Leaning In. Walking Away.

Sheryl Sandberg, CEO of Facebook and author of Lean In: Woman, Work, and the Will to Lead is in the news these days after she posted a lengthy Mother’s Day article on Facebook.  In her post she shared that in Lean In she might have missed a few key points. Specifically, on the one year anniversary of her husband’s death, she wrote “I did not quite get it.  I did not really get how hard it is to succeed at work when you are overwhelmed at home”.

I need to start this blog post by confessing that I didn’t read Sheryl Sandberg’s book which is unusual.  I read a lot. And hers is the sort of book I often make the effort to read.  But Sandberg’s book promised to annoy me so I avoided it.  Reviews suggested it was a book about how successful women could become more successful by maximizing the advantages they already had. I also got the sense that the less than subtle message the book might offer was that if you weren’t as successful as you had hoped then you probably only had yourself to blame.  Because, you know, life is fair and we all have the same opportunities and advantages.  Whatever.  As an extreme caregiver who has spent years grieving the loss of my career and professional identity I figured her book would either reduce me to tears, or piss me off sufficiently that I would want to set it on fire.  My husband gets antsy about lit candles, I hate to think of how he’d respond to a book burning.

I avoided Sandberg’s book because it appeared to be about the succesful life that I had wanted.  I had spent my early adult years doing everything I was supposed to do to be successful.  And while I never aspired to be the CEO of Facebook or anything like that, I did have some lofty goals and dreams. Until the proverbial crap hit the fan things seemed to be going tickety-boo.  I was doing all the right things.  I had pursued advanced education.  I had accepted rewarding job opportunities.  I married a great guy who would support all my dreams.  I had fantastic child care following the birth of my first child.  But then a doctor made a mistake during my son’s delivery and the life I had thought I would have – that I had planned to have – came to a screeching halt. And unlike what Sandberg’s book might suggest, that derailment was completely out of my control.

Sadly, I didn’t get it right away.   I spent several years trying to continue on the path that I had chosen.  I enrolled in a doctoral program in the health sciences.  I spoke at conferences and taught university and college lectures.  I worked part time.  And it was all too overwhelming. I felt I did nothing well because I was far too overextended. I was juggling a million balls and it was  just a matter of time until everything came crashing on my head.

Something had to give.  I walked away from doctoral work.  I quit my job. I resigned from my regulatory college.  I spent years where my only identity was that of an extreme caregiver.  It was the best I could do.  It was the only thing I could do.  During those years I loved my family, but often hated my life.  I was simultaneously grateful that we could afford to have me walk away from everything and deal with the crap (literally at times), while being resentful that life had forced me to walk away from what I loved so I could deal with all the crap.

I am grateful for Sandberg’s recent Facebook post.   Her recent post begins to tackle the patriarchal myth that hard work and success naturally go hand in hand.  Her recent post acknowledges that poverty, discrimination, life circumstances, and workplace practices – to name only a few issues  – often conspire against women (and men) to limit their success and curtail their dreams.  Her recent post acknowledges that life isn’t fair and bad stuff happens.
So to Sandberg I would say this.  First, I am truly sorry for your loss.  Really sorry.  However I am both humbled and grateful for your post where you admit that you got it wrong.  Thank you for acknowledging that many of us women are where we are not because we didn’t dream big and didn’t work hard, but because life handed us circumstances that curtailed our dreams and abilities.  Thanks for noting that for some of us “leaning in” might have involved falling on our face.

I find writing this post bittersweet.  On one hand I know that when I am 90 I will be glad that I made decisions that erred on the side of protecting Matthew’s health, my family, and my marriage. I have tried to live in such a way that my regrets will be minimal.  But yet I also know that walking away from my career and dreams hurt.  A lot. I had to let go of a great deal of who I was and who I wanted to be to ensure that the people and relationships I love thrived.  As an extreme caregiver there is no doubt that I alone sometimes got the short end of the stick.  The saintly caregiver martyr myth tells us that this is what caregivers are supposed to do.  We are supposed to sacrifice ourselves and our goals and dreams and never talk about how much it hurt or cost us.

 

I say this all this not to garner pity or congratulations for making the “right” choice.  I don’t feel I had a choice to make.  I say this only to concur with Sandberg’s recent post, and even more importantly, to remind readers that extreme caregivers often give up a great deal to care for their loved ones, including some pretty big stuff, like goals, dreams, and their sense of self.

 

Hearing dissenting voices.

Now I get it.

Last night on Facebook the conversation continued.  As many know,  I have been arguing for compassion for an overwhelmed caregiver/mother who attempted to kill her son with autism.  My point in all of this is that in cases of severe disability and total dependency we will only solve the problem of caregiver violence if we solve the problem of caregiver burden.  Or, as a good friend put it, in cases of extreme caregiving when an overextended parent finally falls apart it would be good for society to stop blaming the parent and starting helping out.  This friend was alway better with words!

I was told that by arguing for compassion for the mother I was saying that there was nothing worse than having autism.

I don’t believe I said that, but I am sorry if that was somehow heard because nothing could be further from the truth.  In fact, I value a world that celebrates diverse abilities and communication styles.  I value world where we are reminded that there can be different ways of experiencing and perceiving that world and I believe that people with autism have much to teach us in that regard if we take the time to listen. I would strongly advocate for the creation of that world and the amplification of autistic voices.

I was reminded that in the autism community some parents are trying to do things to “cure” autism and I think it was this comment that really helped me understand some of the reasons for the vigorous dissent.

I don’t think this hope for a “cure” is isolated to the autism community.  When my son was very small parents were re-mortgaging their homes and lining up to put their kids in hyperbaric oxygen chambers to cure cerebral palsy.  We never chose this option, but knew several who did despite the fact that there was a compelling research study out of McGill University debunking the “therapy”.  In fact, some kids were found to be at risk in hyperbaric oxygen chambers.  Some of the parents I knew were struggling with letting go of the image of the “perfect” child and this therapy offered, to them,  a ray of hope. They would do anything, at any cost.  Me,  I preferred to accept my child for who he was, including cerebral palsy, and to put my time and energy into creating the best life possible for him.

If I am hearing the offered feedback correctly, this is part of the fear among the autism community with the murders of children with disabilities.  Similar to the concerns we are hearing in the assisted death debate, people are concerned that these murders are evidence of a world that believes that death is preferable to disability, and in the autism community, death is specifically preferred to autism.  I would guess that some of the murders of children with disabilities are a result of that thinking, and make no mistake, that breaks my heart.

However as a blogger about extreme caregiving the situations I tend to comment on are situations where the caregiving demands seem to have outpaced what the caregiver could provide and there was little to no help offered to the caregiver.  The overwhelming situation persisted for years and the caregiver lost hope and seemed to think there was no way out other than death.

So when I argue for compassion I am not suggesting that death is preferable to autism, or disability. Not for a nanosecond.  I hear these stories about caregiver violence differently, and to be fair, I hear them from my vantage point as an extreme caregiver.  I hear these stories as saying that to the hopeless caregiver death is preferable to an unsustainable caregiver burden where they know it is just a matter of time until they can no longer care for their loved one.   I hear these stories as saying that the mother knew her child’s health and quality of life was wrapped up in her ability to care and when she could no longer provide that care the situation would become hopeless.  For both of them.  We need to remember that the case I am commenting on was a murder-suicide attempt.  For me, these situations are a symptom of utter desperation to which society failed to respond and then harshly judged. In these cases my heart breaks for both individuals.

I would hasten to add that the Latimer case is different and shouldn’t be thrown in to this discussion since that case involved euthanasia and perceived chronic pain and suffering. Including Latimer in this discussion needlessly complicates the discussion.

So, in the end,  I would agree with the comments offered that we need to value the voices and experiences of people with disabilities who are in the position to share those experiences.   I would hope that as these voices are amplified parents who have only just learned their child will live with a disability, autism included,  will come to understand that disability is not the curse they might imagine for their child.

My only addition to the conversation would be that if we are serious about ending caregiver violence, we also need to listen to the voices of overwhelmed caregivers.  We need to ensure they have the supports they require to continue to offer excellent quality of life to their children with very severe disabilities.  The two issues go hand in hand.  And, we need to ensure that caregivers’ lives don’t become the curse they have imagined, or the hell they have come to know.

 

 

Caregiver Violence: The Conversation Continues

It seems that my posts arguing for compassion for the mother who attempted to kill her autistic son have stirred up some discussion. Last night on Facebook there was a spirited discussion among a handful of parents who are raising kids with disabilities, notably autism. I waded in and was taken to task. While such conversations are often difficult for those of us who passionately support a particular viewpoint, it is good to try to find common ground and tease out our points of dissent. I appreciate such challenges to my thinking. It helps me clarify my ideas, but also forces me to see if there are places of convergence – which I think there are.

One of the parents who disagreed with my points posted an article by the Autistic Self Advocacy Network (ASAN) that can be read via this link.

http://autisticadvocacy.org/2012/04/killing-words/

The gist of the conversation on FB (as I understood it) disagreeing with my call for leniency hinged on two key arguments. First it was argued that by not fully punishing people who harm their profoundly disabled children we risk the safety of children and adults with disabilities. By not punishing parents who harm their disabled children we create a climate where violence towards those with disabilities seems acceptable. Second, it was argued that by offering leniency to extreme caregivers who harm their children we risk creating a hierarchy of value attached to people with disabilities such that the more severe the disability the more acceptable the violence.

I would argue both points. No surprise there.

My final concern about the discussion that ensued last night is linked to the article cited above. The article shuts down all dialogue about caregiver violence by resorting to an emotional guilt trip. It suggests that if we want to talk about the problem we should try to talk to the children who have been murdered. This, of course, is a logical fallacy and shuts down voices of dissent. The death of any child is a tragedy, but by shutting down the conversation about what might have lead to their murder I fail to see how we can identify solutions to solve the real, and I would agree unacceptable, problem of caregiver violence. Shutting down the conversation fails to protect future possible victims of caregiver violence because we haven’t taken time to understand how a parent arrived at a place where violence seemed like an “answer”.

First I need to point out that I strongly agree with one of the key points offered by several participants in the FB conversation who took me to task. We must ensure the safety of our severely disabled children. I just think that the way to do so doesn’t involve harshly punishing extreme caregivers who “snap”. I think the problem is more complex and requires a more nuanced response.

Disability exists on a spectrum. At one end we have people and children who are able-bodied. At the other end we have people with profound disabilities who are totally dependent on 24/7 care to survive. It is a well-researched fact that as you progress along the spectrum the burdens placed on the primary caregiver increase significantly. We also know that, presently, our Canadian society does not provide enough support to caregiving parents at the extreme end of the spectrum. Among caregiving advocates and ethicists these facts are well established.  Extreme caregivers are usually isolated, exhausted, physically and financially overextended,  and experience a range of emotional suffering including clinical depression.

No matter how much we might want to we cannot compare the caregiving burdens of parents at opposite ends of the spectrum. One parent worried that this argument suggested that it became more acceptable to kill or injure children at the extreme ends of the disability spectrum and created a hierarchy of ability/disability. I can see how she might arrive at that conclusion but I don’t see it that way. What this idea of a spectrum does do, I believe, is remind us that as we progress along the spectrum of disability the issue of caregiver burden becomes intimately linked to the increasing complexity of the care needs of the person living with a disability. We cannot separate the two and if we are serious about reducing caregiver violence and promoting the safety of those who live with disabilities we need to simultaneously hear and address the issue of caregiver burnout in a very real and constructive manner.

The Autistic Self Advocacy Network has the popular tagline “Nothing about us without us” across the top of their article that reminds us of the importance of hearing all voices. I agree with that statement. However I worry that conversations about caregiver violence become so concerned about the appearance of justice and the value of a life that we disregard the very clear voices of their overwhelmed extreme caregivers. Killing, or attempting to harm, a beloved child because you are so overwhelmed seems like a pretty loud message to me, and if we are serious about protecting people with disabilities I think we need to try to hear what that caregiver’s voice is trying to say. Part of the problem, of course, is that I am not convinced that our society is all that concerned about the lives of people with disabilities before we hear of their tragic murders. The message society is also sending makes it very clear that we are not particularly concerned about the lives of their overextended parents either

Respite drama and spring holidays

 

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Tomorrow begins the spring holiday where I live.  My family is looking forward to spending time with our extended family and friends.  Because many of the activities we will pursue are not well suited to my son, he will (we hope!) spend a week at a respite facility.  Much as I love him dearly, I know that if I don’t take a break from the care it is just a matter of time until I crash.  Add to that that I firmly believe that my other kids need some time that is not organized around their brother’s needs and respite has been part of our lives for most of Matthew’s life.

A few days ago Matthew spiked a fever throwing the entire March Break into question.  Quite reasonably, respite facilities here won’t accept a child who might be ill.  There are other medically fragile children who cannot afford to be exposed to a potential virus.  The risk is too great.  Viruses can kill children like ours.

Thankfully it was a brief blip and Matthew looks fine. He will head in to respite later today.  However, because his status has been unstable lately it has already had a bit of a domino effect on our holiday plans.  One parent will delay departure to the sunny south by a few days to ensure the kid remains stable.  This parent will also return a bit earlier ensuring that the number of days where both parents are away is minimal.

There seems to be something about Spring Break.  Last year our entire respite admission was cancelled because our respite facility was shut down by public health following a viral GI outbreak.  It meant I missed a flight and provided a week of care without help.

Because that’s the other part to all of this.  When we book respite we cancel all our in-home care supports.  So losing respite not only means our vacation plans are scuttled, but it also means that we are now providing 24/7 care with no assistance.  Our badly needed rest is replaced by extreme care beyond what we normally perform, which is already  pretty extreme.

We are crossing our fingers that all remains well and this holiday will proceed without any more modifications.

This first two weeks of blogging have been more fun that I imagined and I thank everyone in my  “real life” for being supportive and encouraging. I will be taking a blogging break for March Break and will be excited to return on March 21.

Quest and Chaos

11951692_10155970592420247_7930136589957619959_oArthur Frank has written an excellent book called The Wounded Storyteller: Body, Illness, and Ethics.  As an extreme caregiver I have found it to be one of the most helpful books I have ever read.  My son is very visibly disabled which means that people in my community are very quick to jump to conclusions  and form their own narratives about my son and my caregiving.  If I had a dollar for every time someone came over to me offering their interpretation about how meaningful my caregiving journey must be I would be a very rich woman.

VERY RICH INDEED!

People often assume that when I care for my son I see the face of God in our midst, or that I have come to some deep spiritual understanding while caring for one of the most vulnerable members of our society. These stories are pervasive in our community.  For example,  L’Arche founder Jean Vanier, and fellow L’Arche member Henri Nouwen, have written extensively about the deeply spiritual experience of caring for people with significant disabilities.  We’ll talk another time about how their experiences don’t really match a parent’s.  Ten minutes on the internet and you will find all sorts of memes about the deeply meaningful journey of caregiving.  And yes, caring for my sons – all of them, able bodied, and the one with a disability – has been the stuff of some of my most profound spiritual moments.  But more often than not my caregiving journey has been more about being elbow deep in various bodily fluids, half asleep, than it has been about seeing the face of God amid deep spiritual reflection.

As Frank reminds us, we who have grown up with the fix-it medical model, and might I add Disney and Hollywood endings,  have this desperate need to find happy endings everywhere – even when that happy ending is elusive. That means that if we can’t fix the problem, like in the case of severe disability and extreme caregiving, we need to find some other alternate happy ending – like seeing the face of God while caring for the most “vulnerable”.  Frank refers to this need to find a happy ending even in situations where such an ending is not readily apparent as a quest narrative.

Because, you know, how many of us get to see the face of God?  This extreme caregiving stuff must be some rare gift bestowed only on those who are very special.  And, if they are special, then clearly they have what it takes to live that crazy, exhausting, caregiving life.

But there is another narrative Frank talks about – chaos.  Society really doesn’t like the chaos narrative.  It is messy, painful, overwhelming, out-of-control, and very hard to describe. Ask any extreme caregiver to tell you a bit about their story and they will likely talk a whole lot  about chaos. And, for the record, just because we tell a story of chaos and exhaustion doesn’t mean we don’t desperately love our children.  In fact, it is because we love our children that we have allowed our lives to become chaotic and overwhelming.  But you see, people really don’t like when others tell a story of chaos.  In fact, even as I write this blog post I struggle with the need to soften, or qualify, my statements lest some think my honesty somehow means that I don’t unconditionally adore my son.

Listeners will often do anything in their power to shut a chaos narrative down – like telling the caregiver how lucky they are to see the face of God, or how lucky they are to have this deeply spiritual journey of caregiving, or something like that.  Goodness knows we can’t be just honest about the fact that this chronic caregiving often just sucks.

The next time a caregiver talks about how overwhelming their life is do them a favour and don’t search for the “happy moment”.  Make them some tea, sit down, and just listen.  Do not be afraid of their chaos.  Join them, for a time, in their chaotic life and just be present.

 

 

The Mother Saint. NOT!

A few years ago I was a mature student enrolled in a course exploring spirituality and suffering.  As the mother of a medically fragile child, who at the time was quite ill and coping with chronic pain, the course was a rare opportunity to unravel some of my feelings about this journey I was on with my son.  At this stage of my son’s life there was no doubt my son was suffering, and due to the deep connection between mother and child, my concurrent suffering was equally profound.

I was very early for class. The class was not scheduled to start for another thirty minutes and I was passing time sipping my Tim Horton’s coffee outside the classroom distractedly skimming some course reading.  A few minutes later a fellow classmate arrived and we began talking about the day’s lecture topic.  Eventually my classmate asked me what brought me to a class on spirituality and suffering.  Without going in to too much detail I shared that I had a profoundly disabled child with complex medical issues and the class offered a unique opportunity to probe some of my own feelings about God and suffering.

Now I will pause here for a moment.  Many parents who raise very complex children often have society tell them how strong and resilient they are.  We get used to these responses.  They often go something like, “Wow.  I admire you.  You must be amazing”.  I have often described that response as the saints and superhero narrative.  It has often seemed, that without knowing anything about me, people are quick to identify me as some sort of Mother Theresa and create this saintly  story about what I must be like.

My classmate seemed to go one step beyond the standard response of “Wow!”.  My classmate took a deep breath and took one step closer to me.  She looked at me and asked if she could touch me to take part of “my amazing strength and energy”.  I didn’t know what to do as she reached out and began stroking my arm.  It was pretty weird.  And surreal.  I am fairly sure I laughed and said something like, “Strength and energy, if you only knew the truth”.

I personally hate the saints and superheroes narrative our cultures seems to pin on us caregivers.  Superheroes are limitless beings and can move buildings and possess boundless energy.  I assure you I have limits and my energy is starting to wane now that I am in my late forties.  Saints work miracles, a skill I lack completely.

I am not a saint nor am I superhero. I can only wish.  I am human.  I need to sleep.  I can no longer lift my son without risking injury, so forget about lifting those buildings.  I cannot work miracles to relieve his pain, or prevent his illnesses.  On many occasions I have stood by watching him suffer because there was nothing I could do.  I am human.  There is no strength or energy radiating from me.

If I had to share one thing with people who are quick to label me as Mother Theresa it would be that I am SO. VERY.  NOT.  I am the same as you and I am simply doing the best I can because I don’t have any choice in the matter. This is life and I owe it to my son to give it my best shot. Some days it is enough. Some days my best is completely lacking. Often I am, and have been, overwhelmed and exhausted and absolutely certain that this life is way more than I could ever handle. When you share with me that I am uniquely strong or special I am often left with feelings of inadequacy and shame because I know it is not true. Further, I feel that these comments place me in a situation where I am seemingly not allowed to have limits or boundaries, the former I assure you I have and the latter I desperately need.

Please see me for who I am.  A very tired human being who would love your support and friendship, not your idolizing.