As I share the journey of illness, I'm fearful of sounding like a whiner. Yeah, somehow I want to be perceived as someone who's wearing her "big girl panties". I'm more than open talking about what's going on - yada, yada, yada. And, definitely open to crying as the need arises. But really opening up to the fear, and especially the deep anger, well, I express a lot of frustration but go through periods of storing up the big stuff.
Somehow the most intense mixture of these primal emotions comes raging out of me in the parking garages under the lofty medical buildings after appointments. The deep tomb-like mazes of extraordinarily diminutive space and the immediacy of contact with the brusque medical system while in a vulnerable state is a potent recipe for me.
A couple of days ago I went in for what I thought was a routine ultrasound in preparation for thyroid surgery. For some reason the ENT sent me to an ultrasound place specializing in obstetrics. I sat there watching the young couples and women with the telltale bump. The realization hit me that I was accustomed to occupying waiting rooms of sick people not those sporting the promise of the future. I was annoyed by these people. That fact ashamed me. I wanted to feel celebratory for them. I did not.
My appointment unfolded differently than expected. The whispers between medical personnel pointing fingers at the images, the very grave and somber tone of the doc as he explained increased possibilities for malignancy with some of my masses, and the tech who upon saying goodbye rubbed my shoulders and looked long into my eyes and told me that she'd be thinking of me (a highly unusual expression of concern from a medical person)...well, this all got the ground moving beneath my feet a bit.
I kept thinking what are the statistical chances? Brain tumor surgery, diagnosis of a CNS demyelinating disorder being called atypical MS for now, and cancer in the same calendar year?! Ok, I don't know yet -- I could be jumping ahead and creating my medical trifecta prematurely. But just the possibility, well, it felt like a straw.
I was misty-eyed all the way to the parking garage. But once in the car, the flood-gates were set free and I howled to no one, "Make it stop!" A sense of permission to express these passions washed over me and I indulged. When I began to compose myself again, the familiarity of it overwhelmed me. I recalled another garage after a critical appointment with the MS Neurologist and, of course, the garage after my brain tumor diagnosis. Each time engaging in some serious wailing that beared little resemblance to crying. Yeah, for whatever reason, there definitely is a pattern of me losing the big girl panties in the parking garage. Truth told, I think it may take a while to find them again this time.
25 September 2009
19 September 2009
Which superpower would you choose?
If you could have any superpower, which would you choose? A local radio show poses this question in a game called Blatant Stereotyping. From what I recall, the favorite answers are usually along the line of being invisible or able to read minds. Superpowers which seem likely to introduce more problems if you ask me. I'd never really contemplated which I'd choose because, well, it's pretend and I couldn't think of one that didn't serve up its own dilemmas. That is until the other morning.
Aside from an unfortunate stint working at 5 am talking to east coast folks about their retirement plans, I've never been a morning person. These days mornings can be downright wicked and this one had been harder than usual. I awoke in a deep fog struggling to come to the surface. The legs were already sporting buzzing and vibrating -- things that usually happen later in the day as my motor skills wind down. My mind began attempting a prediction of functioning for the day. And, I pondered whether any of this was documentation-worthy.
Whether futile or suggestive of neurotic tendencies, I document my daily symptoms and functioning. I'm still looking for clues and patterns in what my body serves up. I'd like to think that the documentation helps to point out things that were once new but have slowly slyly assimilated into my ever-evolving normal. I guess I'm secretly hoping to discover a clue that will be useful to docs. Something that might elicit more than their smile as they shrug their shoulders. Neurologists are somewhat justifiably vague folks.
So, back to that morning. I continued struggling to gain consciousness and movement for an hour or so. Providing a distraction, or possibly aiding in my goal, was my cat, Jake. Each time I awoke he was farther and farther from from me on the bed and sporting a look of disdain and contempt that only felines can dish out. What is it about us cat owners that we knowingly choose this sort of treatment over the steady loyalty and adoration of a dog? In any case, he was clear in his disapproval of my slothfulness and the delay in his feeding. But I digress.
The radio played in the background as I drove to work. I was still pondering how to document the differences in symptoms, how they'd changed from a few months ago, sensory vs. motor, and on and on went my mind until...If you could have any superpower, which would you choose?... jumped out at me from the radio. The woman chose reading others' minds. Doh! Really?! Do you really want to read your boss' mind, or worse, your significant other's mind? Please.
Then it hit me. Yeah, I know what superpower I want! How about if I could transfer my symptoms and functions (or lack thereof) to my doc for just 24 hours? She could get a realistic picture of what transpires for me, or rather inside of me, for a 24-hour period. It could be like a human-to-human plug and play USB function. Yeah, that's it! The checkups would be so much simpler. No rambling explanations. She could feel and assess for herself. My credibility factor would likely be raised significantly. Yeah, this is it! Hmm, but how would this work if all of her patients were doing this? She couldn't function. And, of all the docs I've met in the last few years, I really would not wish that on her. Wait, the other patients wouldn't have this superpower. So, that would be ok. Oh wait a minute. It's just pretend. I wouldn't have it either.
Aside from an unfortunate stint working at 5 am talking to east coast folks about their retirement plans, I've never been a morning person. These days mornings can be downright wicked and this one had been harder than usual. I awoke in a deep fog struggling to come to the surface. The legs were already sporting buzzing and vibrating -- things that usually happen later in the day as my motor skills wind down. My mind began attempting a prediction of functioning for the day. And, I pondered whether any of this was documentation-worthy.
Whether futile or suggestive of neurotic tendencies, I document my daily symptoms and functioning. I'm still looking for clues and patterns in what my body serves up. I'd like to think that the documentation helps to point out things that were once new but have slowly slyly assimilated into my ever-evolving normal. I guess I'm secretly hoping to discover a clue that will be useful to docs. Something that might elicit more than their smile as they shrug their shoulders. Neurologists are somewhat justifiably vague folks.
So, back to that morning. I continued struggling to gain consciousness and movement for an hour or so. Providing a distraction, or possibly aiding in my goal, was my cat, Jake. Each time I awoke he was farther and farther from from me on the bed and sporting a look of disdain and contempt that only felines can dish out. What is it about us cat owners that we knowingly choose this sort of treatment over the steady loyalty and adoration of a dog? In any case, he was clear in his disapproval of my slothfulness and the delay in his feeding. But I digress.
The radio played in the background as I drove to work. I was still pondering how to document the differences in symptoms, how they'd changed from a few months ago, sensory vs. motor, and on and on went my mind until...If you could have any superpower, which would you choose?... jumped out at me from the radio. The woman chose reading others' minds. Doh! Really?! Do you really want to read your boss' mind, or worse, your significant other's mind? Please.
Then it hit me. Yeah, I know what superpower I want! How about if I could transfer my symptoms and functions (or lack thereof) to my doc for just 24 hours? She could get a realistic picture of what transpires for me, or rather inside of me, for a 24-hour period. It could be like a human-to-human plug and play USB function. Yeah, that's it! The checkups would be so much simpler. No rambling explanations. She could feel and assess for herself. My credibility factor would likely be raised significantly. Yeah, this is it! Hmm, but how would this work if all of her patients were doing this? She couldn't function. And, of all the docs I've met in the last few years, I really would not wish that on her. Wait, the other patients wouldn't have this superpower. So, that would be ok. Oh wait a minute. It's just pretend. I wouldn't have it either.
12 September 2009
Life in a Postage Stamp
I feel like my life is shrinking down to the size of a postage stamp. Yeah, my life is like a postage stamp. I made these statements to my pal Diane the other day. She paused and quizzically inquired, "You mean you feel like your life is worth 44 cents?" She was quite serious. Oh, the concrete, quantifiable thinking of an accountant! No, no, not the value. Egads, I seriously didn't want to go there. I have trouble these days seeing any decent conclusion from that line of questioning. And, is that my value to society, myself, my cat? No, no, I was talking about what I can do and participate in - it's shrinking.
Much more than most folks, Diane usually gets it. As my life has dramatically changed in the last couple of years, she's understood that plans are always tentative and that little outings are big deals now. Between the fallout from brain surgery and dealing with atypical multiple sclerosis, fatigue reigns supreme. It feels like a god that must be pandered to and delicately revered, or else.
I plan my life strategically now to avoid hitting the big fatigue wall before I'm safely home. Sometimes it works. Grocery shopping, putting gas in the car, and laundry are for the weekends. I usually plan nothing else during the workweek as working is enough of a challenge. Hopefully I've made it to the afternoon and accomplished some good work before I begin the familiar decent into a mass of buzzing and vibrating in my body knowing that soon my thought processes and ability to move will slow way down. Although each day is never quite the same. As my legs become heavy, sometimes it's like walking through molasses. Well, ok, you're right. I've never walked through molasses, but you get the idea.
I avoid scheduling afternoon meetings and dread the phone ringing at 3:30 or 4:00. Will they have an easy system use question or a fuzzy gray policy question? Occasionally I get really stuck attempting to articulate what I know. I usually use my outgoing personality to laugh it off and make a joke. However, these moments are becoming more frequent and awkward. I attempt to go home at the right time to avoid my fatigue turning into full-on staggering and slurring. And, while I'm safe to drive. Once home, I'm done. I may cook, play with the cat, or I may be pretty much leveled. If I recover later in the evening, I'll go for a neighborhood walk. I usually don't walk pretty at that point.
So many people could tell a similar story. In this context, the label doesn't matter. It's invisible chronic illness and it's relentless. Folks dealing with this often look fine, or even really good as they're probably supplement junkies. Yet they must exert an incredible effort to get through the day. Sometimes the cracks in the veneer show if we're paying attention. But overall, the struggle is invisible. I know mine usually is. This will be confirmed when a co-worker recommends the evening concert series at the zoo not knowing that doing anything beyond crashing in the evenings is a radical concept in my world. Or when they assume my funny walking is due to a knee injury even though I may have told them about my condition. I'm still working on how to respond graciously as they don't understand this world. I don't expect them to know that my postage stamp isn't that big these days.
Much more than most folks, Diane usually gets it. As my life has dramatically changed in the last couple of years, she's understood that plans are always tentative and that little outings are big deals now. Between the fallout from brain surgery and dealing with atypical multiple sclerosis, fatigue reigns supreme. It feels like a god that must be pandered to and delicately revered, or else.
I plan my life strategically now to avoid hitting the big fatigue wall before I'm safely home. Sometimes it works. Grocery shopping, putting gas in the car, and laundry are for the weekends. I usually plan nothing else during the workweek as working is enough of a challenge. Hopefully I've made it to the afternoon and accomplished some good work before I begin the familiar decent into a mass of buzzing and vibrating in my body knowing that soon my thought processes and ability to move will slow way down. Although each day is never quite the same. As my legs become heavy, sometimes it's like walking through molasses. Well, ok, you're right. I've never walked through molasses, but you get the idea.
I avoid scheduling afternoon meetings and dread the phone ringing at 3:30 or 4:00. Will they have an easy system use question or a fuzzy gray policy question? Occasionally I get really stuck attempting to articulate what I know. I usually use my outgoing personality to laugh it off and make a joke. However, these moments are becoming more frequent and awkward. I attempt to go home at the right time to avoid my fatigue turning into full-on staggering and slurring. And, while I'm safe to drive. Once home, I'm done. I may cook, play with the cat, or I may be pretty much leveled. If I recover later in the evening, I'll go for a neighborhood walk. I usually don't walk pretty at that point.
So many people could tell a similar story. In this context, the label doesn't matter. It's invisible chronic illness and it's relentless. Folks dealing with this often look fine, or even really good as they're probably supplement junkies. Yet they must exert an incredible effort to get through the day. Sometimes the cracks in the veneer show if we're paying attention. But overall, the struggle is invisible. I know mine usually is. This will be confirmed when a co-worker recommends the evening concert series at the zoo not knowing that doing anything beyond crashing in the evenings is a radical concept in my world. Or when they assume my funny walking is due to a knee injury even though I may have told them about my condition. I'm still working on how to respond graciously as they don't understand this world. I don't expect them to know that my postage stamp isn't that big these days.
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