Another Oncology Appointment…and What’s Up With That Smell?

My oncologist appointment last week marked five years since completing my final chemo infusion (and for those of you keeping track, since I had that nasty chemo nail infection).

Lately, my oncological appointments run like this: my onc asks how things are going, I air all my grievances and we spend the rest of the visit agreeing that there’s no way to determine whether what I’m experiencing is chemo-related, menopause-related, or something that I was dealing with before but hadn’t paid attention to back before cancer.

Because there’s nothing like cancer to make you acutely aware of every twinge and creak in your body.

But that’s about it. We are running out of things to talk about. In this context that’s a good thing.

I used to lament “what could have been” had I not gotten cancer, not experienced chemo, not been pushed into menopause chemically and artificially had my estrogen levels squashed. But now, I know better. What happened, happened. And “what could have been” is pointless to ponder because it simply isn’t reality.

It took me a while to get to that place and I’m finally okay with it .

But there was something else different about this oncology visit…

I walked into the cancer center for my appointment and was hit with “the smell”. There is a distinct scent in the building, possibly the cleaning solutions used to disinfect the place or maybe a fragrance that is purposefully pumped in. I had mentioned it to my clinical counselor several years ago and she admitted that a number of people have said the same thing. The smell is familiar, given that after multiple appointments and infusions and radiation sessions, I’ve experienced it a lot and have made many associations with it.

But for some reason, this time it hit me hard and a wave of sensations washed over me. Not sure why my reaction was so strong, but I’d like to think that between my last onc appointment and this one, I’ve made the most progress in distancing myself from the frustrations of getting cancer and have actually moved on with my life.

However, that rush of emotions served as a reminder of everything that I’ve been through over these past five years. I thought that chemo was going to be the hard part. Turns out, it was the most predictable part: six trying infusions, but they came with an end date. The rest of treatment brought uncertainty and unexpected difficulties. I thought I was done after radiation…but the pills continued.

Looking back at this, while I’m technically not “out of the woods” and may never be, these last six months have felt different. Yes, I still have another onc appointment half a year from now, but I’m finally turning my face forward to the future instead of constantly looking back at the past, worried that those frights will catch me again.

Cancer, “Why Me?” and Mustard Seeds: The Path to Acceptance

At some point in a cancer patient’s life, there are certain questions that tend to come up. The most likely one of these is why we were singled out to have such a serious calamity befall us.

I went through a long period of this. I mean, loooong. The early posts of this blog are filled with agonized questions about why cancer hit me even when, by all accounts, it shouldn’t have. I posted about not having risk factors and blah blah blah. I kept going around and around and around on this, stuck on a hamster wheel that wouldn’t stop.

I clung to the same ride, unhappy but not wanting to get off.

Allow me to stress: cancer is a serious illness. That is not to be taken lightly. Most of us, regardless of lifestyle, experience profound shock with our cancer diagnosis. It may seem that life is cruel and unfair (well, it is) and that we didn’t deserve to get cancer (well, we didn’t).

I struggled with anger and frustration for years. It’s both embarrassing and freeing to admit that.

Acceptance is a process. I thought I’d accepted my situation a couple of years ago, but in retrospect, I hadn’t. Some days I felt holy and zen-like, floating on my own little cloud, but it was a sham. I’d have glimpses of acceptance and then a wave of anger and resentment would wash over me and I’d be pissed off for another week.

I thought God hated me. A purportedly loving and merciful being allowed this to happen. It was hard to not think of cancer as a blow against my value as a person because of how I interpreted my situation.

It wasn’t until I stepped outside the confines of that type of thinking that I gained a different perspective. I posted about re-writing my life (basically, viewing the same experiences through a different, more positive lens) which provided a glimpse of another way to assess what had happened. And when I heard the retelling of an ancient Buddhist tale I finally understood what it meant.

Never seen mustard seeds? Here they are. Kisa, however, came up empty-handed.

What was that tale? It was “Kisa Gotami and the Mustard Seed”. In brief, Kisa Gotami’s young son dies and she is so distraught–not understanding why she would deserve such a painful experience–that she goes to the Buddha in hopes that he can bring the son back from the dead.

The Buddha agrees to revive her son if she can bring him mustard seeds from households where no one has died. Of course, she cannot because death touches all living creatures. She is comforted by the realization that her sorrow is shared and understood by everyone in the community and she finds acceptance of her loss .

Another way of looking at this is that we all suffer. For me, it’s a reminder that while a cancer diagnosis is life-threatening, there are few (if any) humans on this Earth who have not experienced some form of loss or grief at some point in their lives. Yes, some of us bear a far greater burden than others–grave inequities exist. But they also bring profound opportunities for growth.

And while I (and I expect most cancer patients/survivors) would have preferred to experience this personal growth through means other than cancer, being able to be here in this moment, having turned the corner, is one of the most beautiful gifts I could ever receive.

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Two points need to be made here:

Point #1: Burdens are distributed unequally. Socioeconomic, racial and other disparities further tip the scales, making outcomes from a disease like cancer even worse. As a society, we haven’t come close to rebalancing this. Acceptance is easier for some than for others; no one has a right to preach to anyone else.

Point #2: It’s been over five years since my initial cancer diagnosis, and even longer that I’ve been worrying about it. As I mentioned above, it took a LONG time to get to this point of acceptance. Knowing this, I would never rush a new cancer patient to get here. Acceptance must come organically, and yes, sometimes never does. Cancer breaks hearts and no one experiences it in the same way. Be patient.

Four Minutes of Hovering

Last week I had a 3-D mammogram. This scan marks a bit over five years since the diagnostic test that indicated I had a solid tumor on the outside of my left breast.

Heading into this appointment, I wasn’t particularly worried. Yes, I admit to having little heartbeat skips over “lumps” in my breast that aren’t really lumps: if you recall, I had felt something before my last oncologist visit; my doctor reassured me it was nothing.

I will never again hear the word “lump” and NOT think of cancer.

And because last August I’d had a chest MRI, a more sensitive scan than even a 3-D mammogram, it was HIGHLY unlikely that there was anything to be found in this mammogram.

But still, after the pictures were taken and the mammography technician left the room to consult with the radiologist, I got that all-too-familiar uneasy feeling.

WHY? I knew that the radiologist wouldn’t find anything. The technician practically said that out loud, since she was aware of my recent MRI.

But still.

I sat alone in the mammography room, breathing, looking at the clock on the wall and simply hovering. My attention was like a butterfly looking for a place to alight. I wasn’t holding my breath…but mentally, I had put the rest of my life on hold when the tech stepped out the door.

It took all of four minutes and the mammographer returned and gave me two thumbs up.

For four minutes, I had no plans for anything outside of the room I was in.

I breathed a sigh even though I had expected the good news. And while I wasn’t “freaking out” waiting for the response, it became apparent to me that I might always feel uneasy during that period of uncertainty.

I didn’t want that. I wanted to be completely unaffected, as if I had never had a bad experience and my heart was calm.

But hovering it was, because there are no guarantees. And as the gears of my life started turning once again, I remembered that there was no going back. All the negatives that have happened have happened and I can’t change that.

Eventually, years from now, my emotions may soften, but in the meantime, I’m just going to have to be okay with hovering for a few minutes.

When a Little Is Great but More Might Be Better: Exploring Longer Meditation Sessions

I am a believer in the idea that, for developing proficiency in an undertaking, consistency is more importat than what you do on any given day. It is true for workouts and it certainly holds true with meditation too. Exercises, whether physical or mental, need time to show beneficial effects and that requires patience and persistence on the part of the practitioner.

However, there comes a point where maybe what you’re doing, consistently, might need to increase in order to enable you to progress.

Consistency is key when it comes to exercise, both physical and mental.

When I started out with meditation, I had very little guidance outside that from the Calm app on my phone. The curated daily meditations there lasted about 10 minutes, so that’s how long I meditated. I did so ever single day, true to my perfectionist nature. I earned a gold star for consistency.

At that time, my life was in turmoil–I was only a few weeks out from a cancer diagnosis. Meditation helped me breathe through the early sleepless hours of the morning, when I would wake, feeling frightened, alone and angry.

But it wasn’t until almost a year later, when I started the Mindfulness-Based Stress Management (MBSR) course originally developed at the UMass Medical Center, that I learned how much meditation could do for me. Our “homework” was 45-60 minutes of meditation a day, no joke when you’re used to 10-minute stints.

But during that time, something unexpected happened. As I meditated, somewhere around the 20-30 minute mark, I felt myself settling in and releasing. This, for a bundle of nerves like me, was a novel experience. I don’t think I could have gotten that with 10 minutes a day. But a glorious hour? It was transformative.

Any meditation will do you good, but take advantage of those times that you can engage in a longer session.

Giving myself permission to simply BE for the entire length of time was not easy. There was guilt involved in being “unproductive” for so long, not to mention the difficulty of dealing with intrusive thoughts. But once my monkey mind accepted the fact that all I was going to do for the entire hour was feel into my breath or pay attention to bodily sensations, it started settling down, gifting me with a stillness that I hadn’t experienced during the shorter meditations.

It was the most soothing act of self-care that I had ever allowed myself to do.

So right now I want to clear the air of the “never good enough” idea, by which I mean the concept of, “Oh, you’re only meditating for 10 minutes? You should be doing it longer.” That is a total motivation killer and goes completely against the acceptance that mindfulness teaches. And that’s not what I’m suggesting at all.

There are great benefits to short meditation stints, one of which being that when you “drop and give 2 minutes” of deep breathing, or however else you choose to express your mindful self, you are actually doing a great job of integrating mindfulness into your everyday experience. Remembering to ground yourself in the middle of a hectic moment allows for a respite from the busyness of the day and helps build a mindful life.

But if you find yourself with extra time, such as a day of travel (where you’re the passenger!) or a prolonged sit in a waiting room–jury duty, anyone?–or even the decision to turn off the electronics and retire to bed early, it is well worth giving yourself a nice chunk of extended time to engage in the self-care of turning inward and being still.

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Tip: If you’re not used to prolonged meditation sessions, start with an extended guided body scan meditation, readily available free online through YouTube, MBSR websites and apps such as Insight Timer, for a few examples. It will give your monkey mind enough to do so that your thoughts don’t completely wander off, and yet little enough so that you can feel completely into each body part.

Releasing Rigidity

I wanted to revisit the issue of having an important thought pop into my mind in the midst of a meditation session, and how I’ve ultimately allowed myself to deal with it.

For some background: in mindfulness meditation, we are taught to let go of thoughts and focus on the breath. But with all the cancer treatments that I’ve had, memory is collateral damage. During the course of a regular day, I have thoughts go POUF in the ether — and sometimes they’re important things that I really should remember. Ironically, I’ve had them return to me while my mind is still and uncluttered, as during meditation.

I’ve been told that during meditation if a thought that you need to remember comes up, you should make a “mental note” and release it, and then come back to it once your meditation is over.

If an important thought comes up during meditation, you better believe I’m writing it down!

Well, lemme tell ya, that simply no longer works for me since there’s no guarantee that a “mental note” will work. When that thought pops into my head, I’ve decided to pause my session and write it down.

You could say that I’m not supposed to do this, but I know that this is the only thing that works for me — I can record the thought and not spend the rest of the session worrying that I’m going to forget it, which might otherwise consume the remainder of my meditation.

I feel that mindfulness teachers would agree with me that mindfulness should flow out of your situation. It works with what you need, allowing you to appreciate this moment. In the Mindfulness Based Stress Reduction (MBSR) classes that I took, we were always told to take care of ourselves, to make sure that we were comfortable and secure.

It became apparent to me that I wasn’t going to look like the meditators that we see when we google an image of one: seated in lotus position, palms up with thumb and forefinger touching. That wouldn’t be conducive to a prolonged session for me.

This will not be me anytime soon.

While I do own a meditation cushion, I prefer to sit in a chair during MBSR workshops, since my joints ache and legs go numb if they’re crossed for too long. And when I’m home, sometimes I’ll lie on my back during meditation with my legs up a wall in the pose called Viparita Karani. This is very soothing for me because, again, I have problems with my feet, and this not only helps with the weird numbness but also lessens the chance that I’ll experience restless leg syndrome.

I believe that mindfulness is not about living up to someone else’s idea of perfection. Nor is it a competition to see who can meditate in the most uncomfortable position. It is staying present, noticing what is happening right now, in this moment. I can do this much better if I’m not fighting pain.

So I don’t focus on the concepts of “right or wrong”. Getting to this point took some doing because I am by nature a perfectionist. But part of my mindfulness journey has been simply releasing that rigidity of what I think I “should” do and finding peace in doing what is best for me.

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I remember as a young child listening to a missionary priest talk about his travels. He spoke of a little boy tending sheep in a field who had come up with his own prayer: he had a handful of pebbles and was talking to God, saying “one for you, one for me, one for you, one for me” as he made two little piles.

That was the way he prayed, and the priest said that it was exactly the way that suited him. He might not have been doing it “right” according to the teachings of the Church, but he was praying sincerely and lovingly, and that was what really mattered.

Surviving Another Ride in the Tube

During my last oncologist appointment, I was told it was time for a chest MRI.

The last time I had one of those, I was barely holding it together–it had been a couple of weeks since my breast cancer diagnosis an dI was in an emotionally fragile state.

But that was four and a half years ago. This time, I was fine. I thought.

In case you’re never experienced one, the bilateral chest MRI is not particularly comfy. You lie face-down, your breasts hang between two open slots beneath you and your arms are outstretched in a “superman” pose.

I was a bit taller than they expected…things didn’t completely fit.

And you hold that for a specified length of time. I seem to recall almost an hour last time in 2017, but this time it was only a half hour. Which is good, since I had a hard time getting comfortable–based on how the MRI bed was set up, they hadn’t expected me to be quite so tall.

And since I needed “contrast” in my MRI, I was hooked up to an IV for infusing gadolinium. But the veins on my right arm (which is the only one I’m supposed to use) have seen a lot of wear and tear. Yes, they bulge and look nice and juicy. But it’s a lie. Only after some false starts–the first vein the nurse tried was a bust–did we get the IV going.

The MRI machine looked shiny and competently high-tech. I got to listen to spa music through headphones, which is kind of funny, since it’s like being at a spa where they also bang pots and jackhammer while you’re getting your treatment. In case you’re not aware: MRIs are LOUD.

Ironically, there’s something quite positive about that: the percussive nature of the noise has an almost lulling effect–if you let it. This worked quite well with my strategy of meditating throughout the procedure. Breathing was not particularly comfortable because of pressure on my ribcage (again, due to my height and positioning on the bed), so I chose not to focus on it.

The dressing room was cute, but I couldn’t help feeling so alone in it.

Instead, there were many other bodily sensations that I could pay attention to. At times, I could “feel” the MRI in my hips and spine. I focused on the weight of my body on that bed and on releasing tension whereever I sensed it. Compared to the previous chest MRI, I felt a sense of grounding.

But there were little cracks in my composure. I took a picture of the cute little dressing room where I changed and left my clothing. It was lightly decorated with homey touches. At the same time, it looked so empty: my gown on one chair, my belongings on another. Briefly, I felt small and alone.

After unsuccessful attempts, the IV was connected, and I remembered the feeling of expecting that things were just gonna hurt.

After I got home I removed my bandages from the IV arm and looked at the crook of my elbow, and it reminded me of all the pokes that I’ve endured. All the discomfort that I learned to expect and not question if it was necessary, because it always was. And I fought back feelings of helplessness.

It’s not all bad. This time, I had a better grip on things. I wasn’t even thinking about the MRI the next morning when I went grocery shopping, until…

…I saw a call come through from my oncologist’s office. And suddenly my heart started racing. It was a pure knee-jerk reaction. The voice on the other end told me that the MRI looked normal and my oncologist would see me at my next scheduled appointment next year.

It took a bit for my heart to calm down. I hadn’t been worrying about the results, certainly hadn’t expected anything bad, but wow, when that phone rang, it was as if my brain yelled at me, “Time to PANIC!”

This ride in the tube had a happy ending. But there’s no mistaking all the anxiety bubbling under the surface. Try as I might, I am always going to associate these procedures with fear and possible death. Memories of what happened a few years ago are not going anywhere.

And that’s okay. Because even though my reactions to those memories may still be stressful, I can accept that this will be the case and not expect them to be otherwise. And that acceptance is one of the most valuable skills that I’ve learned.

I Still Don’t Recognize “Myself”

You know how you have a picture of yourself in your mind’s eye? The way you imagine you look?

For four years, that self didn’t mesh with reality.

I still saw the long-haired fitness freak who’d never had a surgery in her life and definitely no serious illness. The one who was remarkably healthy at 50…the one whose co-worker assumed was age 35.

This is a perfect illustration of how I felt post-diagnosis.

That reality changed in an instant. The unbelievable happened, the unexplicable knocked me off my feet. There was no transition time. I went from super-healthy and super-fit to being diagnosed with one of the most dangerous diseases in our experience.

As the saying goes, “If you don’t have your health, you don’t have anything.” My health was everything to me, and suddenly I felt as though I had nothing.

And in the cruelty that is cancer treatment, off went the hair. Now there was no mistaking that I was “sick”. So when I bumped into friends who hadn’t heard about my diagnosis and tried to explain what had happened, they all said the same thing: “I know.”

Every time I walked past a mirror, I would get a shock. And this went on. Through the months of chemo, through radiation, waiting for regrowth that seemed to take forever.

My oncologist told me to be patient, the hair would come back. It was different for everyone. But I was still scared. And acceptance was a new concept that I was not comfortable with.

Yes, I felt I bounced back the year after chemo – working out hard, with the most awesome new-growth hair that random people would stop and compliment. That year, I felt strong and full of promise. I dared to say that cancer MIGHT have been the best thing to happen to me…

But as time went on, reality moved in again and I realized that there really was no going back. And that “lift” that I had gotten after my hair started growing back and I was hitting the gym hard, well, I crashed again.

Picking up the pieces has been a process…

Endocrine therapy pushed me through menopause. My hair thinned. And most devastatingly, I lost two friends who had been diagnosed with breast cancer around the same time that I had been.

I couldn’t celebrate that. And I fought it for months and months.

Four years later, I’m comfortable with calling myself a cancer survivor. But you know what? I still get a little jolt when I walk past the mirror. It’s still not the “me” that I expect to see. After several years of endocrine therapy, I do not look like I used to. My body doesn’t feel like it used to.

So I stopped beating myself up about it. I need more rest time between workouts. I get tired earlier in the evening. Yeah, I forget things. A lot. So I write more notes and declare my intentions out loud (“I’m going to have to take the next exit…”) so I remember what I’m doing.

I still don’t recognize “myself” in the mirror, but that is a previous “self” who was the right “self” for that time. The current “self” is wiser and more gentle with her body and her spirit.

And I do recognize her.

Just Show Up

The thing about cancer is that the news hits you hard at once.

And it’s not like you get time to get used to it, because the diagnosis is LOADED. All those scary things that you’ve ever associated with the “big C” rush at you and there’s no real way to protect yourself.

It would be terrifying for anyone, but those of us currently in mid-life grew up at a time when cancer treatment was not as refined or targeted as it is now: visions abound of hospital beds, bald heads, bodies wasting away, vomiting, hopelessness. Most cancers were frequently fatal and diagnosis was the beginning of the end.

Everyone’s pushing you to fight, fight, fight. It sounds like the right thing to say, but it can feel exhausting.

As we’re trying to process what this all means for us, for our future and for our families, others try to prop us up with cheers of, “Be a badass!” “Stay strong!” “You’ll beat this!” “You’re a fighter!”

So between juggling the cancer news and the “hang tough” messages from those around us, everything gets overwhelming. Our oncologist lays out a treatment plan and suddenly we need to learn a different language. Tumor types, chemo drugs, clinical terms, side effects.

I distinctly remember wanting to hide under my bed and wait for it to go away. There was so much I needed to do and I didn’t know how to get through it all. It seemed like an immense amount of work for one person.

And then it hit me. All I needed to do was show up.

I put the gloves away and realized I didn’t need to fight anything. I needed self-compassion.

I didn’t need to be the warrior that everyone was pushing me to be. The mere fact that I was going to my appointments on my scheduled day was enough. I wasn’t going to win a prize for being the best “infusee” or for absorbing the most radiation the fastest.

I didn’t have to fight. All I needed to do was endure and allow. To accept what was going on and move through it. And to breathe.

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I brought my office work with me to my first infusion. I was going to be there for at least 5 hours so I figured I should use the time “wisely”. I fired up my laptop but soon the Benadryl that I was given to prevent adverse reactions kicked in and brought on drowsiness.

Suffice it to say I might have answered an email here or there, but did little else. The same thing happened during the next infusion, and the one after that. Eventually I realized that the wisest way I could spend my time was by giving myself permission to rest and ride out the treatments.

When infusion day rolled around, I learned to put aside my work duties and family responsibilities, and simply be. It was such an uncomplicated concept, the benefits of which rippled out beyond my treatment. Why did it take cancer to teach me that?

What My MonkeyMind Needs, Part 1

This post was inspired by Smilecalm’s beautiful combination of words and pictures. He has a very insightful monkey!

I got thinking about my MonkeyMind. Most of the time it’s doing a lot of chattering, distracting me from the present and keeping me up at night. I meditate in an effort to shut it up, but that’s a struggle.

We have had a tumultuous relationship, MonkeyMind and I.

I’ve tried to wrestle it into submission, but WOW does it put up a fight! We stand at odds, I in one corner and my MonkeyMind in the other, dukes up, gritting our teeth.

Headaches result. This is tiring. Something needs to change.

After numerous fruitless boxing matches, I decide to try something else, something I hadn’t thought of before. I invite MonkeyMind into my home. While I had, in the past, taken it by the scruff of the neck and attempted to toss it outside–an exercise in futility–now I’m opening the door…

We stare at each other. MonkeyMind looks a lot smaller sitting on the rug by the front door than when it’s screaming in my ear at 3am. Gentler and less menacing. Even a little scared, unsure of what’s going to happen.

MonkeyMind doesn’t look so scary there on the ground by itself. You mean, this is the little guy who’s been giving me so much grief?

I pat it on the head. Its fur is silky soft! I expected a rough, bristly coat, but it’s nothing like that. I can’t resist, I pick MonkeyMind up and then, as I look down at its anxious little face, I’m struck by an overwhelming urge to hug the little bugger, so I do.

And then something new happens: MonkeyMind burbles contentedly. I’ve never heard that before!

Then again I’ve never held MonkeyMind before. I’ve never given it the attention it required to make its needs known, never been sincerely patient with it, never cuddled it. I’ve just tried to push it away.

This is so much nicer.

Now when I wake in the middle of the night and notice MonkeyMind chattering in my ear, I take it in my arms and rub its tiny feet. I stroke its little back and feel the softness of its fur against my face. We take a deep breath together.

I feel grounded and present. MonkeyMind settles down. We both go back to sleep.

(Read Part 2 of this story here.)

Making Peace with Street Noise

Is it possible to re-imagine annoying city noises?

At the least, living in an urban area with a high level of noise pollution is annoying. At worst, being subjected to car alarms and emergency vehicle sirens at any time of the day and night is very jarring and stressful. And I’m speaking from personal experience here, as following our last move, we ended up with a bedroom overlooking a very busy Southern California street.

The stretch of road outside our apartment unit is one of those that give cars enough distance between traffic lights to really accelerate as they blast by. It also leads to one of the major hospitals in the area (hello, ambulance traffic), and this being a big city with big city issues, there’s no shortage of opportunities for the police to be called out, sirens blaring.

There are many days that I wish I weren’t where I am. But wishing doesn’t change anything.

Drawing on mindfulness helps, however, and this is how:

Re-interpreting noise as different sound elements turns an “idiot street racer” into a thunder-like rumble. Much less annoying.

Much of the stress I experience from these various car noises is due in part because I know what they mean. I know that the sounds are the constant stream of cars going down the street or a high-pitched siren wail. But what if I were to accept that I’m living in a noisy city and to define the street noises as simply various sounds?

What if I were to break down the sounds into their characteristics? Would it be easier to handle the noise if I stopped judging and explored each sound as if I were hearing it for the first time?

This is far more doable than one might imagine. Yes, alarms and loud tail pipes are decidedly unpleasant, but they don’t punctuate my soundscape nearly as frequently as do the regular cars driving by. The cars speed through with whooshes of different pitches depending on the vehicle and how quickly it passes.

Sounds of passing cars transform into soothing waves – with the occasional jarring reminder that things are not entirely pleasant.

These sounds rise up and pass away like waves on the ocean – in fact, that whoosh can be soothing, just like the sounds of the ocean can lull you to sleep. Even noisier cars and motorcycles take on a rumbling quality, like thunder. Allowing oneself to re-interpret these sounds, to let go of annoyance, makes even the more jarring noises easier to handle.

When you can’t run away from the noise, make space for it, invite it in and accept that this is what’s happening now. Inevitably, it will pass, to be replaced by another noise and another opportunity to re-imagine it.