Depression Is

Leaving the family at the ice cream store because my eyes are tearing up.
Telling my six year old he cannot get new shoes today because he does not need them. And feeling guilty because of every time I buy something new (dresses two weeks ago, a fleece jacket that was delivered yesterday). Because my child is crying and I did that.
It's feeling like I cannot take even twenty more years of what CMT can do to me, and crying because of how young my kids are. And how young they will be in twenty years.

It's feeling like I can't survive my youngest starting full day school in three weeks.  Because I will never have a preschooler again. And hating myself for not cherishing this past year.

It is wanting to spend more time with my kids. But knowing that I am only physically comfortable sitting in my bed.

And hating myself for it. And living in my head. And feeling trapped by everything.

This week

Haven't posted in a few months. It's not that nothing has happened... But I've been in my head too much, or not enough, to write about anything. That being said tomorrow I am having an endometrial ablation - basically I am having my uterine walls scalded in an effort to cease having monthly cycles. For years my ability to "manage" during that time has been diminishing and after a bathroom breakdown I came to the realization that something needed to be done. So after turning to social media and calling my OB/GYN we have decided that this is the safest route to go. 

My five year old, after hearing that the doctor waddling something to my belly, asked if I'm having a baby put in me.  Irony is grand. 

1am. Chasing Sleep.

I have been able to mark off the entrance of each decade by marked declines in health/quality of life... Be it walking or wheeling, or simply laying down, each decade is carved on either end with something being taken away, something taking its place, or by the interim void created in between the two: I took my last independent steps at ten, started part time wheeling at eleven, took my last lopsided steps behind a walker at nineteen, and transitioned from manual ("push") wheels to battery operated (but still involving a less forceful "push") wheels at twenty, and final the first completely motorized chair at twenty two.  Midway in my twenties I eased my way into my first rehab chair (more adjustable, including raised, seating, leg rests that raised and lowered... You know the type of chair for people that were reaaaalllly not getting out of their chairs!).

As I edged closer to thirty,  I waited with baited breath trying to figure out what this decade's issue would be.  And somewhere through the shadows of sleepless nights it hit me.  

It was not just sleeplessness that was creeping in but an increasingly uncomfortable and painful issue with my leg.  Something that at its start led to an inability to weight bear on my leg, and at its crux kept me in pain and discomfort constantly.  And while I could stay busy and preoccupied during the day, at night there were no distractions.  And so I tried reaching out for help.

Fast forward through the next twelve months and the dialogue turned from one over walking, splinting, operating, bone bending, stretching, electrode stimulating, forced standing, bone shattering, and sleep studies. Multiple providers with multiple opinions and  I was beginning to feel like a cliché ("All the King's horses and al the King's men couldn't put Humpty together again").  I was completely drained after well over a year of chronically under sleeping.  I had days when I left work early because I just could not take the lack of a diagnose or a clear direction pointing toward one.  

Out of frustration I stopped looking for answers or hope.  I decided that somewhere between the best outcome (aside from actually having my leg lay comfortably or being able to move it comfortably) and the least-worst one would be to sleep solidly for more than a night or two a week (at a maximum).  It wasn't the fix that I wanted but it would be something.

I went on sleep medication.  And tabled the leg issues for the time being.  Truthfully though I never really had a chance to second guess myself because I dove tailed straight into the last ten weeks of my then job and the onset of the carpal and cubital tunnel issues that dominated the course of the following twelve months.  

And for about eight months I slept well.  I still needed my husband's help multiple times at night to help me get comfortable but at least the time it took from reposition to resleep was manageable.  As I approached surgery on my dominant arm, the medicine failed to help.  Faced with the daunting possibility of not being able to reposition my left leg and not being able to lean on my right arm to get up and find a better position for weeks, I frantically, but carefully, changed medicines under my primary physician's care.

The thing about sleeping medication or pain medication, is that I have seen a lot of my clients (from when I could work) doctor-shop and pharmacy-shop in a frenzied hurry.  I know all to well how awful it feels as an adult when you cannot self-soothe your own body.  And those feelings strike tenfold when it is 1am. 2am. 3am...  I dislike taking any medication for anything other than an acute and temporary ailment, regardless of how assuring its "non habit forming" promises may sound.

I hope and think my doctors "get it" and view my cmt and its extraordinary affects on my pain, discomfort, deformity and disfunction as more than clinical manifestations of an untouchable disease state.  I hope that they understand that sometimes sleep is about much more than sleep.  Even with medication to help me sleep I still struggled with the inability to get my leg comfortable and also with a growing restlessness in my legs.  And emotionally I really grappled with this -how can I nervously and frantically want to move my leg if I cannot move it period? And when the restlessness is accompanied by spasms, how can I have an overpowering need to forcefully flex my leg if those are micro-movements that I cannot do? And if cmt is the sum total of those crippled micro-movements, why are my normal coping abilities insufficient?  

The day before Thanksgiving I happened to have my bi-annual neurologist meeting.  I do not like her, have never really felt that she was helpful (a post on its own), because she has always seemed to espouse the mentality of viewing cmt symptoms as untouchable, predictable, and "normal" under the circumstances.  But I figured this restlessness was worth mentioning. 

And for once the discussions that have followed have been very engaging.  She told me that restlessness is a central nervous issue, and that since cmt is peripheral, it is possible to both feel the restlessness and not be able to move/do anything about it.  So I am not losing my mind.  

2015

You have been my weirdest year yet.  You have brought my new friends an opportunities, while closing doors and setting tougher boundaries.  I mourned (and still sometimes do) over the loss of working while enjoying and preferring my markedly more quiet moments.

I had two surgeries, four incisions and thirty stitches between both arms, but am wrapping up the year pain free... enough to chaperone field trips and go on last minute, Tuesday-before-Christmas, shopping mall trips with just my five year old.

I spent 1/5th of the year (ten weeks!) not being able to straighten one arm and then the other, but have not lost any function.  We took the kids on their first adventure to the ocean and one of us emptied a bladder at said body of water!

I began 2015 with steroids, antibiotics, and pneumonia and ended it with my first cold in two years that my body could kick without Prednisone.  And through it all you have made my heart grow in a way, and with a fervour, that I could not expect.  Thanks for the memories.

One Decade Ago

To the Daughter I Never Held,

I have not thought about you a lot over the years; I am busy with all things boy mom now.  Maybe it's because ten Novembers ago my body was preparing for, and nourishing, new life, but this year I find myself unexpectedly (re)hit by grief.  It makes this anniversary tougher.  There is a little sting every year around the holidays and, as I finish this post, it is one day after Thanksgiving.

You see, you were not meant to be conceived.  But you were around Thanksgiving, 2005.  I was married, but barely, and did not want to have children for a good five or six years.  I wanted to enjoy early adulthood and travel and spend new pay checks on things we would for sure have to ditch once baby made three.  I was enjoying life and having fun.  But you were there, dividing and multiplying and developing - and there was that ever positive test waiting for my disbelief, four days before Christmas.  I only took it on a whim, not expecting that plus sign; funny how the instructions say to give a pregnancy test two to three minutes to develop, but a positive sign shows up within seconds.

You would think a surprise pregnancy during the holiday season would be celebrated and cherished, yet I never felt so alone.  I did not not want you but I wasn't quite there at the point of wanting you either.  Of course my feelings did not matter to you or my body and the symptoms showed up immediately.  And with no money and a baby coming, Christmas was simple: every person got a book.  My gift was inscribed, "to my wife and unborn child" and I cannot bring myself to read it.  After all, it is yours as much as it is mine.

In the days that followed, I crawled my way towards acceptance and excitement.  I still have an affection for Legally Blonde because I first saw it on cable during this time, and it's silliness helped me through my loneliness.  I first saw little you around seven weeks.  I did not know to fear empty sacs or bestilled hearts.  I expected to see you and there were you with your quick flittering heart.

The doctor assured us that once you have seen your baby's heartbeat on an ultrasound the odds of miscarriage were less than five percent.  You continued growing, I had a birthday, and I started graduate school.  And talked about being pregnant with everyone - it sounded like this pregnancy was going to last!

I had a consult with a high risk doctor who was to opine on being pregnant and being in a wheelchair. I did not expect another chance to see you so soon and hurriedly drank glasses of water in the waiting room. I wanted a nice and full belly so we could get a good look at you.  

I saw you on the screen immediately. You had grown!  You had arms and legs.  Obviously you grew with each new day but I did not expect you to look that much more babylike so soon.  I did not know to look for a heartbeat.  I did not even remotely think you could be gone.  The tech left and came back with this doctor I had never met before.  It was not until after I heard the words, "You have a nine week and [x] days' fetus with no heartbeat and no signs of activity," that I realized you were gone.  The ultrasound ended and we had the misfortune of being ushered into a back hallway full of baby photographs while we waited for the doctor to call my regular doctor.  It was a Friday and she was out so we were told to call back Monday morning.

I do not know how we passed the time, actually I am not sure time passed at all.  Monday morning came and I called the doctor.  I thought the worst part was over.  As it turned out though, the doctor was not sure if I had miscarried.  I had no bleeding and there was not enough of a difference between your age and how far along I should have measured.  Obviously there was still the issue of confirming your heartbeat but the other doctor could have made a mistake.  She could have missed your heartbeat.  You could still be living.  You could just be a few days' behind the predicted age.  So we had to wait more to know for sure that you were gone.  We had another ultrasound scheduled for Thursday.

I lost hope.  Or I should say I did not regain the hope I had lost.  It was easier to continue to be sad and possibly be surprised later than try to be positive and go through the shock once again.  And safer.  And I figured there was no chance (or a very small chance) the doctor was wrong.  I still do not know how I got through that week.  

There you were once again on the ultrasound.  There your arms and legs were once again.  There your heart was once again.  Not beating.  Your pregnancy was over.  Only my body still did not know that.  We were given the option to wait for my body to miscarry, or to have a d&c.  We were warned that even if we tried to let my body do this on its own, I still could need surgery.  I opted for surgery.  I did not want to see anything.  I would never forget you but I was terrified of actually passing (and seeing) you.  I tried to avoid my fears and had surgery that Saturday.  Though nothing prepared me for the pregnancy clots I would pass.  It was obvious my body had been pregnant.  A couple months'
later we found out that the same genetic imbalance that created your ill fate, also meant that you were a girl. 

Even if I never got to hold you, you were real.  You existed because you changed me.  You changed my heart.  You made me a mother as much, if not more, than the babies I had after you.  Before you I was selfish.  Before you I smoked.  I was on several medications that were contraindicated for pregnancy.  I had no plans on stopping those medications.  No plans to even decrease them.  Because of you I had to quit them immediately and entirely, in spite of the psychological effects and the withdrawal.  Before you I was more concerned with my happiness than yours.  After you I was not happy.  I needed to have children.  I could not have you but I could not postpone wanting or waiting for motherhood.  And by the time of my would-have-been due date with you I was pregnant again.  With a boy.  On his first Christmas, two years after I found out about you, we bought our first Christmas tree.  On top of our trees sits an angel.  When I look up at her I like to think of you looking down on us every Christmas.  

By what could-have-been your fourth birthday, we had our second son.  Our house is full of everything Star Wars, Angry Birds, and action figure related. Everything boy.  But lately I feel your shadow - and the shadow of everything lost, everything girl - around us... the frilly bows and cute hats, the dresses, dolls and dollhouses, the tea parties we missed and the Girl Scouts sash we do not have.  I  have to be honest, I want a girl, even if it does not mean I can have you back.  Even if it does not always make sense.  Not only did we lose you, but we lost the chance to have raised a daughter over the past decade. 

A blast from the past

The (un)Making of a Memory

When I was seventeen my parents got me new, adult furniture (a queen bed).  I was ready to ditch my white, faux Victorian looking, canopy bed and matching desk, dresser, nightstand, and mirror.  It was the kind of thing you buy for your little girl because she is your princess, but it was too little girlish.

But as I lay in my big bed I started crying.  At the risk of sounding possessed, I was upset because I had a new room and new furniture and all of a sudden the memories of walking on my own were pushed further away; because my surroundings had changed and I needed something to connect me back to that time.  Something to ground me - to keep the once real from transforming into the surreal, or worse, the unreal.  If you do not have the abilities and you do not have the memories, how do you stay anchored?

My last post was all about the P.C. aka Pitzer College.  Incidentally during my freshman seminar activism in art class we read about monuments that were created more from an absence than a presence... that was also the semester when 911 happened and whenever I think about the pools of water that lie at Ground Zero 

I am reminded of this idea of preserving space with an absence.

I know that P.C. increased its campus size (or its number of buildings) a few years ago.  That perfect campus shape, the reason I went there, is no more.  Had I been born a decade later my life would have, could have, never intersected with the tiny campus and I would have never found a way to (potentially) continue to be able to walk as an adult.

Just like trauma makes the tiny details so vivid and so painful, even the seemingly neutral memories are tainted... like the exterior, interconnected balconies on the second floor of said buildings...or the covered walkways that lead everywhere.

Or the dorm where I took my last steps and the fact that it no longer exists as it was recently demolished.  

I know that you cannot get mad at places for changing... people change, times changes everything but what do you do when the memories fade too?

(These photos are not mine.  They are from Pitzer College, the Honnold Mudd Library, and a website called College Niche.  A good social worker knows how to find exactly what you are looking for and/or is stubborn enough to spend hours searching through photos.  That said the collages are mine and I changed the filters on many of the photos).