A few months back, feeling lonely and out of spirits, I phoned a close friend. I am sure you will all recognize the social dance steps we went through. I asked Mark how he was doing. Fine, thank you – he said. And you? Fine, thank you – I replied. We went on to discuss the unusually warm weather we were having in Southern California, touched briefly on the politics of the day, recommended books we had just finished reading.  I knew my friend was struggling to hold the line on his hard fought battle against alcoholism.  And Mark knew my history of depression.  Neither of us mentioned these existential threats we each faced.  The conversation ended shortly thereafter, oddly unsatisfactory.

The Elephant in the room

Mental health has always been a thorny (if not taboo) subject.  Especially in Western societies, acknowledging vulnerability is dangerous.  We try to project an aura of strength, invulnerability, eternal youth.  How do we know whom to trust?  Most friendships are based on transactional interactions – what have you done for me recently?  Families are drifting apart as we avoid getting together in person.  Cherished traditions of birthdays, anniversaries and sharing a meal together – these are luxuries we have not been able to afford for more than a year.  One of my neighbors refuses to “see” her relatives on Zoom because she has not been able to get to the hair dresser and she thinks they may make snarky comments about her appearance and the “quarantine pounds” she has gained.  As we forget to talk and truly communicate, we sink into deeper loneliness.

Then there is the eternal question of who goes first.  Should I open up first, or wait for you to start the ball rolling?  Should I trust you first? Will you take advantage of my vulnerability?  Will you try to understand or pretend to be oblivious so as not to be responsible? These negotiations can be painful and more often than not, they eventually break down.  We retreat to the safe  “How Are You? I Am Fine” mantra.  Better look for help from professionals, they know how to handle this stuff.  They are strangers after all and if they are less than sympathetic and understanding, at least they are not family or friends and it won’t hurt as much.  Right?

Unfortunately, strangers to hear the stories from our hearts are becoming hard to find.  A recent news article reported that there is a mental health epidemic raging on in this country.  More than a third of Americans acknowledged depression, anxiety and panic attacks.  At the same time, there are reports of people who call suicide hot-lines who are put on hold for half an hour or more.  Psychiatrists are booked solid.  Often times, loneliness can be more dangerous than corona virus – or even CLL.

This epidemic is a very fast moving crisis, events unfolding at an ever faster clip.  Even reports in prestigious journals like the “Lancet” are being rushed to publication ASAP, and then retracted when new information comes to light. The internet has made it possible for laypersons to access technically complicated information from pre-publication reports and well ahead of careful peer-review.  Guidance from sacred institutions such as the CDC, FDA and WHO are often at odds with each other, all too often tainted by political pressure.  We celebrate the record speed with which vaccines have been developed, but our sigh of relief at their unexpectedly high success rates is tempered with a nagging worry about rush to judgment.  Politicians, pundits, – and yes, patient advocates too – all have their own take on how to interpret the deluge of information coming at us.  Who are these people?  Can you trust them?  Do they know what they are talking about?  Thank god for the likes of Dr. Fauci – a sane voice with obvious expertise and trustworthy motivations.  

This is my second to last article (for now, anyway).  The next article is going to be all about Vaccines, Variants and “Viral” therapies – “viral” referring to anecdotal reports with little credibility hyped on Twitter.  After reading a mind boggling number of papers that often contradict each other, in my next and last article I will try to put things in a simpler format:  my advice to you.  There will be a long list of links at the end of the article that you can read.  But to be honest, much of the next article is going to be my opinion.  This crisis has outstripped merely technical advice.  We face much deeper questions of what to think, what to believe, whom to trust, how to survive.  Which brings us back to the big questions:  should you trust me?  Should I trust you?  Who goes first?

If you have been a long term reader of CLL Topics, you are aware of my strong emphasis on the credibility of sources I cite.  Is the author an acknowledged expert in his / her field?  Is the article peer reviewed and published in a high pedigree journal?  It is harder to judge credibility of non-professionals – such as patient advocates like myself.  I am a scientist and researcher.  But I am not a medical professional.  In the “About Us” section and “Qualifications” sections I try to provide details of my professional background, so you can better judge the quality of my opinions.  That and track record – follow the money is a good rule of thumb.  We do not advertise, we do not solicit money, we are not selling any magical potions.  

I normally do not struggle with writer’s block.  But I have struggled with the format of my last article for more than a week.  It finally dawned upon me, why I was having such a hard time.  Up to now, I have had the protective shield of my reputation as a scientist, using carefully curated and diligently cited professional articles to back me up.  To some degree, that is no longer sufficient.  There is too much information, too much confusion, too much angst, too much real risk.  When wearing a mask to prevent spread of infection becomes a political statement, we are well beyond technical guidance.  My professional qualifications are important – but perhaps not sufficient for your judgment of the value of my advice in this unique situation.  My personal qualifications are now in play.  Who is this woman?  Do you trust her?  Should you?

I will go first.

A little over a year ago, I tripped over a rug in my house as I was playing with my dog “Buddy”.  I fell hard on the tile floor and broke my knee into many little pieces.  It was a very complicated fracture, requiring long surgery and total immobility for 12 weeks.  I needed pretty much round the clock help from home nursing aides.  I was in a lot of pain, demoralized and depressed by my total loss of autonomy.  Pain, depression, loneliness, loss of autonomy – and a lot of prescriptions to potent painkillers. It was a lethal combination.  My suicide attempt was no mere cry for help.  I was not kidding.  Life was not worth living and I wanted to end it, as simple as that.  A fluke chance and I was discovered before I quite kicked the bucket.  And here I am, a year or more later.

It was a very dark time for me.  I found, the hard way, who my friends were and who were not.  My next door neighbor, a staunch conservative Republican that I thought I had little in common with, came by to visit every single day.  A couple I had known for more than two decades, my “best friends” that I had tried to help with CLL and other medical issues to the best of my ability, wrote to me and told me to “drop dead” (ahem.  Sorry, that was hard to resist.  Fall, drop, dead?  You get it?).  It seems depression is almost as contagious as the corona virus.  The socially acceptable answer to the question “How are you?” is almost cast in concrete:  I am fine, thank you.  And if you are not fine, we would thank you to keep that to yourself.

Loss of autonomy after my accident  was very difficult for me, having to depend on the kindness of strangers to do the simplest of things.  But even  harder was dealing with the cruelty of a few friends.  My suicide attempt made me a pariah to some people.  There is a definite stigma attached to mental health issues of any sorts in our culture.  Heck, I even lost a couple of bridge partners!  If my bridge partners cannot be sure of my ability to play a kick-ass game of bridge, should you guys trust my take on much more important things?  Suddenly, in addition to my educational and professional qualifications, my personal stability and balanced judgment are of relevance.  Rightly so.  And I decided to go first, trust you with my personal story of despair and hurt and recovery.  

As my knee healed, as I could do more things for myself, as I finally got done with mandated psychiatric help that could not see past cultural stereotypes, as I made new friends and – this is important – beat the pants off of my erstwhile bridge partners (revenge is so sweet!), my life improved. I was going to go on a vacation, book tickets on a cruise.  Then we all got hit with COVID-19 pandemic.

Once again, I faced existential questions.  But this time, I had plenty of company.  I do not know of anyone that is not worried about the state of the world right now.  It has been more than a year since I last saw my daughter.  It will be a little while longer, until she gets her vaccinations and it is safe for her to travel cross country from Maryland to California.  My dog is getting older, I worry about losing him. I am 72 years old and not getting any younger.  Sounds familiar to you?  With lots of time on my hands and new questions driving my interests, I began reading – delving into psychology, philosophy, even religious thought.  It is amazing how many times mankind has discovered the same truths, over and over again. 

God, grant me the serenity
to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.
Living one day at a time,
enjoying one moment at a time;
accepting hardship as a pathway to peace.

So.  This is who I am, this is where I am.  I accept my age, I accept my eventual mortality.  I even accept the loneliness that is almost baked into the cake of old age as we lose spouses / partners and families drift away.  These are things I cannot change.  But there are still things that I can change.  I can learn to be kinder, more patient, more open to understanding a different perspective.  I can help when I am able.  I can enjoy playing with my dog today, not worry about next year or the year after that.  I can accept responsibility for my own actions, but not take the failings of the entire human race on my shoulders.  I can come out of retirement and reconnect with my readers.  I can tell the truth, to the best of my ability.  I can ask you to trust me, but not be hurt if you choose not to – that is entirely your decision.  I can answer the reader who complained that I scared the living bejeezus out of him with my articles: this is reality as I see it.  Take it or leave it – your choice.  I will not cut and run from problems, nor will I deep-six them from unfair sense of guilt or shame.  I will try not to forget the lessons I learned over the past year.  I will be more prudent in who I choose to call friends.

A sense of community, a sense of belonging – these are part and parcel of being human.  Writing about CLL after my husband was diagnosed with CLL and for several years after he passed away helped me cope with the grief of his death.  Getting back to writing about COVID-19 and sharing with you what I have learned about it to the best of my ability – this is my way of saying thank you.

Onward and upward. Vaccines, Variants and “Viral” therapies  – coming right up.

Be well,