A doctor struggles to navigate the health system for his son
By Louise Kinross
Shane Neilson describes himself as a mad/autistic poet, physician and scholar. Saving is his memoir about how he found himself on the receiving end of care when his son developed intractable seizures and his daughter was diagnosed with depression. You might think being a doctor would be an advantage. But he soon found himself feeling helpless in the Ontario health system, whether it was racing his son Kazuo (Kaz) to the hospital after 15 seizures, only to be told to "take a seat," or learning Kaz will wait a year for an MRI to rule out a brain tumour, by which time it may be inoperable. Saving also graphically recounts Shane's experiences with hallucinations and suicide attempts related to his bipolar disorder.
BLOOM: You write about clinicians who are a "People Who Care." Particularly as a parent, what kind of care empowers families?
Shane Neilson: The qualities of People Who Care, whether it's a doctor or any health-care team member, are simple: kind of like someone who isn't a doctor but who is a friend. I know that's a high bar that pushes against the boundaries of professionalism, and I recognize it's a tricky balance for practitioners.
They seem to care, and you can tell over time. You can't fake caring well over time.
I also define caring as conscientiousness and curiosity—rather than closing things off out of a concern for time—and gentleness when examining patients. When patients start to tell their story listening is key. Ill children constitute a very difficult circumstance, and the onus is on people who take care of those kids to listen, because it's hard for parents to feel heard out in the community.
'Normies'—normal parents who don't have these children—will never understand. They will understand with a plastic empathy: 'This must be so hard, so difficult.' But they don't understand the work and the terror. They will extend platitudes that sometimes feel very condescending and not very empathic.
If your child has a chronic, enduring illness that causes behavioural challenges, sharing about it in general life often results in blame on the part of the parent. Not only will people impute some sort of negativity to my parenting and culpability, but they'll characterize my sharing as complaining about him, as if I'm insulting him, as if he needs defending. My experience gets weaponized.
BLOOM: There's one medical visit in your book where the specialist keeps pronouncing your son's name incorrectly as 'Kazoo.' You and your wife keep correcting him, and he fails to get it right.
Shane Neilson: There was a racialized element to that of course because my wife Janet is half Japanese and Kaz's name is unusual to a white North American tongue. But that was meant to be emblematic of a system that is uncaring itself.
The biggest problem, and the one that's endemic to all aspects of care in Canada...is time itself. The amount of time someone has to give to ill people, to parents of ill children, is challenged by the industrialized, socialized health-care system. Physicians are tasked with the impossible. They can't possibly see all the people in the time that's allotted. They're double and triple booked. They've got responsibility on wards, they get contacted while they're seeing patients, and they have appointments interrupted.
If you're a parent to a disabled child the doctor has no time. It's in their bodies, in the way they come in the door, the way they leave. They're trying to close the appointment off all the time. They don't want to answer questions.
BLOOM: Yes, in your book you write about the doctor who pushed all of your questions to his nurse. But when the nurse comes in, she doesn't know the answers, and says she'll have to talk to the doctor and get back to you later.
Shane Neilson: You can imagine bringing our child in for the first time with a serious medical problem, that we would have so many questions, worries, fears and concerns, and it's devastating, demoralizing for those questions to go unanswered and to be punted to someone who can't answer them.
BLOOM: At one point as Kaz's condition continues to worsen, you write: 'the uncertainty around Kaz's health is killing me.' What advice would you offer parents whose child was healthy, then acquired a life-threatening condition?
Shane Neilson: I don't have any advice, other than to reflect on the shock and terror. If I have a practical piece, it would be to find that person or people in your life, somebody that is able to listen, someone you can speak with outside of the medical realm. You want someone who will listen to you as a parent without rushing to solve the problem, which is an unsolvable problem.
If you have a doctor who you determine, after many visits, seems disconnected, seems not to care, who isn't a People Who Care, try to see someone else within that department.
BLOOM: That's a great idea, but it can be tricky. I remember being upset about how a surgeon talked about my son and asking to see another surgeon, and the second surgeon made me feel like I had done the unspeakable, and it had to be kept a secret.
Shane Neilson: I got us referred to another tertiary centre and after waiting many months, my son was refused by that centre. You know how these specialists are. They think you're a problem: You were taken care of by another tertiary care practitioner, so what can I offer? They view the parents of an ill child who feels they're not being listened to as a problem. A complainer.
It's only been recently that I connected up with a support group for dads with disabled children and it was tremendously affirming.
When I was going through this experience with my son, social media was in its relative infancy. If it was happening now, I would get online and connect with parent groups for a particular illness and network and share. I have a physician friend whose child has a rare genetic mutation that causes intractable seizures and they were able, in short order, to discover a community of families online. There's the benefit of having your experience affirmed, and there's the benefit of being able to quickly determine if the care your child is receiving is good.
Other parents will immediately get you up to speed in terms of what their child went through, how fast they got tests, and the kind of treatment they got.
BLOOM: What did you learn about our health system from being on the receiving end with Kaz?
Shane Neilson: Working within the system I was already aware of how thinly resourced it is. But I had no idea how relatively worse those resources were for children. Typically society expresses great concern and alarm around the welfare of our children. But in actuality, when you look at the care resources available to them, they're terrible.
One example would be that it would take over a year for my son to get a sedated MRI to rule out a brain tumour.
A second one was our experience with my daughter trying to find a psychiatrist to deal with her expressed wish to die.
The fact I was a doctor didn't make any difference in my children being seen any faster or with any better care. In fact, I found it hurt my experience as a parent. With both children, being a physician made people wary. I felt it changed things, and not for the better. They were threatened by it and defensive.
BLOOM: I remember reading about how it was impossible to access a psychiatrist who could see your daughter on an ongoing basis.
Shane Neilson: It wasn't just that. It was that I couldn't find someone to see her initially, and she was only 11, in a time frame that made any sense whatsoever.
You might think that as a doctor you would be better heard. Friends and even family would say: 'It's so good you're a doctor.' It's presumed there's a benefit to being in the medical community, that your child will get quicker care and that you, as a parent, will be better able to care for your child. That didn't pan out. There really only was one benefit. I was courtesy staff at one of the hospitals where my son was taken and I had an identification badge. So if my son was having seizures, I didn't have to sit at the triage station and beg and wait like all the other people, and wonder if he was alive. I could flash my badge and walk in.
BLOOM: How has your daughter coped with the uncertainty of her brother's condition? Do you think his seizures contributed to her depression?
Shane Neilson: Well, there was an impact for sure. Our attention as parents understandably shifted to try to put out the fire with our son, which meant the parent focus on my daughter suffered. She wasn't getting the same attention and care from my wife and I.
The unpredictability meant activities she was engaged in were all disrupted. She was a profoundly capable child with so many extracurricular activities, and there was disruption in her day to day life. We'd have to go and pick her up at an activity and drive to McMaster because my son needed to get an IV to stop the seizures. I have no doubt that this played into the eventual expression of her mood.
BLOOM: Do you have any advice for parents on supporting siblings? Did your daughter take part in any sibling support groups?
Shane Neilson: I'm laughing, because that sounds like a dream. That wasn't something I knew about. No one told me about that and I'm not sure they existed. I think it could have really prevented a lot of the trouble for my daughter.
I do have an idea for parents. At the time, I stopped practising medicine and focused on the health of my children. We were a two-parent family that could do that. I can't imagine what it would be like with one parent.
Another thing I would do, if I had a time machine, is to create a routine activity I would do with my daughter every day, no matter what happened. Whether it was playing a game or going for a walk. Something meaningful that would demonstrate she was loved.
BLOOM: How has your experience with your children influenced how you work as a doctor now?
Shane Neilson: It's completely changed what I do. I was a family physician in Ontario who was very busy and miserable in a sense because I was one of those doctors faced with an impossible task list that could only be completed by cutting corners and time. I was doing my best within the system to try to connect with people and to try to mitigate the damage the system necessitated, but I didn't want to be the same doctor I complained about.
I changed what I did and I now work in a practice where I have control over my schedule.
BLOOM: You work in Student Health Services at the University of Guelph?
Shane Neilson: Yes. I shifted my practice to primarily address mental health concerns in adolescents and young adults and it's a practice environment where I can budget the amount of time I spend with people. The expectation is that I provide good care for people, with the recognition that mental health patients can't be run through every 10 minutes. I needed to get out of the kind of medicine I was doing.
BLOOM: You were suicidal as a medical resident, in large part because of the abuse you suffered as a child. But did working in a culture that doesn't welcome differences like autism contribute?
Shane Neilson: Yes it did. I'm glad you noticed that. I have another book coming out that addresses that topic in 2025. I discuss, quite frankly, the ableist abuse that is endemic to medicine. I tackle it in an epistemological approach. The way medicine works, the way it functions, thinks, and moves, is on the basis of normal and abnormal. That's it's history.
BLOOM: It's a value system.
Shane Neilson: It thinks in a pathophysiological way. This is normal tissue. This is diseased tissue. It has a tremendous prejudice against abnormal. It only wants normal. It wants to rectify and cure and proceeds according to a curative mentality. It identifies disease and tries to get people back. It's very poor at managing chronic illness.
You can imagine how a group of practitioners who have bought into that mentality, who have no critique of it in their education, who don't hear from disabled people, you can imagine how terrible they are to someone who discloses an illness.
It's not just that philosophy that damns people who work within the system. It's also a kind of neoliberal philosophy that hurts. In order to do the work that is normatively expected of a physician, you need to be superhuman. And if you aren't a superhuman physician who is tremendously efficient and able to meet the requirements and process the patients, then you are a burden on the system. You are a burden to other colleagues who have to do your work. You are a burden to the department you work in.
The philosophy of medicine, the way physicians do their daily work, and the way they identify disease negatively impacts disabled people. It's a culture where people are unwilling to identify their own chronic illness.
I'm a student advisor for medical students at McMaster and I've had students with chronic illness who would never, ever, ever tell the medical faculty, for fear of it negatively impacting their prospects for matching with the residency they want. There's a disincentive to say you have an illness. It accomplishes the task for the system that chronic illness doesn't exist, and you can imagine the resulting prejudice.
BLOOM: It's interesting because medical schools are moving forward with other efforts to diversify their student population, but disability is always the last item on the list.
Shane Neilson: Yes. The racialized physician, the queer physician can actually perform a 'superior' form of medicine by addressing the specific community, so it's in medicine's best interest to diversify, and understandably patients like seeing that representation. You get a different experience and a different experience can provide better care.
Where are the disabled physicians? We can't practice as fast and we may not be available as much, so why would medicine have an incentive for that?
BLOOM: How old is Kaz now and how is he doing?
Shane Neilson: He's 14, and he's intellectually disabled as a result of the misdiagnosis, of the neurologist who didn't care, in my opinion. That lack of care had real implications.
BLOOM: Who is he as a person?
Shane Neilson: He likes to joke around, he loves to banter with adults. He has a girlfriend now, for the first time in his life, in a self-contained classroom. He has difficulty forming friendships, he seems disinterested. I guess he's a chip off the old block. He likes watching YouTube and loves junk food. One of the positive things my wife Janet and I did was get him involved in swimming at a young age, and he's really blossomed there. He's on the Special Olympics for his high school team. He actually got first and third in two meets that he did, including provincials, and he's only in Grade 9, so he has a lot of time to grow.
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