over" from the musical Carousel in my head. But before we get to June, we wanted to take a minute to appreciate May!


Six Month Anniversary of this Blog—It's hard to believe that it's already been six months! I am very grateful for everyone who reads and asks questions! It started as a project for my mom and me to work on together, but it's been amazing that people have followed along on our journey!

Mulberries—Okay, to be completely honest this is a bit of a mixed bag. When we moved into our house 13 years ago, they told us they planted a walnut tree in the front yard. A few years ago, the tree started sprouting, but it definitely wasn't walnuts. They were these weird little black berries. But there weren't very many of them, and neither my husband nor I knew what they were so we just ignored them. 

Well, this year the tree sprouted like crazy. We think it's all the rain from last winter, but there is a berry apocalypse happening in our front yard. There's berry carnage all over our driveway and the sidewalk. I still didn't know what they were until someone posted a picture of a Mulberry leaf on Facebook requesting the leaves for their silkworms. What? Mulberries? 

Then I noticed that we have a neighbor who, apparently completely unconcerned with the fact it's on our front lawn, brings her kids over and they sit and pick the berries off the tree and eat them. It's a little weird but I don't mind, so I pretend I don't see them when I pull into the driveway. (Even though it's a very small house, so it's not as if there's any possible way I don't notice them sitting in my front yard.)

Anyway, one day I decided I wanted to try one of the mulberries, and they're delicious! They're like very sweet blackberries, but without the seeds. If they didn't leave a ridiculous mess (honestly, it looks like a crime scene in our front yard) I would be thrilled!

Veterans—This blog won't post until after Memorial Day, but I am writing this on Monday and we are celebrating Memorial Day. I am so thankful for people who are willing to join the armed forces to support and defend this country.   


First, I want to echo the first and third items on Mara's gratitude list. I'm thankful for all of you and for our veterans.

Now, three things I'm grateful for this month.

A Family Visit—For several reasons, even though they only live a little more than an hour away, Mara's brother and his family have been unable to visit for several months. This past weekend, they came and even stayed overnight. We had a wonderful time. I'm especially grateful to my granddaughter Cam for playing with Scout so much. Watching the two of them was such a delight for me. And it was great to chat with my son, Jamal, and my wonderful daughter-in-law, Bridgett.

My New Bonsai—I lost three of my bonsai trees when I tried the tricky business of "root pruning" them. Now I have three new ones and they are thriving. I keep them in the bedroom with me and, if plants can be happy, it feels as if they're very happy to be living here!

My Dermatologist—How many people see a specialist who takes an interest in health problems they have that aren't related to the specialist's area of expertise? I suspect, not many. But mine is and exception. Whenever I see her, she's always done some research on my ongoing illness of 16 years and has ideas for me to take to my primary care doctor. I'm grateful to have her as one of my doctors.

We hope you'll share with everyone what you've been grateful for this month.