After deep brain stimulation, 'I can't be happier'

By Louise Kinross

We recently heard from former Bloorview School student Osmond Shen, who wanted to share his experience with deep brain stimulation to treat involuntary movements caused by cerebral palsy. "It's made a huge difference in my body," says Osmond, 20, who enjoys playing Nintendo switch games with his brother Edmond, studying with a tutor, and online shopping. Deep brain stimulation is a surgery where thin wires called electrodes are placed into one or both sides of the brain in areas that control movement. The electrodes are connected by extension wires to a battery-operated device, similar to a pacemaker, placed under the skin below the collarbone. A few weeks after surgery, this device is programmed to interrupt the atypical signalling patterns causing movement problems.

BLOOM: What problem were you hoping deep brain stimulation would treat?

Osmond Shen: To decrease my dystonia, or uncontrolled body movements. Before my surgery, my legs were painfully stuck together all the time. Also, my neck was becoming so stiff and stuck to one side, that it was difficult to turn my head back and around. I experienced lots of pain when my muscles were stiff, and, when you go through constant pain during the night, you [don't] have enough sleep.

BLOOM: Had you tried other treatments?

Osmond Shen: Yes. I had been on an intrathecal baclofen pump since 2005. But even though for the last couple of years I've been on a high dose of this medication, my body was still stiff.

BLOOM: Who suggested deep brain stimulation to you?

Osmond Shen: My baclofen pump doctor at Toronto Rehab referred me to a movement disorder clinic at Toronto Western Hospital.

BLOOM: I thought this surgery was always done while the patient was awake, but that wasn't the case for you, right?

Osmond Shen: No. I wasn't awake during my six-hour procedure, because of my uncontrolled movements.

BLOOM: Was the recovery painful?

Osmond Shen: It wasn't painful, but it was very uncomfortable. I had staples on three parts of my body because, in addition to deep brain stimulation, I had my baclofen pump replaced. The staples were itchy and made me so uncomfortable.

BLOOM: What difference did deep brain stimulation make, in terms of how you feel, or what you can do?

Osmond Shen: First of all, I can turn around my neck easily. Also, I have much less pain in my legs. It's made a big difference since it was turned on. My body has been much more relaxed and flexible. Life is much easier for me now.

BLOOM: Many people would be anxious about having this surgery. Did you do anything in advance to try to help you relax?

Osmond Shen: My parents, my physiotherapist, my neurosurgeon and my family friend were all so positive, and on the same page, and kept encouraging me to go for this procedure. My part was doing research about this technology on the Internet.

BLOOM: Is there anything you aren't happy about with the results?

Osmond Shen: I can't be happier than I am today. The results are what I expected, and my doctor said it usually takes about one year to reach its full result, so I still expect more improvements.

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Doctors' disbelief is a common response to rare disease

By Louise Kinross

Laura Howson-Strong is an occupational therapist at Holland Bloorview who has worked with children with disabilities at two ends of the spectrum: as preschoolers readying for kindergarten at our nursery schools, and as teens preparing for transition to adulthood.

At a Schwartz Rounds last year, Laura shared what it was like to work with our families given her personal experience with rare disease. As a child, Laura had pain that oscillated between her stomach, her chest and her joints. Doctors told her parents she was attention-seeking and “making it up,” she says.

As a young adult her symptoms got worse. She was diagnosed with conversion disorder, “where the physical symptoms are real, but are caused by a reaction to stress or psychological trauma.” It took 11 years, several misdiagnoses and a lot of her own research, before she learned she had a rare connective tissue disease called Ehlers Danlos syndrome. Three years later she was diagnosed with a second condition, mast cell activation syndrome, an immune disease.

“When I heard about the Schwartz Rounds on health-care workers who are also health-care users, it spoke to me,” she says. “I thought: ‘Why don’t I tell people about my diseases and experiences? Why am I hiding, so to speak?’” 

“I realized I was keeping quiet because I had a lot of shame and doubt. In the past, I wasn’t supposed to speak about my symptoms, because they were something I was ‘doing’ to myself. But then I learned this was still happening to others. In 2018, children are still given mental illness diagnoses or going undiagnosed when their bodies are failing them. My story isn't uncommon.”

BLOOM interviewed Laura to learn more about how her personal experiences have informed her work.

BLOOM: What is your current job here?

Laura Howson-Strong: I’m an occupational therapist in experience-based employment programs like Youth@Work, Ready to Work and VolunteerAble. A large focus of my job is helping clients and families identify and build the skilled needed for transition to adulthood. It could be learning about job tasks that you can do and like; speaking to new people; ways to market yourself; and thinking about how you learn and how to ask for accommodations.

I’ve also worked in early learning with children with disabilities from birth to six.

Over time, I’ve heard so many similarities in the goal areas of these two populations. Things like: ‘How do I make friends?’; ‘How do I speak up to ask for help?’; ‘What can I do and what do I enjoy doing?’

BLOOM: What’s the greatest joy of your work with teens?

Laura Howson-Strong: I love being able to be part of successes and solutions. In some cases I’m able to see youth and their families throughout their young adulthood, so I’m able to see the change and the progress over time.

BLOOM: Why is Rare Disease Day on Feb. 28 important?

Laura Howson-Strong: First and foremost, there aren't enough of us to represent ourselves, and many rare diseases go undiagnosed. So we need allies. We need people and communities and organizations to spread the word to bring awareness to these diseases, and to have decision-makers better understand their impact. We need help to advocate for increased funding, knowledge, research, treatment, and possibly cures. I’ve learned that the majority of the rare diseases out there don’t have cures.

For me, I worry that in light of the incredible medical advances going on, a cure for my disease may exist in a cure for another disease. But it might never come to fruition for me, because the right people aren't aware that my disease exists.

Rare Disease day is also an opportunity to celebrate our journeys and uniqueness and beauty and strength. We’re not made to fit moulds, and that should be recognized and honoured.

It's also important because we need to end the unnecessarily complex and sometimes damaging diagnostic processes people experience. Mental illness diagnoses should not be a common step of your medical pathway to getting a rare disease diagnosis.

Right now, denial of symptoms, of services, and of the support we so desperately need within the healthcare system, is a common thread in many of our stories.

BLOOM: What is your diagnosis and how does it affect you on a daily basis?

Laura Howson-Strong: My primary diagnosis is Ehlers Danlos syndrome (EDS). EDS is varied, individual and multi-systemic. It’s a genetic connective tissue disorder with symptoms that range from mild to debilitating. Many of our symptoms have diagnoses of their own.

It affects me daily, all day, every day. The main issues I deal with are chronic pain, joint dislocations, fatigue, gastrointestinal problems and nerve damage.

BLOOM: How do you manage?

Laura Howson-Strong: Daily medications. A lot of them. I also use braces. Some constantly and others at different times of the day. I have ankle-foot orthoses, a neck brace, hip braces, finger and wrist braces. I use a cane for difficult days, long distances and bad weather. 

It's different for each person with EDS, but I manage pain and fatigue through medications, joint injections and positioning—the way I move my body, the way I sit and the way I reposition myself. I set up my days to have a variety of movement and rest activities. I’ve tried a lot of rehab and therapies, and I’ve stuck with swimming therapy and physiotherapy. I’m going to a private specialty EDS clinic in Ohio this year to pay for medical services.

BLOOM: Is there not one in Toronto?

Laura Howson-Strong: Luckily, a new rare disease clinic opened through the University Health Network last year, and I'm on a long wait list for it. At this time, it's a diagnostic clinic only. I look forward to eventually connecting with doctors familiar with EDS through this clinic.

I'll be paying thousands of dollars to go for treatment in Ohio to address loose joints in my neck that dislocate easily. It will likely include Botox, bracing and therapy done by a doctor.

BLOOM: What is your hope for the trip?

Laura Howson-Strong: Pain reduction, better treatment of the symptoms, more EDS-specific knowledge and validation of my symptoms.

BLOOM: You also have an immune disorder. How does that affect you?

Laura Howson-Strong: I have an overactive response to allergens, but it's difficult to determine what allergens because the response is not consistent. It could be clothes, food, the environment or my own heat and sweat. I get symptoms of anaphylaxis such as rashes, swelling, throat closure and difficulty breathing. I take medication to decrease the response, rest, and sometimes go to the hospital. Mast cell activation syndrome can be connected to EDS, but the connection isn't fully understood.

BLOOM: How does having a rare disease add value to your work?

Laura Howson-Strong: I was an occupational therapist first, and a patient second. When I was at school, I had no diagnosis.

When I entered the health-care system as an occupational therapist, I was shocked at how much I struggled to navigate and to speak up. I was educated in health care, yet I became lost and overwhelmed.

When I was diagnosed with conversion disorder, I was shut down by doctors. They would say ‘the basis of this is psychological or psychiatric, and I don’t have the services.’ They refused to refer me on to specialty clinics for the physical symptoms I had.

I lived a few years of my life thinking I was causing this myself. I began to hide the symptoms, the pain, and I just didn’t talk about it. This interview is going to be the first time that many of my friends and family hear that I was diagnosed with a rare disorder, let alone conversion disorder.

One way my experience influences my work is that I really think about how we value the voices of youth. How do we include them in decision-making, and in appropriately understanding their treatment plan and being part of their plan?

I think we're trying hard to do that as an organization, but I still think we have a ways to go to make sure children have their voices and concerns heard during appointments, and have opportunities to get their questions answered in the health system overall.

BLOOM: How do your own experiences with pain and disability inform your work?

Laura Howson-Strong: As a patient, I was so surprised to learn how much the medical system expects of patients and caregivers: to be a system navigator, a doctor liaison, an organizer, a nutritionist, a therapist, a record-keeper. I learned it’s exhausting and sometimes almost impossible.

Today I can better see how much pressure we put on parents to do everything—to keep connected, to be a parent, to be a therapist, to be a doctor, to manage all the appointments, to manage all of the paperwork.

When is there time for parents to self-reflect, network, participate in self-care, or just have fun?

It makes me look at what I expect from families in sessions, and to cut down on the number of recommendations and goals I have. When I set goals with families now, they have to work into their everyday lives and be important in the here and now.

BLOOM: What’s the difference between what’s ideal and what’s doable?

Laura Howson-Strong: We have a tendency within the medical model to want to fix problems, so we give lots of recommendations. We give them with good intentions, but we don’t understand how much it might take for the family to do just one of those things within the day.

With rare diseases and disabilities, you see a lot of different doctors and therapists. You’re given a whole bunch of goals and treatment plans from each one, and the amount of work combined is often overwhelming.

I’m very aware of the guilt clients and parents can have when they don’t accomplish what they were supposed to do. Am I doing everything possible? Should I be doing more?

BLOOM: How have your thoughts about disability evolved?

Laura Howson-Strong: For the last decade I’ve had a firsthand look at how deep the roots of stigma around disability are—the ways people judge those with visible and invisible disabilities.

My disability is primarily invisible. I’m still getting used to being yelled at by strangers for parking in the accessible parking spot. Or trying to figure out what to say to people when they ask: ‘Does your husband regret marrying you?’

I’ve had the experience of crossing the street in downtown Toronto and falling, and I was surrounded by 15 people, and not a single person stopped to help me up. I had to call out ‘Are you kidding me?  have an invisible disability and I need someone’s help.’

I thought I had an understanding of the stigma of disability. But until I became disabled more visibly, I had no idea.

It makes me consider how I build the skills clients and families will need in the health-care system, and in bigger-picture society. Things like advocacy, decision-making, speaking up and resilience.

BLOOM: Do you have any personal advice for youth who feel stigmatized?

Laura Howson-Strong: Trust yourself. Trust your instincts and keep trying. Remember that it’s okay to not be okay sometimes.

Remember that you're not alone. Growing up thinking 'Am I sick, am I not sick?' and then on the other side, having two rare diseases, I've often thought 'Oh gosh. I'm so alone.' But it's important to remember that even if people aren't going through the same thing, there are so many commonalities, so many ways we can come together as a community and group to support each other emotionally.

One of the best things for me is saying 'It is what it is.' I can't control the outcomes, but I can control how I react to it.

We can’t do the health system alone. We need to reach out for help.

BLOOM: How can you find support when your condition is rare?

Laura Howson-Strong: Consider looking up online support groups and communities for disability and rare disease. You could also ask for help from other people in your life, like family, friends, teachers or your doctors or clinicians. There are great youth mentors here at Holland Bloorview. They may not have the same rare disease diagnosis, but they do have firsthand experiences of disability within the health system and the community.

BLOOM: What could we do as an organization to better support families affected by rare disease?

Laura Howson-Strong: At a basic level I wish there was more acknowledgement of rare disease, and access to services. In the health-care system, having a rare disease can restrict your access to clinics, because we don’t fit into the clinic criteria or share the same diagnoses as typical patients. I’d like to see a Holland Bloorview support group or information night for families affected by rare disease.

BLOOM: I would imagine we have hundreds, if not more, families living with rare disease. Jennifer Brea’s film Unrest is creating a lot of buzz about people with rare, chronic illness who are dismissed as being stressed out or mentally ill. What was it like for you to watch that film?

Laura Howson-Strong: Because I haven’t spoken out about my journey through mental illness to rare disease, it was really interesting and validating to hear my own experiences through someone else’s words and thoughts. It really made me feel like I’m not alone in this process, even if the end result is not the same diagnosis. There’s still so much support and love and community that we can give and provide to one another.

BLOOM: There’s a scene in the film Unrest where Jennifer Brea’s husband talks about how their life can feel quite normal and good when they’re on their own. But when they go out into the world, people are constantly reminding them that they aren’t able to do things that their peers are doing.

Laura Howson-Strong: One of the hardest things for me is when people look in and feel sorry for me. Or feel my life could be better. Or feel this can only be a negative thing in your life. Having a rare disorder absolutely turns your life upside down, and things that you wanted, or had planned for, don’t always turn out the way you hoped.

But for every difficult memory I have of my health or the health system, I can think of incredibly positive or funny experiences. Some of my greatest assets have been developed because of my rare disease—like my strength and self-determination, to the point of stubbornness, and my ability to problem-solve. I wouldn’t be the person I am today without the difficulties and challenges I’ve faced.

My disease is progressive. Knowing I may not look the same way in five or 10 years impacts my goals, and what I truly want to spend my time doing. What ultimately matters is I have a family and friends who I love, and I do things in my day that are important and meaningful to me.

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Canada's first inhospital pain program turns girl's life around

By Megan Jones

Staci Berman has been in pain for two years. It started at a basketball tournament in April of 2014. As Staci, then 11 years old, ran up the court with the ball, she was pushed from behind. All of her weight went to her right leg, and she suddenly felt a jolt—a harsh, shooting pain that travelled up her leg to her hip.

She and her family soon realized that the injury wasn’t a typical one. In the weeks that followed, the Thornhill pre-teen’s pain only worsened, and three months later, the discomfort had become unbearable.

Over the next year and a half, Staci and her mother, Shelley Berman, tried everything: x-rays, an MRI, acupuncture, osteopathy, massage therapy. Each expert seemed to have a different theory about what caused the pain. “Nothing was really helping me at all,” Staci says. “And I kept getting worse.”

That first year, Staci missed 23 days of school. Once an active student, she was forced to give up the extracurricular activities she loved: hockey, volleyball, badminton, hip-hop dancing. Her friendships began to suffer and she became depressed.

“Every time a treatment didn’t work I would become more negative,” Staci says. “I cried a lot…I started to lose hope for recovery.”

There were some moments of hopefulness. Staci attended a pediatric pain management group at the Hospital for Sick Children in Toronto. The program helped her to feel less isolated by introducing her to others in her position. It also taught her valuable coping skills. Still, her pain was relentless.

By July, 2015, the family was desperate. “We felt that nothing in the system could help us,” Shelley says. “Staci didn’t want any more appointments. She was refusing to see any more doctors.”

Shelley had heard about a children’s hospital in Philadelphia with a highly reputable pediatric pain program. Defeated, stressed and exhausted, she began preparing to send her child to the U.S. for treatment. Then, she got a phone call from SickKids.

The doctors there told Shelley that Staci was eligible for a new initiative at Holland Bloorview, the Get Up and Go Persistent Pain Program. That same day, Staci and her mother travelled to SickKids to meet with Lori Palozzi, a nurse practitioner who helped develop Get Up and Go.

Immediately, the pair knew it was something they wanted to try. The program sounded holistic, Shelley says, and she was impressed by the clinicians' passion for their work.

“As Lori told me about the program, it gave me hope,” Staci says. “I knew it wouldn't get rid of my pain entirely, but I felt like maybe I could conquer it.” By November 2015, Staci was admitted as a patient.

***

The Get Up and Go Persistent Pain service was launched in September 2015, and is the first inpatient pain rehabilitation program for youth in Canada. The initiative, a partnership between SickKids and Holland Bloorview, treats children between the ages of 12 and 18 who have chronic pain or pain-related disabilities.

Patients are referred by their Ontario pain clinics, and are typically children like Staci, whose discomfort interferes with sleep, relationships and school attendance.

Get Up and Go, which is funded through the Ministry of Health and Long-Term Care, lasts four weeks. During the first two, children live at Holland Bloorview as inpatients. They then attend a day program for the remaining half. Two kids are admitted in each session and, so far, 16 patients have been treated.

Led by a staff of nine, Get Up and Go takes a multidisciplinary approach to pain management—it draws on psychology, psychiatry, social work, therapeutic recreation, occupational therapy and physiotherapy.

This well roundedness, says nurse practitioner Lori, is part of what makes it effective. “Chronic pain is a complex problem that requires a long-term solution,” she says. “There’s no easy fix.”

At Get Up and Go, things are highly structured, and that’s deliberate, Lori says.

Due to their pain, many youth miss school, give up the activities they love and struggle to sleep. Over time this creates a vicious cycle: little sleep and exercise wear the body down and intensify the pain, which leads children to shut down further. “The less you think you are capable of, the less you do,” says Get Up and Go physiotherapist Lisa Engle.

 “We know that when a child’s function is increased, their pain will eventually improve,” Lori says.

In hospital, the day begins at 7 a.m. when patients get up for breakfast. Children go to Holland Bloorview’s onsite school, work out with a physiotherapist in the gym or pool, go to counselling, and participate in other kinds of recreation. Visiting hours are between 4 and 6 p.m. By 9, all electronics are shut off to foster healthy sleep habits. An hour later, it’s lights out.

In addition to building their endurance and strength through physical therapy, youth learn techniques to cope with pain like deep breathing, visualization and mindfulness meditation. They also learn how to pace and organize their days to conserve energy, and to keep a sleep diary that promotes a regular bedtime and wake-up.

Visiting hours are limited to 4 to 6 p.m. each day. This, too, was done on purpose. Lori says that parents often inadvertently contribute to habits that prolong their children’s pain—letting them stay home from school, for example, or allowing them to dwell on their discomfort, rather than reframing the discussion to help them manage.

“They may be excessively emotional in response to their child’s pain and support the child’s tendency to avoid tasks and responsibilities at home,” Lori says. “The biggest challenge for families in our program is to foster independence in their child.”

Parents attend two group sessions a week where they discuss the same topics their kids are learning about: sleep, coping techniques and what they can do to help or hinder their child. For example, one thing they have to avoid is jumping in to do everything for their child at home. 

Parents also learn how their child’s pain can trigger their own feelings—such as irritability, anger and anxiety—and how to take care of themselves.

Parents receive individual counselling with a social worker, something that Shelley says she found incredibly valuable. She says that often, parents become so concerned with their children’s care, they forget that they also have needs.

“The sessions were a time for my counsellor to answer any questions that I had about how I felt personally,” she says. “That for me was so important. Each time I left her office, I wanted to hug her.”

While the program is still in its infancy, Lori says that patients and parents have provided mostly positive feedback during exit surveys. In the future, she hopes the program will continue to expand. She’d also like to increase the staff’s ability to track children’s progress through their pain clinics after they’re discharged. (While Get Up and Go helps kids to form a discharge plan, longer-term follow ups aren’t currently part of their mandate.)

***

Five months after completing Get Up and Go, Staci says she still feels the effects. As she progressed through her therapy, the pre-teen felt herself get stronger while her abilities improved—and that hasn’t gone away. Today, she’s back to playing volleyball and basketball, as well as running cross-country. She still feels pain, but while it used to be constant, these days her discomfort normally only spikes during intense physical activity. Slowly but surely, it’s lessening.

Staci was so inspired by the bright, airy hallways of Holland Bloorview, and by the treatment she received there, that she plans to return to volunteer once she’s old enough.

In the meantime, she advises other kids like her not to give up. “Stay strong,” she says. “Pain ends.”

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Chronic pain on campus: 'It's a silent, daily battle'

By Louise Kinross

Judy Sookehan Woo is a part-time student studying sociology, linguistics and women’s studies at a university in Western Canada. Judy has fibromyalgia and chronic fatigue. Fibromyalgia causes constant musculoskeletal pain and problems with sleep, fatigue, memory and mood. “If someone comes up and gives me a hug, it hurts,” Judy says. “Every day is unpredictable.” Chronic fatigue is a condition where the person feels exhausted no matter how well rested. “My illnesses are invisible and it’s a silent, daily battle,” Judy says. As a woman of colour with invisible disabilities, Judy has experienced what she describes as ableism and racism on campus. Follow her @Woo_Judy on Twitter.

BLOOM: What’s the biggest challenge you’ve faced with an invisible disability?

Judy Sookehan Woo: Negative reactions from professors who assume I’m healthy and able-bodied and treat me like I’m cheating because one of my accommodations is extensions on when papers are due. One professor, when students were in the room, told me she had ‘looked up and down’ the school policies and there was no mention of extensions.

This is a documented accommodation for me that is sent in a letter to the teacher by the Disability Resource Centre through interoffice mail. Usually, during the first week of class, everything's fine. Then, I can tell when the professor receives the letter about my accommodations because of the way they react to me.

It’s like they expect me to be the model minority student and they’re in a state of shock when I’m not, and then I’m treated awfully in class. They had it really rough when they went through their degrees and I appear okay so I shouldn’t use this letter as a way to manipulate the system. 

BLOOM: What did you do after that professor made that inaccurate remark?

Judy Sookehan Woo: I complained to the school’s Disability Resource Centre but they didn’t know what to do. There wasn’t a form for me to fill out or any kind of process to address this. There was no ‘I’m sorry this is happening to you.’ I asked if I should go to the Human Rights and Equity office and they dumped me over to that department. It was up to me to go to a different department I didn’t know to explore what I could do.

BLOOM: Have you found any administrator on campus helpful in resolving issues when your accommodations aren’t recognized?

Judy Sookehan Woo: Yes, the ombudsperson. There have been times when I e-mail a teacher to say I’m sick and I’ve missed a midterm and how can they accommodate me? And the professor doesn’t respond. Nothing. So going to the ombudsperson is the only thing I’ve found helpful. They’re neutral, but when they’re involved, professors are more likely to communicate.

BLOOM: Was there a group for students with disabilities on campus?

Judy Sookehan Woo: Yes, but it was an advocacy group that was more interested in politics than supporting people. It was like a popularity contest. They weren’t helpful when I came to them for advice and support.

BLOOM: Do most of the people in the group for students with disabilities have physical disabilities?

Judy Sookehan Woo: No, all of them had invisible disabilities. But except for two other women, they were all men and all white. I was the only person of colour who was transparent about my illness. It was very alienating.

BLOOM: Besides negative reactions about accommodations from professors, are there other challenges for you on campus?

Judy Sookehan Woo. Yes. There’s a lack of designated lockers for students with disabilities. I carry a big heavy knapsack and I try to find a locker assigned to people with disabilities that’s close to the class I have, but they’re scattered across the campus and the ones they have are usually already taken. There’s a similar problem in the main library where there are about 100 computers, but only one set up for people with disabilities that’s accessible. If I need it I have to kick that person off.

BLOOM: You mentioned there are designated rooms in the library with accessible computers. What are they like?

Judy Sookehan Woo: The computers in the designated rooms are very old compared to the computers available in the main library. They are constantly being fixed, so they’re not always there. There are two tiny rooms with four computers so it’s very cramped. There was never a working printer or access to the USB drive in the computer. If a person was in a wheelchair there’s no way to plug in their stick, unless they lift the equipment and plug it into an outlet in the wall.

BLOOM: What advice would you give a student with an invisible disability who’s just starting on campus?

Judy Sookehan Woo: Surround yourself with a supportive network of people and administrators.

BLOOM: How do students find supportive people? Like in your case, you didn’t find the group for students with disabilities helpful?

Judy Sookehan Woo: If you can find even a core of two to three people it’s important. When school policies change, a lot of the time students like us find out through word of mouth. I went to three clubs before finding a couple of people I consider friends. 

One of the clubs I went to was the students of colour collective. It took me a long time to find out who was a really good friend and who wasn’t. The people who work at the student loan department are very familiar with people with disabilities and grants and funding, and they can be a good source of support. They can help explain what the criteria is to get different kinds of funding.

BLOOM: What are other tips you’d give?

Judy Sookehan Woo: Have your accommodations written down for the professors. Do not compare yourself to other students and recognize how hard you have worked. 

It’s a full-time job to take care of yourself and keep up with classes. If you find yourself just coping, but not managing your illness, don’t be afraid to drop a course and regroup. To me, coping is like treading water and it’s not very healthy. You can end up burning out. 

Because school is stressful, be aware of your emotional and physical triggers. For example, I can’t drink coffee because it triggers my anxiety and school is already high anxiety as it is. Reward yourself every time you accomplish a goal. It’s not easy having a disability and going to school at the same time.

BLOOM: What would you like to do in the future?

Judy Sookehan Woo: I’d like to use new media to educate others as a woman of colour in the social sciences. Whether it’s Twitter, or filmmaking or using other social media, I’m interested in digital sociology.

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Pain

I left our talk with author Donna Thomson on a high last night. She filled my head with ideas for creating a life my son values, new economic and philosophical lenses for looking at disability issues, and the notion that we as parents could align ourselves as a political movement with other groups involved in giving and receiving care across the lifespan (seniors and children).

At 1:30 a.m. Ben woke me up complaining about his right knee (the one that wasn’t operated on). He couldn’t straighten that leg and was in a lot of pain.

As I walked him back to his bed, largely carrying his weight by propping him up under his arms, he hobbled along. I looked down and hated his twisted legs and the pain they caused him. Sometimes I’m still struck with ‘How could this have happened? Why?’ Of course I know the answer, that his genetic deletion means his body can’t read its DNA instructions properly. In this case, a gene that acts in most people as a tumor suppressor doesn’t work, so bone leaks out in different places – much like a tube of toothpaste that has cracks. I understand the technical why, but not the bigger picture of why this has to happen to my son – why ALL of it has to happen to him. Why to him and not to me? Why to him and not my other children? I know the answer to that is “Why not?” but I don’t want that answer.

We saw his surgeon a couple of weeks ago to find out what we could do about the knee pain that flairs up every few days. Not much, he told us. Because Ben has dozens of benign pieces of bone in the wrong places, it’s very difficult to pinpoint exactly which one is causing the problem. The surgeon asked me if I wanted to feel and hear the ‘crunching’ of his knee when he manipulated his leg and I didn’t. I may have misinterpreted this, but it sounds like the muscles or ligaments get caught on these pieces of bone, causing the pain. I gave him Tylenol last night, knowing it probably wouldn’t be effective.

I lay in bed with a lump in my chest waiting to see if Ben would get up again. It’s horrible when he moans.

He went back to sleep, but this morning he woke in pain and didn’t want to get out of bed. He kept his right knee bent and didn’t want to straighten it. When I tried to put it in the brace to stretch it, he began groaning and couldn’t tolerate it. We put an ice pack on it and then heat, but it didn’t seem to help.

I thought about giving him a dose of hydromorphone, the narcotic he had following his surgery. I remembered calling the hospital at that time and speaking to a resident in the middle of the night to ask about dosing. “Is he breathing?” the person asked. Apparently hydromorphone can slow breathing in people with respiratory problems. I went with the Tylenol instead.

Ben couldn’t get back up the stairs to the washroom before school, so D’Arcy had to carry him on his back. Then he had to be carried down our 29 stairs to the road.

I felt guilty sending him to school but I didn’t know that keeping him home would help and I had to go to work. We sent the wheelchair, which Ben hasn’t used at school for ages. I messaged his teacher and assistant and sent in some Tylenol.

Then I e-mailed his surgeon to ask about the hydromorphone and whether it can be used occasionally.

“I thought his surgery was supposed to STOP the pain,” my younger son said, as he watched Ben on the couch moaning.

“Unfortunately he has dozens of bony growths throughout his body and they can’t all be removed,” I said.

I just had a note from his teacher suggesting we take him back to the surgeon if it becomes unmanageable. But I’m not sure that the surgeon could do anything.

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