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.

Science of Social Isolation

A few weeks ago, during the insanely stressful period of the United States Presidential election on top of a global pandemic, I wrote this post on Facebook:

Since that time, things have gotten progressively worse.  Last night I got into my car after work and burst into tears in the parking garage.  Instead of driving home, my car (not a self-driving vehicle, but somehow able to drive without my brain functioning) drove to my dear friend's house, still in the beginning of her post-Thanksgiving quarantine, and I melted on her front doorstep.  As my mask collected my tears, I crumpled.  I definitely didn't see it coming, and for certain I'm not ashamed to admit that I had hit a complete and total breakdown.  I'm not sure if sharing this helps others to realize they're not alone right now in whatever deep, dark place they might feel like they're existing in.  Maybe this makes people more sad.  But I've now reached the portion of the pandemic where spontaneous crying is occurring, and I know that I'm not the only one in Struggle City.

Why now?  Maybe it's the new restrictions from the Washington State Government shutting down the gym which was the only place I was really going (besides work, the grocery store, and Home Depot).  Maybe it's the winter in Seattle where the days are gray and cold and the sun rises late and sets early so you feel like you're in a Stephen King novel all the time.  Maybe it's the holiday season without being able to see family or friends, none of the usual festive parties and seeing everyone's trees and menorah's all brightly lit.  Thanksgiving with a close friend was really great - but we didn't shy away from acknowledging that the world is weird and so heavy right now.  Or maybe it's the fact that I attended two virtual weddings and a funeral in the past few weeks, all of which would have been supremely better experiences if I had been there with my family and friends.  The list of possibilities for why this hit me now goes on... but those seem like enough.  I'm sure you can come up with your own.

The reality is that I was not built for social isolation. Early in the pandemic, I felt like going to work was enough social interaction for me to keep on thriving. It isn't anymore. You can sense the weight of the Coronavirus in every corner at work, on every coworker, at every socially distanced lunch break, and with every single patient/family.  As a 100% extrovert, I feel like a battery that has been running on empty for so many months. Drained. Nothing left to give. My usual options for battery recharging are not available... dinner with friends, eating out, traveling to see my family, traveling to escape the Seattle weather and find sunshine, hugs, the gym, occasional visits with my friends' pets, sitting at a bar, sporting events, movies... another list... I'm rambling.  It doesn't energize me to work out at home or go for a walk alone.  Isolation in a different place doesn't change my feeling of being alone.  Skype calls - though they definitely help - are just not the same as dinners and happy hours or brunch.  Remember brunch?!  I don't bother with take-out meals on my own.. seems silly when I can just make something at home and save money. Why take a day off from work to do absolutely nothing? Amazing that bathroom renovation and painting my whole house boosted me up for a while.  If this is making you sad or depressed, I'm truly sorry.  I'm not depressed... I'm just insanely aware of being alone, emotionally exhausted, and feeling like the world is too heavy.  How did Atlas do it? If this is how I feel, I can't imagine how my superiors or those who actually work on the front lines are doing it... cuz I'm not even treating patients suffering from COVID!

So what's a person to do when realizing that social isolation is kicking them in the face?  The options are pretty limited right now.  Today I started looking up research about the science of social isolation.  With patients having chronic pain, we teach them how pain works to try to help alleviate it... maybe learning about social isolation will help me cope?  I used ResearchGate to look at this 1988 paper "Social Relationships and Health" by James S. House. Interestingly, I also came across a monthy by month list of citations for this paper's abstract and, not surprisingly, it has been cited an average of 2,000 times per month in 2020 where it would only have gotten a few hundred citations before the pandemic

Here's what I learned:

1: Prospective studies have found an increased risk of death in people who have low quantity and sometimes low quality social relationships.

2: There has been longstanding curiosity with regard to which comes first: do people who are less integrated into society have bad health or do people with bad health integrate into society less?  Gotta love a good chicken or egg conundrum.

3: The connection between mental health and physical health has not been studied with nearly enough depth or breadth.  Before I started learning about mental health - and giving any thought to my own - I'm not sure I even believed they were so intricately related.  Now, I don't want to go more than a week or two without seeing one of my mental health providers.   

4: My favorite quote: "...what was consequential for health about social relationships was their supportive quality, especially their capacity to buffer or moderate the deleterious effects of stress or other health hazards."  

5: A 1965 study looking at 4775 people between ages 30-65 examined four types of social ties: marriage, contacts with extended friends and family, church membership, other types of group memberships and the impact on mortality.  It was at this point that I realized the articles I had skimmed - and this one - don't fit the problem I'm experiencing.  I have really, really, really wonderful relationships.  About 90% of the time I'm at grossly unaware of fact that I'm not married... sure underneath and when brought to the surface, that's missing, but I don't sit around thinking about it on the regular.  But truly I have so many great family and friendships... and right now I can't be around any of them!  Does their absence have the same meaning?  

So I searched for more papers and read more abstracts.  Because I'm a science nerd and... seriously what else do I have to do?  I'm going to be here sitting on my couch either way - I could do this, read a book, or continue binge watching Friends.  At least this is a little bit different, and I can share it with you.  I scanned abstracts that look at the neurobiology of loneliness, the relationship between social isolation and cardiovascular illness, saw lots of information on social isolation for the elderly population, psych papers looking at depression, and then:

"How the  Covid-19 Pandemic is focusing attention on loneliness and isolation," a June 2020 paper from Australia.  Here's what I learned:

1) Social isolation (absence of social connections) is not the same as loneliness (subjective dissatisfaction with relationships).  I feel loneliness when I find myself single at a wedding... I feel social isolation when I haven't seen my parents in a year and my friends in several weeks as we are responsibly distancing ourselves to prevent COVID spreading.  Both social isolation and loneliness have been shown to predict premature mortality, depression, cardiovascular disease, and cognitive decline.  (Hello brain fog!)

2) I'll give you a hint at the recommendations for how to improve the negative feelings: exercise and social interaction.  

And so, I'll end with this.  Check out this image and find out where you're at.  If you're in the green and yellow - maybe you have the capacity to check in on your friends to see where they are.  Yesterday I was in the red.  Thankfully, today I'm more yellow/orange and had the ability to check on someone else.  But yesterday I needed someone to check on me.  Know that it's ok to tell someone you need help.  Tell me!  Tell your neighbor.  Tell your family.  Tell someone.  Just saying the words "I really need help right now" made all the difference in letting some of the weight go.  No shame in tears... I know mine will come again.  In the end, we're all going to be ok.  We're all going through this together.  It sucks for everyone.  It sucks for parents who are schooling their kids at home and can't get a moment of quiet alone time - and it sucks for those of us who are alone.  It sucks for healthcare providers, teachers, grocery store workers, real estate agents, business owners, and delivery people.  Honestly, it's pretty hard to find someone who hasn't been impacted by the pandemic at this point... and it took every ounce of strength not to lose my mind on the parents I saw congregating at the playground today, maskless, and too close together, when I dragged myself out of the house to go on a physically distanced and masked up walk.  We all have an obligation to help keep each other safe, now.  We all have an obligation to care for our friends and family.  Let's hope the vaccine is near and that we can go on airplanes again in 2021!  Good thing I'll have some vacation time saved up. 

Book Alert! The Gift of Pain

Hello, blog readers!  I'm realizing now that I never concluded the cross country road trip blog posts several weeks ago.  I must have been so excited to arrive in Connecticut to see my family, it slipped my mind.  Kristen posted about the end of our journey here for anyone who thought we fell off the face of the Earth.  I flew back cradling a container of Clorox Wipes like they were my newborn baby, extensively cleaning my whole seating area, and, because I had no alternative, an entire bathroom of the plane. I'll send you the cleaning bill, Alaska Airlines!  Now I'm back home in Seattle, and I returned to a huge stack of books and audiobook CDs waiting for me at the library pickup as the world is slowly starting to open back up!

On January 6, 2020, before we knew about the COVID-19 Global Pandemic and had masks perpetually glued to our chins, while there was still air in the lungs of Breonna Taylor, I wrote my first blog post of 2020 entitled "I'm a Book Nerd."  I outlined six books I wanted to read this year related to PT and was already underway reading "The Graded Motor Imagery Handbook" - which I highly recommend to PTs, particularly those who work with patients experiencing chronic pain.  On my list were five more books, but with the closure of the library and my decision to buy a condo during a global pandemic limiting me from spending money to buy books, I couldn't get the books I intended to read.  I've been reading A LOT of alternative books since then, and with the re-opening of the library, I finally dove into "The Gift of Pain: Why We Hurt and What We Can Do About It" by Dr. Paul Brand and Philip Yancey, previously titled "The Gift Nobody Wants." 

The introduction was written by Dr. C. Everett Koop who served as the US Surgeon General from 1982-1989.  Dr. Koop starts the book off with a quote that resonated with me - and which I whole-heartedly believe in as a clinician - "When you examine an abdomen, watch the patient's face, not his belly."  I'm not the right person to say if the eyes are truly the window to the soul, but for sure I believe that the eyes are a window of truth with regard to pain.  My patients experiencing pain show their experience with a crinkled brow or looking away, sometimes covering their eyes, and on the rarest of occasions, tears.  

I must not have read a synopsis about the book prior to adding it to my list, because I was surprised to read the first pages of the book... a heartbreaking story about a little girl who genetically could not experience pain. Dr. Paul Brand was a hand surgeon whose career focused on patients with leprosy, a condition characterized by the absence of the pain experience.  Pain, after all, is an experience.  It is interpreted differently by each person and is dependent on unique understandings of- and interactions with- the environment.  And so, a four year old girl who could not experience pain tries to find ways to interact with her environment, ultimately participating in self-mutilation of her fingers and stepping on nails without awareness and continuing to walk on them.  For so many people, we try to find ways to get rid of pain, but as I've learned working in the Seattle Children's Pain Medicine Clinic, the goal often needs to be to better understand pain and learn how to optimally function despite it.  Too many people need to learn how to embrace their pain because rejecting pain allows these negative sensations to dramatically interfere with life.  

The book is a memoir of Dr. Brand's life in parallel to his journey to understand pain.  He begins with his childhood experiences in India, watching his father serve as a Missionary who also provided medical care to the local villagers.  Later he describes his schooling and career, in London during war time, and developing into a hand surgeon ultimately devoting much of his career to patients with leprosy. There are cultural influences of different world regions and comparisons between medical and community practices in India versus the United States, interactions with nature and animals and their use in scientific research, and vivid descriptions of Dr. Brand's unique interactions with pain.  In some ways it reminded me of the book we read in PT School for Cultural Competency called "The Spirit Catches You and You Fall Down," which was also an interesting approach at looking at the American Medical Model and how it conflicts with the beliefs and practices of different cultures. 

Free photo 96827 © Chrisharvey - Dreamstime.com

This book was published in the 1990's, but it's describing Dr. Brand's understanding of pain from at least 40 years of patient care.  I was repeatedly surprised at how deeply he understood pain, and the ways he tried to apply his knowledge to various conditions such as the peripheral neuropathy commonly observed in diabetics or HIV/AIDS. The book explores fundamentals about how the brain and nervous system interact, stigmatization of people who look different than "the norm," how Dr. Brand learned to conduct surgeries by operating on cadavers because the procedures didn't yet exist to help his patients, and some incredible medical successes. The stories are simultaneously heart warming and gut-wrenching, the full spectrum of emotions.  I'm six years into my PT career and this book helped me to see how I'm really only beginning to touch the surface of learning about pain and how important the biopsychosocial model of practice truly is.  How different my patient care could have been if I had known sooner! It's no wonder groups like the Level Up Initiative have been pushing for healthcare transformation... healthcare education too frequently misses the mark on the importance of therapeutic alliance and bedside manner. Medicine and the understanding of the human body has advanced considerably since the time Dr. Brand treated patients, however we, the modern day healthcare providers, have so much to learn about these foundational concepts. 

Several stories were memorable, but one that fit closely into physical therapy was when Dr. Brand's patients had successful surgeries on their hands, restoring function previously thought to have been permanently lost, only to come back a few months later with severe wounds on their newly functioning extremities.  Dr. Brand would carefully bandage the patients and they would heal, but then they would have recurring wounds, often in similar patterns.  He took the time to observe their daily activities - noticing that one gentleman was using a hammer that had a splinter in its handle that he could not feel - so the repeated use of the hammer was breaking down his skin.  Another instance found that a man was reading in his bed at night time and would go to turn off his lamp, night after night brushing some of his knuckles against a hot piece of glass on the lamp, and that this was slowly burning his flesh.  In a third instance, one that Dr. Brand felt was most challenging to figure out, some of the patients had rats chewing on their fingers in their sleep, which through the introduction of cats into their housing fixed the problem of their hand wounds.  All of these patients - and the world at large - thought that having the diagnosis of leprosy meant that fingers and toes would spontaneously fall off, that the tissues were somehow bad, and that the disease was highly contagious.  Dr. Brand was able to solve so many problems for his patients to improve their quality of life and provide hope to this patient population.

The book goes into some detail with regard to Dr. Brand's three stages of the pain system - how first a "danger" message must be received from the environment, then this signal is transmitted to the spinal cord and lower portion of the brain to be filtered and assessed - ultimately reaching the higher portion of the brain where a response is decided upon.  Pain occurs when "the entire cycle of signal, message, response has been completed."  He provides examples of how pain can be "stopped" by interrupting the cycle at each stage, and how much the mind and learned experiences can impact the third stage and  recovery from pain.  

I think reading this book will certainly improve my understanding of pain, though some of the newer materials I have read go into some different detail, this is a much simpler read with memorable anecdotes.  I can't recommend it highly enough for newer physical therapists to emphasize a different way of thinking than our classical training likely provided. If you have any interest in science, medical stories, pain, and human compassion - check it out.  Brand includes the definition of Compassion early in the book: latin roots are com + pati meaning "to suffer with."  A compassionate healthcare provider truly does suffer with their patients. We may not feel your physical pain, but our hearts connect to your experience, and we care about you.  To some degree, suffering has an element of choice. I hope to help reduce the suffering of my patients, and I'm so glad this book was recommended to me!

Wide Open Wednesday and Tourist Thursday

Kristen’s hard work blogging continues. Days 4, 5, and 6 are completed. I’m not sure where she finds the energy as I basically collapse into a coma at the end of the day and am minutes from doing so again right now. 

Wednesday’s Day 4 adventures on Kristen’s blog are here. I earned my keep driving about 500 miles through half of Wyoming and most of South Dakota. I didn’t think this drive was as bad as everyone said it would be- though for sure it was much flatter and far less scenic than our previous few days. I enjoyed the sporadic surprises along the way. 

We stopped at Mount Rushmore and the Corn Palace which were both cool.  I love seeing the unique features of basketball arenas and this one was for sure the most unique arena I’ve ever seen. I’m missing the WNBA season pretty fiercely so a moment in my happy place (a basketball arena) was an awesome boost to a day of driving over 700 miles. We had plenty of time to discuss how nobody here really seems to be doing anything differently regarding the Coronavirus- except there’s probably more hand sanitizer available than usual. 

Wednesday we crossed the half way point. We listened to lots of music and some audio books. Both of us took car naps. We passed through Hartford, South Dakota which made me feel a lot closer to home. We didn’t hit the cow that was in the middle of the highway... I yelped a bit when I came upon it and may have awakened Kristen in shock.

(Please note the previously mentioned bug cemetery windshield, too).

Then Tourist Thursday came about where we did a bit less driving with a crash course in Chicago tourism with a visit to Navy Pier, the Cloud Gate aka the bean, and Giordano’s pizza for some deep dish. Unfortunately the Air BnB we had booked in South Bend, Indiana was a hot mess and after maybe 5 minutes walking around it and thinking we might not live to see the East Coast if we stayed, we hit the road and kept driving while finding a hotel room to crash in. I guess I’ll have to save Touchdown Jesus at Notre Dame for another time. I’ve still never seen that campus despite driving through here at least 3 times in my life. Somehow I never ended up there with UConn Women’s Basketball... and this visit tells me that maybe I’m just not meant to see what the Fighting Irish campus has to offer.  Kristen’s more detailed post is here.

Today we completed Indiana and booked it across Ohio and into Central Pennsylvania with the major highlight being a family visit.  Overall we’re making great time, haven’t run out of things to talk about, and are about an hour and a half away from splitting up to our final destinations. See ya tomorrow, CT!

Yellowstone and Grand Teton Tuesday

Day 3 went by so fast!  We didn’t drive very far but we explored two National Parks- Yellowstone and Grand Teton- both really awesome, though we both preferred Grand Teton. This has been my first visit to Wyoming and it was certainly a unique place to visit. 

Here’s the link to Kristen’s Day 3 post for you to check out! And a video clip from each park. 

Montana Monday

Hey again!  As previously discussed yesterday in this post, my friend Kristen and I are driving from Seattle to the East Coast. She’s an adventure blogger so she’s been writing all about our experiences and I’m a day behind her in reposting them. Here’s her post from yesterday.  Yesterday we spent the day in Montana with the highlight being Glacier National Park.

Feel free to follow along our journey... or text us. We’ve got 2000+ miles still to go!

Cross Country Road Trip Day 1!

Happy summer everyone!  Whatever summer looks like during a global healthcare and national humanity pandemic.  I’ve really been struggling to write blog posts the past several weeks because sharing PT knowledge isn’t as important to me as the time I’ve spent reading about the coronavirus and the systemic racism pervading the US. 

And then, I learned the sad news that my coworker pal, Kristen, (Who I went to Africa with and have previously written blog posts about) was leaving Seattle Children’s to join the PT crew at Boston Children’s Hospital. But moving during a global pandemic, which I did during May, is more challenging than usual. She wanted to drive but it’s so far to go alone, and so our plan to road trip across the country was born.  

Road tripping isn’t one of my usual blog posting topics, but Kristen writes about her adventures, so I’m sharing hers as a blog of our trip. Check out her day 1 post from yesterday at this link and make sure to comment on her posts and answer her question of the day!