San Diego Pain Summit: Through The Years

This is the first post in a three-part series about the San Diego Pain Summit.  You can find part two here and part three here (coming soon).  This initial post is a summary review of the San Diego Pain Summit Talks prior to 2023. My first time attending was in February 2023, so I decided to watch as many of the previous years' videos as possible in the months leading up to the event.  My brain still hurts. Many of the talks led me to read research papers and as I moved through the work, a beautiful web was created as many of these presenters have connections to other presenters. The pain neuroscience and pain management world, it seems, is far-reaching, and also quite small.  Having nearly completed watching all the previous videos, and most of the ones listed below  multiple times, I've compiled the most impactful pieces (in my opinion), organized into three themes: pain neuroscience, pain management, and special topics. You can watch any - or all - the previous San Diego Pain Summit recordings here.

I originally started watching videos from the San Diego Pain Summit in order to learn Pain Neuroscience. Yep... NERD ALERT! Lately there has been debate on social media about the utility of teaching pain neuroscience to patients. The theory was that if patients understood how pain worked, they might be better able to tolerate it and potentially even have reduction in symptoms.  I have read numerous books and written posts about them including Explain Pain and Explain Pain Supercharged in the past, but  I don't actually teach most patients pain neuroscience.  I do, however, find continued benefit as a clinician understanding the neuroscience so that I can better apply it to the interventions I'm choosing.  The level of scientific research presented was impressive, and I’d be lying if I said I understood all this work, but I took away many interesting pieces that inform my patient care.  

Pain Neuroscience

Let's start with animals. In the 2016 Summit, Dr. Robert Sapolsky’s lecture was not recorded, but he permitted his Q&A session to be shared.  Dr. Sapolsky is a Neuroendocrine Researcher who studies stress at Stanford University and who also examined behaviors of baboons and other animals in Africa.  For this he reminds me of my childhood hero, Jane Goodall, though she studied chimpanzees. He is the author of several books, including "Why Zebra’s Don’t Get Ulcers,” which I recently read, and he shares a fun anecdote about how zebras tend to be very social creatures with short memories of their stresses. A zebra could be running away from a lion and once it's free, quickly return to eating grass, seemingly not perseverating on its recent close encounter with a lion. Their stress levels don't persist the same way human stress levels do.  If I can't find my keys in the morning, it's going to keep my stress levels high through lunch time, much longer than the zebra who just avoided imminent death. Dr. Sapolsky describes social grooming - when animals groom one another, removing parasites and eating them off one another - and how this behavior is a stress reliever with associated decrease in heart rate and cortisol (stress hormone) levels.  He explains that each person's level of optimal stress varies from the person next to them. Cortisol, when sustained at elevated levels during a chronic stress state, can lead to illness.  

Dr. Jeffrey Mogil talks mice and rats

Then in 2017, Canadian Neuroscientist Dr. Jeffrey Mogil discussed his research in mice and rats and the concept of translation: conducting studies in animals with the intention of extrapolating information to humans. A big problem in scientific research was exposed because the majority of studies were conducted using either one type of mouse or one type of rat to generalize concepts to all humans.  There have been studies which show that different types of mice reacted differently to the same pain stimulus - so if some mice respond and others do not, the outcome of an experiment would be entirely dependent on which type of mouse was used in the study. This same problem occurs with sex - a single type of mouse, and only males of that type, were studied and then conclusions were applied to middle-aged women, but men and women are not the same! This, he explains, is how pharmaceutical companies could lose millions of dollars.  Testing done with success in a male rat and then later tested on a human woman would show medication that doesn't work and the drug will never make it to market.  At the time of his presentation, microglia: immune cells in the nervous system that impact development of brain networks, were a newer area of study in pain research.  It was determined that microglia might contribute to pain in males, but not in females, who may instead use t-cells: white blood cells of the immune system from stem cells in bone marrow. Women experience chronic pain more than males – doesn’t it seem plausible that the underlying processes may differ? Thanks to protections for human subjects in research, animal studies and use of translation are necessary to better understand the cellular level activities, but understanding the limitations of the work is also vital. I have a new appreciation for the value of rigorous research methods. 

Also in 2017, Dr. Melissa Farmer, Clinical Psychologist and Co-Founder/CEO of Aivo Health, shared her work based on animal models she created to represent some of the patients she had treated.  She talks about memory: the capacity to encode, store, retain, and recall information and engrams: the brain's physical changes that represent a memory. Memories induce changes in your brain and this doesn't occur in a single location, but rather it exists in a network throughout the brain. When you think back to a moment that makes you very happy, perhaps you can link together what you saw, the sensations on your skin, smells and sounds and even how you felt, all different brain areas mapped together from that event. You can also have these memory maps for pain. She described synaptic efficacy: a nervous system pathway becomes more efficient at transmitting information when it is repeated, so in the case of a person experiencing chronic pain, the brain pathways are being used repeatedly and become more efficient at experiencing pain. Memories are based on learning and she also describes a key retention window within the four hours following education where there is opportunity to enhance memory through various approaches such as caffeine or incorporating multiple senses. Her presentation also illuminates research from Dr. Apkurian's (below) lab indicating how the limbic system, the brain’s emotion center, is involved in chronic pain. Dr. Farmer demonstrates how fear can create a memory that can be reversed through training via a dramatic video of a patient overcoming his fear of tarantulas.  

Stages for Chronic Pain

Dr. Farmer works with Dr. Apkurian. In 2018, Physiologist  Dr. A. Vania Apkurian shared his research on the underlying genetic predisposition for chronic pain that can be activated by injury. This slide from his presentation shows that some patients have a genetic predisposition to chronic pain related to their limbic system that, when triggered by injury, would induce transition from acute to chronic pain. The limbic system is the "older" part of the brain which houses behavior and emotion - and this bridges research between animals and humans as mice show these limbic system changes with pain, too. Acute pain is different from chronic pain in the brain. The brain re-organizes when chronic pain occurs, specifically with cortical and emotional changes and these may be partially reversible. The brain changes appear to imitate patterns seen with addictions and may indicate that a person experiencing chronic pain is addicted to nociception: the sensory nervous system's reception of stimuli which are capable of inducing pain.

The 2019 Keynote Speech by Dr. Antonio Damasio, a Neuroscientist at University of Southern California was a great talk about emotions and feelings and how animals have emotive processes but not all animals possess a mind to experience the consequences of feeling those processes. Thanks to Google helping me better understand the terms with an article that quotes Dr. Damasio, emotion: "a brief episode of coordinated brain, autonomic, and behavioral changes that evoke a response to an event; these are a lower level response." and feelings: a higher level response which provide a mental and perceptual representation of what is physically happening inside our bodies."

His talk brings us farther away from animals and into the human experience of feelings and pain. He states, "All living creatures exist, act, and behave... all living creatures share the imperative of regulating their life processes (homeostasis) such that life can persist, flourish, and project itself into the future..." In some (single cell) animals, the nervous system is not necessary for homeostasis where endocrine, immune, and circulatory systems are sufficient. Many sea creatures do not have brains and are still capable of survival. Animals regulated life long before the nervous system evolved but once you have a nervous system, you can have a mind and regulate life in a novel (and better) way.  The nervous system allows us to be conscious of behaviors, provides a mind that analyzes emotions to interpret feelings as good or bad. I think I particularly connected to Dr. Damasio's talk because of his explanations for the physiological underlying features of how we have pain from emotions such as grief.  When a loss occurs, there are internal physiological processes (just like if you were physically injured) that occur and which can be expressed as pain. 

Brain regions in emotions, pain, and pleasure

Dr. Damasio shares these anatomy images of the subcortical brain and describes the role of various structures in emotions and also production of pleasure or pain. I already discussed that there is an emotional component to pain involving the limbic system - and the amygdala is part of that system, responsible for fear and involved in pain. The nucleus accumbens is involved with pleasure. And the hypothalamus runs the endocrine system which interacts with the other components. As we need a mind to have feelings, we also need it to have pain as it is an experience, not an anatomical feature of the body. 

Pain Management 

IASP Pain Classification Guidelines

Moving more into pain mechanisms and management  is the 2021 talk by Dr. Annie O’Connor, Founder of A World of Hurt, discussing nociception and pain classifications.  She shared the IASP Pain Classification Guidelines which are referred to in the more recent Summits as the definition of pain was updated in 2020. This paper, written by a task force including Dr. Mogil (above), and Dr. Kathleen Sluka (see part three of this series) describes the changes made from the 1979 definition to 2020 with important notes that clarify meaning. These categories of pain: nociceptive, nociplastic, and neuropathic pain are further discussed in part two of this blog series and are mentioned in several Pain Summit Presentations.  Having classifications for patients based on their underlying pain mechanisms is a fundamental start to pain management. 

So much science! Sorry, but I'm not sorry for rambling about all this amazingness.  I've always enjoyed using my blog as a place for me to organize my thoughts and what I'm learning and this was just such a huge undertaking… hence, three parts! I’m personally fascinated by the neuroscientists, and even more-so, I'm amazed by their knowledge and their willingness to share where the limits of our science exist.  Each talk includes a Q&A session and there were multiple questions where the research hasn't been done in that area yet and so the answers were unknown. That's really refreshing and demonstrates how (relatively) new a lot of this understanding is and why it's important for clinicians to learn and understand it more.  Interestingly, I don't really find this information to be very useful for my patients, particularly because most of my patients are teenagers. Even if they were adults, I'm not sure they would need to understand this to help improve their pain or quality of life. So how can I apply this knowledge to help patients feel better? Numerous therapeutic approaches have also been discussed throughout the Summits, and I won’t include them all here, but I will point out the ones that resonated most with me and which more directly impact my own patient care. 

New Zealand Occupational Therapist Dr. Bronnie Lenox Thompson’s 2016 talk described Motivational Interviewing (MI) as a communication structure for patient care to be a partnership based on clinicians guiding patients with compassion and by evoking motivation for them to pursue their own goals. She includes three related concepts: cognitive dissonance: inner drive to hold all of our beliefs in harmony, but when a patient's beliefs are contrary to our beliefs, we may have to act in a way that opposes what we believe. This is a conflict in our own thought practices as we think but act in opposing ways. Self perception theory: we like to behave according to what we say and believe. In this theory, our emotions are related to our actions and behaviors.  Interpersonal warmth: being a nice, warm, supportive, listening person to encourage others to go along with what we say.  With these concepts in mind, giving your patient autonomy in deciding how to improve their condition considering your guidance is an ideal therapeutic alliance approach. 

Alison Sim demonstrates CBT

In another 2016 talk that considers communication and a psychologically informed approach, Australian Osteopath Alison Sim presented about Cognitive Behavioral Therapy.  She uses a great example of burnt toast to demonstrate the different ways a person could react to this event with different thoughts, emotions, and behaviors.  In the first scenario, the person burns toast, thinks "bummer!" and maybe feels indifferent, following with the behavior of toasting another slice of bread.  As the emotions and thoughts escalate to more negative, you reach the final scenario where the toast is burnt, the thoughts are "even the toaster has it out for me" and the emotions are angry with behavior kicking the cat. (I think we're talking about feelings rather than emotions, here, but I'm not here to pick it apart.) Patients who are more distressed and disabled may need a more intensive program than CBT, so she reminds us to match our treatments to the patient in front of us. I just received Alison's book "Pain Heroes" and am looking forward to reading it!  

Social Communication Model of Pain

I'm a physical therapist who STRONGLY believes that the words we use with our patients matter and that communication and therapeutic alliance are essential skills for optimal care. I particularly liked this quote from Physical Therapist and University of Florida Clinical Associate Professor Dr. Joel Bialosky’s 2022 presentation quoting Wambold 2017, “Some therapists consistently achieve better outcomes with patients than other therapists – and these differences are not due to random error, patient characteristics, or other systematic sources of error.” The amount of an observed outcome is attributed to something inherent to the therapist. Therapeutic Alliance is repeatedly mentioned in talks.  It comes up in Physio, Consultant, and Mentor Dr. Devra Joy Sheldon's 2020 talk along with the Social Communication Model of Pain, reminding us of the importance of social contributors to reduce shame in pain management and that we are inextricably linked to our patients' pain experiences. Also in 2022, David Poulter presents his talk about therapeutic alliance and patient-centered care, which come up in several other talks over the years and repeatedly reinforces the importance of clinician and patient relationships. He reminds us that We need to change before our patients can change. 

You may notice that nothing I've mentioned has been physical yet. And I'm a physical therapist. The Pain Summit includes occupational therapists, massage therapists, chiropractors, mental health providers, physicians, and patients as attendees, so the talks cover many different perspectives.  All the providers would need to move beyond communication and into their specialized interventions.  In 2017, Cor-Kinetic Owner and Physio Ben Cormack from London talked about exercise and movement. The numerous benefits of exercise - like improved respiration and cardiovascular endurance, increased strength, and reduction in pain, are all discussed. He describes the need to guide patients so they transfer from an external to an internal locus of control and help them to form new memories that are positive instead of the negative pain memories they've associated with movement. In 2018, Canadian Biomechanist, Physio, Chiro, and Strength and Conditioning Specialist Greg Lehman shared "When Biomechanics Doesn't Matter." These guys are really great presenters, but it's probably harder to make neuroscience funny where it's a bit easier to make exercise a bit comical.  Both of them demonstrate that specific exercises like the ones we frequently provide in physical therapy practice aren’t the necessary target for intervention – but more so getting patients to participate in the activities that bring them joy is a more optimal approach. I've previously written about Dr. Lehman's "Reconciling Pain Science and Biomechanics" course and here he negates numerous concepts learned in PT School about movement patterns and biomechanics that research does not support. It’s not that form and posture and movement patterns never matter, it’s just that for the general population, most of the time it is unlikely to be the driver of pain.  So yes, exercise is helpful for management of chronic pain.  The exercise probably doesn't need to be specific and is one piece of a more complicated puzzle. 

Body-Wide Symptoms of Long Covid

Which brings me to the special topics. I think these are really important and deserve far more attention than I’m providing here, but for my 12 subscribers to this blog, they’re key considerations for patient care. First, the 2022 talk by Physio and Athletic Trainer Dr. Daria Oller and also presentation from Physio and Professor at University of the Pacific Dr. Todd Davenport regarding Long Covid, Post Exertional Malaise, Myalgic Encephalitis, Autonomic Dysfunction, and Chronic Fatigue Syndrome are essential viewing for anyone treating patients with these diagnoses.  Dr. Oller and Dr. Davenport are both involved in Long Covid Physio which is an incredible resource for patients and clinicians. Our typical approach using progressive overload exercise for patient care is contraindicated for these patients and we need to spread the word that a pacing approach is indicated, otherwise you are doing harm.  It’s incredibly likely that if you are a physical therapist, you’re going to have a patient with post viral illness or chronic fatigue, even if it isn't Long Covid.  Take the time to watch these talks so you can be better informed.

And last, but very certainly not least, I encourage all healthcare providers to watch the 2022 talk from Dr. Lisa VanHoose entitled "Your Pain Evaluation Is Incomplete Without a Zip Code Assessment." where she goes into great detail about your personal biases and how zip code data can give you a lot of context and is easy to get.  This link (after you scroll down to "Discover the Power of Data") gives you the chance to enter a zip code and see numerous data points including household income, cost for medical insurance, how many people live in that neighborhood, diversity, and demographics. The data will be presented as averages and needs to be confirmed along with the story from the patient in front of you.  Understand that two patients could live a mile away from each other, and one have limited access to medical care, physicians, pharmacies, schools, green spaces, public transportation, grocery stores, and more – all of which impact their lived experienced and their health.  If you can't watch the full hour of her talk or you're not convinced, here's the five minute video "A tale of two zip codes" Dr. VanHoose shared that starts you thinking.  I found this talk eye opening and highly recommend it.

There were so many additional excellent speakers, many of whom I’ve gotten to know in some capacity, others who are juggernauts in the field. Some of the topics, such as pelvic health, are incredibly important but are a very small percentage of my patient population, so I couldn't relay the important pieces from those talks in a way that would help others. If you're working with patients experiencing chronic pelvic pain, I highly encourage you to go to the Pain Summit YouTube Page and check out the videos there. Other talks stood alone like the presentation from Dr. Sandy Hilton and Dr. Mark Milligan on clinician burnout, which is a really important topic and relevant, but is less specific to patient care.  I had to draw a few lines, and it left out amazing speakers. I’m sorry to leave everyone else out of this post.  Your work and your knowledge have impacted me, and I’m so grateful.  

Stay tuned for Part Two coming soon!

The Battle Against Fat Continues

Let's kick of some 2023 blogging with a controversial topic, shall we?  The Battle Against Fat continues.  If you've never met me in person, you may not know that I am fat.  I don't say that in a derogatory or negative way.  It is simply a descriptor of my body.  I'm not really short or tall - average in height.  But I am apple-shaped and thus, fat is an accurate adjective to describe me. I don't choose to be fat. In fact, I spent my first 30 years yo-yo dieting in an effort to make myself smaller, having great successes followed by even greater reversals. With support from a therapist and a dietician, I've learned to accept that this is the body that I've got and overall it does it's job pretty well, even if it isn't the socially approved size. That doesn't mean I don't wish I was smaller - it just means I'm no longer torturing myself to try to achieve that and instead strive to live healthily. 

cartwheel

I've previously written a few posts about my own experience with binge eating disorder and recognize that this impacts my beliefs about weight loss and body size. I have endured plenty of weight stigma and fat shaming both personally and professionally. My body size has come up in conversation as a healthcare provider during hiring processes and I've received derogatory comments from colleagues.  

In Physical Therapy World, there are physical therapists who think we need to be thin, fit, and muscular to do the job we do... but the way I look is not an indicator of my level of fitness and it certainly has no relationship with how smart I am or how much I care about my patients.  Imagine if we had to be capable of performing all the things our patients and clients do?  I wish I could shoot a basketball as well as some of the basketball players I've been fortunate enough to work with. I treat dozens of gymnasts and have never been able to do a cartwheel... I don't think that's because I'm fat. It's because I'm terrified of landing flat on my face.

I have also been a patient with doctors telling me that losing weight would fix whatever problem I was in for. Problems which also occur in people whose body weight is in the normal range on the (horrible) Body Mass Index Scale. There are numerous articles about how bad the BMI scale is, including this one. It was NEVER intended to be used in the way that it is. I went to have a sleep study a few months ago and the physician kindly explained to me that the findings would not be as accurate if I did a home study because the equipment used at home can't accommodate higher BMI as well as the equipment in the hospital does.  I asked my doctor, "If I was skinny, which test would you have me do?"  He said "the home test," so that's what we did. I respected him for presenting the data around the differences and for placing the blame on the equipment rather than on my body, and for ultimately treating me the same way he would treat a smaller person. 

Often ignored in this conversation are the kids I work with who also have higher body weight who whisper that they're so glad they don't have to work with the skinny PTs because it makes them uncomfortable.  The ones who have cried because a previous medical provider blamed their pain on their body, or that they hate their own bodies and are self-harming or thinking about it.  In some ways, my body size has made several teens comfortable enough to tell me there was an issue for which I got them help. In the clinic, it crushes my soul when I'm working with pediatric patients whose parents call their own kids lazy or fat rather than encouraging them to be active and work towards health. Or that time I told a little girl that she was strong and she looked me dead in the eye and said "only boys can be strong, not girls."  Or the kids who come into the clinic and walk on the treadmill only to be excited by how many calories they're burning. Are we even teaching them the right things? Where does this messaging come from?! 

I have been asked numerous times from parents how to help their kids lose weight, and when I point out all the things their body is capable of doing as it currently exists, it's like I have a third eyeball. Follow that up with asking about nutrition at family meals or physically active habits the family shares and you would think I'm suggesting families should be surviving on raw broccoli and running marathons together.  The American Physical Therapy Association has a Position Statement indicating that it is within PT scope of practice to "screen for and provide information on diet and nutritional issues" in collaboration with a registered dietician. The problem with this is that there are conflicting views about weight and what "proper nutrition" is in the United States. If all the doctors are skinny, the fat patients will never be heard or given medical care. We have a serious problem, but I don't think we're fighting the right battle. Instead of the Battle Against Fat, we should be fighting The Battle Against Too Expensive Nutritious Foods, The Battle Against Unsafe Play Areas For Kids, The Battle Against Decreasing Recess and PE in Schools, The Battle Against Unaffordable Child Care and Housing, and so many other battles.  Instead, our healthcare system is again doubling down on the Battle Against Fat, but now they're doing it against children. 

On January 9, 2023, the American Academy of Pediatrics published a new "Clinical Practice Guideline for the Evaluation and Treatment of Children and Adolescents with Obesity." I really didn't want to share the link to the paper because it's downright awful, but I also think people should have the chance to read it and make their own conclusions about the contents, so here it is. It's really long.  It's hard to include clips of the guideline here, so I've only selected this one clip about Parental Obesity which is considered a strong predictor of pediatric obesity.  And yet we're targeting these interventions on the children. 

The goal of these Guidelines is to streamline clinical practice for kids who are fat.  There are numerous recommendations made, and perhaps they may have done the right thing in suggesting that more kids get screened for metabolic disorders, but all the recommendations are based on use of the BMI Scale, which was created by a mathematician studying white men to find averages - never intended for use in children or even to be applied at the Individual level. The Guideline even hints at this, mentioning that BMI is not the Gold Standard to assess body composition, but it is easy to use. 

To be very clear, I believe that this guideline will be harmful and do not support the recommendations, and I am fully aware that this goes beyond my scope of practice as a PT, but not beyond my understanding as a human. Two particular recommendations worry me above the rest. Depending on BMI, recommendation #11 indicates weight loss medications should be provided for kids over age 12 and recommendation #12 directs bariatric surgery for kids over age 13.  Teenage girls who haven't yet started menstruating and will undergo considerable body development over the subsequent several years should not be having surgical interventions to change their digestive systems. I'm shaking with disbelief typing these thoughts. I know I am not a researcher.  I know that I am not a surgeon who could conduct surgeries like this on kids, and I don't know which surgical methods they would even use. Nor am I a pharmacist who would be prescribing kids drugs which could be needed for their entire lives rather than focusing on so many alternative options. I'm constantly seeing teens in the clinic with body dysmorphia, body dysphoria, eating disorders or disordered eating, and low self esteem and there is already data indicating the severity of depression in teens.  How much worse can it get as we start to prioritize weight loss even more?

I've finally finished reading the Guideline in all of it's terror, but before I could finish, I helped facilitate discussions at an event through the University of Washington on January 19, 2023 on a similar topic.  The event was part of the University of Washington Center for Health Sciences Interprofessional Education Program where students work to increase engagement with different medical disciplines. Thirteen programs including nursing, dentistry, public health, pharmacy, and physical therapy require their students to select from a variety of topics for interdisciplinary discussions and there were about 100 students at this event discussing Weight Stigma in Clinical Care. 

Participants received two articles prior to the talk, which was led by Dr. Lisa Erlanger, a Family Medicine Physician in Seattle, and Dr. Erin Harrop, a Licensed Clinical Social Worker and Professor at the University of Denver. First, "Everything You Know About Obesity Is Wrong," a publication from The Huffington Post written by Michael Hobbs that exposed some really eye opening patient testimonials about the harms of healthcare providers participating in weight stigma practices.  The article begins by demonstrating the delay between science finding solutions and medicine implementing them: The story of sailors dying from scurvy, easily cured by eating citrus fruits, but that fruit wasn't provided as different (more cost effective) options were tried instead, resulting in more death. Startling statistics were included that try to paint the picture of how unlikely it is to maintain considerable weight loss.  How many children will need to be medicated in order for one child to achieve and maintain normal weight?  I don't think this type of study has been done yet.

The other article, "How and Why Weight Stigma Drives the Obesity 'Epidemic' and Harms Health," by Tomiyama et al, an opinion piece from BMC. When will physicians catch up to the studies that show that weight cycling is bad for health and that weight stigma is even worse!  It's like this quote from the movie Mean Girls, "I don't hate you because you're fat, you're fat because I hate you." (Also - that movie is somehow 19 years old!)

So the session began with didactic education including review of the statistics and memorable anecdotes from these articles and additional research, followed by discussions of case studies.  Students elected to participate in this discussion for a variety of reasons which they shared - concerns about their families, wanting to learn how to challenge fat bias, growing up overweight as a child and experiencing weight stigma, wanting to learn how to talk to patients or friends battling weight-related challenges, and more. 

Even as a facilitator, I learned new things.  For example, "fat" as a word is a descriptor of having adipose tissue, however the moral judgement applied to using the word has created a negative connotation. More recently, "fat" has been re-claimed by those who live in larger bodies in a similar way to how "queer" was reclaimed by the LGBTQ+ community and the associated attitude towards these words are evolving.  Previously considered as a slur, "fat" has been  reclaimed as an identifier and we need to move forward to increase awareness and reduce stigma. 

"Headless Fatty"

Diet culture was discussed. An overarching set of societal beliefs that confuses health with weight, healthcare providers contribute to diet culture and weight stigma constantly and in harmful ways.  Diet culture encourages weight loss and correlates this with improved health, but it wrongly accuses fat as the cause for other conditions. It also moralizes things like: healthy food vs unhealthy, standing vs sitting, good movement vs bad.  It perpetuates a weight normative approach with a focus on BMI and having an "ideal" body weight. Health-ism occurs, as well, where providers may be accepting of higher weight AS LONG AS there are no metabolic health concerns. A common representation of diet culture was also mentioned: The "Headless Fatty" - showing pictures of large bodies without a face, a common, dehumanizing weight stigmatizing behavior. 

How does diet culture show up in healthcare?  The most common scenarios I've come head to head with are surgery being denied due to higher BMI and inadequate equipment availability. Orthopedic surgeons are frequent flyers in weight stigma, opting to avoid surgeries because there may be higher risk of infection in larger body sizes or predicted outcomes being less than desirable, sometimes including required weight loss prior to intervention. It's a frequent occurrence that poorly fitting blood pressure cuffs are used on larger bodied patients, which elicits inaccurate readings.  Waiting rooms at clinics may not have chairs that can accommodate a larger bodied person. Sometimes tests have limitations so they're not conducted on patients, thus increasing their risk of illness due to equipment and lack of training.  I already mentioned my own experience with sleep testing at home.

The discussion at UW did touch on the new Clinical Practice Guidelines, which was timely.  There were some resources shared including a blog from Ragen Chastain who writes about why the guidelines are harmful here. She included mention of unlisted conflicts of interest for many of the authors for the Guideline, as well as the American Academy of Pediatrics, with financial incentive from the pharmaceutical company that makes weight loss medications. I just feel icky reading this, but agree with her that while the authors may have good intentions to improve pediatric health, they may also be misguided and lacked input from eating disorder specialists and mental health providers who could have helped improve the guidelines to make them safer. 

Healthcare providers - if you congratulate your patients for weight loss without asking them about the behaviors around their weight change, you could miss serious diagnoses.  Like cancer, or an eating disorder, or celiac disease, irritable bowel syndrome, heart failure, diabetes, or thyroid problems.  You may have good intentions, but plenty of people lose weight and do not gain health - or even feel poorly.  The underlying goal should be health - not small bodies. Think about how you define health?  I've previously written a blog post about the different types of health, but I think that we, as healthcare providers, often exert our own beliefs of health onto our patients rather than hearing what they find important.  Usually people defining health choose functional answers, like ability to do certain activities.  The common medical definition of health is "Freedom from disease," but if this is the case, most of us will have periods of episodic or constant non-healthy time.  I used to think health was a thin body, but at my smallest, my mental health was poor and I was restricting so many foods, I couldn't maintain that lifestyle.  My smallest was bigger than many people will ever be, and it didn't bring me any happiness because I was in a constant brain fog from hunger and distracted by constantly wanting my next meal.  My biggest size didn't necessarily make me feel good, either, but at least then, I was able to eat and focus on my work and the challenges I faced were different.  Regardless, I have been the same person at every size I've been.

I'm sure I could continue discussing this topic ad nauseum, but I think I'll stop here.  Here's to hoping the kids stay healthy and safe. And good on you, University of Washington, for finding a place for these more challenging conversations in your medical programs' curriculums.

APTA Delegate 101

With my new pal Jenny Jordan

I was watching Gilmore Girls re-runs one evening in November 2021 when an email notification popped up on my screen from Dr. Jenny Jordan, Physical Therapist, Professor in the Eastern Washington University PT Program, former Chief and current Delegate for APTA (American Physical Therapy Association) Washington, and - I would soon learn - incredible human being. Jenny's email asked if I would be willing to discuss an appointment to a one-year term as an Alternate Delegate representing APTA Washington.  

With my long-time pal, Maryclaire Capetta

I've been an APTA member since starting PT School in 2011, but despite how much money I've spent on membership, at the time of Jenny's message, I really couldn't explain what the APTA did. I joined as a student when it was compulsory, and I maintained membership because it discounted board certification and allowed me networking opportunities that I occasionally took advantage of.  Also, it felt like it was the right thing to do, supporting the leaders of my profession.  I knew that Delegates existed and that they worked on making changes that impact the physical therapy profession from a nation-wide perspective, but I had never given any thought to being a representative myself.  One of my Professors in PT School, Maryclaire Capetta, now a long-time friend, has been a Delegate in Connecticut for many years. She took me to a Delegation event at CSM in Chicago in 2012, which was my first glance at the politics of PT.  Over my eigght years attending PT Pub Night events living in Seattle, I've gotten to know several of our local Delegates including some who are good friends. All of this to say - I knew Delegates existed.  I did not know how they came to be in their role, what they did, or why I would ever want to be one.

We set up a time to chat and Jenny explained the responsibilities and the time commitment and asked if I wanted to join for a one-year term. Washington had enough elected Delegates to serve two-year terms, but because our group is pretty large, if the time came to vote and someone wasn't available, we needed to have alternates to step in. Our Alternate Delegates participate in all the regular meetings along with the rest of the Delegation and contribute to the discussions and can work on developing policies, but they do not have the ability to vote unless an elected Delegate is unavailable.  The usual process to be chosen for the Alternate Delegate spots is to be the next highest vote getter on the ballot after the votes are counted. Unfortunately, there weren't enough names on the ballot for the 2022 cycle to fill the Alternate slots. I said yes, and after one year of a much deeper dive into what the APTA does, how new policies are formed, and learning about the problems the Association and the Profession faces, I'm here to share some of that with you.

First and foremost, I want to be very clear: I’m really new at this and there are many others who have been working in leadership roles for far longer who know much more about the APTA.  I was just recently elected into a two-year term as a Delegate for the 2023 and 2024 House of Delegates Cycles and have only attended one House of Delegates meeting so far. This is my understanding of things and my experience- it’s true to the best of my knowledge.  If I'm wrong, for sure someone should tell me!  

Let’s talk about Delegations first.

I've come to understand the Delegation to be a little like the US Congress, but instead of two separate chambers, ours are combined.  In US politics, there’s the Senate with two Senators from each state, and the House of Representatives, with number of representatives based on population of the state. In the APTA, all the Academies/Sections (think specialty areas of practice: acute care, pediatrics, geriatrics, orthopedics, etc) have two votes, and the Chapters (each state and Washington DC) have representatives based on the number of APTA members in that state.  Link to see full apportionment list by state, but here's a tiny snapshot of the top of the list:

Just like in American politics, states with more members have a bigger impact on the direction of the profession. States also have Alternates, which was my role, which are included in all the regular meetings, but don’t vote unless one of the elected delegates isn’t available. According to this document, there were 73,525 members in the APTA as of July 2021. This includes professional Physical Therapists and Physical Therapist Assistants, but not our student members, which push our total membership closer to 100,000. I was curious, so I looked for comparisons from other large medical associations and found that the American Medical Association has about 250,000 members, the American Dental Association has about 160,000 members, and AOTA, the American Occupational Therapy Association, lists about 65,000 members. 

Delegates meet with their Delegations throughout the year, led by their Chiefs. Regionally, Chiefs gather at regular intervals to discuss what’s happening across the country and what groups are working on at their local levels. The whole group meets annually at the House of Delegates, led by a Speaker of the House. The purposes of the House of Delegates meetings are 1) to elect new officers to the Board for the APTA, 2) to debate and vote on motions to move the profession forward, 3) for the elected leaders of the Association to have opportunities to meet, network, recognize individuals who have done impactful work, and 4) learn about different topics related to leadership.  This year, House of Delegates was embedded into an entire Leadership Conference, including many students as well as the Delegates. If you want to find out who your Delegates are, you can search the rosters here. 

I've said Delegates too many times already...  So how about some of the work they're doing? How does a motion come to be?  In January, the elected representatives from Washington met for our regularly scheduled monthly meeting to brainstorm ideas for work that we would like to see done by the Association.  We came up with several possible ideas and broke off into smaller groups to do some early research on the topics, come up with basic rationale for why we felt the concepts were important, and then expand the concepts into more detail at subsequent meetings.  The group voted on each idea, deciding which ones we wanted to dedicate our time and effort to, and which ones did not seem to be optimal for continued work.  This year, Washington presented three motion concepts to the House of Delegates and members of our group spent about six months working on them. 

An important piece of motion development is collaboration with other Academies or Chapters.  Consider that priorities around the country differ, payment models are not the same state by state, challenges to patient care practices differ depending on the Academies and variation between settings.  So early on, we identified potential groups that might be helpful as co-makers to the motions, helping to develop statements in support, who would likely want to pursue the same outcomes.  For our three motions, we collaborated with three different Chapters and one Academy as co-makers.  I primarily worked on RC 16-22, APTA as an LGBTQIA+ inclusive organization in collaboration with the Academy of Leadership and Innovation and PT Proud, which ultimately passed by over 90% vote.  

There's a whole process that the Chief facilitates to take the motions and escalate them up the chain of the APTA to be reviewed by a Reference Committee (which I think makes sure we're not going to violate any of our own previous rules and regulations or any laws, and gives input on the language being used) as well as sharing the motions with the rest of the country's delegates for feedback and discussion.  Washington's Chief, Murray Maitland, had to do a lot of work to get our three motions reviewed and heard on the floor. Over time, updated versions are developed and the content and language can change until the minute it is debated on the floor of the House and voted on.  

This year the House had 22 motions up for debate, but did not end up completing the whole list, running out of time.  The whole operation follows Roberts Rules and Parliamentary Procedure and stays on time with an agenda - which can be amended - but which this year's delegation voted not to amend to increase the time.  It was really unfortunate because there are some really important issues that were waiting to be voted upon.  I pretty much live-tweeted the House of Delegates so you can find a barrage of my tweets from August 14th and 15th from me sharing how things were progressing as we worked through debate and voting.  

I could probably write a small book about my experience at the House of Delegates, but since I will

 Bringing RC 16-22 to the floor for vote

now have two more to attend in the future, I think I'll save those for another day.  It was incredibly exciting working on an important motion that will hopefully improve Diversity, Equity, and Inclusion in our profession.  It was amazing meeting the physical therapists who have worked so hard to shape our profession for many years - and who the leaders of tomorrow might be.  I hope this is helpful to anyone who is considering APTA membership. Know that your state IS impacted by your membership and that a small group of new members could influence how many delegates your local group has to vote on issues in the future.  I also hope that it helps more people to understand what APTA Delegates do - so if you have an issue, APTA member or not, find your local Delegates and share your concerns so they can try to help.  Feel free to reach out to me if you're looking for ways to get involved!

Blood Thinners, Anyone?

Pulmonary Emboli

I couldn't let today go by without acknowledging an important one year anniversary.  Woohoo! Let's celebrate!  On this day, one year ago, I learned that I was the proud owner of "a shower of pulmonary emboli." They're gone now (at least, I think they are... once you do treatment, you don't actually test again unless you have symptoms!)  Thanks to six months of miracle drug Eliquis - a blood thinner that meant I bruised if I came even close to bumping into furniture - my lungs are back to functioning.  So now that the scare of having blood clots in my lungs is gone - and since this 2022 paper indicates that having COVID-19 can increase your risk of having a blood clot (deep vein thrombosis or pulmonary embolism), I figured I would share my story in case anyone notices anything related.  Here it is.

Before my parents got sick from COVID, my mom was pretty sick for all of 2020.  She was having regular blood transfusions and her physicians couldn't figure out why her iron levels kept dropping so low.  There were many months of hospital visits during which she had to go alone because of COVID.  She really hated that.  Anyways, feeling very helpless for my mom's medical condition, I started to donate blood.  As a non red meat eater, I had tried donating in the past, but had always been rejected from my own anemia. I knew I couldn't possibly provide as much as she needed - plus we weren't even the same blood type and lived 3,000 miles apart.  I know she appreciated it because we texted back and forth at our appointments and she shared what she was going through. Maybe someone else's mom got my blood in Seattle and their daughter was donating in Florida. 

Click to Donate Near You!

Anyways, I went to donate blood in early April 2021. As usual, first they checked my pulse and heart rate, and my pulse quality was OK, but my heart rate was 120. (Normal resting heart rate should be between 60-80 bpm so all these readings are high.  Maximum heart rate can be estimated by 220-age, so the maximum my heart rate should technically get is 184).They decided to check my iron and if that was good, they would give me 10 minutes to get rid of the "white coat syndrome" - which I guess sometimes even health care providers have, where your heart rate or blood pressure goes up because you're anxious at the doctor's office - but which I've never experienced before.  My iron was way too low to donate, so the nice lady at the donation center told me I should make an appointment to see my PCP.  I thought - no way! This hadn't happened since I started donating blood the year before, but my iron was often too low when I tried to donate in high school and college. I figured I didn't eat enough dark chocolate or spinach that week.  After all, the timing of this blood donation was in my third week back to work after being on FMLA and my grief felt like heavy fatigue for weeks.  I just went home, rode my bike for 20 minutes, and made a turkey burger for dinner. 

A few days later, I was walking up a flight of stairs with a coworker when he asked me if I was ok.  We had walked into work together many times before, always taking the stairs, so for him to notice my breathing was surprising to me.  I thought maybe I was breathing differently with the mask I was wearing that day, but I didn't feel bad otherwise. Thinking about the failed blood donation, I grabbed the clinic pulse oximeter and my heart rate was again in the 120's.  I felt fine, so I continued the day, treating my patients, not really noticing anything.  The next morning I showered, got dressed, and was tying my shoes and with the bending over motion, felt instantly short of breath.  I checked my heart rate by hand, but didn't believe my own count so of course I dug out my own pulse oximeter and my heart rate was in the 130's. Having a quick moment of panic, I recalled my dad having a heart attack when I was eight - he was 48 - and thought - maybe I should get this situation checked out.  So I hopped onto my PCP's patient portal and made an appointment for later that afternoon and went to work, figuring it was too late to cancel my morning patients and if I wasn't moving, I felt ok. 

At work I took the stairs again, but this time, when I got to the top, I had to sit down, unmask, and catch my breath. I was sweating and had a little bit of pain between my shoulder blades. Something definitely wasn't right. I told my boss right away that I needed to cancel my afternoon patients to see my doctor and explained what was happening.  It only took demonstrating one repetition of a 15 pound goblet squat to a patient for me to know it was getting worse.  I finished my patients, sat down to write my notes, rechecked my heart rate at my desk - now 154 - and felt the veins in my neck pulsing.

As previously mentioned in other blog posts, I have a BFF who is an emergency medicine physician. Everyone should have doctor pals they can call in an emergency... but this still didn't feel like an emergency.  Still, I called her as I was driving to my doctor's office and she advised me to cancel my appointment and tell them I'm going straight to the Emergency Department.  Then, instead of going directly to the hospital, I should go home, get my cell phone charger, a hoodie, maybe some pajamas,  my toothbrush, and a book, and then go to the hospital.  (If you EVER need to go to the emergency room and have enough time to make these sort of decisions, bring your cell phone charger!).  She also wouldn't hang up the phone until I got there.

The walk from the parking lot into the emergency room left me drenched in sweat.  The lady at the

waiting on CT Scan

check in desk asked me the COVID screening questions, none of which applied, but since I was sweating, she didn't believe that I might not have just had a fever breaking.  So she asked a nurse to come take my vitals right away, heart rate still in the 150's, but since my temperature was normal, I could sit and wait in the lobby.  It was a long wait.  Honestly, without moving, I could still feel my heart racing and some aching between my shoulder blades, but otherwise I didn't feel that bad.  When they took me in for my exam, the physician asked me what I thought was happening and I told her I thought I had a pulmonary embolus but that it was weird because I didn't really have any chest pain.  S

The next moment could have gone so differently, but instead of just shrugging off that I'm "just" a physical therapist, she asked me to defend my own diagnosis. I explained that my schooling educated me enough to know that if I saw a patient that described these symptoms, I'd be worried, but that one course in the cardiopulmonary system in grad school and another in college made me far from an expert.  I explained that I had flown across the country five times over a three week span just a few weeks prior without any hydration and immediately following my vaccinations and under intense stress.  (At no time did anyone, including myself, think that my vaccination caused these blood clots.  However - I did get sick from the vaccines, likely because I was not willing to unmask to drink any water or eat anything on my flights immediately following them. Plus grief.)  She asked if I took birth control, because "the chance of clots is 2 to 6 times greater among women taking the pill compared to those who don't use birth control" and when I said yes, for nearly 20 years, she felt confident that blood clots were the appropriate place to start the diagnostic hunt.  Let me tell you - some people get REALLY awkward talking about birth control.  I am not one of those people.  Three different medical providers AND a social worker came to discuss birth control with me.  I'm not sure why it was like that... but I do think we probably should be educating teenagers more about this risk if they're considering mixed hormone oral contraceptives, just so they're educated.  Maybe my doctor told me about this risk when I was 18... for sure I do not remember. 

The doctor applauded me as a healthcare worker listening to their body because I guess that's something we're really bad at doing.  I did wait several days, I guess, but it for sure could have ended much worse.  She felt that my assessment was reasonable, so after a Covid test, which was negative, we proceeded through a chest X-Ray and D-Dimer blood test.  When the blood test came back positive, there was a chest CT Scan and then a diagnosis of "a shower of blood clots" in my lungs. I was on blood thinner medication six hours after leaving my desk and held on observation in the hospital for the night.

At which time I finally called my sister in Connecticut and my brother in Washington, D.C., and told them where I was. Let me tell you - being alone in the hospital because of COVID restrictions limiting guests is horrible.  I didn't want to tell too many people where I was or make a big deal out of it because we had identified the problem and medication had been started.  The doctor told me I would feel better fairly soon, and I was back at work five days later with a 20 pound lifting restriction.  I spent my down time searching for research papers about exercising with pulmonary emboli because my doctor told me that I was OK to be active as long as my heart rate stayed under 150... but it was still 150 at rest, so it started with walking for 10-20 minutes or biking without resistance.  I used the elevator at work for a few weeks.  I didn't lift weights. And slowly, the pain between my shoulder blades started to improve and I was able to go up the stairs without stopping.

This week, I returned to the scene of the crime and I was able to donate blood again!  I have to take iron supplements and they make my tummy hurt, but I've found ways to manage that.  My resting heart rate was 84 when I went - still a little bit high, but considerably improved.  My cardiovascular endurance is still limited, but I can ride the bike for 45 minutes.  More difficult for me is the time it takes to recover.  I can't do cardio on back to back days and my legs sometimes feel like bricks after I ride.  I think it's more deconditioning... but it's slowly improving.  And my personal favorite - I can lift over 150 pounds when I'm deadlifting, working my way up to 200.  I feel like that's going to happen before the end of the WNBA season that's about to start.  Last season started about 2 weeks after I was in the hospital and I remember that I couldn't yell/cheer because forceful exhalation made me light headed to the point I thought I might pass out. I can't wait to test that out again!  Other than wearing compression socks and taking aspirin to fly on airplanes, I feel like I've recovered pretty well.  I don't recommend it for others, though.  It isn't fun. 

Please donate blood if you can.  It's basically a free health screening for you and a life-saving gift for another person.  It takes less than a half hour to do and you can repeat every 2 months. 

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.

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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.