Let’s talk about anger.

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Every Saturday morning my husband and I head over to our local bagel shop for our weekly dose of carbs hot off the the wood fire.  Most weeks we read the Globe and Mail together often leading to a conversation about some hot-button news topic.  No surprise that this week the news item was Kavanagh and female anger.

 

The Globe had and excellent opinion piece exploring female anger, and in particular the challenges many women face expressing their anger in a patriarchal world that does not equate anger with femininity.  Oftentimes angry women are derided for being hysterical or hormonal even when their anger is  reasonable and well-expressed.  And unfortunately in a world where privilege and power are often stacked against women the only way to advocate can often involve anger.  The challenges for caregivers are even more pronounced.  Anger can be an understandable response for maternal caregivers embroiled in a system that ignores their hard-won expertise, at times leading to the continued suffering of their child.

 

Like most maternal caregivers I could tell many stories of a system that failed my son and earned my anger.  But one stands out.  Several years ago I brought Matthew to the ER at our regional children’s hospital.  By this point in Matthew’s life he was well known to the ER team.  Matthew’s very severe reflux had spiralled out of control.  He was regurgitating upwards to 14 times a day.  He was regularly vomiting blood.  And he was miserable.  Oh, was he miserable. He couldn’t keep food, water, or medications down at all. His aspiration risk was through the roof and he was monitored at all times, including during the night.  His pain was poorly controlled and he was unable to sleep. He fussed and screamed constantly.   I remember these days as nothing more than a constant attempt to find a way to make him comfortable.  We lamented that we measured his medical stability and pain free time  in minutes, and perhaps hours.  The idea of an entire day of a happy Matthew was inconceivable.  Conversations among his community based feeding and care team began to dance around a possible GJ tube (jejunal feeding tube), or even TPN (total parental nutrition via IV).  We regularly met with his health care team to discuss our concerns, but no forward movement seemed to occur.  Physicians were often unwilling to manage pain they did not understand until I gave them no other choice – so we listened to Matthew cry.  To say I was angry and frustrated would be an understatement.  I had been questioning the need for a fundoplication (sealing the stomach to prevent reflux) for years.  Doctors scoffed at my suggestion.  On one occasion I was told Matthew would have to “earn” a fundoplication by failing all other treatment options first.  My son was suffering and my concerns and suggestions were unheard.

 

One day I decided enough was enough. Like many other days Matthew was vomiting blood and crying.  So I packed Matthew into our accessible van with an overnight bag and drove to the now familiar ER.  When questioned by the team about why Matthew was “in the ER today”, I responded that we were here because I had “finally snapped”.  I told the team that  I was frustrated and angry about the system’s lack of response to my concerns and we were not leaving the hospital until an acceptable plan was developed to respond to Matthew’s wildly out of control reflux and chronic pain.  I was pissed and I wasn’t leaving.

 

Matthew was admitted to hospital and this admission led to a year long journey with a GJ tube – which failed miserably – and finally the hard-“earned” fundoplication I had been advocating for for years.  But what I learned later is that immediately after my “I snapped” comment a member of the medical team called Matthew’s case manager – someone who had worked with our family for years.  The case manager later told me that she was questioned extensively about my mental health and my ability to assess my son.  The case manager was told that the medical team was deeply concerned about my “I snapped” comment – suggesting to them that I was no longer coping and my care was consequently compromised.  I will be forever grateful to our CM because her response was reportedly “do you blame her?”.  She pointed out that I had been reasonably expressing concern about my son’s declining health and spiralling reflux for months.  She noted that Matthew’s pain seemed out of control and that he was failing to thrive – a concern noted and documented by the community homecare team at her end.  And she noted that my regularly voiced concerns were being ignored at Matthew’s great expense.  She suggested that rather than spending time focusing on my (in their opinion misplaced) anger and frustration, or my mental health, that the team might actually listen to me and try to figure out what was going on with my son.

 

To me this story illustrates the problem a deeply patriarchal system such as medicine or law has with women’s anger.  First off,  as a woman and mother I am not supposed to be angry, even in the face of a system that is failing my son.  I am supposed to walk into an ER and defer to the patriarchal system that interprets and manages my son’s body, even when that assessment goes against my “read” of my son’s health.  I am expected to ignore my maternal knowledge, unique and highly responsive to my son, and extend full decision making capacity to the medical establishment and their objective knowledge.  Sure, these days there is conversation about collaborative medicine, and at times it is practiced well, but I can tell many stories when physicians were loathe to include me as a peer in the conversation, with troubling outcomes.

 
In this example of Matthew and me in the emergency room, rather than listening to my concerns, exploring their role in the situation, and examining constructive responses, all of which involved working with me as an equal, the team immediately became defensive in response to my anger and a challenge, no matter how politely worded, to their authority.  Their first response was not to explore my concerns, but to call our case manager to express concern about an “emotional mother”.  Because in this situation it couldn’t possibly be that I, a deeply connected mother lacking a medical degree,  could be correct in my assessment of my son’s health when they had been missing the problem for months.  No, the problem was clearly that I was a hysterical woman and not coping.   For the record at no point was my behaviour out of control.  I was reasonable and polite throughout, though I was also assertive and clearly resolved to remain camped out in the ER until there was a plan to address my concerns.  In other words I held the system accountable.  It seems they didn’t like that.

 

Today’s article in the Globe reminded me of this situation in the ER.  I was reminded that anger and assertiveness in women, even controlled and politely worded anger, is often actively muted.  I was reminded that attempts to hold a patriarchal, power-based system accountable for their behaviour can lead to woman-blaming.   Women are socialized to be acquiescent, deferential, and even engage in self-blame, in situations where they have been abused, ignored, or mistreated.  Rather than exploring the cause of my anger, the first response by the medical establishment when called to be accountable was to place the reason for my anger squarely upon my shoulders.  That somehow I was no longer coping with the extraordinary caregiving demands heaped upon my shoulders, or that I was depressed, or anxious, or hysterical.  The problem was me, because it could not be “them”.

Starting over.

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This is an exciting time in my life.  I have been an adult student for well over a decade. Years ago I decided to return to school to earn a second masters degree.   That degree segued to a PhD.  I am still working on that degree!
It wasn’t so much that I wanted another degree, or two, but that the academic work I was doing helped me address some of my own existential struggles about mothering and caregiving.  I often joke that my academic work has simply been a labour intensive and expensive form of therapy.

 

But after many, many years I am beginning to see the end of this journey.  If all goes well by this time next year I will have completed my (final!) degree, or be very close to defending.

 

I have spent most of my adult life being a caregiver and/or student.  I have spent most of that time being totally overwhelmed and struggling to sort out how I would juggle those two, often times competing, demands.  For long stretches of time I fear I did not do it well.   I could tell you about my second PhD comprehensive that was probably some of the worst writing that I have ever done.  It was a frustrating and deeply humbling experience that almost sent me packing.   To be fair my life was hell back then, but I refuse to make excuses.

 

So I find myself now looking a year ahead and thinking that for the first time in over two decades I could be neither a full-time student, nor a full-time caregiver/mother.  It is both an exciting thought, and absolutely terrifying.  After many years of never having enough hours in the day, or night, I find myself facing a future where I will need to learn new ways to fill my days.   My youngest will be leaving for university.  My eldest is an adult sorting out his next steps.  And Matthew now lives a shared-care life where his care is divided between our home and a group home.  Even when he is at home with me his care is well-supported by a complex team of caregivers and nurses leaving me with a fraction of the caregiving responsibilities I shouldered in the past.

 

So these days I find myself thinking about what is next.  And I know I should be excited.  And most days I am.  But there are moments when I simply feel daunted.  I am 50 and I am starting over.  Indeed there are moments that it doesn’t feel like I am starting over, but simply that I am starting.  In many ways I am in the same place as my 22-year old son  – trying to figure out what I am called to do and whether the world will support or hear that same calling.  And then there are periodic moments when I mourn lost opportunities.  I am not proud of those moments, because they can quickly resemble pity parties where I am saddened about what I didn’t get to do during the years I was caregiving, rather than focusing on my present-day life of immense privilege and opportunity.

 

I am aware that my “decision” to remain at home wasn’t a decision at all.  There was no other choice twenty years ago and to pretend there was is unfair to my younger self.  I need to remind myself of that every once in a while.  I also need to stop comparing myself to women who did not spend 20 years as an extreme caregiver.

 

I recently tried to sketch a tentative work plan for the next year.  I tend to do better when I impose some structure on my work, particularly because doctoral work is done largely in isolation.  At the top of the page my header reads “I make plans:  God laughs”.

 

And before you think this blog post is a total pity-party I will admit that I am also proud of my efforts.  I have registered for no fewer than three doctoral programs in my life. THREE!  At times I feel my insistence that I finish this damn degree borders on masochism.  That I should have read the writing on the wall long ago – that doctoral work and my life were incompatible.  But maybe they weren’t.  =) And I hope that in the end my unwillingness to throw in the towel, and even more so my willingness to talk about my never-ending PhD journey, will remind other middle-aged women out there that a new, very cool (!), chapter in life might just begin at 50.  Or 40.  Or 60.  Or wherever you find yourself today.  So be stubborn.  Be audacious. Don’t be afraid to tell the world you’re not done.

 

The mommy blame game.

This week I have been reading two excellent books exploring motherhood, caregiving, and disability – Lisa Freitag’s Extreme Caregiving: The Moral Work of Raising Children with Special Needs, and Gail Landsman’s Reconstructing Motherhood and Disability in the Age of  “Perfect” Babies.  If such topics interest you I would strongly recommend both books.  While both are academic books written by academics, they both are also very readable.

 

Both books tackle a number of key issues related to maternal caregiving.  For example, Freitag carefully unpacks the unrealistic expectations heaped upon mothers raising very complex children and explores medicine’s culpability.  She argues that the ability to save infants without seriously considering the challenges to parents and family creates complex ethical issues that have been largely ignored by the medical establishment.  It is no secret I agree with her.

 

Landsman opens with a discussion of the intense pressure placed upon women to “grow” the perfect baby and the resulting blame implicitly and explicitly launched at mothers who have a baby diagnosed with a disability.  Landsman, drawing upon extensive interviews with mothers, shares stories of mothers who critiqued every mouthful, decision, and action during their pregnancy, as well as their decisions during their child’s early years.  Mothers worried that it was something they had done that caused their child’s impairment.  Their guilt was palpable.  Both books critique the blame heaped upon mothers, first for birthing a child with a disability, and later for ultimately being unable to care for that child.

 

I can vividly remember many examples of  mommy blame launched in my direction.  It started in the NICU.  For the early days of Matthew’s hospital stay he remained on life support at MUMC.  But as he stabilized he was transferred to a “step-down” unit at a nearby, inner-city hospital.  It was there that I had my first experience with blame.  While at MUMC I regularly read Matthew’s medical chart.  Many specialists joked that they should just hand me a pen and noted there was a section for occupational therapists in the file.  I could write my contributions there.  The team understood that part of my coping involved trying to understand what was happening.  Reading a medical chart was part of that coping, particularly since I spoke fairly fluent medical-speak.  So when we arrived at the step-down unit I picked up Matthew’s chart and proceeded to begin reading the transfer note.  The nurse in the room freaked.  She indicated that under no circumstances could I read Matthew’s file.  This, of course, is not true and denying access could actually be grounds for professional misconduct for a regulated health professional.  She became incensed when I pointed this out.  She argued that mothers could NOT read the file and I would need a lawyer to obtain access.  She became really pissed off when I pointed to my lawyer husband.  What if I was an abuser and my infant’s injuries were caused by my actions, she demanded.  How could they effectively document their care if they worried I might read their words? We were barely into the second week of Matthew’s life and my hypothetical role in his injuries was already on the forefront of a nurse’s conscience.  The fact that my son had never been outside of an NICU at this point of his life, and that his injuries were actually caused by a physician, was an irony lost on the nurse.

 

Later as I struggled to breast feed my son who would eventually end up with a feeding tube I had a nurse tell me that me that not only could every baby nurse, but that nursing could change brain chemistry and structure!  Wasn’t neural plasticity a wonderful thing she asserted. It could create new pathways in an injured brain since the baby was so young and the brain not yet formed.  As an OT I knew what neural plasticity was, and I hoped like hell it would work its magic for my son as I struggled to get Matthew to latch.  I lived through weeks of breastfeeding hell before finally giving up and purchasing bottles.  I felt like an utter failure.  If every baby could breastfeed Matthew’s inability to do so must be my fault.  Because of my failure to breastfeed he would not experience this magical benefit of neural plasticity that might rewire his injured brain.  His lack of recovery could probably be linked to my inability to feed my son like every other “good” mother.  To this day I still harbour strong anger about this particular mommy blame game.

 

Over the years these messages have continued with well-meaning individuals offering advice that suggested that if I only changed a certain aspect of my parenting, caregiving, therapy regime, medical care, or faith/prayer life, Matthew would thrive (the fact that disability is seen as lack of thriving is fodder for another post).  The constant feedback that I somehow had/have the power to change Matthew’s profound and complex disabilities, or that I might have been the cause of his challenges, has been a regular part of my parenting journey, and even to this day periodically pops up.

 

The truth is that most parents are the reason their children with disabilities are living full, rich, and meaningful lives, rather than the cause of their child’s disability.   Life isn’t fair and sometimes things just happen.   It would be nice if these messages worked their way into our collective narrative.

 

 

 

 

 

 

 

Back-to-school Madness.

I am a morning person yet I hate mornings.

 

Today like many across the country our family returned to school. You’d think with only one child in his final year of high school that mornings would be fairly straight forward.  These days we are a family of adults, after all.  But yet this morning by about 7am I was ready to throw the towel in on the day and try again tomorrow.

 

The first contributor to our morning chaos is the fact that we have shifted our shared-care arrangement for Matthew.  In the past he, ostensibly, spent his weeks at the group home and alternating weekends at home with us.  While in theory this sounded wonderful it actually created a plethora of problems.  Organizing intermittent weekend care proved challenging.  I had many fantasies about mom and Matthew outings on weekends that he was often too tired to enjoy.  As a result I often spent time on my weekends at home unable to enjoy either family, or Matthew-driven, activities.   Since Matthew’s  many mid-week activities are organized in our neck of the woods he spent most weeknights at home.  As a result our evening caregiver was often running him back to his group home only to sleep.  It created a very fragmented care schedule that often led to communication breakdown that at times compromised Matthew’s care.   By the spring we had decided to shift our arrangement and as of today Matthew will spend weekdays at home and weekends at his group home.  Officially he has a full-time bed at the Lodge, and I expect someday he will actually occupy it full-time, but for the moment we just aren’t there yet and this strategy remains the best option for all of us.

 

These days I am only officially responsible for Matthew’s overnight care, and since he no longer requires nighttime tube feedings this task shouldn’t be too onerous.  The rest of his weekdays involve a finely tuned rotation of nursing, day program, and evening activities/support, and all this care allows me to have relatively uncluttered days to pursue my own interests.  To be sure this is a rare gift for parents responsible for complex care children of any age and something I do not take for granted.

 

So this morning should have been seamless.  It wasn’t.  I suppose it all started when I got out of the shower only to realize my 17-year old son had seconded my blow-dryer for his back-to-school morning preparations. He is a senior after all.   If you see me today that is why my hair is a right, hot mess.  And then the nurse walked through the doors at 7am and the dogs, having seemingly forgotten that we have nurses regularly, decided to announce to most of Waterloo that we had a visitor.  This might have been fine if my son and husband hadn’t started yelling at the dogs to quiet down, thus drowning out the dogs with their own voices.  The cacophony was impressive and was enough to make my inner introvert long for my now-empty summer cottage.  And then the nurse ran into the kitchen to let me know that the group home hadn’t sent home all of Matthew’s medications and in fact we were missing the most important one.  CRAP.  This conversation happened, of course, while my husband was trying to get my attention to talk about car-pooling kids to and from school today.  I could keep going, but you get the idea.

 

The upshot of all this is that while I no longer change Matthew diapers (while I actually I do – multiple times last night – bratty kid =)), or provide most of his direct care, I am still the chief decision maker and advocate for my now adult, complex care child.  My job description is clearly changing, but as Matthew’s mom I still have a fairly demanding job.

 
And I still hate mornings.