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).

Medical Trauma is more than falling down a flight of stairs

The title says it all right??

I have always thought trauma during illness exists in a similar way as trauma following an assault, with the same anxieties, the same need for grounding or reconciliation, with triggers that are sensate in nature (a scent, a song/sound) and though I cannot really elaborate on this feeling I know it is there when my face starts to tingle or I recall something obscure from the past that, when placed in its context, jars me.  Or both.  Or simply when I stub a toe and wail helplessly even though I clearly will be okay!

Last month was CMT Awareness Month and on the last night of the month I had a dream that really shook me.  I should add that vivid dreams are a frequent effect of the medication that helps me sleep at night, though most of them are ordinary.  I do not recall the context of this dream but I was going on some type of tour or vacation with a group of people, most of them were adults.  I think my husband was there.  I do not think my sons were there.  We were in California so we stopped by Claremont.

Claremont was supposed to be the chasm to my dream life (false, it never got to be that) and Pitzer College was going to be the channel to that means (truthish)... but instead it was the catalyst to the hardest, most bitterly painful period I have gone through so far.  It was supposed to be my giant FU to every person, mainly professional, who encouraged me to stop walking, it was supposed to be the FU to my neuropathy.  I was supposed to bask in the warmer tempuratures (non truth, the desert gets cold and the Midwest stays unseasonably warm at times; even if the evenings in Claremont never dipped below 30 degrees cold is cold is cold) and walk in that super tiny, could fit in the palm of my suburbian childhood atmosphere (truth, it was the size of my parents' ranch style, 1960s built, Ladueish, neighborhood), college campus.

And in my dream we were in the main hall on the academic side, overlooking the parking lot, where I introduced my "audience" to the College and said "... here is where I took my last steps." And with that realization the dream sequence ended.

When I was ten and barely knew what was "wrong" with me (those parentheses are to emphasis that this is, unapologetically, something abnormal and that being aware of that contrast is prerequisite to healing, not the super sugar coated idea that everything is okay, let's talk about the bad stuff) I had returned home from India to realize I literally could not walk without the full support of a walker - as in my left leg would not lift up, move forward, and plant itself down.  My right leg could do this synchronized activity but I would wobble on my left side.  No one told me my condition was progressive and no one warned me that inactivity was the abusive step parent of degeneration.  After that and the repetitive assurances that this was my normal (false, how is that reassuring? Do doctors stop and listen to their proclamations?), I not so secretly avowed to make walking, in this eclipsed form last as long as I could - which was longer than most expected it to persist.  

As I approached the end of high school I thought if I could find a college that was small enough, and I could spend the years between eighteen and twenty two consumed with, and therefore maintaining the muscle, bone, nerve, and blood vessel memory needed in walking, the hardest part would be over.  After all graduate schools and work spaces would be smaller distances and more supportive of my not-very-ambulatory lifestyle.

I barely walked in college; the only time I walked around the campus was when I toured it for the first time before ever applying -while in college I only walked briefly in my freshman dormitory hall.  And when I did it felt so foreign to me.  I packed my bags and moved away from everything I knew, without considering what could happen if things did not go my way, and without realizing that in moving across the country, I had left the place where walking was my second nature.  I had a blank canvas in my modified single room at Holden Hall but with no familiar nooks or infrastructure to support walking or to catch myself on when I lost my balance for the hundredth time.  The realization that when I thought I was moving toward walking, I had actually moved myself away from it, that I left the only context where it made sense, was too painful.  

On a barely understandable level I knew that IT was over, but I had spent so long fighting for it and cherishing it, and perhaps unwillingly forcing it at the end, that the emptiness turned into a deep, charring anger.  I made decision after terrible decision that could have jeopardized my future, because that was easier than facing either the idea that this (non walking business) was as inevitable as everyone had told me it would be, or that I had not done enough.  That I stopped fighting and let myself be carried downstream by my neuropathy and gave in to that undercurrent of inevitability.  And I left Pitzer only to never return.

I started healing and good things happened.  A lot of amazing things happened fast.  But it took me eleven years post freshman year to realize that Pitzer still leaves me with a face-tingling, nagging feeling. And I have been dealing with that for two years now.

Whether it's minor details like remembering which curb cuts worked for me and which did not, being able to pin point routes I took across the five Claremont colleges, or the way the five academic buildings interlock on the second floor... Or a dream like last night where I do go back but all I remember is compulsively photographing everything.  It's all trauma and I wish to someday return to either reconcile the pain and the memories or to transcend them.

The day I quit physical therapy

A year ago I contacted my physiatrist's office in tears to say that my therapist had recommended a stander. I was simultaneously talking, bawling, and choking. And the person who answers the phone at the doctor's office is there to take down messages not console someone who is heartbroken. So she was focused on getting the prescription and I had to interrupt her with an "I do not really want it."  So why was I having the conversation? 

I had my return visit with my extraordinaire physical therapist a few days back. This man had gotten me semi-weight bearing on my gimp leg. Granted that was more than a dozen years ago and the angry illness retaliated, but for those few months were nice. And he was the only professional who had tried to preserve walking rather than give it up in advance of the disease. 

At the appointment he told me that getting me on my feet would be the only way to correct my leg. No pool work. No stretches. I was mortified. The contrast between the teenage version of me, that walked to the beat of her own drum, and who clung to the idea of never stopping walking versus the present shadow of my rebellious self, the girl that gave in and quit walking was embarrassing. Did I spend the last decade making decisions that took me further and further from my once self?

The fact that the therapist was (what felt like) bargaining with me to use this device was too much. I was embarrassed and I just could not do it. Plus a week later I hit my foot pretty bad. So I quit therapy.