At least…

“At least…” is a slippery little sentence starter. It’s not so devious in the middle of a sentence when it’s used to talk about a tangible quantity of something, such as: “I’ve eaten at least half of that Costco-sized bag of potato chips.” But it’s also one of those qualitative expressions that, when worked in right at the beginning, can come across a few different ways.

It’s often used conversationally with the intention of expressing a degree of gratitude or to acknowledge some degree of good fortune. In this usage, it’s often delivered with a sigh and a shrug: “At least you’ve got your health.”

It can also be used with a smirk and a raised eyebrow to throw some ruthless shade. “At least I’VE got a job. At least SHE can get her ass out of bed to walk the dog in the morning.”

We’ve often heard it used to compare our situation with those of other kids and families in the medical world.  In general, people are trying to make us feel better.  “At least it’s not malignant. At least you’re out of the hospital. At least she’ll be able to go to school.” It’s all definitely on the gratitude side of things. We have, objectively, been in some pretty dark places since diagnosis.  It is good to not always be there. We are grateful for progress and healing and all the love and support that has gotten us where we are.  We like to acknowledge this.

But (talk about a loaded sentence starter…) I have chosen to omit “at least…” from my vocabulary. (As a sentence starter…I can still brag about eating at least a half a bag of chips.)

As a next step and in specific reference to situations like ours, I’m going to go ahead and ask others to maybe consider doing the same.  Here’s why.  It’s not nice or helpful to shit on someone else’s situation to make yourself or even someone you love, feel better.

Here’s the thing I’ve learned while existing in some pretty dark places. When you’re in one of those dark places, you feel alone. You feel like the world is falling apart and unfair and you are angry and sad almost all of the time.  You inevitably run into other people who are in their own dark places.  Sometimes their dark places overlap with yours and sometimes they look and feel very different, but the common thread is that none of them are good. They are all dark.  No one wants to be there. No one chooses to be there.

Over the last couple years, we’ve met and gotten to know people and situations in several different hospital wards, from the Pediatric Intensive Care Unit (PICU) to oncology, to brain injury and rehabilitation. I can say, with absolute confidence, that no two experiences have been alike, but they are all shitty. I call them (not originally) “shit sandwiches.”  It’s what they serve in the dark places. Exclusively.

I can only speak to our personal experience in a children’s hospital and dealing with our own child’s condition, but I feel this applies to a lot of different situations. Bear with me.

At some point, everyone gets a “shit sandwich” to eat. Some people get several and some people are forced to eat them on and off throughout their whole lives. Our shit sandwich came with a pediatric brain tumour and a stroke and severe food allergies to work into the mix. It’s a meaty patty for a shit sandwich and it’s hard to swallow. However, I have to acknowledge that our shit sandwich also came with some fancy toppings. It came with financial stability and accessible health care. It came with family and community support and compassionate places of employment. It came with a side of friendly and communicative health care practitioners, and we got to add our own special sauces of education and past life experience that helped us wrap our heads around our situation as it was happening. Our shit sandwich is BIG, but there a lot of toppings on there that make it digestible.

In the dark places we sometimes frequent, we meet people who might have subjectively less meat on their sandwich; a smaller tumour, a concussion, or a single, less complex diagnosis. But not everyone has the fancy fixings to help each bite go down.

They might live hours from family or friends for treatment, or their child’s losses may be more likely to be permanent. Their condition might be more treatable, but more likely to return. Missing work might mean losing a job, with the resulting financial turmoil, as a side to the terror and anguish of watching their child fight to live and function.

It’s tempting to try and compare shit sandwiches…since we’re all eating them at the same table.  “At least…” is an easy way to do that. “At least our daughter got her speech back. At least she has vision in one eye. At least she can go to school. At least she’s happy and doesn’t remember life before all this.”

It’s a good thing to be thankful and it’s even better to celebrate the wins, but “at least…” pities and sneers at the misfortunes of someone else because it is always a comparison with something that “could be worse.” My life sucks, but yours sucks more. It casts shade on someone else who is already sitting in the dark place, eating a shit sandwich. I don’t want anyone using my daughter as their shitty baseline for comparison (“At least my child can use both their arms. At least my kid doesn’t have a brain tumour.”), so why would I use someone else as that baseline for comparison myself?

There is no sympathy, no love, and no support in “At least…” as a sentence starter. It is inherently judgemental and comparative, and there are certain things in life that you just cannot compare, and that you should not judge.  If your goal IS to be judgey…then have at ‘er, but the people chowing down in the dark place already feel all manner of judged.

You may find yourself with an unpleasant meal in the dark place at some point in your life, and you will feel empathy for those around you, because you can feel their pain and their fear, even if it isn’t the same as your own.

Your “At least…” may be some else’s reality, or it may be their reality in the future. They don’t need to be reminded how bad it tastes. Even if they can’t hear you say it, it becomes an undercurrent in the culture around them. It’s pretty obvious when something in your life is someone else’s worst-case scenario, and you never know when you might be served the same dish, or one that’s even more unpalatable.

The day before my daughter’s diagnosis, I stood in my parents’ kitchen, spewing off my own “at least…” about her food allergies. “At least it’s a manageable condition. At least schools and other parents acknowledge it and make accommodations. At least it isn’t cancer…it could be worse.”

“At least…” tempts fate in the most terrible way. If you’re the type to knock on wood or covertly toss salt over your shoulder, stay the fuck away from “At least…” Statistically speaking, we all end up sick, or hurt, or with some kind of disability at some point in our lives. Don’t unnecessarily put yourself (or those you love) in the pocket of hubris. You are not above or beyond any of it.

If you want to say something positive to someone who is dining on shit sandwiches in a dark place, just say it. Be real. Be genuine. Be in the present.

“You have a strong family.”

“She is doing well.”

“I can see his progress.”

“I’m proud of you.”

“It’s so good to see you.”

“This fucking sucks, but you’re doing everything you can.”

That’s the hot sauce and the fizzy drink to help it all go down. People in the dark place are taking things moment by moment, day by day. Don’t bring the past or the possible future to the table, because diners in the dark place know that there are no guarantees and no gains that can’t, potentially, be lost. It’s exhausting to always try to be positive and looking back or too far ahead can be overwhelming. We’ve got our hands and plates full already. Just help us get the current serving down.

Perks of the Job

There are a lot of shit moments in my new world as a caregiver. My career, as it was, is on hold. There are trying times doing emotional, psychological battle with a three-and-a-half-year-old. There are long, boring waits in medical centres and rehab facilities and drawn out, anxiety-inducing waits for test results at home while we’re trying to just get on with our lives. There is always an undercurrent of fear and frustration and anger at our family’s situation and what we all have to give up and work around in the reality in which we now, and forever, find ourselves.

But, and it’s a big but (cue the immature giggles at me saying “big butt”…I spend a lot of time with kids), there is also a new pace of life and a flavour of love that we would not have if our world had not been completely shaken up this time last year.

I’m going to be self-centred and zoom into my caregiver role in particular here. If this role had not been forced on me, I would be spending this afternoon fretting over a deadline, bitching about the client that was pushing for twice what they paid for, and then frantically packing my laptop into my bag, forgetting the critical power cord in the office as I crammed myself into my car to fight highway traffic to collect the kids from daycare and school. We’d jam food in their faces before rushing them to extra-curriculars, snipping at everyone along the way, sandwiching homework and home reading in just before bed to do it all again the next day.

While that is all relatively normal, and it’s not bad, it’s also a life that feels less relevant than it used to. Because someone needs to be here, and available, managing appointments, and therapy and chemo, someone is. That someone is me and after a year, that old life feels pretty distant. I’m home and the days have to be flexible with wiggle room and room to rest, so the rat race pace is less intense. Mornings and afterschool routines are more relaxed. We schedule less and roll with it more.

My work as a caregiver, and it is work, expands to fill all the time I can give it, but there are also moments and tasks that just have to be quiet and filled with something else. I may be on call all night, but I have an hour here and there, when my daughter is with a grandparent, or watching a movie waiting for chemo, when I can just sit and read. My day-to-day life is not spent at the computer, or on conference calls, so I enjoy sitting and writing and I relish actually talking to people again.

I’m always stressed and anxious, but I also have a therapist prescribing gym time and painting to preserve my mental health. Self care is no longer a luxury, but a requirement. If my body fails, I can’t do my job, so I’ve made getting in shape a priority for the first time in my life and am sticking to it. I can’t wrap my head around an actual piece of art, but I’m picking away at painting an old doll house because I need something, anything, to do that is not involved with my daughter’s care and medical needs or family administration.

I am not going to deny that our situation, while challenging, is a hell of a lot easier in all this than it could be. Another day, I’ll dig myself into the layers of privilege we have in dealing with this whole mess that make it possible for me to not work at anything but the care of my daughter right now. (Short version: Holy shit, we are lucky we live where we do and were born into a place of comfort and education.)

I’ve spent more time with my daughter in the last year than I spent with her in her first two years of life. My relationship with my partner and my son are deeper and more grounded than I ever thought possible, because we’ve had to build different connections and ways of communicating. We spend our weekends and time together so much differently than we did before because that’s the way it has to be. We don’t try to pack too much into that time. Our situation has slowed us down, and there are definite benefits to that.

As a caregiver, as any caregiver can attest, your time is not really your own. You’re never really off duty. You never really relax. You are the day shift, the night shift and the emergency room shift. You are the repository for all the important information and the shield that the shit hits on its way to the fan. I don’t drink any more because I don’t want to be half in the bag in the ER trying to coax my daughter through a CAT scan. My partner is absolutely willing and capable of doing this, but it’s my job and I’m stubborn and I’ve got the front-line experience. I don’t want to drop the ball.

This is not a “poor me” situation (though of course I wouldn’t choose it). What I am trying to accept and fight for (with myself), now that we are out of crisis mode (hopefully for a while, ideally forever), is to still be myself in amongst all the other things. I’m trying to maintain the parts of me that I like and that I have control over.

I don’t know if my career will ever be what it was. It certainly won’t be what it could have been. My family life, another aspect of myself, will never be what a lot of other people have or what we thought it would be. I can’t control what has driven those changes.

What I can control, and am learning to relish, is the time and space between the caregiver tasks. I don’t feel so guilty about time to read, or to doodle, or to write escapist garbage, or to savour a coffee and the odd cigarette on a sunny day. I’m learning, slowly, to not ask for or apologise for that time. I’m trying to just take it. There aren’t a lot of perks to this job and unpaid interns bring home more bacon. Might as well make the most of it.

It’s like that.

I wasn’t prepared, sitting at my desk at work, eating left-over  shepherd’s pie and scarfing cold coffee…to start crying.

I WAS going to suck up my lunch break watching trailers for movies I don’t get around to seeing until they’re on Netflix.  Instead, I fake sneezed and withdrew to the ladies to try and de-blotch my eyes.

I’d come across this video  from www.foodallergy.org.

I’m not connected with them in anyway, but for obvious reasons, when I fall into a research/panic hole about all this stuff, I often end up on a path that leads to their resources.

This video wrecked me.  This is it. This is what it’s like and will be like for my kid and my family. These kids are my kid at various stages of development, and these parents have the same fears and necessary protocols and feelings of guilt and anxiety that we do.

I used to be a pretty chill parent (relatively speaking), but it’s hard not to let the type-A terror demon loose when half of what the food guide recommends your kid to eat, could kill her.  I cried because these families get it, and we don’t really know anyone in our circle who really does. It’s not a lack of empathy or interest. It’s just a lot to take in and work into your life, and like many other conditions, it’s hard to fully grasp unless you’re in it. I know I never did.

If you want a little slice of what it’s like to be in the head space of a parent with a kid who has life-threatening allergies, this is it.  The creepy stranger that lurks in the back yard where your kid plays, the boogey man that’s hiding behind every corner…Parents and kids have different ways of describing the feeling where everything is suspect. I can usually roll with the notion that “it could be worse”, but it’s always possible that it couldn’t be, and that’s what makes it hard.

To those who’ve shared their experiences in this video and others like it, thanks! It always helps to know you’re not the only ones.

NOTE: FARE (Food Allergy Research and Education) has a whole “Food for Thought” video series that’s worth checking out.

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