Tag Archives: Healing

A New Chapter…Still in Limbo

4 Jul

Lifestyle choices.

My wife just joined the “gig economy.”  She is driving for one of those services that connect driver and passenger through a cell phone app (in light of their vast reach and rather spotty record of employee relations, I will refrain from mentioning them by name). She has given up her regular and not insignificant paycheck, her employer subsidized health insurance, and regular contributions to her 403b (like a 401k for the non-profit world) in exchange for a greater sense of freedom and a workplace that consists of just herself and whoever happens to be sitting in the passenger seat at any given moment.

This is a new thing for her…a very new thing.  For almost two decades my wife was a cog in the vast machine that is organized Jewish life in Los Angeles. To be clear, my use of the term “cog” is not meant to disparage my wife or her contribution to Jewish Los Angeles.  Indeed, I would argue that over the past two decades she has played a critical role in a number of organizations—they literally could not have functioned without her or someone like her.  Rather, I think the term reflects how, over time, she came to see herself and the way that she, and perhaps countless others, became a kind of a large, faceless bureaucracy that made organized Jewish life possible in the third largest Jewish community in America.

I bet I know what you’re thinking. My non-Jewish readers are likely struggling to understand the concept of organized Jewish life, while my Jewish readers are certain that there is nothing organized about any Jewish institution—and they may be right.  Nevertheless, the Jewish community of Los Angeles is made up of a host of synagogues, schools, community centers, Israel programs, social justice organizations, philanthropic endeavors, and one vast, centralized collection, or federation if you will, that attempts (and fails) to oversee, or at least assist, them all in their diverse and important work.  Again, because of their vast reach and spotty history of employee relations, I dare not mention that last organization by name, but those in the know can guess the institution that I refer to.

For a number of years, Amy was one of the many employees who made these organizations run. She managed the comings and goings of a small synagogue in the San Fernando Valley, followed by a number of years as an administrative assistant in Jewish educational and philanthropic organizations.  Ultimately, she served as a Human Resources professional at one of the largest Jewish organizations in town (no, not the Council of the Worldwide Zionist Conspiracy—though their benefits package is quite good).  And for a while, her work and her consistent move up the ranks—which she accomplished while being a wonderful, supportive mother, the primary earner in our home at times, and while completing a long-delayed BA degree—seemed to be tolerable to her, if not always satisfying.  She got the Jewish holidays off. She helped a range of people address their personal and professional needs, and as a family we spent a fair amount of time invested in the broader Jewish community (which included my studies in American Jewish history, my daughter’s attendance at a large Jewish summer camp nearby, and a host of other professional and personal connections to Jewish LA). There were certainly very good moments in her professional life and very bad moments too, but they seemed to be no better or worse than any other average Jane’s satisfaction or dissatisfaction with their workplace.

But eventually, things changed.  Over approximately two years, Amy’s sense of professional satisfaction and above all her health and well-being deteriorated—sometimes gradually and sometimes with shocking rapidity.  Those who have read my work before know that over two years ago Amy suffered a brutal, devastating bout of pancreatitis that laid her up for much of the summer of 2015.  In some ways, she never recovered fully from that illness.  At the very least, the few communal, local, state, and national systems in place to support her recovery failed, and my wife—who by the time all was said and done experienced terrible mental anguish and physical suffering—was forced back into the workforce well before she had the strength or physical and mental wherewithal to engage with it.  On her return, she found a work environment, and perhaps a national culture of work, that had little patience, and even far less sympathy, for her condition and constitution.  The hardheartedness of her workplace and utter lack of sympathy for her health and well-being ultimately led to another, terrible physical deterioration, a lengthy and desperately needed enrollment in our state’s disability system, and, finally, a change in the way she earned money.

I think that I would like to rededicate my blog, which has become rather moribund over the past year, to contemplating and exploring how Amy’s life changes came to be, and how the changing health (both physical and mental) of one or more of family members can shake the family unit’s sense of calm, happiness, and stability to its core.  We are undertaking a new path—Amy, Emma, and me.  And I don’t know where it will lead or if it is sustainable.  If there is one thing that I have learned since my cancer scare, which took place almost four years ago, is that I cannot predict the future at all.  We do our best.  We plan for what we allow ourselves to believe the future might bring. We budget our money best as we can, visit our doctors, try to maintain robust physical and mental health, invest in school, or retirement, or some other such thing, but we simply cannot predict where our hopes, and dreams, and plans will lead.  We do, however, know something about the past.  Indeed, that is the primary reason that I became an historian, not because I wanted to use the past to predict or prevent the future, or even to make sense of the present, but because I have found that the past is the only moment in time that we have the vision and the leisure to review, reflect upon, and, to some extent understand.  So, now that my family seems to be shifting our future direction, I think that I would like to look to the past a little bit to understand how that came to be.  I would like to see what lessons I can learn about our systems of work, finance, and healthcare, the often inexplicable way that family binds us in good times and bad, and, above all, the very tenuous nature of human health and well-being.

A few logistical notes before I sign off.  I think that I will still call this blog Limbo.  It just feels right.  I think that as long as we live we are always between states (e.g., health and sickness, wealth and poverty, mental stability and instability, etc.) and in many ways, I have found great satisfaction in using the written word to contemplate that sense of in-betweenness.  So Limbo it is!  Also, I am not going to make a big deal about this blog. I am not going to post it on Facebook or talk about it a lot, like I used to.  Those who are already connected to my blog will likely get some kind of update from WordPress.  Those who are not connected, that’s fine.  In some sense, I am writing just to hear myself think (I know how contradictory that statement is, but it feels true).  I appreciate an audience (a lot, actually) but I do not require one, and I actually feel a little sleazy about the way that I used to promote my blog to the public. If people want to read my blog, great.  If they want to share it…that is their choice and not the result of me hawking the latest edition. If it just sits there in the ether unread, well…at least I said my piece. Also, I have no idea how often I can update my posts….so likely better to just keep this to myself and see who shows up for the party.  Finally, I encourage those who do read this blog to respond to it.  I have always hoped that the great promise of blogging would be the way that it can facilitate an exchange between the author and the reader.  Sadly, I have not been able to create fully the kind of exchange that I seek (at least not with any consistency) but maybe things will be different this time.  So please respond.  Just don’t be mean.  Life is too short for such nonsense.

As always….stay tuned!

I Live to Scan Another Day!

18 Jun

Erik Hat

 

For those of you who may have missed my last post, I announced that I was due for a PET scan and would receive the results this week.  Well, the results are in, and there is no surgery in my immediate future.  As my oncologist said, depending upon the angle that you look at it, my mass may have grown a millimeter.  And the only time he would recommend surgery is if I am not feeling well, or if the growth is significant (say, 7mm in 6 months).  I feel fine.  There is limited growth–so limited that my Dr. tells me there is no change in my mass at all–and so we do this all over again in 6 months.  Tonight, Scantasia, an evolving tradition in my family where we celebrate good scan results with a meal out and  the heaving of yet another heavy sigh of relief.  In all likelihood this will be followed by a brief, personal moment of panic and a tortured consideration of my own mortality, which seems to follow every one of these events (perhaps a mild form of ptsd).  I’ll write about it, and other less creepy stuff, too.  Thanks for reading.  Thanks for your continued good wishes, and thanks for your presence in my life.

 

As Always, stay tuned.

 

E

Charting a New Course

21 May

 

Charting

Last week I had the great good fortune to spend an hour or so hanging out with some really big time historians…two major dudes, well connected in the field with impressive careers and equally impressive positions. The type of historians you dream of becoming…that is, if you actually dream of becoming an historian.   Just a few years back I used to do this all the time as part of my doctoral training, but since my hooding two years ago, I spend a lot more time managing staff, planning budgets, and helping to write grant proposals than I do studying the past or chatting with renowned historians.  As the conversation went on, one of the pair, a longtime friend and colleague, observed that my blog is a far better reflection of my personality than is my academic writing.  “You really found your voice in your blog,” he said.  “By contrast, your academic style was something that seemed imposed on you.”   I smiled and said something about the demands of academia, but as the conversation went on two thoughts came to mind.  The first was that my friend was right.  I think anyone that knows me even a little can “hear” my voice in this blog.  I tell stories.  I make jokes.  I whine and complain.  I’m not a particularly private person, and I really don’t know when to shut up.  This is how I talk in the real world, and this is how I choose to write in my blog.  My other thought was, “Well that’s just great!  I’ve spent the better part of a decade learning to write a work of history in a voice that is utterly alien to me.  What the hell am I supposed to do now?” I think the answer is to really hone my blog voice and to try it on new topics and in new forums.  I think that the first step in that process will be to expand the scope of my blog.

In some sense, I have expanded the scope of this blog on several occasions already.  Last October, when I began this project, I was focused on one persistent, terrifying thought—that I have lymphoma.  Those of you who have suffered through a dangerous and/or chronic disease know how all-consuming this kind of knowledge can be.  No matter what you’re doing or thinking, somewhere in the back of your mind is the ever-present thought “I have cancer.” In an effort to deal with that very scary idea and to, perhaps somewhat selfishly, ask all of you to share my burden and ease my fears, I set off to write this blog.  My early postings were ALL about cancer—fears about cancer, friends with cancer, cancer treatment, even cancer jokes!  Then, as I learned that I did not have cancer, I started to explore a broader range of topics that might reasonably fall under the heading of health and wellness. One more misdiagnosis and the blog moved from health and wellness to fear and suffering, and on, and on, and on. 

Point is, despite my initial reasons for creating this blog, over time I have found it to be a really wonderful opportunity to think about things that are stuck in my head and to try and let them out of there before somebody gets hurt.  And while health, wellness, and the lemon-sized tumor inside my chest are ever-present in my psyche, so too are other thoughts. For example, while this may seem silly to some, I have begun to feel ambivalent about my love of football, which was once a great passion but now, with the continuing revelations about athletes who have suffered brain damage, proves harder to watch (and yet I still love the game!).  I think quite a bit about the ways in which Americans and American Jews understand and relate to history. I am deeply troubled about the nature of political discourse in our society. I fret about my daughter’s inevitable departure from our home.  And I am concerned that my newfound love of craft beer may signal a troubling low in my continuing decline into insufferableness. 

To be clear, health, well-being, and my ongoing engagement with the healthcare system will still play a large role in my blogging.  To my knowledge I still have a large, benign tumor in my chest (only next month’s scan can tell for sure, but c’mon, do we really think it’s disappeared?).  I still have sarcoidosis.  I’m fast approaching 50, and I’m still overweight.  I now have just as many doctors interested in me as I did when I was writing my dissertation—four to be exact.  Back then, of course, the four were PhDs and now there are four MDs on team Erik—five if you include my thoracic surgeon.  For these reasons, and for others, I intend to keep the blog’s current title, Limbo—strictly defined as a place between heaven and hell, but which I have also taken to mean a place or state between health and illness, happiness and sadness, youth and old age, being and becoming, and other structural opposites.  I’m still in Limbo and I still plan to write about that.

While thinking about this new direction in my blog, I actually went back and reread my first post from October and found that, in some sense, the point of this project has always been vague and subject to change.  At the close of the first piece I wrote that, “Perhaps I am just talking to myself, here, to be comforted by my continued ability to communicate clearly in the written form, and to use that as some kind of gauge for my health and happiness.  I simply don’t know.  I just know that right now I want to write and to do so publicly.  To share my stories and see if they resonate and what they generate.”  And so the process continues. I still want to write, to share my stories and see if and how they affect people.  It’s just that now, I want to expand the range of potential stories.  I hope that some of you will continue to follow me on this journey.  I have found your comments and support to be invaluable, and I look forward to seeing how you may or may not respond to my efforts in the future. 

As always, stay tuned.

All I Wanna Do Is Have Some Fun

28 Mar

 

Hat and Shades

I remember the day like it was yesterday.  Friday October 4th, the first Shabbes in October.  The day before (Thursday), my doctor had called me and told me that my spiral ct test indicated that the big thing in my chest was a cyst, nothing to worry about.  Still, there were these enlarged lymph nodes she wanted to test for, probably nothing.  So I took a blood test that Friday morning, got on with my day and looked forward to a joyous and peaceful Shabbat.  I went to the grocery store to get a challah, some wine, and some juice, and as I did I began to sing to myself God’s commandment to keep the Sabbath holy.  “V’shamru, v’nei Yisroel et ha Shabbat…”  I felt something I hadn’t felt in a long time.  I felt….giddy, ecstatic, carefree. 

I was still humming the tune as I walked out into the parking lot.  Suddenly my phone rang.  It was my doctor.  My blood tests didn’t provide the answers she wanted.  Now she wanted me to see an oncologist.  My heart sank and all the giddiness drained out of my body.  I don’t really think I’ve been giddy since and certainly not carefree.  To be clear, I’ve had some really nice times…good times…meaningful times… times filled with love, but I’m not sure I’ve had fun.  In truth, I’m not sure I’ve had fun for a very long time.  You know, the kind of fun I had when my world was young.  When Emma’s laugh could keep Amy and me beaming and chuckling for hours.  The kind of fun that comes when all is right with your world.  Your parents are healthy.  Your pets are spry.  Your friends still have all their hair and teeth.  Perhaps you’ve got a bit of money in the bank, perhaps not.  But things around you are good, and so you can let go and have fun.  I can’t really remember the last time I felt that way, except for that moment in the grocery store when I thought my future was devoid of oncologists and surgeons, misdiagnoses and uncertainty, and stuff like that.  That time in the grocery store was really fun, and it hasn’t come back.

Truth is, I’ve never been a fun guy.  People have told me I am funny, but that’s not the same thing.  Indeed, my lack of fun led one former girlfriend to occasionally call me “grandma.”  She would do this when I turned down the music in my car to hear myself think, or when I sat in the corner at a party filled with her friends (but none of mine), or when I just couldn’t bring myself to have fun, which was often. Back in the 90s I auditioned to be in the music video for Sheryl Crow’s hit “All I Wanna Do is Have Some Fun.”  I didn’t get it.  They said I wasn’t fat enough (I never knew how to respond to that note), but I suspect I wasn’t fun enough either.  After all, I’m plenty fat.  I am known for many things—talking too much, arguing, a fair bit of pomposity, my love of cookies, etc.—but not for fun.  No one who knows me has ever told a story in which “Greenberg showed up, and the next thing we know we’re in Tijuana passed out drunk on the beach.”  I’m not that guy.  I’m not fun.

Why this meditation on my poor fun reflex?  Yesterday was my first day back at the gym since my surgery.  It felt great.  The ability to move my body, to breathe deeply, to come out of there with fewer of the aches and pains that have plagued me since I first met my rather dour, though well-meaning, surgeon really got me jazzed. I wasn’t giddy, but I was getting there.  And as I drove away I found myself thinking about the old Sheryl Crow song, “All I wanna do is have some fun.”  And I meant it.  I wanted, so badly, to feel giddy and carefree.  To have fun.  I’m not sure I know how to do that anymore.  At the very least, I know that fun, these days, will feel different than fun when I was younger.  But I want to give it a try.  I probably won’t make it until the “sun comes up over Santa Monica Boulevard,” but I can probably make it until 8:30 or so on Ventura in Sherman Oaks.

As always, stay tuned.

Because It’s All About Me: Adjusting the Focus of My Blogging

22 Mar

 

People who know me know that I talk a lot.  Sometimes I talk about interesting stuff, sometimes important stuff, sometimes nonsense, but the bottom line is that I find it hard to keep my mouth shut in the company of others.  Also, I tend to talk a lot about me!  This is not intentional, really.  Often, though, I seem to speak in stories…not like the way that Jesus spoke in parables, of course, more like the way a Borscht-Belt comedian seems to have a story for every situation.  When I want people to understand that I’ve heard and understand, or sympathize, or empathize with what they’ve told me, I often respond by telling a personal story that I think will resonate with the topic of conversation.  I suspect that at times this trait is annoying, and I thank so many of my family and friends for their indulgence.

This trait in me, this habit of speaking about myself, is significantly magnified in this blog.  Truth is, I’ve looked around at personal health blogging a bit, and it tends to be a pretty “me-centered” project.  I don’t think any of us who blog in this way are unaware of or insensitive to the people around us.  It’s just that, let’s face it, when you blog about illness, or recovery, or some combination of the two, you really only have your thoughts and stories to work with.  I can’t, for example, meld minds with my daughter and learn in any textured sense what she’s feeling these days (although, Emma’s talented English teacher has her students doing weekly blogs, and Emma’s is quite good…check it out if you’d like).  And even if I could reproduce with perfect fidelity the thoughts and feelings of my family and friends, those thoughts belong to them, as do their trials and anxieties, and it would be a violation of their privacy for me to share those experiences in a public way.

Events over the past few weeks, and particularly the past few days, have made clear the tremendous psychic toll the past six months have taken on my immediate family.  To be clear, Amy and Emma are ok, but it is quite clear to me that they have suffered greatly through the process of diagnoses, misdiagnoses, conflicting opinions, and the general worry that comes with a bizarre structure located in the center of my chest.  The same is undoubtedly true of my mother and sisters, each in their own way.  At times my heart breaks for them, and as much as I crave a more definitive future for me, I yearn for their lives to be filled with joy, contentment, and ease.

Lately, I’ve been pretty down, and I am sure my blog reflects that.  My surgeon, who told me the other day that he sees it as his responsibility to resolve my “problem,” has a way of speaking that just seems to worry me more than it should.  Don’t get me wrong, he’s a good guy, I just wish he were a little more…chipper, I guess.  The truth is, though, that I am no worse off than I was almost six months ago.  Indeed, I am better.  I am blessed with an extraordinary support structure.  I have doctors insisting that they look at me every few weeks.  I have a remarkable wife, whose sense of calm helps get me through a lot, and an extraordinary daughter, who has had to suffer through a lot of my nonsense for the past six months.  I want them, and all of you, to know that, today, I see things differently than I did even a few days earlier.  There are lots of tomorrows ahead of us.  They will be full of pleasure and promise, and so I would like all of us to worry a little less during our todays—and that begins with me!

Finally, let me apologize for my selfishness.  Too often when I have asked for the prayers and good thoughts of this extraordinary electronic community, I have asked for such support in my name.  That’s wrong.  Should you ever think of or pray for me, please do so for my family as well (who needs and deserves such help) and while we’re all at it, let’s direct those good wishes to a world of people who suffer far greater anxieties, indignities, and illnesses than I ever have.  I know that you’re all good eggs and have been doing that anyway.  I just wanted to add my prayers to yours.

As always, stay tuned.

Shake and Wake: An Unexpected Jolt Helps My Healing

17 Mar

Earthquake

 

If you’re reading this in Los Angeles you know that we had an earthquake this morning.  If you’re not in Southern California, we had an earthquake this morning.  My Facebook page is awash in reports of slightly frightened, slightly exhilarated friends who seem to be rocked awake but who, thankfully, remain safe and sound…Thank God.  Us, too.  The tremor (4.7, or so, which took place less than ten miles from our home) caught us in the middle of our Monday morning rituals, preparation for work and school generally performed in a lackadaisical half-waking/half-sleeping state, and jolted us to attention as we all hung tight and rode it out.  It woke me up in more ways than one. 

Over the past two days, I’ve begun to feel better.  My body doesn’t ache as much.  I tire less easily (though I still tire more than I would like).  And just in general I have a good sense that my healing is moving in the right direction.  I don’t want to make too big a deal about this.  After all, it’s not like I went a full fifteen rounds with Mike Tyson in his glory days.  People have had more difficult surgeries and surely more difficult physical traumas.  Also, I could be fooling myself into feeling better—which I guess isn’t the worst thing in the world, really.  I could be weeks away from where I want to be and just don’t know it yet.  Still, over the past five or six months I have taken to blogging about my health and how I feel.  I blogged about how bad I felt on Friday, and so I should probably blog that this Monday I feel a bit better. 

Still, I’ve felt groggy, a little out of it…like somehow I’ve been walking around in a dream.  Well, that’s not a problem anymore.  The earthquake shook me to attention.  It got my adrenaline flowing and my blood rushing, and it reminded me that other things can and do happen in the world beyond my health odyssey.  I suppose I should offer thanks for that.  And it seems I’ve found the perfect bracha (blessing) to do so.  Shortly after this morning’s quake one of my rabbi friends (I seem to have quite a few) posted a meaningful blessing on his Facebook wall which I liked very much.  “Praised are You, Lord our God, Ruler of the universe, whose power fills the world…. But really, must your power fill the world before 630 am?”  It’s a fair question.

I hope this post reaches all of my friends safe and well (just had an aftershock, here) and not too shaken up.

Stay safe and stay tuned.

My Promising Post Surgery Post

12 Mar

As most of you know, I had surgery today to extract some lymph nodes to determine once and for all whether I had cancer.  You know I was scared out of my mind at the prospect of general anesthesia AND the possible pathological findings. of my procedure.  I am happy to say that on both counts, things look promising.

I simply will not say I do not have cancer until I have heard the results of the lymph node biopsy (which I should learn on Friday).  Too many times in the past six months I have been led astray by embracing good but incomplete data.  The process has been emotionally draining, and over the past few weeks, downright emotionally devastating, as well.  I have been so terribly frightened, lately, so utterly besides myself as I tried to reconcile the competing theories of numerous talented and caring medical professionals, that at times I really did feel like I was in the middle of a horrible nightmare.  Indeed, if Wes Craven would really like to write a horror story, write one about a guy who goes to the emergency room for kidney stone pain and then is routinely told for almost six months that he probably has cancer.  Scary shit.    

So I will hold off making any of my own assertions until some time on Friday.  In the words of my surgeon, though, it looks like sarcoidosis (not cancer), and he saw nothing to indicate any type of malignancy.  Promising, but I will wait for the proof.  So please keep sending your fabulously good thoughts and prayers my way, and I promise that on Friday I will share, what I hope to be, the good news.

As for your good wishes, they surely worked, and I am grateful to each and every person who reads this blog and wishes me well.  You have helped, and continue to help, me through an incredibly difficult and frightening time in my life.  I honestly believe that your good wishes, which I was able to read in the surgical prep room right up until they wheeled me in to OR, made me stronger, and helped me to better tolerate the experience of general anesthesia and thoracic surgery.  Amy and I are discussing ways to thank you.  Indeed we are thinking about a three day party (kind of an open house) to have an opportunity to offer some hospitality and to hug each and every person that can make it.  For those of you who live a long way off…we’re working on that, too.  

I hope that Friday I can share glorious news, which is to say that instead of cancer I have an autoimmune disease (the bar for what I consider lucky is still quite low).  Until then, THANK  YOU, THANK YOU, THANK YOU.

As always, stay tuned.