Let's Talk About Grief, Baby

I'm pretty sure when Salt-N-Pepa wrote this memorable song "Let's Talk About Sex" in 1990, they didn't think it would be parodied by a tiny blog discussing grief.  Have you ever seen this music video? The lyrics begin with "Yo, I don't think we should talk about this. People might misunderstand what we're trying to say, you know?...  Ya, but that's a part of life..." I think we need to talk more about "all the good things AND the bad things," which includes death, dying, and grief. The idea of "not talking about something" makes it scarier and allows for stigmatization.  There should be no guilt or shame when it comes to grief, but for that to happen, we need to talk about it.

The Fam <3

If you happen to know me IRL, follow me on social media, or you've read my previous blog post here, you know that both of my parents died from complications from Covid-19, fourteen days apart, in December 2020 and January 2021. (Get vaccinated already, for heaven's sake!)  In the same year, my family also said goodbye to my Uncle Pete (November 2020), and my Aunt Marilyn (my mom's sister, November 2021), not related to Covid-19, but terribly sad just the same. They're the four seated in the front row of this photo from our family reunion a few summers ago, all too young and too special to be gone. In the year this was all occurring, there has been incredible love and kindness towards my family and to me, including gifts of several books about grief. Now that I've read them, this post shares a little about each one, hopefully helping you if you're grieving, or if you're wanting to show you care to someone who has recently experienced loss.  

Source.

First, a definition.  There are many- but what stuck out to me was the third bullet on this one: Grief is "a NORMAL, natural, necessary, and adaptive response to a loss."  I initially felt entirely crazy in my grief. I was a different person and couldn't recognize myself.  Nothing about the grief experience feels normal. I started running late and losing track of time when I'm typically way too early for everything.  I forgot about commitments, getting texts asking where I was, only to realize that I totally spaced it. I said no, when I typically would say yes. I didn't want to help other people, and that's what I do for a career, and typically love. I was angry, I cried hysterically in the middle of Target, I had to pull over on the side of the road because I couldn't see through tears to drive, I couldn't sleep - when normally I'm the ultimate sleeper, I couldn't get out of bed, I stopped cooking, and I went into isolation. I'm about as extroverted as it gets and I didn't want people around me. These behaviors were far from my normal, so for someone to say it was a "normal" response was helpful. 

If you're also grieving, it is likely that your experience will differ from mine.  My brother, sister, and I were going through it together, but we each had (and still have) different responses to our losses. It doesn't do ANY good for us to compare to each other, because the person you're grieving held a personal meaning to you, and the family members I'm missing held personal meaning to me.  I talked to my mom on my drive home from work 3-4 times per week for seven years.  The drive home form work is one of the worst times ever for me... my brother doesn't have that same experience.  Fortunately he'll answer if I call him at that time, knowing what's going on.  Even for the family members grieving over the same people, the hole in your heart and soul doesn't feel the same for each of you. For me, grief has been fear and anger and frustration and sadness and confusion and loneliness all rolled into a ball. And pain. So much pain. I've written many blog posts about pain in the past, but grief is the first time I've experienced so much pain that was 100% connected to my psycho-social experience. There was nothing wrong with the anatomical structure or physiological function of my heart, but there was SO much pain and it was very real. (Come to find out, about 3 months after my mom died, I was diagnosed with pulmonary emboli - so it's possible that there was something going on anatomically, then, too, but that's a story for a different day.) None of my learning about pain prepared me for the pain of heartache.

All the pain and emotions came with gratitude, appreciation, reflection, and love for the people we lost and those who cared about our family. I hope that in your grief, you can find these positives - but they don't shine through every day. At the beginning, almost all of the days felt very dark, with very little time for light. As time has passed, there has been more time for light, and the dark has been less frequent and less intense. Perhaps you'll find one of these books or an idea in this post to be helpful for navigating this unmarked territory. Or at the very least, maybe you'll laugh at something in the music videos and have a brief period of light to disrupt your dark. 

Purchase Here

Book #1; "Healing After Loss" by Martha Hickman was the first grief book I started reading about two weeks after my mom's funeral. A good friend from high school who experienced heartbreaking loss sent it to me with the sweetest note. "Abs - people sent lots of stuff after what happened. This book was the only one I could handle. Short and simple. One page a day. If it helps, great. If not, use it as kindling.  Love ya." <3 My sister actually received it as a gift from one of her friends, too.

I have so much gratitude that I was able to take a leave of absence from work because I could not have been a functional physical therapist - or human - during that early time.  At the beginning, I know I was breathing, but I wasn't really alive.  I would see my therapist and she would ask me how eating, showering, and sleeping were going, and would ask if I had done any body movement at all.  We decided focusing on those basics initially was the best way to go, and beyond those, I set the goal to read a single page each day.  Accomplishing that goal was the first step to a long pathway back to returning to life. This book is set up like a calendar, one page per day of the year with a quote and a meditation related to grief and loss. In the beginning, I didn't have the ability to focus. For someone who reads about 40 books per year, it shocked me that I couldn't read a full sentence, let alone pages or chapters. My mind would wander or I'd just end up staring off into space. I spent a lot of time in the fetal position and, at the recommendation of my cousin, watched the entire series of Lost to occupy time and distract me between phone calls with my family. A book where I could read a single page was ideal - and honestly sometimes I had to re-read the same page several times to get through it and retain anything. Some of the quotes felt applicable and helpful.  Suggestions to move my body to get me out of my head - even if it meant getting up to get a drink of water and then curling back up buried under a pile of blankets. Acknowledgements and appreciation for the people who've been lost, knowing that early on, that's really hard, but that as time passes, the memories won't be as sad and there will be happiness and joy recalling time we spent together.  Recognizing that grief is hard and heavy but that there is life to live if you can manage to move through it is a common theme.  I liked this book, but also read it a page at a time, and once I returned to work, I sometimes would miss a few days, so I still have some left to get through, but I'll finish it eventually.

Book #2:

Purchase Here

My therapist gave me "It's OK That You're Not OK" by Megan Devine. She recommended I purchase this book a few times, but I couldn’t put myself together enough to order it or get it from the library. I was still having all my meals delivered and not leaving my house except to see her every week. Beyond basic survival, I didn't do anything except watch Lost and talk to my family with occasional friend visits, still incredibly fearful of the stupid Coronavirus. So when I arrived at a therapy session, about two months into my grieving, and she handed me a copy of this book, I finally understood how much she thought I'd benefit from reading it and by then, I was capable of reading for longer stretches.

This book was really good because it presents a first-hand experience from the author, who is a therapist, who suddenly lost her husband. She shares her grief and lets you find places where it matches your own. She shares many of the things commonly said to someone who is grieving and explains why some are helpful - and others are painful.

What I'm writing here is what I experienced, but the book explains similar situations, why they're painful, and what to do instead. For example, at the beginning, nobody else could understand what my siblings and I were experiencing. Tons of people said "I can't imagine what you're going through." I have a shoebox full of condolence cards that say that sentence. It's probably an accurate statement, said with good intentions, but instead of saying this, people could have asked what I was experiencing, helped me to process in some small way, and share in my grief. This is semantics... but as I preach in healthcare, the words we use matter, and these circumstances cemented that belief in me. Another common case of good intentions but hurtful words in our situation was "at least they're together." Remember, my dad died, and then fourteen days later my mom did, too.  I don't know about my brother and sister, but initially, I tried to find solace in knowing that they were together, but that never made me feel better. They didn't both need to die. Why couldn't my family at least have one of them, still? 

From "It's OK that you're not OK."

A few people told me they didn't know what to say to me, but they planned to keep showing up hoping that it was good enough. Trust me... it was. It is. The random text messages of my friends' kids on their back yard swing set, late night phone calls, invitations to get together even though I would likely decline, just dropping by to say hello, bringing over homemade dinners, offering to pick up Dairy Queen since you're going with your kids and they'll be quiet eating it in the minivan long enough for you to give me a quick hug? Asking how I was and not accepting "fine" as an answer, making me truly share how I was, and telling me that it was OK to cry, despite my embarrassment... that mattered. Those were really thoughtful and helped me feel like I wasn't forgotten while I wasn't able to live my own life. Friends took care of my house and made sure my mail was picked up, plants didn't die, and had a house cleaner come in while I was traveling for funerals. Showing up, however you do it tells the grieving person that you know they're hurting, and that you're willing to sit with their pain. You're not trying to take it away. You're keeping us company while we try to find air in our lungs. It's proof that we're not alone. Asking about memories so we can feel our loved one with us is even better. A grieving person is thinking about their loved one non-stop anyways... you bringing it up might be hard, but it provides for an outlet.

Purchase Here

The end of this book contains a short essay "How to Help a Grieving Friend."  My favorites: "4. Be willing to witness searing, unbearable pain." "5... Your friend cannot show up for their part of your relationship very well.  Please don't take it personally, and please don't take it out on them."  and "6... Do not say 'Call me if you need anything,' because your friend will not call.  Not because they do not need, but because identifying a need, figuring out who might fill that need, and then making a call to ask is light years beyond their energy levels, capacity or interest." Saying "What can I do" to someone who has a gaping hole in their heart doesn't work. They want their loved one back - nothing you can do will achieve that. Want to bring over a meal?  Offer it on a specific date and time. Want to sit with your friend while they cry? Tell them when you plan to show up. Send a note, a drawn picture from your kids, a text message just saying you're thinking about them. Recognize that your life is continuing with little change, but theirs is frozen in time.  

Book #3: 

Another friend send me this book, a favorite in her family, that is an illustrated story about, "The Boy, the Mole, the Fox, and the Horse." It's a sweet story about kindness and friendship with beautiful drawings.  Though it's the shortest book of the group, it took me a while to be ready to read it because the cover felt like it would be sad, and I was already sad! This one can be read as a book or you can just open up to a page and enjoy the individual messages - it's designed to be read either way. It probably would be a good choice early on, particularly if you're not capable of concentrating very much. And then I sent it to a friend who experienced loss of a special pet, and she seemed to really appreciate it, too. 

Book #4: Last but not least, "Finding Meaning." arrived with a note recommending I wait a bit before diving in and reminding me how many people cared about me. Ten months into life without my parents, I decided I was ready to read it.  I sat in my therapist's office telling her that we were nearing a year of grieving, that I thought it was time for me to decrease the frequency of our sessions after getting through the anniversaries, and that I was going to read my final book about grief before moving on. And then I read Chapter 2 of this book which shares that grief doesn't end at a year or any arbitrary length of time. When asked "how long should someone grieve," the answer is "as long as I'm alive without the person I loved."  It may not hurt as much or as frequently, but that emptiness and sadness exists and can be triggered forever.  The book uses this as part of it's main theme - that Kubler Ross' 5 Stages of Grief end in Acceptance, but that she missed the 6th stage: Meaning. Meaning in the life (lives) that have been lost and in your own life moving forward without them.  Meaning helps make sense of grief.  It can look like gratitude, commemoration, honoring, shifting behaviors after the realization that life is short, or something else entirely.

Purchase Here

Finding Meaning shares the benefits of expressing your grief.  I've written about my grief once before, and spoken about it quite a lot, including discussions with my family about my preference to continue including my parents in our future life experiences, even though they're not here. Some people lose loved ones and they keep their emotions inside and private.  That could be ok for them, but it isn't what feels right for me.  I wouldn't be who I am if it hadn't been for the way my parent's raised me. They'll always get a little bit of the credit for whoever I become, and I will intentionally acknowledge that. This book seemed to examine death more than the others. How our society looks at death as a failure - despite the fact that 100% of people die. It explains that grief is inevitable where there was love, but that suffering is ultimately a choice that we can individually control, though that seems impossible at the beginning of this road. I know I still experience moments of suffering, when the pain overtakes me as I accidentally go to call my mom on my drive home from work, or I want to ask my dad a question, and forget for a moment that I can't. I don't suffer as much as I did before, and I think it's important to share that for anyone who might be grieving and comes upon my post.  Yes - I miss my parents - every single day, but I can continue living and keep them part of my life even though they're gone.

Honorable mentions: I also read Michael Rosen’s “Sad Book,” a book about grief appropriate for little kids written about the loss of his son, and Tom Hart's “Rosalie Lightning,” a graphic novel with incredible artwork depicting the loss of his young daughter. While all of these books helped me in different ways, I didn’t read any specific to loss of a parent, and definitely not two of them fourteen days apart with the added loss of two more close family members, and for certain not during a global pandemic where it was impossible to mourn with the rest of our family.  I would think more people lose parents than spouses or children, but maybe they're not usually as traumatic and they're more expected that less books are written about that?  Above all, I’m so grateful for these gifts, particularly the notes that accompanied each of them, and I can appreciate that others, including many in my family, have felt loss in a deep way this past year.

Added June 9, 2022: At the suggestion of a friend who was also experiencing grief, I read "Welcome to the Grief Club: Because you don't have to go through it alone" by Janine Kwoh.  New in 2021, I was already a year into my grief process when I read it, and liked it.  This book was different than the others and deserves inclusion in my post because it was helpful, supportive, validating, and used multiple mechanisms such as a short page or two of text, questions with answers, characters with speech bubbles, and even graphic representations to help process thoughts and emotions.  I think I would purchase this one to send to someone experiencing grief because it was easily digestible in small chunks, and, considering the topic, it was the easiest to relate to. 

Typical of me, this post has gone on far longer than I intended.  Music often enhances situations, but the anthem of this post can't be "Let's Talk About Sex."  At my Aunt's funeral, my cousins chose to play "You Are My Sunshine," which my Aunt sang to them - and my Mom sang to my sister, brother, and me. I couldn't believe the snow that started falling while a song about sunshine was playing. For me, I tend to cling to a song during emotional times, particularly if the lyrics seem to fit the situation.  Later on, if I happen to hear that song, I flash back to that time and appreciate the memory having a theme song to accompany it. Since my parents died, I've been cherishing the comfort from my family and my oldest friends, and so for many months, I've been playing Ben Rector's "Old Friends" on repeat. Those friends who are more like family, like my cousins who also feel like friends, all of which knew my parents. People who were sad about what was happening for their own reasons and grieving alongside me. I think people who are sad need to find what feels most comfortable, and for me this was what felt right. "Cuz no one knows you like they know you and no one probably ever will, you can grow up, make new ones, but the truth is, there's nothing like old friends... I've got some good friends now, but I've never seen their parents' back porch. Wouldn't change how things turned out, but there's no one in this time zone who knows what in-line skates I wore..." Some awesome lyrics on repeat for many months filled with sweatpants, blankets, tea and LOTS of tissues and FaceTime.  So why not post two different songs with entirely different tones and messages to round out the same blog post? 

If you're grieving, I'll keep it real and tell you this sucks. So much. And it hurts, right where your heart is beating in your chest. But it's normal to feel this way if you've had love in your life. You're not alone. And while you'll continue missing your people, there is life worth living even without them, and you can bring your memories of them along with you.  Take photos with your loved ones when you see them next... you'll be glad later.  And tell people you love that you love them. 

If you need help, here's the Crisis Grief Text Line for you to get help right now.

Sending love to Aunt Marilyn, Uncle Pete, Mom, and Dad. Always. TTHAS. 

"Pain is ALWAYS both physical AND emotional 100% of the time."

As a Sports Physical Therapist at Seattle Children's Hospital and a member of their Pain Medicine Team, I work with many kids experiencing chronic pain. Most often, that includes seeing teenagers who can't tolerate going to school, hanging out with their friends, or participating in their favorite extracurricular activities. Sometimes it's even worse: kids who haven't been able to put a shoe or sock on (or walk) for many months because of chronic regional pain syndrome, which means a very long road back to their previous level of function.  Their pain could have started long ago with an injury or illness, and will hopefully improve with graded exposure to movement while learning about pain.  These patients can experience massive improvement in their lives if things go well.  I'm not crazy enough to think I can help everyone, but I've grown to embrace this work, including when I can't help my patients break their pain patterns.  To help kids with chronic pain with any success has required a commitment to collaboration with other healthcare providers and dedication to learning about pain neuroscience and pain management. To do that, I read. A lot. 

I also read a lot when I'm preparing to give a presentation.  This week, I was invited to talk about Pain Neuroscience and the Pain Medicine Clinic to the Seattle Children's Regional Rehabilitation Team. I like presenting because it requires me to focus learning on a specific subject and makes me seek out new resources. Educating clinicians is very different than patient care and it helps me consider my own beliefs, biases, and treatment approach.  I was fortunate to be partnered with Hematology/Oncology Physical Therapist Dr. Jacob Ross, who spoke about the intensive Pain Rehabilitation Program (PReP) where I sometimes refer patients when they need more care than 1 or 2 hours per week in my clinic will achieve.  If you're seeing Jacob at PReP, you're undergoing rehab or mental health or some school work Monday through Friday from 8AM-4PM for anywhere between two and four weeks! Based on this website, there are 83 pediatric pain clinics around the world, mostly (65%) in the United States, existing in 25 states plus Washington, D.C.  That means half of the states and the majority of the world doesn't have this available at all - and if you consider that the states who do offer these type of services only have it in a small number of places, tons of kids with chronic pain have no access to this care! In Seattle, I've worked with families from Alaska, Montana, Idaho, and Washington - and there are probably patients from many more places that my team members have worked with. 

If you're interested in learning about pain, I recommend you start with the work of Lorimer Moseley.  I've previously written about his books: Explain Pain, Explain Pain Supercharged and the Graded Motor Imagery Handbook, and I wrote about hearing him lecture and meeting him at the University of Washington, here. The NOI Group, who published those books, announced a new one coming out in December, "Pain and Perception: A Closer Look at Why We Hurt" which will be my next pain-related read.  From a different perspective, I also wrote about The Gift of Pain, which describes what happens when people are without the ability to experience pain. You don't pull your hand away from a hot pan or stop walking on a broken leg if you can't experience pain - a very dangerous scenario.  If you came upon this post looking to learn about pain management, any of those resources would be great places to start, but they're more about educating clinicians and, though they may be helpful for patients, I've now read a workbook more specifically intended for patients and think it's a great addition to this list.  

$19.95 on Amazon!

In preparation for our presentation, Jacob asked if I had heard of Dr. Rachel Zoffness. "Why yes, Jacob, I have. I follow her on all the social media and listen to her podcast episodes (OMG listen here or here or here or definitely my favorite: here), and I just finished reading one of her books."  The Chronic Pain &Illness Workbook for Teens was published in 2019 and was the first new resource I read for my presentation. Dr. Zoffness is a Pain Psychologist who teaches for multiple higher education institutions, she is the Co-President of the American Association for Pain Psychology, and she is on the Board of Directors for the Society of Pediatric Pain. Oh, and she treats patients experiencing chronic pain and has written two books. (She also wrote The Pain Management Workbook which I'm currently reading.) She's also released an $80 Workshop "Foundations of Pain Psychology" and more from that series are coming soon! Hopefully I'm not starting to look like a creeper because I've been fan-girling and re-sharing all her posts, podcast episodes, and books, so writing a blog about her work is probably the icing on the cake. When you find someone who can directly impact your patient care and knowledge, with easily digestible tools and clear, consistent messaging, I think you have to tell everyone.   

If this is your first time reading one of my blogs, you might not know that I write to organize and synthesize information I'm learning to refer back to or share with others.  Today's post starts with a look at a few of my favorite points from Dr. Z's Teen Workbook paired with information from two of the research papers I read for my presentation and it wraps up with a look at another pain management workbook from Dr. Greg Lehman. 

If you're a person living with chronic pain OR a clinician who works with patients experiencing chronic pain, in-person multidisciplinary care is the best treatment option, but that isn't available or affordable or feasible for so many people. The Teen Workbook could be a solution for patients who need something they can do independently.  It doesn't replace physical therapy or mental health counseling (or the many other treatments that may be appropriate and necessary), but it can certainly help educate patents and initiate behavior change that may be life changing.  

Jull 2017

1) Let's start with my favorite quote from Dr. Zoffness:"Pain is ALWAYS both physical AND emotional, 100% of the time."  This is the biopsychosocial (BPS) model at its heart and connected well to this image from Jull 2017 that I spent a lot of time discussing in my presentation. The Jull paper is a commentary on the BPS model and shows the idea that 3 different patients may have different amounts of biological - psychological - and sociological needs.  But also, the same patient at time 1, time 2, and time 3 has different amounts of these domain needs, too.  Today, for example, I might have a mild headache and I'm hungry but my mental health is good and I got to spend some time with friends so my social bucket has been filled, but my biological bucket may need more attention (maybe a sandwich for my blood sugar).  Tomorrow, I might have eaten enough for breakfast but be stressed about my pain presentation at work and spending a longer day at the office missing out on game night with friends - so my biological needs have been met, but not the social pieces that keep me going. You can't just look at your patient and think they only need biological care or mental health care at your evaluation and then assume it stays the same for all of their treatment.  I

The Workbook is clear about the role of the mind-body connection with regard to pain and explains what parts of the brain are involved.  It provides concrete examples, intentional questions for patients to consider, and a roadmap of strategies to try to better understand your own pain triggers from each of the three circles and identify solutions to try to reduce your pain volume.  Some of the pain books I mentioned above were really complex but this one is, without question, the easiest to understand and most user-friendly option for the general population, particularly when considering teenagers.  Too often the "Bio" portion is treated alone, with Physicians and PTs attributing pain to tissue damage or disease, but that (biomedical) approach ignores two major domains that impact the patient's presentation (Psych and Social circles). The unity of physical and emotional care is essential to patient success and Dr. Zoffness is screaming this message from the rooftops for everyone to hear.  I'm happy to amplify her message as often as possible to whoever will listen.  I actually ask my patients  "How's your mental health today?  Anything stressful going on?  When are your exams?  Have you done anything fun with your friends lately?"  If it's OK to ask them how their ankle is after they've sprained it, it should certainly be OK to also ask these questions.  Clinicians: please consider adding this to your day to day interactions with family, friends, and patients - and I don't just mean handing them the depression questionnaire and glancing at it.  Look them in their eyes and ask them how they're doing.  And mean it!

Tale of Two Nails

2) Metaphors, Analogies, and Stories help teach pain. It's no surprise that Lorimer Moseley is a mentor to Rachel Zoffness (and Greg Lehman) because they all use many of these to get their points across. I presented a few in my talk, also, but have a few favorites I use with patients.  One example that I liked from the Teen Handbook is about practice.  Think about an activity you wanted to learn. She uses playing piano, but I'm using basketball. At first, your hands struggle to dribble without staring at the ball and using your palm instead of your fingertips and the ball might bounce off your foot or miss the rim when you take a shot.  As a novice the task is more difficult and requires more effort and concentration.  So you practice.  And over time, you get better and better, until at some point, you've stopped looking at the ball and can run while handling it and can make shots from farther away and your form looks more consistent as it becomes automatic.  Your brain has developed new patterns that have been repeated enough times that the task is now easy.  With chronic pain, you're unintentionally practicing pain and your brain develops patterns that make it easier or more automatic to have pain.  The beauty of this is that with the appropriate treatment, the pain and learning can change.  Another example Dr. Z has written about, is "The Tale of Two Nails" which tells two really great stories that can inform our understanding of pain - but you should read those directly from her - so check out the article or buy her other book, because it's in there!

When Dr. Z is talking about practicing pain, she's explaining central sensitization, a phenomenon that I previously was struggling SO MUCH to understand. Central sensitization is a common characteristic of chronic pain, where you have an increased response to sensory stimuli resulting in hyperalgesia (increased sensitivity/bigger pain response to the same sensory input) AND allodynia (painful response to something that is normally not perceived as painful like hurting when you're touched by a feather on your skin.) Your nervous system changes when you experience pain for a long time. 

For my presentation, this 2011 Clifford Woolf paper depicts normal sensation compared to central sensitization.

Normal Sensation: On the left side there is an input - either something noxious (potentially dangerous - top) or a light touch (feather, bottom). Notice the black arrows for the top path (pain) and the bottom path (touch) don't converge and the brown blob (brain) is the same color as the rest of the  nerves.

Central Sensitization: Here, the same sensory stimulus occurs at the far left, but now the black arrows merge to the same destination (brain) and the color has changed because the system has adapted resulting in hyperalgesia and allodynia responses. 

3) It's a workbook: there are pages for you to do work.  This isn't just a book of education about pain. This is a guide with explanation of a key pain-related concept followed by actionable items to help improve your experience.  Sometimes I feel like patients who have had pain for a really long time are desperate for a physical therapist to DO whatever we can TO THEM hoping to dull the pain for just a few minutes.  What we really need is to serve as a guide, showing patients what THEY can DO on their own to turn down the pain.  They have to take control of their lives and do the work for any success to occur.  Physical therapists in chronic pain management should be cheerleaders, rooting on our patients as they make 1% progress day after day. People don't need to be 100% to live their lives fully, and often a really small amount of progress gets the ball rolling for a lot more progress to occur. I don't think patients realize how much control they have over their pain until someone empowers them to trust the process and themselves to get moving.  

Link

So, let's say you like the idea of a workbook and want to have multiple options to choose from, or you're an adult and want something a little deeper into the science. As I mentioned, I haven't yet finished Dr. Zoffness's other book, but I expect it might target that audience a bit more. There's another workbook I really like and was using prior to reading Dr. Zoffness's book. Dr. Greg Lehman's "Recovery Strategies" Pain Guidebook is available for patients or clinicians to access online.  I've previously written about attending his "Reconciling Biomechanics with Pain Science" course here and have appreciated learning from him both at the course and from his online presentations and social media. 

The workbooks are similar in their intent and both include key focus on the BPS model, describe how pain works, and provide action items for you to follow.  And both have many metaphors, analogies, and stories.  In particular I liked his metaphor for what happens to the brain with chronic pain: Consider that our brain is like a map of our body, and that a good map would be really clear, showing all the roads and rivers, but that with pain, things get smudged, almost as if you've spilled coffee on the map and the details get a little fuzzy.  The details of our body can get a little fuzzy with chronic pain, but with exercise and movement, we can clean up the coffee mess and the map gets clearer.  Overall, though, they're really quite different.  Dr. Lehman's book is written as a series of infographics, almost a choose your own adventure graphic novel, where you can take a single page out of it to educate your patient.  It includes pages of mythbusters, examining common misconceptions about various topics like "bones out of place," or how tissue damage found on imaging like an MRI doesn't always correlate with pain.  I think Greg's goes into more detail on how pain processes occur, looking deeper into the science of the nociceptive system, the spinal cord, and the brain, but he also acknowledges that it's meant to be used for patient and provider together because of its level of complexity. 

Also, I think that because Greg is a biomechanist, chiropractor, and physiotherapist, his handbook comes through from a more musculoskeletal lens. Though he fully emphasizes the BPS model, he's more from a bio background and gives adequate attention to the other bubbles.  Rachel is a pain psychologist who comes from a more psycho-social background, and thoguh she gives adequate attention to the bio, it's super interesting to look at their two workbooks and consider how they're trying to reach the same outcome for patients from different angles.  I think that patients would absolutely benefit from both. 

That's all for now.  December's blog post is about grief.  It's another long one and recommends several books on that topic, too. So if you're looking for holiday gifts that are books on pain, start with Dr. Zoffness's books - or if grief books might help one of your loved ones, there are several being reviewed next month.  Stay tuned!

TL;DR:

1) "Pain is ALWAYS both physical AND emotional, 100% of the time." 

2) Your nervous system changes when you experience pain for a long time.  This is called central sensitization which is characterized by hyperalgesia and allodynia. 

3) Teaching people about why we have pain and how the pain process works has been shown to help improve pain.  Multiple resources are listed to learn more about pain, often using metaphors, analogies, and stories to demonstrate complex concepts and make them more easily understandable.

4) The biopsychosocial model indicates necessity in attention to the biological, psychological, and social domains in treatment of chronic pain. 

The CALU Summit

Hey followers!  It's been a little while. How are you all doing?  Have you checked in with yourself to make sure you're taking time to relax, breathe, eat, sleep, and move?  If you have any nurses or doctors in your life, send them a nice note or bring them a coffee because they're working so much harder than they've ever had to.

Today I'm writing about the CALU Summit which I recently attended virtually.  The name CALU comes from the combination of Clinical Athlete and The Level Up Initiative. I've attended A LOT of continuing education courses over the past seven years as a PT and I'm certain this was the most fun learning I've ever experienced.  This was my first CALU Summit - their second time holding the event - but I have interacted with both groups in different ways for many years.  In the past, I went through the Level Up Initiative's mentorship program and then served as a mentor and am planning to again. I've previously written about them here. Clinical Athlete puts out podcast episodes that I've listened to and I've participated in some of their journal clubs.  Both groups have loads of social media worth following and are led by super smart physical therapists who believe in educating healthcare providers.  These two networks have impacted my patient care and helped me develop as a physical therapist. In my opinion, both groups are MUST FOLLOW accounts for physical therapists, strength coaches, athletic trainers, and any new grad healthcare provider - but would also be great options for sport coaches, athletes, and parents of athletes to check out! (Specific names to search for on Instagram include: @thelevelupinitiative @clinicalathlete @zakgabor.dpt @stephallen.dpt @quinn.henochdpt @jared.unbreakablestrength @rebuild_stronger - sorry if I missed anyone!) Here are some of my favorite take-aways from the Summit! (Disclaimer - this is what stood out to me, not direct quotations.)

Each day of the Summit had a theme: barbell athletes, endurance athletes, and ACL rehabilitation, with two presentations on each topic.  There was key focus on the biopsychosocial approach, communication, and on case study discussion. The keynote speaker kicking off the weekend was Erik Meira, The Science PT whose talk was "The Socratic Therapist." He quoted Socrates, "What I do not know, I do not think I know," starting us off with philosophical thinking and the understanding that healthcare providers who dedicate themselves to continuous learning are simply working to be "Less Wrong" every day.  None of us can really ever know for certain that what we're doing is the absolute best option for our patients, but with scientific experimentation and consideration of evidence, we can get closer to being right by increasing our knowledge. There were several moments during the course where I had the chance to think back to how my practice has evolved based on what I've learned.  This was the first instance of that reflection. Erik offers his own courses, both online and in person, one of which I'm about to start after I finish ACL Study Day (there aren't enough hours in the day!).  Definitely check him out.  (IG: @erikmeirapt)

Day 1: The Barbell Athlete:  

Presenter  #1 was Stefi Cohen - a super strong woman, competitive powerlifter, and physical therapist who founded the Hybrid Performance Method and coauthored the book Back In Motion.  She described her experience with a low back injury with consultations from from both Stu McGill and Greg Lehman - well known Canadian practitioners in the rehab space who have different approaches despite Greg having been a student of Stu's.  Stefi shared the outcomes and her take-away understanding from those providers.  She discussed that she spent four hours doing special tests with Stu McGill and ultimately was in a lot of pain for an extended period of time after her examination and that his approach to avoid certain movements and take time away from her sport didn't resonate with her - but that she appreciated his estimate on the amount of time it would take for her to get back to her previous level of competition.  His timeline turned out to be fairly accurate, from what Stefi described.  In contrast, she saw Greg Lehman virtually and found a rehab approach that aligned with her own beliefs and with the understanding of finding safety in movement and progressing from there.  

Presenter #2 was Quinn Henoch - founder of Clinical Athlete, competitive weight lifter, podcaster, presenter, coach, and physical therapist.  Quinn's talk, "A process to help barbell sport athletes get back to those gainzzzzz" described a roadmap to coach/rehab barbell athletes.  The path has bookends starting from where an athlete's current physical function is and working towards what's "done" for them. Initiation of the plan requires the physical therapist (or coach) to define their role and set expectations based on the stated goals of the athlete.  Completion of training needs to be valuable to the patient - not the therapist.  For some clients, "done" with a program is able to complete 1 activity or task or be able to tolerate a certain position or load.  When an athlete has a specific goal in mind, we as practitioners should understand the target and guide to that.  It's just like all the kids are saying these days: "Understand the assignment."  It doesn't matter what I think "done" should be for my patients - if they haven't reached their goal, I've missed the mark.  I definitely have fallen into this trap in the clinic where I've wanted someone to be capable of doing something that they're not interested in doing.  Or, right now, I'm working with a teenager whose parent wants them to start running after an injury, but the kid wants nothing to do with running at all. Done for this patient is walking, going up and down the stairs, and participating in PE without pain.  The approach has to fit the goals of the patient - not their parent and certainly not what I think matters.   

Throughout the weekend, there was an ongoing chat that allowed participants to interact with each other.  I particularly enjoyed the witty banter between the powerlifters and the weightlifters throughout the weekend.  As a person who likes to deadlift but who is fearful of destroying my living room if I try to snatch in my home gym, it was easy to see which side of those discussions I was on.  

Day 2: The Endurance Athlete

Presenter #3: was Ellie Somers (IG: @thesisuwolf), owner of Sisu Physical Therapy and Performance,  physical therapist, coach for running, strength, and businesses, and I'm proud to say, my friend, whose talk was "Communication with the Endurance Athlete." She previously worked at Seattle Children's Hospital. Ellie paired her own wit with the wisdom of Ted Lasso.  Ellie also emphasized the need to have a plan with a specific purpose that is meaningful to your clients and encouraged practitioners to highlight the strengths of their patients.  Too often in medicine we look at our patients and find all the things that are wrong with them.  That has to change!  Why can't we look at our patients and observe all the things that are great and empower them?  I've emphasized this approach in my patient care and loved the quote she shared "You're not in pain because you're weak, but getting stronger can help change your pain."  

Ellie also shared this article "The enduring impact of what clinicians say to people with low back pain" which I've read in the past and which is essential for young clinicians to read.  It's a 2013 study from New Zealand summarizing open-ended interview questions regarding healthcare interactions and beliefs from 12 patients with acute low back pain and 11 patients with chronic low back pain.  One theme was that patients had high trust in their clinicians and their beliefs were strongly influenced by what their medical providers said.  However, some patients did not find their clinicians to be competent or found the medical message to be a mismatch to their beliefs and rejected what the medical providers advised.  Almost subtle, a heartbreaking anecdote is a response from a study participant who shared that so many providers kept telling her back pain came from a weak core, she had an abortion because she thought she was too weak to carry and deliver a healthy baby. 

Presentation #4 was Chris Johnson, owner of Zeren Physical Therapy, triathlete, presenter, running coach, and physical therapist who performed a spoken word presentation which was a unique alternative to typical presentations.  Talking about running injuries, he dropped some true gems like "Tendons love tension; tendons take time (to rehab/heal)"  He talked about bone stress injuries with clinical pearl: Pain with unloading the leg should evoke a high index of suspicion for a bone stress injury (BSI) and when BSI is a potential diagnosis, no progression to running should occur until walking is pain-free. Another pearl was to stop worrying so much about footwear and foot strike position with running and consider other variables such as the sound of running instead.  I'll be very honest - I'm not an auditory learner, so I'm looking forward to re-reading the presentation when it gets sent out so I can further internalize the key messages and expand even further.  

Throughout the Summit, this same image appeared three times.  Isn't it nice that the presenters were so like-minded that this could happen?  The picture shows contributors to low back pain (and likely applicable to most pain) from this JOSPT paper from 2019. Too hard to read?  Doesn't that emphasize the point that pain is incredibly multi-factorial and the orange colored tissue-related factors are a relatively small contributor when you consider the big picture?  

In my opinion, the virtual format was excellent because no travel was needed, however that does lose some of the in-person benefits like networking events and dinners.  The organizers tried to combat that with a virtual Happy Hour on Day 2 where many clinicians hung out and chatted about whatever we wanted - which of course included the sports teams we support, where we're all at in the world, and lots of other interesting topics. 

Day 3: ACL Injury and Rehabilitation

Presenter #5 was Derek Miles a physical therapist with Barbell Medicine who is well known for his posts about pieces of meat (representing the human body) being poked, prodded, needled, scraped, taped, or treated with other common rehab approaches to demonstrate how some of these approaches are not doing what we think they are. (IG: @derek_barbellmedicine).  Derek kicked off day three's focus looking at the biopsychosocial approach for ACL injury.  He reiterated the need to have a plan with rehab, outlining that the first step after an injury is to get the patient back to being a human, then an athlete, and last should be consideration for their specific sport.  Walk, then run, then play basketball.  How do we achieve this? Post ACL injury or surgery, there's a long list of things that people can't do. Patients should know that, but clinicians can direct their attention and focus on all the things they CAN do.  Keep your athletes around their teams and with their teammates as much as possible.  Send them to practice with clear understanding of what they are able to participate in.  It's hard because there's a lot of discussion about what they shouldn't do, but make the injury an opportunity to learn the sport in a different way. 

Early ACL rehab may be boring, but it's the foundation to the later steps and often these athletes can do more than they think they can.  The ACL injury only directly impacts one limb... but there is another leg, two arms, a torso and a head that all need to continue functioning and training and should not be ignored.  If your clinic doesn't have sufficient equipment to load these athletes and get them stronger, sufficient space to get them moving, and have a way to test the athlete - you probably don't have enough to adequately rehab an ACL injury. The key takeaway: LOAD HEAVIER!  As Erik Meira so eloquently puts it, "It's the quad until it's not the quad."  Derek said he tells his athletes to do quad sets ALL THE TIME and then, when you hate them, do 5 more, and repeat again tomorrow.  No reps and sets.  Just constant.  I think I'll just writing 1,000,000 sets on my Medbridge HEP sheets from now on!

Presenter #6 was Laura Opstedal, owner of Build Physio in Montana who does lots of ACL Rehab and research and also previously worked at Seattle Children's Hospital. Laura reiterated Derek's points about quad strengthening and how important that is to athletic movements as well as the importance of testing athletes who have had an injured ACL prior to allowing them to return to activity.  For me, one particular quote stuck out from this presentation. "Look at your entire ACL rehab program as preventing a hip strategy and forcing a knee strategy.  Keep the trunk upright." I know I valued quad strength and testing before seeing this presentation, but I definitely was not doing a sufficient job avoiding the hip strategy.  In fact, I've been guilty of encouraging it sometimes, but Laura addressed the inferior patella pain that some patients feel with a knee strategy that I previously was avoiding, acknowledging that sometimes these athletes are going to have a little bit of pain and we need to know when that should matter and when it's ok to continue. ACL hip strategy study. It's only been two weeks and I've already changed this in the clinic. Also encouraged were achieving passive terminal knee extension within 10 days of surgery, having at least an 80% LSI before returning to run, don't ignore calf strengthening in our patients with knee injuries, and do more open chain knee extension. There were considerations for the slow stretch shortening cycle compared to the fast stretch shortening cycle and training them separately... yup, I never thought of my rehab in those terms before, though I do have some drills I like that focus on both, the new perspective is going to make a big difference for my patients. 

I definitely didn't do these presenters justice, but hopefully this "small" taste will encourage those of you who are rehab providers to start following some new clinicians and those of you who aren't in rehab who, for some reason, like to see what I have to say, hopefully learned about the complexity of pain and can gain some appreciation for the effort that any of your medical providers are putting in to maintain their licenses through continuous education and growth.   

One final note: "When a measure becomes a target, it ceases to be a good measure."  Using certain tests which are meant to be used to show progress and not to show culmination of progress is not the best approach.  I know I often feel like my return to sport tests are the end of my rehab.  This might be fine for some injuries like an ankle sprain where the athlete has been playing their sport without issue and I'm looking for a way to determine if symmetry has been restored.  But in the case of an ACL injury, the RTS testing often occurs to allow the athlete to start playing their sport.  This isn't good enough - and it's another chance to be less wrong tomorrow. 

Physical Therapists in the WNBA (an update)

The 2021 WNBA Season is under way and the Seattle Storm is off to a great 4-1 start.  Every year, I look forward to seeing opponent staff members I've gotten to know over many years working around the league when they come to town. With last year's season being held in an isolated Wubble (WNBA + Bubble) in Florida, it has been a long time since I've seen some really awesome colleagues and I can't wait to catch up with them.  This also gives me the chance to see how the WNBA is growing and I often wonder if the opportunities for women in Professional Sports Medicine are improving.  

In May 2019, I wrote this blog post which looked at teams having physical therapists in the WNBA compared to the NBA.  At that time, based on team rosters and Google searching, I was able to find only three (out of 12) WNBA teams with physical therapists - the Atlanta Dream had Jess Cohen, a dual credentialed ATC/PT who is now with the Portland Trailblazers (YAY WOMEN IN THE NBA!), Emily Wert with the Minnesota Lynx and the Mayo Clinic, and myself with Seattle. In the NBA at that time, 14/30 teams had PTs on their rosters, many of them dual credentialed (licensed in physical therapy in addition to another area of practice - common in sports are athletic trainers (ATC) or strength and conditioning coaches (CSCS)).  At that time, 3 WNBA teams did not list their Head Athletic Trainers on their team rosters and most did not list team physicians. 

I recently came across this May 2021 (August 2020 online) publication "Gender disparity among NBA and WNBA team physicians," which got me thinking it was time to research for an updated post to see what has changed. The article summarized an October 2019 Google Search for team physicians over the past 10 years in each league, identifying 125 NBA Team Physicians (122 male, 3 female) and 28 WNBA Team Physicians (20 male, 8 female) and also considered the geographical location for these providers. The Northeast Region had the most female providers, but the disparity remained.  The paper cited a previous publication for finding the following:

"In professional sports, O’Reilly et al. demonstrated that 28 of 420 (6.7%) current team physicians were women. Of the 420 physicians included in this study, 224 (53.3%) were orthopedic surgeons. Among those, 14 of 224 (6.3%) were women. The authors also noted that the greatest proportion of female physicians among professional sports leagues was in the Women’s National Basketball Association (WNBA), with 11 female physicians out of 34 (32.4%) as opposed to 3 of 158 (1.9%), 7 of 117 (6.3%), and 11 of 139 (7.9%) team physicians in the National Football League (NFL), National Basketball Association (NBA), and Major League Baseball (MLB) respectively."

I'm pleased to report progress across the WNBA!  In today's search, I started with checking all the team rosters, front office pages, and then went to Google.  I also used LinkedIn to confirm names when it was hard to tell if the findings were current. I can now report that only two WNBA teams do not list a Head Athletic Trainer. Google easily found the Dallas Wing's ATC (Branay Hicks), but the Indiana Fever search came up empty - except their job posting looking to fill the position in April 2021.  It would be unfair of me to ignore that the season is 1 month in and that with COVID challenges and last year in a bubble, a little grace for delayed website updating should be permitted.  

Storm Head Athletic Trainer Caroline Durocher (far left)

Additionally, when specifically looking at ATCs, PTs, and Strength and Conditioning Coaches, the gender spread is now much more women with 18 females and 4 males identified around the league among these three jobs and only two teams have male athletic trainers in the league, now.  (This assumes the Indiana Fever Athletic Trainer is a man, which has historically been true and appeared to be the case when I last watched some clips of their games.) It brings me great joy to see the Seattle Storm with a Head Athletic Trainer, Strength Coach, and Physical Therapist (in addition to massage therapist and acupuncturist and additional providers) who are all women.  Also, big news release today, the Seattle Storm return to a female Head Coach with Noelle Quinn taking charge following the retirement of Dan Hughes.  Moving even further than gender, the number of non-white athletic trainers has also increased and the diversity in that group is noticeable, which is even better!

The biggest difference I've found is the increase in physical therapists around the league. The Las Vegas Aces lead the pack with a dual credentialed PT/ATC (Michelle Anumba) as well as a PT who is also a Certified Strength and Conditioning Coach (CSCS) (Chelsea Ortega).  While I'm trying to help elevate women in sports medicine, Chelsea has a company called "Clinic to Field" which offers a 20+ hours continuing education course, "Comprehensive Management of Sports-Related Concussion" approved for PTs and ATCs.  The Phoenix Mercury also have a PT/CSCS on their staff, Derrick Nillissen.  I think this transition, though slow, is going to be the best thing for the athletes.  Athletic Trainers and Physical Therapists do very different work.  To have the knowledge and skills of both on team staffs can only help improve athletic performance.  

I tried to find the current team physicians, too, but most WNBA teams don't have those listed.  My search was unable to find providers for several teams, but some teams list many.  If the count I found is accurate, I found 12 WNBA team physicians who are male and 5 who are female.  The New York Liberty, who partners with the Hospital for Special Surgery, highlighted their team physician group best.  To be fair - no healthcare provider joins a team medical staff for recognition, so the fact that their names are absent isn't that surprising.  But because these teams create platforms, it seems like one potential way to elevate women in sports medicine from a league who is already doing so much to elevate women in so many different spaces. 

How about progress in the NBA sports medicine staffs? When I looked in 2019, I was able to identify 6 women among the medical providers in the NBA through both their Athletic Trainer and Strength Coaches Associations.  This time around, again from the NBATA and NBSCA listings, I found even more!  From the Athletic Trainer's Group - there were 19 dual credentialed ATC/PT providers and there were 12 women ATCs.  From the Strength and Conditioning Association there were 3 women, bringing the total up to 22 women working in the NBA's sports medicine departments!  This ignores massage therapists, chiropractors, dieticians, dentists, acupuncturists, and many other providers.  This time around, we've got two women with dual designations in the WNBA and NBA with both Chalisa Fonza and Sarah Walls covering the Washington Mystics and Washington Wizards.  Of course, this is all based on what's currently posted on the internet - so it could be outdated-  but it's still better than 2019 which makes me happy.  

Unfortunately, the medical staffs around the WNBA continue to be miniscule in comparison to the NBA. It's hard to compare the numbers because there are so many more teams, but the NBATA has 82 athletic trainers listed for 30 teams.  The WNBA has 12 for 12 teams. And the WNBA providers are still not permitted to participate in the organizations for the NBA's sports medicine providers, which just means we have less access to basketball-related resources and research and knowledge sharing, though the WNBA athletic trainers have also made gains in that area by collectively gathering without their own organization.

I continue to hope that eventually the WNBA will have more providers and will be able to organize league-wide like the big men's leagues all do.  Every year I get a handful of emails and messages from college students asking me how I got to work in the WNBA, and I can see that the interest and aspirations are only getting stronger as the league gains more and more popularity.  I'll continue to try to find ways to help the league, but for now, let's take a moment to be grateful that progress is occurring and be excited for all the women in sports medicine across the WNBA and NBA.

COVID19 is the WORST

I haven't written a blog post since December 2020 and had dramatically reduced my writing during the pandemic because I didn't think anything I had to say was nearly as important as what was happening in the world.  My last blog post came shortly after my dear Uncle Pete passed away and COVID was surging as people traveled for the holidays, celebrating Thanksgiving and Christmas without taking proper precautions.  

Glacier National Park July 2020

In late December, I started writing this post and I've kept a few parts because it's how I felt at that time. I really wanted to say that 2020 was the worst year ever but some great things also happened.  Babies were born, people got engaged and married, we bought condos and houses, passports were tucked away and exploring the beautiful national parks of the United States increased, there was time to complete home improvement projects that would otherwise remain on To Do lists, The Seattle Storm won the 2020 WNBA Championship in an isolated bubble, and the demon in the White House was evicted.   Instead, I'll say that COVID19 is the absolute worst.  The SARS-CoV-2 virus has destroyed millions of lives around the world, imploded economies and closed small businesses forever, had permanent impacts on relationships, and exposed real systemic weaknesses in the United States and in the world.  And it took both of my parents. 

I've missed blogging. I like organizing my thoughts this way.  Many of my past blog posts have tried to make connections between two things which may seem unrelated.  I like to draw these connections.  With this post I'm seeking ways to heal my broken heart and hoping that someone might learn something from my family's experience.  Perhaps I've gotten some of the facts wrong... the stress level was unbearable and I'm forgetting details.  It isn't intentional.  At the time of this writing, over 560,000 people have died in the US and 2.92 Million people worldwide from the Coronavirus.  (That makes the US about 20% of the deaths from the virus worldwide).  I'm sure others have similar stories of loss and sadness from the virus or from losing loved ones during the pandemic where they wouldn't be together.  My heart goes out to every single person who has lost someone they loved during the pandemic. I think it always must be hard to lose someone, but the inability to say a real goodbye or be surrounded by loved ones while mourning seems to hurt just a little bit more.  Here's how I remember what happened to my parents.

In December 2020, nine months into wearing masks, physical distancing, a lot of isolation, restricted travel, and not eating out, my Mom and Dad were hospitalized in Florida. Dad was admitted on 12/18/2020 and my mom followed the day after, 12/19/2020, which happened to be my dad's 76th birthday.  They both tested positive for COVID19, and they both had pre-existing conditions that put them at higher risk for getting sick and having a negative outcome.  They knew they were at high risk.  In fact, my Mom had been sick for almost the entire year of 2020.  They promised us they were being extremely careful.  They would drive over to friend's houses and stay in their car and talk to their friends over the phone just to see friends but not get close to them. They have such great friends who have been so supportive to us through this tragedy.

Most people asked right away "How did they get it?"  Honestly, we'll never know.  Dad worked at Home Depot, coming as close as he possibly could to his childhood dream of owning a hardware store.  He was "The Paint Man" and he promised he wore a mask during all of his shifts, washed his hands, and would even come home, remove his clothes next to the laundry machine and go straight to the shower so he wouldn't go near my mom until he was clean. There was a whole bin of Clorox wipes, gloves, disposable masks, and hand sanitizer right next to the door when we arrived at their home to pack it up... and cough medicine and tissues on the counter. They seemed well prepared. (They also had a TON of toilet paper.)  Perhaps Dad missed a hand wash.  Or maybe he ate a snack near someone asymptomatic but sick in the break room.  Or maybe his mask slipped down under his nose while his hands were covered in paint and he couldn't fix it.  He was admitted to the hospital first, but for sure they were both sick for several days at home.  I ordered a pulse oximeter while we were Skyping when I heard them both coughing maybe three days before they were admitted thinking there was really nothing more I could do to help them.  It was waiting when my siblings and I arrived to clean the place out.  I had been too late.

Thanksgiving 2019

Mom could have contracted the virus, too.  As I mentioned earlier, 2020 was a medically complex year for her, in and out of medical facilities and the hospital, so being around lots of sick people while also being vulnerable could have gotten her sick. They always shared things, so whoever got it was thoughtful enough to give it to the other one.  My heart kept telling me to get on a plane to help them, but I couldn't get over the fear of seeing all my own patients and their families at work and then getting on airplanes to travel more than 3000 miles to see my parents, knowing I could get them sick myself.  So I never went.  The last time I hugged them was Thanksgiving 2019. 

Initially when they were admitted to the hospital, my brother, sister, and I were able to video chat with each of them for a few days. Piece of advice: if you EVER go to the hospital and have the ability to bring your phone charger along, do it. Dad was on a COVID floor and put on oxygen right away and told me he felt crummy.  He said he was bummed they didn't give him chocolate pudding on his birthday - he got applesauce instead - so his sense of humor was intact.  Mom was admitted directly to the ICU because her blood counts were so low, but that was her baseline all last year, so she didn't really seem that different from her usual self.  (Side note: It's mindboggling that our healthcare system doesn't share information so that their medical records were not readily available. Why do I have to tell an ICU nurse my mom's list of diagnoses when she's in the hospital and her doctor's office is a few miles down the street?! I wonder how many people have died just because the US Healthcare System is so messed up. I digress.) 

Thankful for Video Chats

Mom had a blue ice pop and stuck her tongue out on a video call while my niece and nephew were around, never wanting anyone to worry.  She wasn't willing to allow people to "see" her without her hair done or her makeup on - saying she only wanted to video chat with us and my cousin Brad.  He was always her favorite and I'm so glad he was able to keep her company, too. We rotated who called them around our work schedules to occupy time and help us through and also called many times all together.  We spoke to every nurse who came into contact with them, asking how they were doing, getting updates every few hours or asking them to help us get in touch with Mom because she couldn't figure out how to use her phone, and then they would walk us down the hall with her phone so we could say hi to Dad. I spoke with the physical therapist who had seen both of them, and she advised me not to plan to take my mom home directly from the hospital and to let her go to rehab because she was so deconditioned. 

Soon we learned that Dad also had pneumonia and difficulty breathing. Mom was moved into Dad's room, having been deemed medically stable and no longer needing the ICU.  We were so glad they were together, but that was short-lived (unlike their 53 year marriage).  He turned a corner that night and took her place in the ICU needing a BiPAP to help him breathe and getting agitated if the oxygen wasn't at full flow.  On a BiPaP, you can't really talk - though you can move your mouth.  For a few days he was able to see us and respond to us and tried saying some words, including mouthing that he loved us, which will forever be his last words in my mind.  And then he got worse and we had to make really hard decisions. 

Here's where I hope we can be helpful to someone else.  Piece of advice: If your parents have comorbidities or are over 65 years old, sit down with them while they're healthy, while they're not in a medical crisis, while everyone is calm, and ask them about how they want things to go in the end. It is a HARD conversation, but it makes a huge difference when a stressful moment comes.  Tell them the importance of having a living will and sharing with you what their wishes are and where they're keeping the paperwork. Get copies if you can.  A living will (or advance directive) is a paper that indicates your wishes for medical care and should go with them if they ever need to go to the hospital so the hospital knows their wishes, too.  Let them handle the hard decisions for you and have it decided in advance.  Fortunately, we had sorta done that with our own parents, though they didn't bring the paperwork to the hospital and there was confusion in the heat of the moment, but still... we weren't completely in the dark.  Mom's oxygen stayed mostly normal throughout her whole hospital stay, but she had starting getting really confused right when things were happening to Dad, which I think was a blessing, but which also left it up to the three of us to decide what to do. 

Backing up for a moment, in 2018, I read Atul Gawande's book, "Being Mortal: Illness, Medicine and What Matters in the End." The basic premise is that Dr Gawande, the author, is a physician whose father is nearing the end-of-life.  He realizes that not only does he not have enough of the answers for his own family, but that he also does not guide his own patients down some paths that could ultimately help them. This was the first time I seriously considered that when someone is very sick, they may not want every single medical approach used to try to keep them alive. Some medical approaches can keep you in a coma for a long time and, while that’s your choice to use those options, it’s possible you’d prefer to allow life to end more quickly as the likelihood of recovery from those extreme medical treatments may be less successful with more comorbidities or older age.  This was exactly the scenario we faced with Dad, first, and then Mom two weeks later.  Both were presented with options.  One option would have kept them alive, but almost definitely would not lead to them ever going home and returning to their prior existence.  We really only considered these options while waiting to find out if the facilities they were in would let us come and say goodbye to them, but when we were told that would not be an option, we didn't want them to suffer.  This quote from the book stood out to me: “We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival but really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter- not just at the end of life- but all along the way.”  

The book lists questions that should be asked nearing end-of life such as "what are your fears?" and "what are your hopes?" and "what is your understanding of the situation and its potential outcomes." It also talks about weighing short term versus long term options, considering risks versus benefits, and gives praise to hospice and palliative care, which are not the same, and which are often misunderstood.  It was the beginning of my learning about end-of-life care and it led to a family meeting with my parents, sister, and brother, where we talked about some really key things, including their living will.  We also talked about their legal will and found that it was long overdue for being updated. (It still had my sister as my legal guardian if something happened to my parents.  I was 33 at the time!).  We discussed where they kept their finances, but they elected not to share their financial circumstances with us.  We should have asked them to add one of us as a beneficiary to the accounts in addition to them, but the likelihood of both of them dying two weeks apart like they did was really tiny so who could have known?!  We knew their life insurance policy company and numbers and knew where they kept their passwords for online information.  These are all things that we did right that I think other people need to discuss and made things easier for our family.  I had a manila envelope with a copy of their will and living will, a copy of their life insurance policy, their social security numbers, and a list of contacts they thought were important for us to reach out to if something happened to them such as their lawyer and accountant.

Anyways, I'm pretty sure it was Christmas Day when Dad tried to ask the nurses for something and they gave him a notepad to figure out what he was trying to say. He wrote "milkshake." He wasn't allowed to eat or drink on the BiPap, so they couldn't give him one and I'm shocked he was able to manage legible handwriting since it always looked like squigglies to me. My Dad ALWAYS loved Chocolate Milkshakes from McDonalds so when the nurse asked if that had any meaning to us, we all had to laugh.  I'm sure he probably thought life wasn't worth living if he couldn't have his favorite treat. 

Another piece of advice: find yourself a best friend who is an Emergency Medicine Physician and loves your parents as much as you do so that when you ask her for help with complex medical decisions, you know it's the best recommendation possible for your family.  This piece of advice will be nearly impossible for most people to achieve because you can't have my best friend and she's the world's greatest human, so maybe just find some medical friends you trust for advice when it's needed and know that making these decisions is really hard so having people to discuss them with is really helpful.  My sister also has a best friend who is a nurse who gave us helpful advice throughout this experience and is part of our family, too.  Having healthcare provider friends is just the best and really helps with big medical decisions. 

We said goodbye to our Dad, all three of us together, on a video chat arranged by a very kind nurse, about an hour before he passed away on 12/26/20.  The nurses were so helpful to us having already missed their Christmas time with their families to be with ours, and certainly having witnessed countless other people die in the preceding months. She asked us for a list of important names for her to tell him who was with him before they took him off the BiPap.  My Mom was somewhere in the same building, unable to be there with him, and not knowing what was happening.  I like to think he knew that we were with him and that it was OK for him to leave us behind.  (To be clear, I'm not OK with living life without him, but he didn't need to know that.)

So now, my mom is in the hospital in Florida, testing negative for COVID but still disoriented and confused, my sister is in Connecticut, my brother is in Washington DC, and I'm in Seattle. We need to get my Dad transported from Florida to Connecticut for his funeral.  And we can't have family or friends there - just immediate family up to 12 people.  And... we have to tell my mom what has happened.  Because she doesn't know.  And when we tell her, at first she doesn't understand, and then she doesn't remember.  And so, we have to tell my mom, via video chat, three days in a row, that our Dad - her beloved husband and best friend for over 50 years, has passed away.  Talk about watching someone's heart break.  Repeatedly.  Her heart was actually screaming, I think. The sounds that come from such intense heart break are unique and hard to describe. Even a few days later, on one of our calls just between the two of us, she asked me about Dad again to make sure it was true, begging me to tell her that he had not suffered, almost like she heard it in a dream and couldn't bring it to reality.  And then her nurses tell us they want to discharge Mom to rehab for her to get stronger and eventually go home, but of course she doesn't want to go home if he won't be there. I cannot even begin to express how much agony those moments held and how I keep replaying them over and over in my head.  My heart broke for her so many times and none of us could be with her - or even with each other.  The medical facilities all kept saying we wouldn't be able to come in and be with her - and for us to even try to fly there only to be turned away seemed like even more risk of getting sick or transmitting the stupid virus.  

I haven't gone into much detail about what the day-to-day looked like while they were in the hospital.  Honestly it was a bit of a blur.  I was talking to nurses or doctors between 4AM and 5AM PST (Seattle) because they did shift changes at 7AM EST (Florida) and then I would see my own patients.  Sleep cycles were disrupted, the stress of everything made eating habits and exercise routines fall apart.  My brother, sister, and I were in constant contact with one another and I would sit in my car during my lunch hour trying to video chat with my Mom as much as I could, and, early on, hoping to get some time to chat with Dad.  We quickly figured out the best times to call nurses and how to set it up so we could actually see Mom and Dad through various video chatting options.  Since we don't all have iPhones, we figured out that we had to do our video chats through Facebook or WhatsApp and knowing our options was important, otherwise we had to leave someone out and it was hard to take in all the information and then repeat it again later on. 

So Mom went to rehab.  She started to get better, but she was really, really sad.  So were we. She always had told us that she couldn't live without Dad and we all worried for her because we knew she couldn't stay in Florida alone.  My sister was looking for a place for her to live in Connecticut, calling around to all the local facilities, because Mom was pretty sure she didn't want to stay with any of us even though she didn't want to be alone.  My brother was on-deck, waiting to head to Florida to pack up all their stuff for a move.  I applied for FMLA to take time off when she was cleared to go home after my second vaccine shot and told her she better rest up because Abby's Boot Camp was going to be hard work.  (It's probably not a good idea for physical therapists to treat their family members, but I think that's because we would work them harder than our patients!) Everyone fell into roles and pulled their weight to get things going while we were also preparing for Dad's funeral which was going to be on 12/31/20.  I think it brought Mom a lot of happiness to see us all together in Connecticut.  I had flown home and wouldn't take off my mask the whole time I was with my family because so many people in the airports and on the plane weren't wearing masks and having watched my Dad die from COVID, I was horrified of getting the virus and spreading it. The day before his funeral, I Facetimed Mom and explained that we were going to have his funeral the next day and who we had invited. I asked if she wanted to attend virtually but I hated that none of us could be with her for it and thought it was reasonable if she didn't want to go through that alone. She chose to watch, so the next day, I Facetimed her from the cemetery so she could attend my Dad's funeral.  Was this the worst it was going to get?  Because it was horrible.  I had headphones in so she could talk to me and I could be with her, but the only thing she asked was to see her grandkids and my sister and brother for a minute to look away while my Dad was lowered into the ground.  That night as the rest of the world rang in the New Year, eager for 2021 to start, I sat alone in my hotel room on Facetime with my Mom, crying, talking about things we would try to do as soon as we broke her out of rehab.

Mom wanted out of rehab SO badly and we all wanted to bust her out, too.  She asked me what I thought she needed to be able to do in order to go home and, the true Physical Therapist I am, I told her she needed to be able to walk to the bathroom without help.  The minute she walked to the bathroom with a walker and only a little help, she called and told me I had better get ready to go to Florida.  But that night she started having pain.  All year long when she had been sick, she had been having some pain on and off, but she said this was a lot worse.  Talk about feeling helpless - what could I do?  I stayed on the phone while she waited for nurses to come in and try to get her pain medicine.  She was moaning and crying out.  I had to hang up to go to the bathroom and in the time I was gone, she left me a voicemail saying she wasn't going to make it through the pain she was having.  In the morning, she was taken to the hospital.  She tested positive for COVID19 again and was found to have other health complications.  It was time for difficult conversations, yet again. The doctors asked for our opinion on treatment versus hospice, but we knew her chances of survival even with surgery were not good and when we asked Mom, she very clearly told each of us that she loved us and that she was going to go be with Dad. I couldn't believe my ears.  Now my heart was doing the screaming. And so she was transferred to Hospice and we said goodbye and she passed away two weeks after Dad, on 1/9/21. A few days later, I flew back from Seattle to Connecticut, stood at the same cemetery, and watched my Mom join my Dad, feeling like I should have been Facetiming her like I had two weeks earlier. 

RIP Mom and Dad <3

I'm sure there's more that I could share that would probably help others in the future, but my heart has broken too many times writing this much.  I think you have to cry some serious tears to move through grief, and I've been doing my fair share. I hate crying in front of other people, but unfortunately I can't seem to avoid it these days. The aftermath of losing both of them so close together has been incredibly long and challenging and still continues.  It feels quite like an open wound that keeps re-opening every day or two as more paperwork or phone calls or bills are managed.  I've never been so grateful to have siblings and my niece and nephew.  We all had our breakdown moments and different struggles through the past three months.  We have different support systems, different jobs, and different home responsibilities.  At the end of the day, we've been there for each other, and that has made all the difference.  I can't wait for the pandemic to end so we can all be together and appropriately honor my parents.  The rest of my extended family and so many of their friends need their opportunity to mourn, too, and that has been neglected during the pandemic.  I hope that someone finds a way to put our pain to good use, and I can't wait for the pandemic to be under control.  Please get vaccinated when you have the opportunity and continue to wear masks and stay distanced.  It's not time to party yet.  Don't let your family members suffer the way mine have.