The trouble with rehab 'miracles?' They ignore luck

BLOOM is always looking for parents and professionals to write for us or be interviewed. This piece by occupational therapist Veronika Lukacs came to us because Tom Nantais, a former Holland Bloorview researcher, told me she'd have great insights to share. Thanks Tom and Happy Birthday! Veronika (above) with Russell Winkelaar helped build 62 StopGap ramps to improve access to stores in London, Ont. this weekend. Woo hoo! Louise

By Veronika Lukacs

Every so often I read a local news story about someone's experience in rehab following a devastating physical injury. Nine times out of 10, the story makes me angry.

I'm a newly graduated occupational therapist in a happy relationship with a handsome man named Russell Winkelaar, who sustained a T6 spinal-cord injury at the age of four from a head-on collision with a drunk driver. Russell is paralyzed from the armpits down and uses a manual wheelchair to get around.

Prior to studying OT and meeting Russell, I spent two years looking at the effects of mass media through a master of arts degree at Western University. People are surprised to learn about my media background, but I think it complements occupational therapy practice well.

A person's cultural environment can be a barrier to meeting rehab goals, and it can also shape what kinds of goals a client wishes to pursue. What we see in the media—be it a news article or fictional TV program—gives us clues about the meaning our culture ascribes to life with disability. It also tells us what rehab outcomes the mainstream considers successful. Many of the stories I read are similar and have become cliché.

One popular one goes like this: Young, athletic man in his early 20s breaks his back pursuing an extreme sport. He sustains a spinal cord injury, and doctors tell him his chances of walking again are non-existent to slim. The young man goes through gruelling and intense rehab sessions. Through hard work, personal strength, and perseverance, the young man defies all odds, proves the medical team wrong, and walks again.

I call this the "miracle story." The miracle story often features a person with spinal cord injury, but there are variations that focus on people with congenital disabilities or other acquired disabilities.

The miracle story bothers me because "success" or "overcoming disability" is always attributed to personal strength and willpower. That's great for the person who walks again, but what does it say about the person who doesn't? The miracle story burdens people by making them feel like it's their fault if they don't recover. It suggests that people control their rehab outcome through positive thinking.

The miracle story is misleading. It's usually vague about the type of injury the person sustained. Often times, the individual had better chances of walking again, but the story conveniently left this out.  

Yes, rehab can improve one's chances of re-gaining mobility, but there's also a great deal of luck involved, depending on the type of injury or disability. People don't like acknowledging the luck factor in rehab outcomes. And the reality is that no two people's situations are the same

Unfortunately, I've seen people in rehab programs read these stories, compare their progress and feel they didn't measure up.

In addition to demoralizing patients who won't walk again, the miracle story influences how loved ones support the person. Family members ask me about these stories and share them in hopes of raising the client's spirits and motivation. When this happens, the person who doesn't make a full recovery not only feels their own disappointment, but that they've somehow let their family down.

The miracle story serves as a reminder that our culture sees wheelchair use as undesirable. Walking is the ultimate goal, even though for many people it isn't attainable.

"Everyone wants what's best for their child, but we're stuck in the mentality that getting back to the way you were before is best, as opposed to learning how to adjust," my partner Russell says. "Instead of waiting for the child to walk again, and being depressed for a few years or in denial, parents need to build their child a ramp."

I'd like to see more varied news coverage of the rehab process to balance out the negative effects of the miracle story. Why is this story held up as the ultimate success? What about the person who never walks again, but explores new passions and contributes to their community?

While "being positive" has its place in rehab, a distant hope of returning to an old life may not be beneficial. Full recovery and walking need not be the only goals, and people in rehab need constant reminders that people with disabilities can lead happy, fulfilling lives.

As an occupational therapist, it's difficult to advocate for changes to how the media covers rehab. It's also challenging to balance inspiring hope in clients while remaining realistic about the likely outcomes. In fact, it's often impossible to know for sure what rehab outcomes are realistic!

What we can do is address the problems with these stories with clients and families. We can explain why the experience of one person in a news article is just that—the experience of one person.

Russell says that changing society's views from the ground up is essential. "If close family members won't accept that their loved one won't walk, how is society supposed to?"

People need strategies to help shift their perspective on what it means to live with a disability. That's why peer support from those who have gone through it, and counselling programs that address psychosocial need, are invaluable.

I'd like to see future programs directed specifically at assisting family and friends in how to best support their loved one.  "Disability is always going to exist," Russell says.  "It can happen to anyone and no one wants to talk about it. That's why it's so terrifying. If people could see that having a disability isn't the end of life, they'd be a lot less afraid of it."

Please send your story ideas to lkinross@hollandbloorview.ca

Don't forget to fill out our BLOOM survey for parents, professionals and other readers.

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A son's injury prompts a dad to give back

By Louise Kinross

In 2011 Amir Karmali’s son Kaylum was accidently kicked in the head during a soccer game. The next morning he couldn’t walk and was hospitalized. Two days later doctors said Kaylum had suffered a stroke.

“They said they’d never seen that type of soccer injury before,” Amir recalls. “I spent the next eight hours on top of my son’s bed crying and watching him while he slept.”

Kaylum began intensive therapy as a daypatient at Holland Bloorview. But just when he was improving and about to be discharged, Amir was laid off from his job. “I couldn’t make sense of why this had happened to me. First my son getting injured, then being let go from work. I crashed and experienced a lot of stress, anxiety and depression. I googled ‘how to deal with stress and anxiety’ and a few things came up: meditation, exercise, and helping others. I decided there was a greater purpose for me, that if I didn’t use this experience to help others it would never make sense. I needed to help others make change.”

This week Amir was recognized with other Holland Bloorview staff for his role in engaging parents in the creation of clinical simulations that are used every month to train staff and students in client- and family-centered care. The team received one of Ontario’s 20 Faces of Change awards from The Change Foundation for its “patient engagement and family-focused change in the province’s health care system.”

It reflects the critical role Amir has played in building Holland Bloorview’s family leadership program, which he chose to participate in after his son’s accident as a way of giving back.

The family leadership program gives parents a voice on hospital decision-making bodies, as faculty at education events and as mentors to other parents raising kids with disabilities.

Amir joined as a volunteer on our family advisory committee, then applied for a part-time position managing the family leadership program—a radical departure from his background in the restaurant and corporate world.

“I wanted to help people. I didn’t want to let my son’s experience define us in a negative way. I vowed to use it to be a part of making change at Holland Bloorview. Yes, this happened to my son and my family was thrown a curve ball, but I wanted to hit a home run.”

Amir now works full-time as a family-centred care specialist on Holland Bloorview’s family leadership program, which has over 120 client and parents members.

“Family leadership is about family engagement, empowerment and activation,” he says. “It’s the program that brings the families’ perspective, voice and wants and needs into all of our discussions to ensure our programs and services meet their needs.”

Amir’s background in human resources and education gave him the perfect skills for recruiting and training parents, then matching them with projects in the hospital and ensuring that staff know how to “authentically engage our families. We want to know how our family will make a difference. They’re not there as a rubber stamp. I work with staff to define the purpose and goals of the family role and to set clear expectations.”

Amir says the key to the program’s success is making great matches. “We didn’t place families that we didn’t have. We had no problem saying no, we don’t have a family that matches that skill set or has that experience or has used that service. We also ensure that our families are in the right place to give solution-based feedback to the hospital because the program isn’t about advocacy or a place to vent. We want to learn from their good and not so good experiences.”

Amir says Holland Bloorview has invested in family partnership, hiring him full-time, dedicating other resources and changing the culture of how it makes decisions. “Nothing happens in here without the family’s perspective anymore. Staff come to me for family feedback at the conception of an idea, not when they’re about to launch a program.”

Amir says his son Kaylum has recovered and is playing soccer again and thriving. “I had a great support system of family and friends and I couldn’t have kept going without them.”

He hopes his experience finding a new career path encourages other families to find something positive in the challenges their children face. “I knew there was a bigger purpose. I wanted to do something that was bigger than me.”

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The big picture

By Sandra Joy Stein

The note announcing picture day came home in my son’s school folder.

“Wow,” I thought. “Look how far we’ve come.” The fact that my son attends school at all is quite an accomplishment. It wasn’t until three years after the onset of his autoimmune encephalitis—where the immune system attacks the brain—that we received medical clearance for him to participate in an educational program outside of hospital or home. After considerable work to get all the necessary systems in place, for the first time since his illness he was now attending a barrier-free neighbourhood school, accompanied at all times by a nurse.

I was occasionally thrown by how immediately his entry to school brought many ordinary experiences to our extraordinary lives. He had homework; I received emails from the PTA; I signed permission slips for fieldtrips. And now, it was picture day.

I picked out an outfit, lamenting that on that particular day I did not have the requisite time (or patience) to engage him in the choice. I sent a back-up outfit, should vomit or drool sully my original selection. As the wheelchair lift was raising him onto the bus, I made a request to his nurse. I had recently seen class pictures in which a group of currently able-bodied children stood clustered in the centre of bleachers with the one child who uses a wheelchair positioned to the side of the bleachers, separate from the class. 

I find these images to be unnecessarily isolating to children who work tirelessly to participate in a world that has not been designed for them. I suggested that if the whole class were posed in such a way, with my son off to the side, to please ask for an alternative arrangement. She agreed to raise the issue should it come up.

Mid-day I received a text message from the nurse informing me that for the class picture they took my son out of his wheelchair and his teacher supported his head and torso so he could sit with the rest of the children. That made sense to me since they do take him out of the chair to sit with the other children regularly and his head and trunk control have improved enough over time that with a little input from an adult, he can sit in some of the classroom chairs safely. In the class picture, he would be right beside his peers, a full member of the classroom community.

But then came a second text message: “Solo pic was in his wheelchair but they’re gonna photoshop his headrest so you can’t see it.” I felt a lump in my throat. I had asked that he not be isolated from his peers in the class photo, not that his individual shot omit all traces of his illness. Who thought we would not want to see the headrest of the chair that has become the means for our son to move around in the world? I thought to write back immediately saying: “He uses a wheelchair. It’s fine. Keep it in the pic.” But I often find that taking time after my initial visceral reactions leads to better outcomes. So I waited for my husband to come home to discuss it with him.

My son loves having his picture taken. At times, when his body is behaving in ways that seem beyond his control, I hold up my cell phone to snap a selfie of the two of us. Upon seeing our image on my phone he often focuses, calms, and mugs for the camera. It’s a phenomenon I cannot begin to understand, so I don’t try. I have several pictures of the two of us, looking right at the camera, smiling together as if someone just told us to say cheese. When I post these pictures on Facebook, I comment that they are from the “If you didn’t know you wouldn’t know” files because there is not a visible trace of the three years my son has been battling his disease. 

I am admittedly more likely to post these pictures to Facebook than the ones where the visual effects of the disease—the deviated gaze, the open, drooling mouth, the protruding tongue, the asymmetrical facial expressions, the blank stares—are visible. I have justified this tendency by looking at the postings of friends’ kids whose childhoods have thus far not included disabling diseases. We all post what we believe to be the most attractive shots of our kids, the ones where they look happy and loving and impish and proud…right?

But the thought of any part of his current state being photoshopped out of a professionally taken picture disturbed me. I told my husband the story and he had the same reaction. Our son used to walk on his own. He does not now. He may or may not walk again someday. In the meantime, there is no need to photoshop any aspect of his current state out of visual existence. 

We wouldn’t want the photographers to airbrush in a smile that his facial muscles didn’t authentically produce or paint the missing teeth back into his mouth. In fact, we wouldn’t want them to change a thing about his picture, as it is a snapshot of his incredible life as it is today. There is nothing about the physical imagery of his journey that brings us shame. Quite the opposite, he is a powerful testament to resilience in every image we capture of him with or without the wheelchair, the drool, and the varying facial asymmetries. He is our son and we stand in awe of his beauty.

I texted the nurse that night asking if she happened to get the photographer’s contact information so we could communicate that we do not want any photoshopping of our son’s picture. She informed me that they would be back to the school the following day and she would let them know.

The next day I received a text from her: “Spoke to photographer. He is leaving headrest in.”

I noted how the attention I was able to give to this issue served as yet another indication of just how far we had come. I was not at this moment suctioning the trache he used to have. I wasn’t watching the alarming ICU monitor while a medical team ran in to resuscitate him. I was not making an impossibly hard decision about medications or surgeries. I was asking that the wheelchair headrest captured in my son’s school picture not be photoshopped out, the health equivalent of a first-world problem.

Sandra Joy Stein is an education and leadership consultant, writer and poet who lives in New York City.

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Joy and grief: The dance

By D. Christine Brown

Three years ago today our son Lucas’s high fever and subsequent seizures sent us by ambulance to hospital where he suffered severe brain inflammation.

Thankfully he survived and is recovering nicely, albeit with brain injury that includes significant developmental delay and autism.

Every single day I juggle the intense feelings of joy I have with my son with immeasurable grief and resistance to the difficult reality of parenting him with his acquired disability. I feel left out of the real world of raising children when I see "typical" school kids everywhere.

This last week has been especially trying on my husband and me as parents. Lucas had a few minor "accidents" that required some first-aid attention which triggered Lucas's hospital memories of being poked and prodded.

Three years ago, Lucas was forced to endure endless IV changes and needles for bloodwork, screamed for hours on end with his steroid treatment, would get wound up in his IV from trying to spin out of the discomfort, shrieked in terror as the student eye doctor checked his eyes, and the list of horrors goes on...

So his new coping mechanism to deal with daily routines that involve touching him—such as changing diapers, bathing, brushing teeth or tending to "boo boos"—is to scream at the top of his lungs, kick non-stop and squirm. This means both of us have to physically hold him down while he shrieks in distress.

He transmits such terror in his prolonged screams that I fear the police will show up at our door. I worry that our neighbours must think we’re trying to beat him. Luckily, a script from his current favourite Thomas and Friends song has provided some relief. We tell him "Accidents happen now and again, sometimes just by chance!" 

We both agree that Lucas’s resistance now is more about fear than pain, but it rips at my heart strings nonetheless.

This makes me reflect on our own resistance to Lucas's new life, post brain inflammation.

As parents, I believe we’re resisting the overwhelming responsibility of parenting Lucas after his brain injury—a degree of fear, uncertainty and change that most parents don’t face.

Since leaving Holland Bloorview as inpatients, each week brings new challenges, and we are worn down. We want a break from watching our child suffer needlessly, even if the suffering is sporadic. We want just the good and to leave the bad aside.

Instead of embracing the new and heightened responsibility, we feel burdened by it. We’re so relieved when finally things start to flow again, just to get slapped down by the next cold, fever, scrape, sliver, or trip to the dentist. Every normal life event brings such trauma into Lucas's life. We don’t know if it’s because it sparks memories of his hospitalization, or if it’s his autism or just his personality.  

Lucas’s resistance to our helping him cope with daily activities makes me think about our own resistance to the reality of parenting a child with an acquired disability. And just as his resistance appears counterproductive to us, perhaps fighting our “new normal” makes things harder than they need to be. Reflecting on this three-year-anniversary, it strikes me that life has ups and downs. Ours are just more extreme, in both directions!

I believe my own current favourite Thomas and Friends song says it best: Every Cloud has a Silver Lining

Life is full of surprises, full of ups and downs 

And so to have a silver lining, first there must be cloud 

Every cloud is silver-lined, even when it rains 

So don't get too downhearted, as things are bound to change 

All you've gotta do is wear a smile and you will find 

Your sun will shine 

When you're feeling down it doesn't help to wear a frown 

Never lose hope, you're sure to cope and you can carry on. 

Just as Lucas resists what is uncomfortable, so we resist the discomforts of feeling responsible for Lucas's suffering.

We know we need to accept and take responsibility for our son’s behaviour while he’s at this developmental stage. But we can't allow ourselves to feel responsible for his or anyone else's feelings. We just have to keep doing what's right and show him the path of joy.

We have to be tolerant of life's ups and downs. This will in turn teach Lucas to accept his own ups and downs, and the fact that we can only control how we react to what life throws at us.

As I sit in this restaurant today waiting to pick up my son from school, writing this blog, the two songs that just played couldn't be more timely: That's Amore and L-O-V-E. I feel that it is fate—or my late grandmother, from somewhere in the universe—reminding me that our life with Lucas is all about love. Focusing on the joy and love will get us through the bumps in the road.

Lucas's mom has written for BLOOM previously: I am warrior mom: Hear me cry and roar. Follow Lucas's progress on twitter @LucasRecovers.

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This mom is a lifeline for inpatient parents

In 2006, Lies Ferriman’s 15-year-old son Sasha sustained a severe brain injury while snowboarding. He was in a coma for 10 days and spent seven months at Holland Bloorview in intensive rehab as both an inpatient and outpatient.

Five years later, Lies (above) became a family mentor at the hospital, sharing her firsthand experience with other parents of children who are inpatients.
“Holland Bloorview was like a lifeline when we were here,” Lies says. “So I wanted to give back to other families who are experiencing similar things. I want to impart the fact that you’re in this horrible situation at the moment, but it will get better. It will become a new normal.”
Once a week Lies and a family support specialist invite parents of children who are inpatients to meet in the Family Resource Centre. “We go onto the unit and knock on doors and introduce ourselves and invite them downstairs,” Lies says.
Each meeting is an opportunity to share practical information—like resources and funding available in the community—but also to talk about how families are coping with their child’s rehab and “to listen to any burning issues the parents have,” Lies says.
“There’s a sense of community and a sense that you don’t feel so alone. We try to have the topics very broad so that they address a variety of disabilities and there are nuggets parents can glean that are useful for their child. I’m also amazed with the different cultures and religions we get around the table—it’s like a cross-section of the world. And it’s useful to have all of these different perspectives.”
Lies says parents often feel comfortable confiding their concerns and experiences with a parent who’s walked in similar shoes. “They tend to be completely open with us.”
She says she needed a few years’ distance from her son’s injury before she was ready to support families. “You need to be emotionally ready,” she says. “You need to have some distance where you can look back, and your feelings aren’t still raw.”
Lies says the qualities she brings are an ability to listen to family stories and to share part of her story when it relates to a situation which a parent may bring up. “I’m very passionate about my role. And it’s a reciprocal experience. I get so much out of it.”

Lies has logged over 700 volunteer hours in her work as a Holland Bloorview family leader. In this video she talks about what it's like to cope with a child's acquired disability.

To find out more about our family leadership program, call 416-425-6220, ext. 6420.

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The trove of other mothers

Sandra Stein’s life was upended when her healthy toddler fell ill with an autoimmune encephalitis, a condition in which the immune system attacks the brain, and was hospitalized for 15 months. In this poem, Sandra invokes and honours the many other mothers she has met in hospitals and in cyberspace who every day are caring for children with complex medical needs.


The trove of other mothers
By Sandra Joy Stein

I.
Cradling her son
As his body thrashed
Legs like iron rods.

Try to bend them, honey,
Tell your legs what to do,
They’re your legs.

It will pass, she said, again.
It always passes.

After minutes or hours—she was never sure,
He calmed. Curled. Gazed into the void.

She gazed too.

A giant tear startled her, when it fell on her arm.

Was that his tear or hers?
She preferred not to cry while holding him.

Then another tear, this time most definitely hers
And another.
And another.

He was limp, motionless, breathing, heavy in her arms.

She surrendered.

More tears. Her arm now wet.

He fell asleep. So peaceful. So beautiful. If you didn’t know, you wouldn’t know, she thought. She loved to stare at him while sleeping.

Rest, she said, her palm to his cheek. You rest.

She called out—no, not to some doctor or deity—she called out to the trove of other mothers who at this very moment were, like her, cradling sick babies, and grown babies, and limp and lifeless but very much alive babies.


II.
From behind shadows and tucked away spaces and homes-made-hospitals and hospitals-made-homes
Their forms emerged
Weathered hands, kinked necks, crooked backs, heavy eyes, furrowed brows.
They looked right at her in a way that no one had since…

We see you.
We feel you.
We know you.
We are you.

Like a somber gospel choir they swayed and sang,

No, sister, you have not failed
No, sister, this is not fair
No, sister, you are not alone
Never alone. Never alone.


III.
She blinked back to her sleeping son.
Her arm, now dry, she dug
deeper, yet again.

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I am warrior mom: Hear me cry and roar

By D. Christine Brown

It was the morning of our son Lucas’s 10^th EEG since his acute brain inflammation in September 2011 and subsequent autism diagnosis.

It was cold and raining so we drove to SickKids hospital instead of walking. Lucas’s last EEG was over a year ago and it was still abnormal then on the left side of his brain, only slightly improved from the previous one six months earlier. I vowed that this time, I would accept the results, whatever they were. It is what it is. What will be, will be. I was too scared to get my hopes up high.

After Lucas was sedated and the testing underway, my husband went down to get coffee and breakfast. I watched the computer monitor and burst into tears. The brainwaves looked identical to last year, and with each abnormal spike, the attendant typed in a message marked by a yellow rectangle.

“You aren’t trained in reading EEGs,” my husband reminded me on his return.

The way my husband and I have grieved since our son’s brain injury couldn’t be more different. I have been plagued with sorrow. My husband has shown no reaction. His behaviour hasn’t changed at all. I have been an “extreme caregiver,” to quote author Donna Thomson, and a mother warrior. My husband, on the other hand, seemed to return to leading his normal life.

Back in the hospital in 2011, my mother-in-law assured me that if my husband grieved differently than I did, that was ok. “You don’t have to talk to him about it to find relief,” she said. “You can talk to others. Men don’t like to talk.”

But I never found anyone to talk to. I kept going and did what had to be done to get through each day. We had countless appointments, therapies, school, my own research and my own activities.

I was in a state of adaptation and acceptance. I didn’t realize that I had grief I needed to process.

I was driving my son to his specialized school this past winter and stopped en route for a sandwich. While waiting in line, my son was restless and active, as he usually is, drumming his hands on the sandwich counter and squealing loudly as he enjoyed watching the ceiling fans spin. People looked at us. I implemented my usual distraction techniques to keep his behaviour under control: “Look! Now the lady is making Mama’s sandwich. Oh, look! She’s putting it in the oven!”

When it was my turn to pay, I said “autism” as I pointed down to my son. The middle-aged woman of a Southeast Asian culture gave me a look of sympathy and said with her accent, “I know. I could see”…pause… “I’m sorry.” Fighting back the tears, I responded with a thank you, paid, and led Lucas to the car, where I let the tears drip down my face.

By the next week I had signed myself up for family counselling at Holland Bloorview through the Brain Injury Rehab Unit where we had spent three months of our lives. Family therapist Caron Gan helped me realize that for the first time, post-hospitalization, I had had my feelings validated—by this woman at the sandwich shop. 

I’ve read many accounts of parenting following trauma and it seems to be a common theme that while family and friends are well-meaning and supportive after a tragic event in a child’s life, most want to focus on the positive. They’re unable to just cry along with us. Our society is uncomfortable with tears. I had many upbeat pep talks from people who gave us a ton of encouragement after my son’s injury. And those who focused on the negative focused on “why” this had happened. Why?

People expressed their feelings about what happened to us, but not mine.  This woman in the sandwich shop simply connected with me, a stranger, and validated my reality.

Suddenly it all made sense: why I was completely unable to drop my crying son off at school and leave; why I accompanied him to school until February with only practice “trips to the store” so he could adapt to school without me; why I caved into Lucas’ wants at my own expense, and, ironically, his, unable to set boundaries when he screamed at the door while I showered every morning.

Caron explained that it’s common for parents of survivors of brain injuries and severe illnesses to be over-protective with their recovering children. After all, we are desperate to prevent them from suffering more.

But my hyper-vigilance about Lucas had distracted me from my own feelings of grief about what had happened.

Last year I heard former Canadian Olympian Silken Laumann speak at a BLOOM night about her experience parenting her stepdaughter with autism. I recently had the opportunity to speak with Silken again. She told me that nothing I feel is wrong. I may have intense sadness that this happened to my son or I may be angry and jealous when I see families out and about enjoying activities that we can no longer participate in due to our son’s autism. I may feel guilty that our son’s outcome and prognosis is so positive compared with other families who have suffered similar injuries, or grateful for having our beautiful son still vibrant and with us. These are all simply honest feelings, and they are all okay.

I had just returned home from my first session with Caron, the family therapist, when I opened my email and read this blog by Tali Berman, a developmental play expert: Redefining the meaning of ‘mother warrior!’.

Tali, who works with families of children with autism, suggests that being a warrior mom doesn't mean stuffing your feelings down. “Are parents living their lives with this niggling feeling that it is not okay to stop, fall apart sometimes, cry about the worry/stress/fear and overwhelm?” she writes. “That is what I want to offer to you today. The permission to be with it, to cry, crumble... release.” The timing couldn’t have been more appropriate.

I am a mother warrior! Hear me roar! (And cry!)

As it turns out, our son’s EEG was normal this time. He can be weaned off of his anti-seizure medication at last. Hear an exuberant sigh of relief! We drove home and by now, late morning, the sun had come out. The healing begins.

Caron informed me that my crying during the EEG was anticipatory grieving and I got something else I wanted at the EEG that day. Before the good news about Lucas’s results, I hugged my husband in silence, while crying, and he hugged back. Perhaps my mother-in-law was right.

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One moment, forever changed

Sofia Ali remembers her brother Malik as a “really athletic four-year-old, enthusiastic about learning and the best brother I could ever have. Then everything collapsed.” Malik went in for a 15-minute surgery to remove his tonsils, had unexpected complications and suffered a severe brain injury. He spent more than a year in hospital and lost the ability to speak, walk and use his hands.

Almost 10 years later, Sofia writes about that fateful day.

One moment, forever changed
By Sofia Ali

Early one morning a faded black Honda left the garage of a quiet neighbourhood with two parents in the front seats, an anxious young boy and a stubborn little girl in the back. After dropping the girl off at daycare, the boy felt the butterflies in his stomach as they drove to the hospital with the sun glaring in his face, knowing he was in for a surgery. 

Surgery: a big word for a four year old. As they drew closer and closer to the hospital, he felt his raucous nerves start again. His parents, attempting to ease his nerves, tried to reassure him. There was nothing to be afraid of, they said, a simple 15 minute tonsil surgery.

But he sensed their uneasiness, when walking up the steps to the hospital, during the formal checkup and finally, when he was about to leave. In fact, the roles were reversed. He was the one comforting them, pecking them both on the lips and waving as he said a final “I love you,” disappearing behind a set of double doors.

The sun rose in the East and set in the West. A child was born and an adult died. Daycare began at 8:45 and ended at 6 sharp. These were the insignificant normalities of my life. As a seven year old, routine was my basis. It was within me to expect all the activities and events of the day to be structured by my schedule, to follow my mental guidelines. 

It was bearing this in mind that [I] got worried as I took notice of the once soothing, now irritating, ticking of the clock—the seconds, then the minutes, slipping past the hour. My routine had been disrupted. And it was on this forebodingly sweet sunny summer's day that normalities became abnormalities. That my routine changed. My life, my family's life. Transformed. It was Thursday July 15, 2004.

I was surprised at how late it was, then further startled by the [arrival] of my aunt. She picked me up from daycare, precisely 10 minutes late, and the journey to the unknown desitnation began. With the windows open and the sights of downtown Toronto surrounding me, I was temporarily distracted from the questions at the back of my mind.

Where were we going? Where was my brother? Where were my parents? Twenty minutes later, with a looming light brown building emitting a deeply unsettling feeling, those questions returned, stronger than ever. I read the weathered blue sign atop the high-rise building [and realized it was a hospital].

Curiosity took the better part of my mind and I ignored the implications...of the tears making their way down the glistening eyes of my aunt and the sombre tone of the car drive. What an unexpected destination. A hospital of all places, instead of a park playing soccer or swimming at a pool. Nevertheless, the journey continued hand in hand with my aunt. Up the elevators, to floor 2, all the while reading the signs. The last stating in monochromatic font: ICU Intensive Care Unit.

A sea of faces was waiting; crying, weeping in agony at the loss of a child, not in the literal sense, but worse. Malik, my brother, was there physically, beyond the heavy, metal double doors. But mentally, he was aloof. Unintentionally barricaded from the despair on [this] side.

Familiar, yet distant faces took up the majority of the expanse known as the waiting room. It seemed like the world had stopped, work abruptly ended, jobs unnecessary. Children, daily routines, responsibility itself were secondary to the circumstances of the day. Not one face looked up as I walked down the hall, uncertain of what to expect. Not one.

Hypoxic brain injury, they said. It was uncalled for, a mistake, a tragedy. But that did not matter to me at the time. I just wanted to see my brother. It felt like a bullet being shot direclty between the eyes with a loud boom, a ball being hurled at the face and landing with a thud. Momentary shock followed by excruciating pain and silence. It was written across the faces of the congregation of people—neighbours, family and friends—there to privately mourn their loss until I realized, too late maybe, that it was my loss, too.

The tears streaming down their faces were a raging thunderstorm. I sensed confusion, disbelief. It was looking directly at my parents that brought the greatest emptiness. My father, a man I once imagined could never cry, was doing exactly that. Helpless, uncontrollable sobbing. His active, playful four-year-old son suffering from hypoxic brain injury. How could it be?

And my mother, my dear mother. It looked as if her tears were gone. She had cried them all out and away they went. She was simply staring at the same insipid spot on the wall, numb and melancholic. Until a tearful spasm erupted, once again. Walking into that waiting room was like walking into a bottomless pit, tormented by emotions of hopelessness, remorse and sadness, then realizing you were going nowhere. That you had no final destination.

It was dreadful. The memory is hard to conjure. In fact, I think I purposefully hide all remnants of that day.

I remember hearing conversations among the [multitude] of people in the waiting room: some sitting on couches, others on the floor.

“Doctors say only 24 hours,” I heard one lady say. And from then on, it was a waiting game. Twenty-four hours for what? Was it a deadline? I stayed at the hospital late, later than my bedtime, which I'm ashamed to admit I might have been excited about. Most of that time spent in the arms of my mother, the unexpected shivers of her body still worn on mine long after I left.

I woke up the next morning in a house that was not mine, with my brother not by my side and my parents not in the bedroom next door. My routine had been shattered. 

I should have been excited about having a sleepover at a friend's house, relishing the change of events. But I was grieving. Not only for Malik, I am sad to say, but for normality. I wanted to wake up every morning knowing my brother was in the room across from me, already awake, watching morning cartoons. Knowing that my mom was downstairs in the kitchen making us breakfast and that my dad was by her side. Was I wrong to desire the past of a day ago?

Twenty-four hours passed and another 24 hours with still limited formal understanding on my part of the condition Malik was in. I take it my parents were trying to shelter me from a world I did not know, that of bland walls, needles and sickness. My questions did not receive response and only made them more depressed. I don't think I was fully able to comprehend the extent of the situation I was in. It felt like someone had snatched him away, taken him for good, yet when entering the hospital for those short visits I could still feel his undying presence. He was still there.

The event. It changed me. As a seven year old, I [would] probably describe my brother as annoying, boyish and annoying. I didn't realize what life would be like without him. Without him playing. Without him laughing. I missed the cute sound of his voice and his unconditional love. I missed the fact that he would not be there every day I came home from school, not be there when I was watching television or reading a book. His presence and his aura of childish happiness, I missed.

At the time, I thought that was the end, that my dear brother would be confined to the four walls of his hospital room for life. With the emptiness that had been carved into my family, all senses of hope were gone. Hope, optimism became non-existent and that was our great fault. 

[Throughout] our suffering, our perspective of life changed and our view on the value of the smallest moments, the tiniest memories, reversed. We have learnt to cherish the things we once believed were insignificant. A simple kiss on the cheek, a warm hug. In that [time], our bonds as a family were challenged, our abilities to endure the random, uncharacteristic events of life tested.

My brother is still with us today. He is 12 years old, three months and eight days. He lives in our townhouse with my mom, dad, younger sister and, of course, me. 

He can talk. He cannot walk. He can sit, on a wheelchair. He can eat, with some help. He can drink, with a straw. He can understand the everyday happenings of life to the fullest. 

He can laugh, he can joke. He can scream, he can cry. He can watch TV, he can listen to stories. Abilities that we take for granted daily are dreams come true for him. One would think the events that took place when he was only four years old would have an everlasting effect on his morale, his mentality. But that is not true.

He is not the same little boy who walked cheerfully into that surgery room reassuring his parents "Don't worry, I'll be back in 15 minutes." He is better.

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'Nothing is permanent'

By Sandra Joy Stein

When my son was two years old, he played like most toddlers I’ve known. He built block towers and yelled in frustration when they toppled down. He climbed every structure at our neighborhood park and protested when it was time to leave. He complained when a beloved toy stopped working, broke, or the batteries ran dry. I decided, half-jokingly, that I would try to teach him the Buddhist Law of Impermanence—the notion central to Buddhist teaching that things change and nothing lasts forever. I suggested to my husband and other parents, with a strong dash of humour, that this law would ease our children’s sense of loss or disappointment, which would only intensify as their lives progressed. I do not claim to be a master of Buddhist thought, but it did occur to me that if our children were to know and accept the Law of Impermanence at a young age, it would increase their chances of living happy lives.

When an autoimmune encephalitis rendered my formerly healthy son severely neurologically compromised at two-and-a-half years old, my lighthearted lessons to him became my son’s own profound teachings to me. In two weeks he went from crafting percussion instruments out of anything he could get his hands on to thrashing around in a hospital crib. He went from exclaiming excitedly “Mommy! An upside-down M is a W!” to being non-verbal. He went from riding a two-wheeler with training wheels for miles at a time to being non-ambulatory and tube-fed. We lived in hospitals for 15 months before being discharged to home with near-round-the-clock nursing care, a wheelchair, a supine stander, a bath chair, and a rigorous home-based therapy schedule. Our former lives a distant memory, it was clear: things had changed.  

The type of encephalitis my son has (anti-NMDA receptor autoimmune encephalitis) actually has a good prognosis, with early studies showing the vast majority of those affected making substantial recoveries, some even after several years. Although my son has not yet “turned it around” or “woken up from this,” as his neurologists are wont to say, several of his symptoms (dyskinesias, hypertonia, spasticity) come and go. As soon as we think we’ve adequately addressed some type of pain, discomfort, or spasm, we are on to some new challenge in the bodily consequences of a brain in atypical flux. Many folks with this disease report sudden status changes, moving from perfectly healthy to critically ill and then non-ambulatory to walking and non-verbal to talking. We do not know what to expect every single day. We have to make decisions for the moment we’re in with some regard for the consequences of those decisions on an unpredictable future.

I have never had such an abject lesson in the Law of Impermanence than from my son on his journey through this illness. Everything I ever worked for, saved for, and hoped for changed in a way that laid plain the centrality of the notion that nothing is permanent. I realized that despite my attempts at understanding this concept, and even thoughts of teaching them to my then-healthy son, I had no real grasp of the true nature of impermanence until now. Parts of the teachings were brutal, like living for months in the ICU where, due to severe dysautonomia—a potentially life-threatening symptom of this disease—my son’s heart and breathing would randomly and unexpectedly stop, then resume, often requiring emergency resuscitation. We lived moment-to-moment, never knowing what the day would bring, while bearing witness to 11 families as they lost their children to freak accidents, random (and not-so-random) violence and disease.

Nothing, nothing is permanent.

For a time I found it impossibly hard to be so uncertain of what would happen next. Would he live to see the next day? Would he ever get better? I struggled with the non-linearity of his symptoms and agonized over my sense that he had hit the nadir of his course in this disease (which we were told by several doctors) only to realize that his condition would in fact get worse. As he grew more stable I began to worry about the next phases of his illness, wondered about the effectiveness of rehab and feared the potential for relapse, even prior to approaching any semblance of recovery. I wanted to know when I could reasonably expect improvement and whether my son would walk again, talk again, eat again, laugh again, smile again and play again. I wanted to prepare myself for all of the possible outcomes as if one of them would be the permanent, static conclusion to this total upheaval of our lives. All the possibilities and my inability to prepare for them were a kind of emotional torture. A wise friend suggested that I not try to solve any problems that I didn’t actually yet have. It was time to embrace the notion of impermanence as a mechanism to preserve what might still have remained of my sanity.

It is not an easy lesson to fully absorb and it scrapes against both practical strategies for getting through the day and all the lessons on futuristic thinking taught to me by my parents, professors and profession—to plan, save, schedule, anticipate, predict. When asked if I can attend an event, make an appointment, or get together with a friend, I go through the motions of planning with the knowledge that I do not know whether I will be able to show up. In reality, nobody knows whether they will be able to show up to anything in the future. Because of my son’s teachings, I just happen to know profoundly that I don’t know.

I now approach impermanence as a discipline, like one might approach meditation or yoga (neither at which I am particularly skilled). If I can adjust my orientation to the present moment, take stock of it, and interrupt any tendencies to escape it, I am able to accept the uncertainties inherent in all of our lives, uncertainties that most folks (myself included) prefer to ignore. Without permanence there is no "outcome" of my son’s disease, no before and after, just my son in the moment he is, on his extraordinarily difficult journey. His symptoms change so readily—sometimes his head is oriented to the right, his gaze fixed, his teeth grinding loudly and sometimes his head is in midline, his eyes focused and his jaw at ease. Some days he smiles, most days he does not. Some days he moves his legs. Most days he does not.

While so much has changed and continues to change about my son from a physical standpoint, his essence feels totally intact. He was always compassionate, always a deep thinker, always asking me what I was thankful for, all day every day from what I thought to be a surprising young age. And when I answered "I'm thankful for you!" he would respond "Awww, that's so sweet." He is still that being, locked inside a body he cannot at the moment control.

He has changed the way I interact with everyone and given me a greater ability to see beauty in all forms of humans, particularly those who we think of as disfigured or deformed. I walk through the world differently because of him—I am aware of much more and afraid of much less. I stare down my fear every day and walk that fine line of accepting his current condition and working to maximize his potential for what might be, all while striving to stay firm in the here and now.

Despite my earlier hubris at thinking I could teach my son a Buddhist principle that I had not fully grasped myself, my son is the one who has taught me how to surrender to the fact of impermanence, and how to live fully in the moment. He has taught me how to hang up the phone with the dysfunctional medical supply company (or any of the other pitifully dysfunctional systems that we rely on to get through the day) and to see that he is, at the moment, stable, breathing and peaceful, or thrashing, screaming and in distress. At our most difficult moments, I find great comfort in telling both of us, “It won’t always be like this.” What it will be like, I cannot tell.

Sandra Joy Stein is an education and leadership consultant, writer and poet who lives in New York City.

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Connection with son eases one mom's focus on 'recovery'

By D. Christine Brown

Today is a bittersweet anniversary for us. Two years ago our healthy son Lucas ended up in the intensive-care unit. He was two. He had a very high fever and prolonged seizures, out of the blue. A few days later, he suffered severe brain inflammation. After spending four months in hospital recovering, he’s continued to progress.

Lucas is relearning to talk and is physically active. But since his illness his development has been delayed and last year he was diagnosed with autism. 

The past two years have been a difficult journey for our family. As parents, we’ve focused almost solely on Lucas' recovery. In a sense this assumes a correction of the past—undoing what happened and getting “back on track."

But recently some external events have made me realize that this approach, while useful, is somewhat of an illusion. It won’t serve us going forward. 

First, the New York Times Motherlode blog featured a piece about another mother's experience with brain injury in her son. It sent shivers up my spine and contributed to my shift in thinking.
 

Like us, this mom had a 2-year-old son with high fever and seizures who suffered brain inflammation (within a month of our son’s illness!). But her family’s outcome is very different from ours.

Her son has severe and complex physical disabilities going forward. My heart ached as I pondered how different her focus has been over the past two years, accepting these changes and moving on in her new reality which is less about recovery and more about adaptation.

Then in the news there was this story of horrendous ignorance: a neighbour of a 13-year-old autistic boy sent a letter of hatred to his grandmother, telling her to euthanize the boy because his vocalizations are a nuisance to the neighbourhood.

BLOOM covers this topic often: how people see their own vulnerabilities in the differences of others and it can be too scary to accept.

There’s a song on one of Lucas’ CDs that we’ve all heard: “Whoopee ti yi yo, git along little doggies, It’s your misfortune and none of my own…” The line from this old cowboy tune really struck a chord in me. My husband says “what a mean song” (he really loves dogs) but that’s reality. It’s why the neighbour of the boy with autism, who signed the letter as a mother herself, didn’t stop herself from delivering that letter: It’s your misfortune and none of my own. 

By suggesting the boy was less than human, she had cut herself off from her own humanity.

In thinking about that hate letter, I realized that in describing our son’s experience as one of “recovery,” we were in a way separating ourselves from what we were too frightened to accept. When we talk about recovery, we imply that Lucas’ challenges are temporary, distinguishing him from children like the boy in the New York Times story, who has lifelong disabilities.

But the truth is that we don’t know how Lucas will be affected over time.
 

Sometimes, especially when tired, Lucas can act out. Outsiders may judge his behaviour as hyperactive, dangerous, defiant, disobedient, naughty, unruly, uncontrollable and stemming from a lack of discipline on our part.

In fact, it’s serving a sensory need. But it’s easier for people to make assumptions than to try to understand why a child like ours behaves the way he does.

We feel the eyes of judgment when our son "misbehaves" in public, and even when we're alone at home—even though I don't consider any of his behaviour misbehaving at all. In my mind he’s an innocent and playful child!

Brenda Rothman's recent piece in the Huffington Post fueled this idea, offering me hope and inspiration:

She writes: You were given an instruction manual for a Ford and your child is a Ferrari. So, congratulations! Your child is NOT fundamentally different from other children. You just need the right instruction manual. Parenting your child will be more intense. You'll need more patience and time. Your child will have intense emotions and needs. But he'll also have intense curiosity, drive, determination, desire, persistence and individuality. What you'll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life.

Based on this reasoning, if we just worked hard enough at finding the supports Lucas needed, everything would be okay with our son.

We chose to dive in full hilt. We’ve done occupational therapy, sensory integration, speech and language therapy, movement therapies, naturopathic protocols, therapeutic recreation and more.

We also stumbled across this less popular, but what we feel is most relevant, intervention for children with autism called the Floortime model.

We’ve worked our butts off at getting Lucas the right supports. We haven’t slept, had a social life, or had time to get anything done for ourselves.

My career has been put on hold and we've spent every waking moment making sure that Lucas is safe and stimulated and interacted with.

We’ve chosen to feel small because we depend on our parents financially to get through this phase of our life.

Although every day of our life with him has been more difficult than anything we’ve ever experienced, it’s also been more rewarding, with glorious and tremendously joyful interactions with our precious son. And he's still adorable, energetic, demanding, sweet, gentle, loving, affectionate, bright and curious. It’s been worth every minute.

But now it’s time for us to move forward and forget about what happened to our son as being a misfortune at all. It’s something that happened. Things happen.

I liked what KJ Dell’Antonia wrote in this Motherlode post: “…Some part of us just can’t go to that place where we know that some things in life have to be lived through instead of conquered.”

Having to accept what happened to our son is accepting that we are all vulnerable and impermanent. It eats at our deepest human need—to survive. Anything can happen to us at any moment. We are all fragile and vulnerable to misfortune at every moment. But we can also enjoy connecting with each other at every moment, and this gives our lives great meaning and joy.

Beyond survival, feeling connected with others is every human being’s greatest and deepest need. We yearn to be understood; to feel important and worthy of attention and love among those we interact with. Feeling connected gives us self-confidence and a sense of purpose.

The main therapy we’re choosing for Lucas, the Floortime approach, is all about connecting with our son by following his emotions and interests to facilitate his development. The underlying assumption is that every child has the desire to interact.

In our case, our desire to connect with our son has begun to outweigh our need for “recovery,” or our need to appease people who judge his sometimes disruptive behaviour.

Our focus on recovery was a coping mechanism, one that we are slowly letting go.  

Our hope is that we can continue to provide an environment for Lucas where he’s unconditionally loved and accepted for who he is, and that he’ll always have rich opportunities for connecting with others.

Our psychological journey has been a slow and long road, just like our son’s recovering brain. Both are leading to brighter pastures, vulnerable and impermanent as we are.

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