Schrödinger’s waiting room

Diagnosed. And not diagnosed. Simultaneously. Positive and negative test result at the same time. We are Schrödinger’s cat. Over and over again we have been in the same position, and I think it may actually be getting harder, or at least more perverse.

It the classic physics thought experiment, the cat in the box is both alive and dead at the same time until it is observed. I’ll let you Google the idea. I’m not a physicist and don’t think I can do it justice (truth be told, I ran away to Christmas break 24 hours before my 1^st term physics exam at university when I found out I could take 2 stats courses instead). But the idea of this state of unobserved being and not being has stuck with me. Who knew it would be so relevant to our life.

The past 13 years have brought about so. many. tests. And yielded so few answers. And with every one, after every one we end up Schrödinger’s cat – in this state of being and not being. At the same time, in my mind the result is both positive and negative (or inconclusive) simultaneously until the results are observed. Or at least observed by the doctor and then by us in the blessed follow up appointment, whenever that may be.

The waiting. Oh the waiting. The state of flux during the waiting. It’s been thirteen years of testing and waiting and being and not being. Thinking every time that this might be the answer.

I’m no fool. The hope is squashed down into a tiny place and not allowed to come out to play any more. I pretend a state of calm, of waiting peacefully with no expectation. Am I fooling anyone?

Really it’s a state of diagnosis and non diagnosis simultaneously. It’s the best I can do; both states existing, side-by-side, vying for space in Schrödingers waiting room. Waiting for an answer.

 

Patient Engagement? I think it’s time to Just Ask

Why is asking for help so hard? Many of us don’t want to appear foolish or look like we actually need help. Maybe we don’t want to make ourselves appear vulnerable for rejection. Asking for help means putting ourselves in a position of weakness, and for those who have always been calling the shots, this can be hard. For those who are in charge of healthcare decisions, admitting that they don’t have the answers, I’m sure, is a scary place to be. But it’s time to start.

And really, although I understand that implementation can be difficult, I think that everyone is overthinking this. Everyone is so busy trying to figure out the perfect way to ‘engage patients’, that it’s not happening. It’s time to go back to what most of us were taught (I hope) when we were growing up. Here are my personal hints on how to go forward

1. If you don’t know the answer to a question, don’t pretend that you do.
2. Ask questions to new groups of people that have new perspectives on a problem.
3. When you ask people to join a team, treat them with respect. This means that they have to be fully integrated team members, not afterthoughts.
4. If patients are going to be included in a fully authentic way, then the unique limitations on their time, budget and energy has to be accommodated in their engagement opportunity.
5. Patient voices must have the same authority and power as every other team member.
6. Ultimately, if health care providers/administrators/researchers have questions on how to proceed and engage patients, the best way forward is to just ask us. We're all right here. 

And for goodness sake, one patient on one committee isn’t engagement. Representation requires a diversity of voices in a diversity of roles. This is how we get to new solutions in healthcare. Everyone working together. We’re going to disagree. It’s how we’re given the opportunity to both agree and disagree that’s going to make a difference. 

Chase the Dog Says "It's time to Just Ask"

A little bit on collaboration...

I’ve been thinking a lot about collaboration lately. I’ve just finished one collaborative project, am in the middle of a couple of other projects and a part of a few other, ongoing collaborative efforts.

Of course, not all my attempts at collaboration are a success. Sometimes I fall on my face and sometimes things fizzle out.

I think it all circles back to communication. When efforts have worked out, the communication was easier, and when it wasn’t easy, at least it was open and honest. And when mistakes were made, the assumptions on both ends was that they were been mistakes, not intentional misdeeds.

Not all collaborations can work out – hey, I know I can’t get along with everyone. And certainly I’m as guilty as the next person of misinterpreting intent, putting my ego too much in the game, and letting both those things get in the way of the flow of communication. But I am really proud of this piece that I worked on with Sue Robins for Bloom, (the blog for Holland Bloorview Kids Rehabilitation Hospital), all about how the parent voice can be heard when we need to collaborate with our kids’ health professionals (‘I felt so small:’ Parent tips on speaking up with specialists).

What I liked about this collaboration: I’ve never really written a piece with anyone before. I see Sue as a writing mentor as well as someone who has had similar, but not identical, experiences in healthcare. It was great to generate ideas together and to turn what is usually a solitary experience for me (writing) into a shared experience.

What are your ideas on collaboration? How have they worked out for you? Do you have solid tips? Do you groan or get giddy with excitement when embarking on a collaborative project?

Collaborating to move forward together

15 Random Things About Me…

I’ve never done a blogging challenge before, but reading CarolynThomas @heartsisters and Natrice Rese @NatriceR wonderful posts on #15randomthings about them made me want to know #15randomthings about so many of the people I follow and read. It’s the random little bits that let you get to know your friends.

So, in that spirit… here are 15 random things about me:

1. I am a naturalized citizen. I was born in Portugal and came to Canada when I was 5. Growing up I did everything I could to make myself as ‘Canadian’ as possible. I wanted to be as much like everyone else as I could possibly be. I bemoaned the fact that there were no keychains or pencils with the name ‘Isabel’ on them and that no-one could pronounce my very Portuguese last name. It was only as an adult, and especially as a parent, that I’ve come to realize how important my Portuguese heritage is to me. That so much about me is Portuguese and that I am so grateful for that and that I hope I pass down those values to my kids.
2. As a kid I was bullied. And worse than that, excluded. I spent a long time not fitting in and despairing in sadness. I thought that it would never get better. School was so, so difficult. The academic part was easy and I spent my time getting lost in books and learning as an escape but it seemed that the more I escaped, the less I fit in. And again, once I grew up, the things that were difficult, were the parts that made me happy and whole. There’s a lesson in that, I think.
3. University was a special kind of freedom for me. I was off on my own where I found my people… Really, there were hundreds of people that all wanted to find out about how and why the world works the way it does? It was magic. It’s weird. I’m finding the same kind of community on Twitter.
4. I love the water. Being on any kind of watercraft; sailboat, powerboat, innertube, paddleboard, I don’t care put  me on anything on the water and I’m happy. Does anyone want to buy me a boat?

   

   My beloved SUP - a Christmas gift from my husband

5. I don’t feel like a meal is done until I’ve had a little bite of something sweet. That isn’t to say I have dessert every day, but I WANT dessert every day. Oh well.
6. I’ve spent time in Africa before the age of five but I don’t remember nearly enough and I’d like to go back.
7. Pretty things make me happy. If I buy a plain notebook and a sparkly one, I’ll use the sparkly one. It took me an inordinate amount of time to figure that out. I’ve wasted a lot of money on plain notebooks I didn’t use.
8. I colour code my family calendars. We may be over-scheduled.
9. My lists almost always contain the item ‘make a list’ so that I can always cross one thing off.
10. I love to travel and see new things and taste new foods. In fact, tasting new foods and taking new photos may be why I like to travel. My husband and I once took 3 months to travel the East Coast of Canada. We didn’t have a lot of money and we used the ‘Lonely Planet’ guidebook. We often chose where to go based on good food recommendations (among other things of course – but there was this one place with cinnamon buns – WOW!)

    

    A street in Paris - a scene from my honeymoom

11. I got my first SLR from my dad when I was 16. It was a manual Chinon with a variety of lenses but I loved by 70-210 lens with macro. It had been my dad’s as a youth and he taught me how to use it. I loved that camera and I loved taking photos with it. I don’t think I’ve ever loved a camera as much as I loved that one.
12. Technology makes me happy. Ok, sure, it frustrates me. When my devices don’t work, or I can’t figure them out, I’m fit to be tied, but when I can figure out how to do something or I get a shiny new toy and can make it work I feel like I’m IN THE FUTURE!
13. If I don’t have two or three unread books in the queue I get kind of stressed out. I need reserve books. I think that’s kind of weird. I’m a bit better now that there are e-books and I can just get more or take out a new one, but what if the internet goes down and I can’t get a new one and I run out of things to read?
14. I love to downhill ski, but it’s something I’ve come to as an adult. I actually grew up playing hockey (does this count as two things?) and skiing was something I would (grudgingly) do if there was no hockey tournament/game/practice. I was always to cold and my feet always hurt. Hey it was Eastern Ontario, what do you expect. I tried skiing again when my kids were young because of where we live and because it was a sport we thought would give our son some freedom. I only went to support my kids. I was NOT looking forward to it. Who knew? I LOVE it! I think I’m probably the biggest fan in the house now. The freedom! The speed! Plus now, I have better boots and gear.

    

    Sweet, beautiful 'me' time on my local mountain

15. I need to start buying more ‘grown up clothes’ but I keep slipping into buying more ‘ironic’, ‘nerd’ and ‘sciencey’ t-shirts. What can I say? They’re fun. The kids keep trying to steal them, though.

    

    A small sampling of my collection - it's laundry day

So there you have it, today's random things. I'm sure if I wrote this another day, you'd get something completely different! If you're reading this and write your own blog, why don't you share your own #15randomthings?

Patient Centred Care - Like a lot of things, I’m not sure what it is, but I sure know what it is when I see it.

I always like to tell a funny story…. For many years my son talked about one of his favourite doctors. He’s been his favourite health care provider because whenever we went there, the appointments were (in my son’s perspective), mercifully short. For a young boy who spent a decent amount of time at the clinic and the hospital, listening to adults ask questions and receive information, these appointments with no preamble, little information, and mostly self congratulation, were bliss.

However, from a patient centred care approach, I’m not sure I agreed. To be fair, technically, I had no fault with this doctor. His skills were, for good reason, legendary. My son was in excellent hands. But, when it came to those small touches that makes the family feel like they are, at that moment, the centre of the health care practitioner’s world? Well, not so much. The appointments, however, were definitely brief.

We recently had a new health care clinic added to our roster and our initial appointment was scheduled to last two hours – the 13 year old approached it with dread! His tolerance for medical appointments has gotten better with age but surely not that much?

This appointment was a completely different animal from anything we’d ever experienced. This was more than #HelloMyNameIs! This was #HelloWhoAreYouAndWhatDoYouNeed? From the get-go, the questions were about what were our goals for his care. And let me be clear – not just my goals, his mom, but his goals, the patient. The entire appointment was about our partnership as a team. How we could move together and facilitate a working relationship in order to effect better healthcare for my son. Wow. Let me say that again – Wow!

Living life with a rare disease, with an undiagnosed disease, has been a life of my project managing a healthcare system that I’ve been working on figuring out myself. I’ve sorted some stuff out. But I’ve missed a lot. Some opportunities have passed me by. I think I’ve done a reasonable job, but, (and this is a BIG but), I am only aware of the things I’ve missed because of other parents. What else have I missed? And how has they impacted my son’s life?

I can not tell you how relieved, unburdened I am to have this new clinic talk to me about a team approach.

Patient-centred care. I may not be able to explain it succinctly, but can I ever tell you when I see it!

ADDENDUM
A week after this appointment we went to another new specialist. Amazingly, another beautiful example of patient centred care. We see a lot of specialists, and for the most part I don't doubt their knowledge base, but we need so much more. We need partnership and lateral thinking.

After the second great experience in seven days here's what I've distilled as [some of] my needs for patient centred care.

1. Tell me who you are and describe you specialty.
2. Ask questions to listen and give me (and my child) time to speak.
3. Ask me what I need from our relationship & how we can build a plan together.
4. Tell me what you can give and what your limits are.
5. As a parent of a patient, don't just address me, address my child, your patient.
6. Tell me how we can communicate in the future.

I now realize that health care providers like this aren't the unicorns I thought they were. They need to be celebrated as the leaders they are.

On Gratitude..

I’ve been thinking a lot about gratitude and loss, loss and gratitude. So much of my life is defined by the rare disease that has wound its way into the every day conversation of our lives.

I wake in the morning and wonder if it will be a good day for Z. If today will be a day that he’s well enough and gets some things done on his tick list: things like seeing friends and going to school, riding his bike and eating dinner with family. It seems like so little to ask of a day. Or if today will be counting the moments for when he can balance the nausea against his hunger. When we hope that the headaches don’t come. When he misses his friends and we cancel our plans.

Whether things are going well or things are going poorly there are always the conversations wondering if it was this variable or that one that turned the tide. Could we repeat the pattern that worked? Is there a pattern that made it worse? Do we have any control over any of it? It’s all encompassing. It’s what I do. It has become who I am.

It is sometimes hard to feel gratitude in these times when I want what everyone else has – the normal days with the normal milestones – school, athletics, the everyday minutia of without the constant grind of uncertainty.

I try to remember the days before, when I had other things on my mind. Don’t get me wrong, of course I think of other things – friends, family, what’s for dinner, what’s going on at work – although now work is rare disease related as well. But the undercurrent is always the same. I have a background hum that sometimes is a shriek that can never go quiet; that is always there. And oddly enough, in that background hum, amazingly, I can find my gratitude.

Ridiculous. I know.

I’m looking at my kids right now as I write this. And I know that despite what this disease has given us, our family has received gifts from it. I don’t know what we’d be without it – I’ll never know that – but I do know that my kids value each other in a way that is different than would otherwise be. They bicker; they get on each other’s nerves – who doesn’t? But they see each other in a special light because of the stress that rare disease has imposed on our life. They are a unit in a way that typical siblings just aren’t. I see them out there, brother and sister, taking on the world. I know they have each other’s back.

Our little nuclear family has seen hard times and sometimes I honestly feel like the stuffing is knocked out of me. But my kids and my husband and my ridiculously cute and stupid dog remind me that laughter is the cornerstone of resilience and hope. And we’ve gotten through all of it so far; so likely we’ll get through the next bit too.

I’m stronger than I would have been because of this and I guess that’s a gift. It’s a gift I’d prefer not to get on my kids’ backs, but as long as they’re getting that same gift of resilience, I’ll take it as well.

Do I wish things were easier? Of course I do. Does my family spend a lot of time laughing in the despite the adversity? Often. Do I need to keep learning that lesson? Apparently. Gratitude and loss. This isn’t the life I imagined, but it is a beautiful one. I am so grateful for the beauty my family shows me. For the laughter they give me. The joy we have is so heightened sometimes I feel like I just almost can’t stand it.

Grant Reviewing: The Experience of a Parent

I recently had the privilege to attend the CanadianOrganization of Rare Disorder’s (CORD) 2015 Rare Disease Day Conference and to take part in a panel on Patient Leadership in Research.  

I thought hard about what I could bring to this research forum. Unlike the other panel members I don’t have a background in healthcare as either a provider or as a researcher. I don’t have peer-reviewed papers to legitimize my experience. I don’t have letters either in front of or behind my name.

So what do I bring to the research review process? How can parents & lay reviewers contribute the grant review process?

Instead of focussing on what I don’t have, let me start by telling you who I am.

I am a parent to two amazing children. By a quirk of genetic fate, my oldest has an undiagnosed, likely genetic, disease. My youngest is ‘typical’ (whatever that may mean), and spends an inordinate amount of time worrying about her older brother.

My son is 13 now, and we have spent most of his life searching for answers. We’ve seen innumerable specialists, experienced so many tests, he’s had so much chronic pain, on again off again, on again disability, a rare tumour, an impressive surgery, an ICU stay, and we still have no answers. Personally, our medical journey is still one of gathering data. Communicating with our healthcare providers and cobbling together management strategies that can maximize our son’s quality of life is our modus operandi. Some days are bad. This year, he’s missed 70% of his classes because of pain, nausea & fatigue. He has ambitions – plans to be a marine biologist and study the deep ocean. I live in fear that whatever he has, we won’t be able to help him realize those dreams. We often feel completely powerless and buffeted by forces we can’t understand and have no control over. This is not just our reality, but also the reality shared by most in the rare disease community.

 I am deeply entrenched in my rare disease community. I am a believer in and builder of networks, on and offline. I believe in the collective wisdom of families, patients, caregivers, doctors and allied health professionals. Furthermore, I fundamentally believe that within the intersections of those relationships and communications lays the wisdom that will bring patient care forward, individually and collectively.

My perspective comes not from a professional affiliation or education, but from our family’s, our community’s lived experience. This my education, my on the job learning.

But what does this bring to reviewing research grants?

I have been a parent/lay reviewer for the Rare DiseaseFoundation Microgrant Program since it’s inception. And while I’m a great believer in the program, it actually took me a while to fully understand the value that I, and others from the rare disease community, brought to the table.

It’s that word: perspective. And does the usual mode of reviewing grant proposals really have enough to get the full picture?

No matter how many times I saw this come across my facebook or twitter feed a couple of weeks ago I could not see this dress as the blue and black pictured on the right. I recognize that others genuinely saw it as black and blue. But to me, it remained white a gold. More interestingly, I would never had know that the dress could even be perceived as black & blue if no-one told me. I had no conception that the other perspective even existed. There’s nothing wrong with my perspective (or theirs), but without our conversations, we would have been completely unaware of the other’s.

I see rare disease research the same way. It is #thedress. Traditional ways of reviewing grant proposals have only had one perspective, that of scientific community. That perspective is not wrong. It is completely valid, but it is not the full picture. We are all both bound and lifted by our experiences but having more critical thinkers who understand our model and our goals will make the process more robust . Having more perspectives helps us make better decisions.

Adding the lived experience of families with rare disease to our reviewers ensures that research is funded that reflects the priorities of the rare disease community. Interestingly, I think that this will engage the community in being more involved with both the research process and with fundraising and advocating for research dollars. One group shouldn’t be dictating to the other what should happen, but rather all voices need to have equal standing.

This is a volunteer job that doesn’t necessarily come easily. It is work. It takes effort. It has been at times both time consuming and intimidating. It could have been seen as a burden on individuals who already have so much on their overfull plates? Why would we take on more?

Hope is hard to come by in the rare disease world. Cures are hard. Funding is hard. Days are hard.  When you get right down to it, I can only answer for myself. Twice a year, when I read these research proposals, when I see what people plan on doing with these small amounts of money for my rare disease community, I get a spark of Hope. Now I know that the vast majority of these projects won’t do anything for my family. But they will for another family. A family just like mine that lives deep down the shaft of uncertainty, and for them, one of these small research projects may be the beginning of a light at the end of the tunnel. And something that I do might help them see that light. Something I do. That is enough.

We are building something together here – a collaboration of scientists and health care providers and families, all of whom have an equal voice. As much as funding research, this is what I believe in – building this house we can all live in. Because making decisions together – this is what’s going to drive us toward the cures we need. 

Rare Disease Day – Making connections online & offline

The impetus for this post comes from a tweetchat that I'm ::gulp:: moderating in the coming week on rare disease for the twitter Health Care Social Media Canada community (#hcsmca). As a participant for the past several months, I thought it was time to dive in and see if some questions I have about community and rare disease could be answered by this lively and active group. More information on #hcsmca can be found at https://cyhealthcommunications.wordpress.com/hcsmca/

February's International Rare Disease Day seemed like perfect timing to bring up my thoughts to the community and they very kindly are welcoming my thoughts and questions. The following blog was originally posted on the #hcsmca blog.

Please join us on Wednesday February 18th at 10am PT (1pm ET) for a lively exchange of ideas!

February 28^th marks International Rare Disease Day – a day to bring awareness both within and outside the rare disease community. Several years ago some very smart people realized that while individual rare disease communities may be small, collectively the rare disease community is actually very large. Up to 1 in 12 people will have a rare disease in their lifetime and the people facing a rare disease shares a common journey with common obstacles. Rare Disease Day is a way of igniting the rare disease community to work together and achieve common goals as well as to increase the strength of our voice to those who wield power and make decisions.

The theme of this year’s Rare Disease Day Day-by-day, Hand-in-hand started me thinking about how the community I’ve found in both the offline and online world has influenced my lived experienced as a parent of a child with a rare disease ― the parents, people living with rare disease, those working in health care and volunteers I’ve met through the Rare Disease Foundation. My son, at 13 is still undiagnosed and when we started on his diagnostic journey as a preschooler we had no peers to turn to for answers, advice or guidance. Creating our own rare disease community let me share and find common goals, strategies and a voice for advocacy that gave meaning to our family’s struggles. Finding a greater community of health care providers and other volunteers willing to give their support has given me hope that our health care and research needs can be realized.

My kids & I

Eventually my personal rare disease journey crossed into my world of social media as more than just a place to share my kids’ photos and latest lunch ideas. My network started to grow nationally and internationally, giving me access to new perspectives and ideas. My social media rare disease community was becoming as important to me as my “meatspace” (in person) rare disease community, but in a different way. I started to become interested in how my online and offline communities could join and interact with one another.

How have my online networks changed my lived experience with rare disease? As a parent of a child with a rare disease I’m constantly looking for patterns, for clues, for ideas of what could be next in our diagnostic journey. I look for researchers, doctors, other connected parents to see what they are posting. Could what they are saying have relevance to our journey? To my son’s care? Can their strategies transpose to ours? We hear stories where this happens, where communities crowdsource one another. Could it happen to us?

My own story echoes this because it was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path. Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open to new ideas.

The rare disease community depends on social media. We are individually spread thin with 1 in 10,000 here and 1 in 100,000 there and the undiagnosed all over. But together, well, together we can talk. We can connect. We can crowdsource ideas, and strategies and connections. But I think we can start doing it better. The question is:  How?

• T1: What opportunities have social media afforded rare disease communities in particular?
• T2a: What’s better in online rare disease communities than our geographically closer communities?
• T2b: What are the shortcomings of online rare disease communities compared to IRL connections?
• T3: Can the offline world of rare disease communities benefit from social media connections? How?
• T4: How can the online and offline rare disease communities work better together?

Update:
Well, for my first time moderating a tweetchat it sure was fun. We had lots of great conversation and ideas about the benefits of online and offline connections for those living with rare disease. Happily, some participants also shared some great resources as well. I tried my hand at this Storify summary of the conversation if you couldn't make the chat:

Another plea for easily accessible health records...

I’m rallying the kids right now to hurry up and get out the door – wish me luck. Today is an exciting day. We are making the one and a half hour trek to the Children’s hospital to go see a sparkly-new specialist to get her perspective on our son’s undiagnosed disorder.

I don’t want to get my hopes up that anything new will come of this – but I do want to maximize our chances of getting the most out of this wonderful doctor. To that end, I went down the rabbit hole, the vortex, of what we all call The Binder. Woefully incomplete, too late in starting it, it is where I keep our version of his medical records, his OT, PT, speech pathology and many, more reportss; whatever I can put in there is there. I do this because in 13 years of acute and chronic medical caregiving, I can’t remember it all. It is where I thought I might be able to research a summary of all his symptoms, his history and his milestones. It is my one best hope of being able to compile and summarize his life for the new doctor.

I wish it were more complete. In the beginning – those first several years – I didn’t know I’d need these records. I didn’t know I’d be here 13 years later, still with no answers. 13 years ago I had a naïve faith in The System. I had no idea that I’d need to keep my own records. I had no idea of what a pain it was to track down all that information later. Hell, I had no idea that I’d need any of that information later. Not for the first time I wish I had the ability to easily go and find those missing reports to fill in those blanks.

Seeing someone new means giving her our history, his history. It’s been a long 13 years with a lot of information. It’s all there in the records – his milestones, his symptoms. Unfortunately, I have no easy access to that history. To be honest, we, the family, are the ones who can tease apart the information and give it context. We are the ones who can lay it out for the doctor to analyze with her perspective. Together, as a team, we have a chance for answers. But first we need access. We NEED access. Where are our accessible electronic health records?

I had no idea that 13 years later I’d be pinning my hopes (hopes, please get crammed back down there, you have no place out here), on a new doctor, a new perspective. But I need to get her the best information I have. I have to rely on the spotty records I have, the best that I can recall. This isn’t good enough for him. We can do better.

So here’s what I’ve come to after hours of pouring through the information I do have and writing up the summary I came up with.

1.     Our version of The Binder has a LOT of holes. We are missing more than I thought and I find that very distressing. I need a plan to fill those holes.

2.     After writing our summary, I realize  that we minimize a lot of what our son has gone through. I’m not sure if that’s good or bad. Maybe a bit of both? We don’t tend to dwell on the negative, but maybe we should celebrate more how much he/we accomplish in the face of difficulty.

3.     Going through The Binder once in a while is probably a good thing to lend perspective and ensure quality. Some of those reports – lets just say ensuring accuracy might be a goal for the future.

4.     I don’t want  access to my electronic health records. I need access to our health records. We all know that it will lead to better care for my son, my family. And I know it will lead to better care for others.