Layer Cake Life

Category: The Words We Choose

  • Manageable

    Manageable

    … Intangible (ah y’all), bet you didn’t think
    So I command you to, panoramic view (you)
    Look, I’ll make it all manageable

    Gorillaz – Clint Eastwood

    I’m not sure I’ve ever really wrapped my head around this lyric, but it’s currently stuck on a loop in my head.

    I have a wee quirk that makes my brain play clips (e.g., song lyrics, short scenes from movies) when a particular word is mentioned or when a certain situation arises. I have to work hard not to react aloud when this little play button gets pressed in my head. It’s harmless, but it’s a thing.  

    For example, I can’t hear the phrase “Think it’ll work?” (Or some variant of it), without responding in my head “It would take a miracle.” in Billy Crystal’s voice from The Princess Bride. I’ve been supressing the urge to say it out loud since the late 80s.

    Similarly, I can’t hear “one time…” without hearing Wyclef Jean from the Fugees in Killing Me Softly. I’ve only been supressing the urge to say that aloud since the late 90s. 

    In 2023, it’s Gorillaz and Clint Eastwood. I’ve known the song for years. It’s a jam. I sincerely love it. But this year a particular word started to tweak my sound bite syndrome.

    It’s “manageable.”

    Manageable is, for the most part, perceived to be a good thing. In our world, in our medical world specifically, it generally comes with news that is not necessarily what you want to hear, but with the hope that you’re going to be able to do something about it.

    Food allergies = manageable. Pack safe food. Carry an Epi pen.

    Non-malignant brain tumour = manageable. Surgery and chemo…prognosis is good.

    Monocular vision = manageable. In time she’ll adapt and likely even be able to drive.

    “Manageable” is also how some minor deficiencies and shortfalls may be described.

    The ongoing chemo and dairy allergy combined mean that bone health needs to be watched and monitored. Your kid fractures a few things over a couple of years, and you manage that. Her bones aren’t bad, but they may need a boost in the long run. Add supplements and get exercise in where you can. Totally manageable.

    The term can also apply to complicated, scarier things that you just get used to and learn to manage over time.  

    Hemiparesis from my daughter’s stroke has been a big one to figure out, but we have teams of occupational therapists, physical therapists, and orthotists who’ve been helping us with this for years. As the person with the condition grows, they also problem-solve and figure out their own solutions. This condition was actually starting to feel like we could handle it. Plenty of setbacks, a pretty steep learning curve, and a shit tonne of work for a wee little kid, but life still happened around it. “Manageable.”

    But there comes a point when layers of “manageable” start to compound. The pandemic didn’t help for sure. New protocols and stressors. New additional challenges to learning and socializing. Again, “manageable”, but not insignificant for anyone.

    Continual tumour growth (though slow and steady thanks to the chemo) definitely added a few new layers too. At the beginning of this year our daughter was back for another round of brain surgery. They removed another massive amount of the tumour, which was awesome, but there have been consequences with her endocrine system**, which has not been awesome. Several new conditions requiring several new treatments. All of it ongoing and evolving. Some of it is life threatening in a whole new and exciting way.

    **NOTE: The endocrine system, if you don’t know, is a big deal. It kind of runs a lot of the show behind the scenes. All those hormones that regulate growth and development, hunger and thirst, urine output, stress responses, and sleep…the hormones we take for granted long before puberty even enters the picture, and we get slapped in the face with an awareness of how wild our body can be.** 

    Our daughter’s endocrine system took a hit with this surgery. Five years ago, it was a stroke, and we didn’t know if we’d get to bring the same kid home with us. This time, our daughter woke up her bubbly, chatty self, but it quickly became apparent that some of the systems running in the background were not online. 

    These new developments have been a lot to manage. 

    The trigger for this most recent surgery has itself become another few layers of things to manage. Our daughter has had vision in just one eye since she was three. Other than protecting the good eye with super stylish kid glasses (she has better taste than I do), vision was not something we really followed closely. She only had one eye, but it was a good one. Until of course, it wasn’t. Changes to her vision prompted her second major surgery. It took the pressure off her optic nerve, but she didn’t regain what was lost. 

    Now, in addition to managing food allergies, accessibility, and learning deficits from illness and absence, in addition to life saving precautions and treatments for an endocrine system that’s barely phoning it in, this 8-year-old is also managing significant vision loss. And for the most part, she just fucking does it. It’s absolutely wild how much she just rolls along and lives her day-to-day through all manner of madness. 

    But it’s another layer, on top of many other layers, that are being managed…and for all of us, our daughter the rockstar included, it’s starting to feel a lot less manageable. 

    We’re good at this. We’ve been doing this most of her life now. We have teams of supporters in and out of the hospital that dab our brows with a towel and push us back into the ring every time we take a hit. But you can only take so many hits before you can’t get back up.

    As parents, we’re also “managing” all those basic parent things, like trying to make sure both children get to school, that our daughter gets the opportunity to make friends with real live kids, that she learns to read (despite an embarrassing number of absences and a total lack of educational assistants for students with exceptionalities), that she gets to be an actual kid before she has to learn to manage all these extra shitty things herself. 

    I’m an organized, resourceful person and my partner is a smart, driven, dedicated parent. We work well together, and we have more resources and flexibility than many. But no tracking table or “ToDo” list can effectively capture all this. There aren’t enough hours in the day to manage all the 5–15-minute tasks and therapies and treatments we’re trying to implement and no app that can synchronize the choreography and timing of it all.

    Each of these things takes time and brain power and a little bit of soul. As a caregiver and a parent, some days I feel crushed by the weight of the (literal and figurative) binder we carry to hold all this information. I feel guilty that I’m not doing her exercises enough, or getting her to drink enough, or playing with her enough because I’m always trying to get something DONE. It’s the time as parent and kid that gets cut for the time as caregiver and patient.

    This is why I bristle at the word “manageable.” It’s not a bad word. It’s a good word. It carries hope and a plan of action. It also carries responsibility and weight that cannot be shifted to someone else. As much as we would like to lighten our load, focus on the positive, and affect some fucking self care, families like ours, with kids like ours, must accept that we cannot step out of the ring. The hits will keep coming and we will have to find a way to get up. (Cue Captain America sound bite: “I can do this all day.” I don’t feel it, but I hear it.)

    So, I have a few requests.

    To those who engage with us professionally and personally:

    Please remember that we’re trying. We’re trying so hard. We are never not trying, even when it seems like we’re not. There are no breaks, no vacations, and no off switch. All of that requires planning and training and protocols as well. There is only prioritization, and we can only carry so much up front.

    When we’re told that a condition, treatment, or situation is “manageable” please understand that a delicate balance is about to be disrupted and we’re trying not to explode. 

    15 minutes of therapy or tracking doesn’t sound like much but every day it has to work along with home reading, administration of meds and treatments, meal planning and prep, extra admin work and communication, insurance forms, emails advocating for or requesting services, extra calls with school staff, searching for shoes that fit over bulky orthotics, searching for or driving to activities that may or may not cater to your child’s particular needs, pharmacy runs, spontaneous specialist appointments and calls, midnight ER visits, and somewhere in there…we have two children that need us to pay attention to who they are actually becoming and what they need amongst the noise to be real live people.

    Oh, and we also have to find a way to be employed. Maybe maintain a relationship or two. Maybe work on being human ourselves, instead of just the sum of our functions.

    “Management” is the right word to use. Caregiving a job. It requires focus and expertise and an understanding of overarching goals and how it all fits together. It takes time to build the skills and the systems to integrate new tasks and procedures and we, as parents of medically complicated kids, don’t generally get a lot of time to do that. You are not likely the only one throwing a wrench in the system this week. We appreciate that it’s all important, but It’s. All. Important. 

    So please…

    1. Be patient.
    2. Be flexible. Your time is at a premium, but so is ours.
    3. Tell us the good news (when you can).
    4. Acknowledge the things we’re already doing and highlight what we’re doing right. This can change the course of our day completely.
    5. Remember that our (brain) storage space is limited, and our processing power is taxed. Speak plainly and write terms, next steps, and drug names down. Give us something to Google and a reliable source to consult when we have time to process what you’re asking us to do for/with/to our kid.
    6. Support caregiver leave, pay, home care, and respite. There are so many ways to do this.

    Every day, parents of medically complicated kids are doing things we didn’t sign up for and for which we have received no training. It’s a job on top of a job on top of a job.

    To those who already do this…Thank you!

    To those who do not…

    Take a panoramic view. See who we are as a family in the context of our child’s condition. For good or for ill, it frames everything for us.

    Make it tangible, digestible.

    And you’re going to use the word, please use your skill set and expertise to help make it genuinely manageable. 

    Ok…I get the sound bite connection now. Thanks brain.

    Enjoy some Gorillaz.

  • At least…

    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.