Thinking of Linda D.

Every six months for the past nine years I have had an appointment at the Dana Farber Cancer Institute.  I always go on Tuesdays and I always schedule the first appointment of the day.  By the time I arrive for my 8:30 visit the garage is nearly full, the building is in motion, filled with people walking the halls in various stages of cancer.  It is easy to distinguish the newly diagnosed from the “veterans”, the terrified from the stoical, the agitated from the resigned, the physically weak from the physically strong.  It is nothing if not humbling.

I often say that I got off easy.  Yes, I had bi-lateral mastectomies, but was, by some miracle, spared the intensely emotional (not to mention physical) tribulations of chemotherapy.  I have even managed to feel guilty about this, having watched my father, father-in-law and more friends than I care to recall get their asses kicked by the poison that was trying to save them.  Our stories are different but all too familiar.

I am acutely cognizant of these feelings each and every time I enter the building for my appointment.  My scars, at this point, are largely just physical, yet as I step into the elevator for my ride to the 9th floor (female cancers) I straddle that fine line between making compassionate eye contact, engaging in gentle banter and trying not to look too long or too hard at the struggles which lay in front of me.

Yesterday, for the first time, I watched a woman and her husband/boyfriend/partner have as raw a moment as I’ve seen and today, better than twenty four hours later, I still cannot erase it from my mind. They entered the bright, sunny and beautifully appointed waiting room, he pushing her in a wheelchair.  It was hard not to notice her massive mane of blonde hair pulled back into a curly ponytail which covered her entire back.  Unlike the other women who were (it seems comfortably) donning colorful hats, scarves and some proudly displaying the fuzzy new hair that was growing back, she was not wearing an “I am having chemo” badge.  Her hair stood in stark contrast to the shiny heads around us. She did, however, have her plaid shirt open just enough to show what looked to be a newly implanted port for the cocktail which was soon going to course through her veins, doing every in its power to kill the cancer.

I looked up from “People” as I sensed someone nearing me and became keenly aware of the fact that she was avoiding any and all eye contact.  She moved gingerly, with the help of the man, to a sofa by the window and pulled her legs up under her, Indian style.  And then she started to weep.  Heaving, shaking,  nauseating weeping.  Her head fell into her lap, her vast ponytail following, as she convulsed and attempted to rid her body of every emotion that was pounding around inside of her, dying to get out.  Her partner?  Absolutely powerless, frozen by his own fear and, it was clear, incapable of even moving his body.  It was truly heartbreaking.  They both so desperately needed comfort and neither was able to provide it to the other.

I put down the magazine, suddenly horrified at the inanity of it and grappled with what to do.  My initial instinct was to move closer to her and silently offer a hug. But that felt presumptuous and, furthermore,  assumed (perhaps incorrectly) that she would be okay with a total stranger touching the body which has already betrayed her.  I considered picking up (again, silently) one of the many strategically (although, in this case, not appropriately) placed tissue boxes and placing it nearer to her.  Or to him, so he could help her, if even in a minor way.  That, it seemed, would only put her in a position that she felt a need to engage or thank me.  I even toyed with getting up and moving to another area of the waiting room to grant her some privacy but I did not want her to think she was doing something deemed offensive, by me, the bitch who (G-d willing) has this cancer stuff in her rearview mirror.

Within a few (very long) moments it was over.  The couple sat in silence, exhausted and bereft of any emotion, strength or attitude.  They stared in opposite directions from one another and remained that way until her name, Linda D., was called.  As they gathered themselves and Linda rambled back into the wheelchair I again felt the urge to embrace her and remind her that “she can do this”, but I didn’t.

Now, hours, and better than a full day later…I wish I had.

It has been a long time since I have had a crying episode (long time readers will recall that I am not a crier, but when I do…oh, man) and I felt the exhaustion from Linda D’s.  I have been thinking of her all day and wondering if today has been an easier day for either her or her partner.  I have no idea what her story is, much the way many do not know mine or yours or anyone else’s.  I do not know if her breakdown was the first or if it will be the last, although I suspect it was neither.  I do know that the raw, painful emotion which was bursting out of her made me desperately want to tell her that it was all going to be okay, that she was going to be okay and that her partner’s silence spoke not of his lack of compassion, but of his own fears.

I don’t often talk about just how hard it can be to deal with the challenges and uncertainty of Jessie’s being transgender.  Or living with the loss of my breasts.  Or wondering where my story is going to take me, my children and my family.  The pure release that Linda D enjoyed is something which I found both heartbreaking and liberating.

I felt like a voyeur during Linda D’s release and her partner’s paralysis.  I want to commend her, though, for allowing herself to feel the fear and let it all out and him for sitting strongly beside her.  I am thinking, no, hoping, that she felt better afterward and that today is a better day.

124 Hours

Hey…remember me?  I used to blog fairly regularly.   Until, that is, I blew outta town for five days and forgot all about life back in the big city (such as it is).  Yep, I am just back from five days of heaven on earth.  Five days of worrying about no one other than myself.  Five days of sitting on my ass doing one (and only one at a time) of three things: eating, shopping or sunning.  Five days of living like a Real Housewife, minus the bickering, backstabbing and name calling.  It was fantastic and long overdue.

I knew I needed a break, but had no idea just how desperately.  It wasn’t until I felt the warmth of the Florida sun and watched my hair become shorter, bigger and curlier by the second that I fully embraced just how spent I was.  I slept like a log.  I ate like a pig.  I cried (just once) like a baby.  I sunned like a (stupid) teenager.  I celebrated my birthday like a princess.  It was perfection.

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With the exception of the head in a cloud feeling from the shaky flight home which I just managed to shake about an hour or so ago, I feel like a new girl.  Unfortunately, this new girl has very little to share with regards to her family’s adventure at the moment, but have all confidences that that will change.

Just checking in…more to come as reality sets back in and my tan fades to my normal shade of pale.

p.s. Lots of love and thanks to everyone for remembering my birthday (29 is a big one, ya know) and a special shout out to MLS and LG for making me feel like royalty for 124 hours.  Thanks, too, to Rich and the kids for letting me call them (and not the other way around) for those entirety of those 124 hours and for my one-day-post-birthday celebration.

The Warrior Worrier

This morning on NPR they were discussing a new finding that indicates a correlation between the length of your fingers (the difference between the ring and index, to be more precise) and its translation to your tendencies to live your life as either a worrier or a warrior.  According to their research, if your ring finger is longer than your index finger, you are a warrior.  As the panelists were talking, I absolutely removed my hand from the steering wheel to assess my finger length.  After admiring my manicure and noting to myself that I could use some moisturizer, I was immediately perplexed.  As it turns out, I am a warrior.

Only I am not.

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Yes, my ring finger is longer than my index finger.  By quite a bit, actually.  I even made sure to check the other hand to see if they were consistent which, not surprisingly, they were.  But, I know myself pretty well and would argue (as would most of my most intimate acquaintances) that I am solidly a worrier.  In fact, there are people in my life (RRL and MLS, I am talking to you) who have given me the moniker “pre-worrier”.  You see, I don’t just worry, I worry about things that maybe, possibly, if the stars are aligned and in a particular sun, could happen.  Most of them never do, yet I still worry.

On the other hand, big things are a breeze for me.  My mother often grumbles (with a bit more than an air of irritation) about my unique ability to sail through monumental things like a bi-lateral mastectomy, but freak out if my hair isn’t cooperating.  I can handle (with a fair degree of aplomb) notifying my entire community that my son would heretofore be my daughter, but when some bitch who normally registers nothing on my radar of people I give a crap about looks at me sideways I am in a puddle.  Sounds more like a worrier than a warrior to me.

According to dictionary.com, a warrior is a person who shows or has shown great vigor, courage or aggressiveness.   Oh, well, if you put it that way…perhaps I am part warrior.  Color me confused.

But I have long owned (embraced, even) the realities of being a worrier…and a hardcore worrier at that.  I have more full-fledged, certified panic attacks under my belt than I care to remember.   I like knowing that I have a Xanax available, should the need arise and I have spent countless hours obsessing over the infinite “what ifs” of the world, with little positive outcome.  I fret over the minutiae of life and constantly weigh myself down with unnecessary anxiety.  Given those actualities, you, too, would consider me a worrier.

However, that whole longer-ring-finger phenomenon must be based on some kind of fact – it was on NPR, after all.   Add to that dictionary.com’s definition and, well, a pattern is emerging.  I have shown vigor, courage and, most certainly, aggressiveness in my lifetime.  I have, in fact, exhibited each of those characteristics on more than one occasion, and sometimes all at the same time.  I am fairly certain that many on the outside looking in on our story as it unfolds would call me a warrior, if, for no other reason than my having gone wide with what many would consider a very personal adventure.  As the ride continues its ascent (or are we on a descent?) I am, with slightly more regularity, embracing my inner warrior and telling the worrier to pound sand.  This does not, in any way, shape or form, solidify my warrior status, though.

Which got me to thinking…and looking at my hands.  Perhaps the fact that my index finger and its neighbor the ring finger lean in towards one another suggests a cosmic pull between my inner worrier/warrior.  (Or it could be early arthritis.)  And maybe there is some sort of meaning attached to the fact that I have enormous hands.  (Or I might just have inherited them from my mother who, in turn, got them from her father.)  And perhaps there is a study going on, at this very moment, looking at the significance of long nail beds versus short nail beds.  Regardless, it is not lost on me that when you say “worrier” or “warrior” quickly, they are nearly indiscernible.  And maybe, just maybe, that means more than any research may seek to prove.  And perhaps I am a new breed: a warrior worrier.

Picture This

I am a tremendous and loyal fan of Jessie’s school.  To a person, they have handled her (and me, frankly) with a perfect balance of support and  love (some tough, but mostly straight up).  They have made what could have been a disastrous transition as seamless as I could ever have hoped for.  The administrators, teachers and professionals clearly have our backs and for that, I will forever be appreciative.  This week, however, school is killin’ me.

For starters, after two “hurricane days” last week, one professional day (which also happened to be election day) (and also happened to focus on just how seriously our town takes anti-bullying!) and one (unbeknownst to me – my bad) early release this week, I am desperately seeking more than a few hours during the day to accomplish something.   I found out about the early release the hard way when I received a call ten minutes after the bell, smack dab in the middle of a torrential rainstorm (thereby making the, “you can walk home” response just plain mean) while I was at the market.  (Points for me: not only was I getting ingredients for a hearty, delicious and nutritious dinner, I even texted Harrison to see if he would prefer lasagna or chili.  He chose chili.  Please don’t be the one to tell Jessie that while I was forgetting to pick her up, I was simultaneously not seeking her input on dinner choices.  Doesn’t she have enough to talk about in therapy?)  So, yes, I think we can all agree that all those “no school” hours are tiresome when they come one on top of another.

Second, and more troubling, is Jessie’s role as Student of the Week.  Yeah, I didn’t think that they still had that in fifth grade, either, but alas they do.  She arrived home with a poster board sized sheet of paper designed to share more about herself with her classmates.  (I know, what’s left to share?…).  It is all fairly benign with one notable exception: the 4” x 6” blanks calling for photographs.  Aw, crap.

One of the many issues that families of transgender kids (or adults, for that matter) deal with is the past.  Many of them want to pretend the past never happened as it was often a painful, unhappy time for them.  Having transitioned, they have found a freedom and comfort in their own skin which eluded them before…so why would they want to be reminded?  Well, I totally get that.  I also totally get that of the three photographs being requested, one is entitled: Travel Guide.  Because the audience is made up of ten-year olds, the word “travel” can be construed in less rigid terms than we adults might deem; one would think that a “trip” apple picking could be considered appropriate.  However…Jessie’s school is made up of children from all over the world.  As such, it is not unusual for the trips they discuss to include, (with great regularity, actually) places like Israel, Korea, Pakistan or Argentina.  I feel for Jessie, therefore, in her desire to showcase something a little more exciting than splashing in the neighborhood pool last summer.  Well, guess what?  With all that has been going on around here, we haven’t gone anywhere that could pass as travel.  She (desperately?) suggested using a snapshot from a trip to Disney World (when she was six!) but halted when she realized (remembered?) that in all of those shots, she is George.  Let that wash over you for a moment.

Okay, so now you see my point and the quandary we face; either leave the space glaringly blank, or fill it with an outdated (oh, so outdated) shot of Jessie younger, smaller and, yep, a boy.  File under: things you never think you will have to think about, but wind up thinking about all the time.  Now I know full well that it is a fair and (one could argue) fun activity for the average kid.  But, oh, wait…my kid doesn’t fall into that category, so what is meant to be a rah-rah, self-esteem building activity (who doesn’t want to be the Student of the Week?  Or Parent of the Week?  Or Spouse of the Week? Hell, I would take Best Hair of the Week!) is now stressing us out.  Hate that.

I still love our school and perhaps, had we had a full week of full days of classes I would be less traumatized by this little blip, but, alas, we have not had a full week of full days of classes so I am seeing this blip as more monumental than I (intellectually, anyway) know it is.  We will figure something out.  Just not sure what.

p.s. Since this is my blog and you have chosen to read it, I will assume you will allow me a little indulgence in showing off a drawing that Jessie did the other day.  (Many of you have seen it already on Facebook.  Sorry ’bout that!) She is as proud of it as she should be and has decided to include it on her “Student of the Week” poster in the one untitled photograph box.  She may look vaguely familiar (full disclosure: Jess had to tell me who it was), particularly if you are a fan of “Twilight”.  Dear readers, this is Jessie’s interpretation of Kristen Stewart, aka Bella, with whom she is mildly obsessed.  If only she had drawn her travelling somewhere!

The Blahs

Some days are decidedly (and sometimes inexplicably) tougher than others.  In my world, there is often a strong correlation between the success of the day and the success of the prior night’s sleep.  Sometimes the weather, or even just the forecast, will place my emotions in an anticipatory spot: hot and sticky –> bad, cool and dry –> good.  The mood(s) and side of the bed upon which any of the other three people with whom I live awaken can similarly effect how the day ahead will play out.  But sometimes, no matter how well I might have slept, how good the weather may be or how content each of my housemates currently are, the day just isn’t easy.

There are times that a dramatic event of some sort will stack the deck against me.  Other times the most minute comment, interaction or exchange can send me reeling.  And other times, none of the above can be blamed.  It is just that kind of day.

This morning, for example, I awoke after an unfitful nine hours of sleep (without, I might add, the aid of either a Valium or a glass of wine) and the rhythm of the house was as smooth as I would ever be bold enough to hope for on a school day.  The weather report told me that the rain was heading out and that a bright, sunny, crisp Fall day lay ahead.  Everything was leaning in my favor, yet I felt out of sorts from the moment I log-rolled out of bed. (Log-rolling, for the uninformed, is a manner of getting out of bed that “promises” – and I use the term loosely – to cause the least amount of pain for people like me with lousy, cranky, evil, angry backs.  I learned the technique from a nurse at the hospital after the first of my three surgeries who, when I asked how long I would need to get up that way responded: “forever”.  Ouch.)  Physical pain aside, I had no other external factors to support a blah day ahead, yet it was evident from the time the alarm screeched in my ear that it was today’s destiny.

As the day progressed I lifted a bit from the fog, but still felt (um, feel?) the weight of the world resting squarely on my shoulders.  Perhaps most annoying is that there is no apparent reason why today should feel any different from any other day.  Anddddd, having been born with a particular psyche, I cannot help but wonder if the cosmos know something I don’t.  Hate that.

In fact, and perhaps ironically, Jessie arrived home from school having completed her homework (thank you teachers who stay after hours for such activities), requested a (almost healthy) snack and then literally curled up with a book.  (Anyone who has a dyslexic child knows that this scenario simply doesn’t happen.  Ever.)  Which begs the question: Who is she and what has she done with Jessie?!?  This simply doesn’t add up – she  left this morning on time and without bother, arrived home calm and self-entertaining and has remained so ever since.  What may be a normal day for most is strikingly abnormal for me but instead of just going with it, I, of course (thank you neurotic self) wonder what it means.  One could (and likely will) argue that I should be in a grand mood, just like she is.  But, alas, I am not.  What up with that?

All in all things are actually “okay” right now (she said as she throws salt over her shoulder, sidesteps cracks in the sidewalk, steers clear of black cats and avoid ladders at all costs) which makes my malaise all the more irritating.  Perhaps it speaks to the calm between storms?  Or maybe my delicious slumber of last night was to be the last for a while?  Or, and this I would dread, the weather is going to turn hot and sticky in a freak October weather pattern and my gut somehow knows that, as if the general blahs weren’t enough, bad hair is looming.  Or, maybe I am just having a terrible, horrible, no good, very bad* day for no real reason at all.  Just lucky, I guess.

*Actually, it wasn’t terrible, horrible, no good or very bad…just blah.

Really?!

I’ve been known to laugh out loud about stupid, random things long after they have occurred.  Like the time Rich and I were out to dinner with our friend the brain surgeon who, out of the corner of my eye,  I could see was struggling to close the oversized tri-fold menu from which we were ordering.  We were sitting next to one another so my view was purely peripheral and it was not until he became exasperated and mumbled, “I can’t close this fucking menu” that I cracked up.  That happened months ago, yet I have, on many more than one occasion, been reminded of it (like, oh, I don’t know, when I see a menu?) and proceeded to crack up all over again.  And there was the incident during which my coffee date, who had just shared the bizarre oddities he has noticed about himself as he has gotten older (he just turned 50) began frantically darting his head around the room as though there was something chiming or chirping or buzzing or ringing only to be told (by me) that it was utterly silent.  Granted, that just happened two days ago, but I am still laughing about it.  Similarly, I believe I will be laughing for a while over the time I received the first negative comments to my blog.

In my admission that I was struggling to come up with anything truly blog worthy, I had the audacity to post (on my blog) a silly rant about my curls and a (likely temporary) decision to embrace them.  The entry was fluffy, did not touch on the specifics of any real issue surrounding my child who has identified as transgender, or my frighteningly close to eighteen year old’s travails, or my marriage or my sanity yet it was, apparently, the most offensive of all the posts I have ever written.

Here is the first comment, which, I must admit, initially (like for a nanosecond) saddened me and made me second guess my egregious decision to post what was on my mind:

I found your blog when I learned that a friend’s child was dealing with transgender issues. I was hoping that your blog would give me more insight into what the family faces in order to provide support where it is appropriate. In general you are not sharing much information and your blog posts are vague and uninformative…should I keep reading or are you now reconsidering your original intentions?

Here is the first response I wrote:

Really?  Go fuck yourself.

And here is the one I posted:

I am sorry to disappoint. If you go back in the blogs you will see the adventure that is all part of living with a child who identifies as transgender and if you think a bit about each post you will see that they all do, in fact, shed light on what a family goes through during this process. Admittedly, some posts are more “vague” and “uninformative” than others, but so, too, is life with a child of any kind – transgender or not.
It is entirely up to you whether you want to continue reading or not. I would love to have you, but certainly don’t want to waste your time.

Not gonna lie: I kinda wish I had stuck with the first one.  But, alas, the day was young and I would have another opportunity soon enough.  Among the many positive and supportive comments yet another one popped up:

Hair care products? Really?

My first and final response:

Yeah, really. Sometimes life feels like a train wreck and something as ridiculous as a good hair product can make an otherwise shitty day just a little bit better. You are seriously offended? Wow…I file that under: your problem, not mine. That said, my hair looks spankin’ and my day was better as a result. That is all part of this whole parenting game: doing whatever it takes to make it just that much easier.

Which, in my mind, was as close to “Yeah, really.  Go fuck yourself” as I, being a classy lady, was willing to go.

Now to the part that makes me laugh.  I have written sixty posts, of varying levels of depth and intense honesty which have had well over 100,000 views and over 1,500 comments (and this number does not include the comment thread on HuffPo or The Boston Phoenix!) none of which were as offended (and offensive) as these two.  In fact, over dinner last night I was telling Rich about them and we literally started to laugh.

Really?  I have written of my “daughter with a penis” and my hysteria over finding an appropriate bathing suit (for her, not for me, although that could be a whole blog unto itself…), of my fears and concerns for her, and frankly our family’s, future and not one, but two readers took offense at my discussion of curly hair????  It was funny.

This is a kinda big deal, actually.  A few months ago, I would not have seen the humor in this.  (Oh, who am I kidding, I might not have seen the humor yesterday or, frankly, tomorrow, but whatevs.) The fact that I was able to this time, however, signaled to me a newfound strength that I have apparently built within my psyche.  At no point did I say to myself, “Bad Julie…you goof” rather I realized that it is actually these commenters who are the goofs and not I. I think I may need to thank my therapist for that.  (Note:  I have not identified either one, though I do have that power should I choose to exercise it.  Further, I had the choice to not approve the comments, yet I did.  One more point for me?)

So, thank you off-centered readers for providing  another tidbit that made me laugh which I am sure to revisit in my head (probably while sitting at a red light admiring my curls in the rearview mirror) and find funny.  I hope y’all deem this entry  acceptable.

The Curls Have It?

I have started seventeen blog entries this week.  Okay, maybe it wasn’t seventeen, but it felt like at least fifteen.  None is complete and all fall into one (or many) of the following categories: depressing, stupid, TMI, depressing (yeah, I know I already said that), irritating, infuriating or depressing (shut up, I know).  As such, I am trying, yet again, to be articulate, witty, profound and poignant: all unsuccessfully.

Having just returned from the gym I am going to have a shower and pray to the water G-ds to instill me with not only a clean and fragrant body, but an inspired spirit.  I hope to return feeling enlivened and smelling better than I do right now.

Twenty three minutes later:

My body and my hair are now clean.  I have put on the necessary make-up (primarily moisturizer and, duh, mascara) and have Ouidad-ed my hair to within an inch of its life. (www.ouidad.com)  I’ve embraced my curls and I am sure to bump into someone who will comment that they “love my hair curly!”  I will not share their sentiment, but having been pressured to try aforementioned Ouidad I will admit to being happier with them than I have in the past.  Much happier: which goes a long way these days.

The start of one of the many aborted blogs was discussing the inadvisability (and unpleasantness) of having everyone in the house in a funk (which has varying definitions depending upon which family member we are referring to) at the same time.  It was that one which led me to my decision that it was too depressing, stupid, TMI-ish, irritating, infuriating and again, depressing to elaborate upon.  It is also that which has rendered me unable to fulfill my blogging requirements and expectations.  And, truth be told, it is driving me nuts.

When all the proverbial shit hit the proverbial fan several months ago, I was devastated by many things, by far not the least of which was my inability to write.  I had trouble constructing a list for the supermarket, let alone anything of any value.  I considered it the nadir of my emotional life.  It depressed and scared me perhaps more than everything else that lay ahead.  It wasn’t even that I was blogging or even emailing all that much – it was the fact that I had lost all access to an original or articulate thought which, to me, signaled the end.

And then I rallied.  I could sit at my laptop (when it wasn’t being used by a certain ten-year old who deemed her computer too slow so needed to hijack mine) and bang out a piece that was meaningful and appreciated.  Many of my favorites I can hardly recall composing…it just flowed naturally.  Now?  Not so much.  Right this moment, I liken my lack of creativity to a closed toilet lid: you suspect there is something in there, but you are reluctant to take a peek not knowing what you might find, in part because it could be ugly and, somehow worse, it could be empty.   (I know that a lot of people make it a habit to keep the lid down.  Around these parts the lid is always open, just waiting for a visitor or an overflow.  One just never knows.  Especially around here.)  Oh, I know it is a gross analogy, but no one ever said this was going to be a fun, classy or easy blogging journey.

Just bear with me.  I am sure I will get my mojo back one of these days.  Perhaps my curly tresses (again: www.ouidad.com) and reclaimed laptop (my mother, bless her heart, just gave Jessie her old one which translates to no more sharing for me!) will give me the slap upside the head that I seem to need.  I hate to disappoint y’all but trust me…the other blogs I started would do little other than either bum you out or make you ever more grateful that you are not me.  I’ve shaken things up with my hair, so perhaps my creativity will follow suit.  No pressure, Ouidad, (www.ouidad.com) but here’s hoping you hold the magic (curling) wand.

p.s. Special thanks and shout out to HKS of Needham, NYC and Ouidad fame…