Tag Archives: illness

A Personal War (in pieces) 

10 Mar

I’m not usually a novelty coffee mug person but I saw this when I was running errands last Friday night.

 

wp-image-664197919jpg.jpg

 

It’s a blue bunny (like my bunny girl, Otis), I say “hop to it” frequently to kid and coparent, and the glasses and bowtie reminded me of something, but that memory glubglubbed just below the surface…a few days later I learned an old friend had passed…

And I realized that was who this mug was bringing to the surface.  The memories followed and I was in that high school hallway again and Mr. Fleck was telling him I would be missing the end of my senior year, specifically finals. He told him it was because I was sick and would be in the hospital. Mr. Pryor cried. He cried, for me. I had not cried yet, because I had not been alone and safe enough and so much was unknown. But he cried. His compassion and his empathy for the process I was just beginning is an overwhelming, emotional memory. I am in the bookstore on Greenwich Avenue, a year and a half later, after I have crashed and burned through Kubler-Ross, picked my self up with M. Scott Peck, and dusted myself off with nourishing Bernie Siegel.  He is happy to see me. I had been feeling rather ineffective and invisible and was teetering on the edge of a full blown existential crisis. I joke with him about putting barbed wire around the literature section and asking seekers of lit a few questions to determine if I would bestow upon them the precious volumes or if I would provide the corresponding Cliff Notes (it was summertime and even parents would come in to purchase the school required summer reading for their kids and most of them opted for the Cliff Notes over the full books). The next week another adored teacher from school came in. After that,  I would see both of them, frequently, as they always stopped in to say hello.

After a year and a half of working at the bookstore, living at home, and indulging in a motley assortment of night courses at SUNY Purchase, I lept from the nest a second time and headed to Boston intending to pursue a degree and training in cinematography & camerawork.

Septic shock took me out of this body and mind a few months later, and when I was out of the coma and done with surgery, I learned to sit up, stand, and walk again. I learned to sit up and hold things in my hand. I held a spoon. A pencil. My Filofax.

My Filofax.

For me the organizer was a diligent effort toward a resolution for the new year,  to stop storing the details of college and work, all cluttered, in my brain. The black rubbery cover held my only memories, and as it was a newly started calendar and address book(it was only 2.5 weeks into January) it contained little.  I didn’t recognize any names, but I started making phone calls because I was on a metric shit-ton of IV morphine. (Looking back, if I had not opened those pages and started dialing, out of a super-stoned, toddlerish curiosity, my son would not exist today, as his dad was under the C tab, and I was going alphabetically  (but that is another story to share later).)

Some things, some people, were absent from my organizer, and ceased to exist in my sunshiny, spotless world.

Mr. Pryor. Mr. Vaught. Dr. Pavlica. Mr. Montgomery. Ms. Becker.

Until a friend told me of Dr. Pavlica’s passing. And then a few years later, with the magic of Facebook, the memory of Mont was returned, alive and well and exploring Greece with his wife. Then Mr. Vaught passed last year and that news returned him, to me.

Then this week, when I sipped my tea from my bowtied, spectacled blue bunny mug and read on Facebook that Mr. Pryor had passed away.

 
Mr. Pryor.

 
And there I was, near the start of this post, in the hallway, seeing my teacher, who I would call friend, crying for me and my broken pancreas.

 

That is the raw, shitty deal of amnesia.

I’d be more ok with not recalling the texture of my desk,  and the phenolic odor of lab tables with hints of metal chair feet scraped against linoleum , the temperature of the air, the light through the tree shaded windows of the first floor science room, the smell of pencil shavings and warm, freshly exfoliated eraser crumbs, the temperature and the sound as my hand squorsquishes into a forgotten apple in my overloaded backpack.

I could lose that stuff and not mind.

I do not feel as generous about losing whole people.

I am not comfortable with misplacing entire friends, formative experiences, or the multisensory snapshots of spaces in which my life happened.

The endless gift of amnesia is that memories are reconnected and returned erratically and surprisingly. Even the memories rife with terror and pain have value now. Focusing on the return of objective memories is almost like fleshing out a visual, spatial, olfactory timeline and I permit myself to only dive far enough in – as though a bungee tether has me anchored in the present day- to view objective details enough that the Swamp of Sadness (that took took Artu and nearly swallowed Atreyu in Michael Ende’s The Neverending Story)  cannot drag me into the sulking, sucking, stinking, deadly muck. This is a hard-earned, and worthy, skill to master, as every recall hides an abundance of pressure switches.

I have learned that even the terrifying, painful, and heartbreakingly sad memories are treasures when they are returned to me, and not because I love me some psychological torture and relish the PTSD experience, but because I’ve weathered enough in 41 years to spot the tiniest speck of glitter in a fetid heap of the ripest rot. And each wee sparkle fans out dendrites, bringing other memories closer.

I realized, a couple of weeks ago, that I don’t need many of these memories (reminds me of Harry’s rant about Auld Lang Syne in “When Harry Met Sally…”

Harry [about Auld Lang Syne]:   What does this song mean? My whole life, I don’t know what this song means. I mean, ‘Should old acquaintance be forgot’? Does that mean that we should forget old acquaintances, or does it mean if we happened to forget them, we should remember them, which is not possible because we already forgot?

Sally:    Well, maybe it just means that we should remember that we forgot them or something. Anyway, it’s about old friends.)

I don’t need them.

If I can’t remember them, I can only miss the idea of them (again, from “When Harry Met Sally…”:  Harry Burns: Maybe I only miss the *idea* of Helen… No, I miss the whole Helen.) but these content-less hunts of time, occassionally spotted with foggy islands of indeterminate terrain and potentially combative or predatory or friendly fauna hidden by strangling vines, stinging nettle, poison ivy, and heady, delicate gardenia, hold importance to me and that curiosity is not decreased by my lust for information and tireless enthusiasm for connecting ideas.

I recognize my miss-filed memories are important, to me, but I newly recognize that I cannot mourn their absence.  I am developing a more organic appreciation that most keepers of standard-issue (non-autistic, non-synesthetic) brains, who have not weathered two neurologically symptomatic endocrine tumors, do not remember every environmental, sensory, qualitative detail the way I do.

So I can relax now and not chomp at the bit quite so hard when it comes to the reclamation of every moment, every detail, every memory.

I am learning to curate my mind, my memories, my world while carefully maintaining integrity and feeding my hunger for personal objectivity through truth, facts.

It is through this (still very intentional, deliberate) curating and objectivity that I’m learning to express the more subjective and more primal parts of me (how I was trained to ignore those things is another story, for another time).

 

Rest in Peace, Mr. Pryor, and thank you. I’m sorry I misplaced you for so long and missed our friendship. You are remembered for your compassion, kindness, and your delightful wit and biting sarcasm. I’m glad I found you again.

xo,

 

Rebecca I. M.

This is it….Now I have Huey Lewis & The News in my head.

14 Oct

for today.  Too crummy feeling to write anything meaningful… Though Grey’s did set me off on a rant this evening. I mean really, who wouldn’t want a decommissioned firehouse reno with a fire pole to call their own!??!?!?  And letting nature take it’s course as far as getting pregnant with a reproductive issue and a genetic issue possibly on the table (I think the truth is always the best thing) for Meredith and Derrick… It made me a wee bit bitter.

A good percentage of us don’t get that avoiding science and medicine thing at all in our lives, and especially when it comes to having kids. And for many of us it’s not by choice that we have to have all sorts of interventions, and it’s not our fault (though people sending me links on how I can cure what can’t be cured is getting old.  Also getting old: people sending me thick photocopies of information on curing a disease I don’t have.  I have Type 1 diabetes even though I’m 34 and well padded- an unwelcome reaction to the various treatments I have had over the years and tight control and loss of mobility due to other crap. Jiminy freaking crickets.  I get that people want to help, but here’s some advice to friends and relatives and strangers:  if you find out a loved one is sick or has a chronic condition- before you send them all kinds of stuff (particularly “cure” crap and assorted “the medicine you are on is evil” crap (because it may be the only medicine they can take for what they have) stop and check your ego and ask “what can I do?” or “is there anything I should know or read?” or “can you recommend a link/site where I can learn more?”.  That would be huge for everyone.  Instead, those of us living with various illnesses that we did not ask for or give to ourselves would stop feeling isolated and instead feel supported and yay!   That would be heartwarming and take a whole pile of anger out of the universe- or I guess because it cannot be created or destroyed, it would shift into warm, cozy, happy. Again:  YAY!

Darnit. I lost my train of thought and my eyes are all achy and swimmy.  I can’t keep track of my parentheses.  My apologies.

I’d like to think I wouldn’t be this cranky if I could take cold medicine or nyquil, but I can’t take that shtuff, so it’s saline and Coldcare (boiron. Works well, but man could I use a nyquil-style sleep right about now).

ROAR! YOUCH!

I think I’m going back to my Little House on the Prairie and BONES diet.  At least until I’m feeling better. But today was the LHOP where Pa has to put Bunny (Laura’s horse) down and her Grandpa said he wouldn’t let him do it, but he had no choice in the matter because it would have been cruel not to put Bunny down because back then they didn’t have hospitals like Angell in Boston and specialists who… Anyway.  That and the Nellie pretending to be paralyzed episode from yesterday (I have discovered the Hallmark channel) have put me in a mood (and because I’m sick, and I’ve got a bear of another thing to deal with that I’ll talk about soon. Promise.)

Ok. This is really it for today.

Oh! Got my Cimzia starter kits, but can’t start until my fever is gone (my “I’m sick and hurty in a viral-flu-ish kind of a way” fever and not my usual “my immune system is going gangbusters on everything today” fever.  I swear, sometimes I think my immune system is like a cat chasing a speck of dust it think it saw in a shaft of sunlight.)

Goodnight.  Hope everyone is feeling fantastic, washing hands frequently (as flu season barrels down on us), and if you are feeling crappy I hope you are feeling better soon and don’t forget to cover your cough and sneeze with the inside of your elbow.

No really. This is it.  I’m 3/4 asleep and keep leaning on one key (I have been known to type-and fairly accurately- in my sleep, but today is not that day).

xo

B

P.S. Had a weird dream this afternoon that I was shopping with the fearless leader of this NaBloWriMo thingy and the brilliant mind behind “I’m Not Hannah”.  We were at this mega-shopping center thing.  It was like an open air Mall of America kind of thing and we were supposed to buy birthday presents for the kids and then do our own errands and meet up to drive back home.  It was a peculiar dream as I don’t think either of us are “mall people” (haven’t been to a mall in over 4 years.  I’m kind of weirdly proud of that fact.)

A Letter to Patients With Chronic Disease…

18 Aug

I think this blog entry, from distractible.org, offers an interesting perspective… Food for thought for those of us living with chronic illness and food for thought to everyone in the medical profession who may come in contact with PEOPLE with chronic illness.  I do suggest that folks who think that those of us with chronic illness are just negative and whiny, especially about the medical profession, read the comments after the letter from Dr. Rob.

Be sure to add your comment there, or here. That is totally up to you, my dearies :-)

Here’s the link:

A Letter to Patients With Chronic Disease.

xo

Bek

Stay of Execution

21 Mar

This feels like a stay of execution.

This busted body is fading fast, but now maybe it can get the care it needs to stick around a little while more and advocate for my kid and his special needs.

Grateful.

xo

Bek

Alive and Chicken.

26 Mar

(misheard song lyric)

Just a quick update to let everyone know that I am still here, but energy has been spewing everywhere but the blog! I’m caught mid-xfer…Trying to move everything to typepad, but don’t have the energy to reformat posts and deal with the tagging/category translation screwup… Soooo… I’m still here…Still updating here… Posting occasional photos over there… Trying to decide if I should separate my art and my adventures in healthcare and parenting, but at the same time they all co-exist, maybe not so happily all the time, but I never intended for this blog to be a pristine studio portrait, I wanted it to be a pile of polaroids, fingerprints on the lens and all…So I am still on the fence…Will announce the big move more officially soon.

The universe just keeps dropping traffic cones and those Bob’s barricades hurdle-y mini-fence things (pylons?) everywhere I turn…Just enough so I can put up my arms and say “why!” but then it dumps piles of paper in those outstretched arms, honey gets somehow dumped over my head, and then the freaking universe turns a fan on. A FAN! What the #*@&? (see I have been working on my potty mouth)

Wish I could handle all of this with zen like grace and a serene moon-like glow, wish I could post an entry about managing stress, illness, parenting a special needs kid, financial drama at homeplate, and how it’s all a great big fabulous TA-DA! learning experience, but we all know that when you are eyeball deep n the big steamy, chunky stew that insight will happen eventually, learning may be around the corner, but right now you’ve got to grab on to that carrot wheel and kick because your life, or at the very least your sanity, depend on it.

No really. I’m ok. I am. or at least I will be.

*insert primal yell here* (yeah, not really me…maybe that should read *insert slightly operatic and comedic bellow*)

Huge hugs all around…
xo
B

%d bloggers like this: