4 days ago
4.24.2011
4.22.2011
4.13.2011
Lost Causes
As I make my way down rue Louise, I am often tested to prove my mettle. I've adopted a Buddhisty approach to these challenges, seeking to overcome every itch, every minor discomfort, from within. (One might say it's not like I have a choice, but let's gild the lily just this once, hmmm?)
Last night, after Courtney went home but before John came home, I fooled with my laptop, hoping that, if I hit disconnect/connect enough, my dead wireless would resurrect. While I amused St. Jude, I became aware of a wispy tendril of hair near the inner corner of my left eye.
Wispy tendrils are irritating but, in most cases, aren't batshit crazy caliber--the ones that make you shudder--either. I closed my eyes to do the overcoming thing when the hair moved under my glasses. Damn. Overcoming was going to take a little longer with this additional wrinkle. Settling back against the pillow to wait it out, I felt another movement and realized that, whatever was moving, it wasn't my hair..it was alive and had legs and was taking a stroll.
I couldn't help but go all girly for several seconds; I screwed up my face and thought, "Eww, gross!" as the nasty bug toured my eyelid. Nothing could be done--my hands and arms refused to move. My only options were to wait for the stupid bug to get bored and move on OR submit as it bored into my head by way of my eye. (Nope, no drama queen here.)
Okay, so we all know it wasn't a head-boring bug, but it doesn't change the fact that I'm powerless to brush away even the friendliest little crawly thing that wanders onto my face. I'll need a lot more Buddha if I'm going to beat the bug within.
Last night, after Courtney went home but before John came home, I fooled with my laptop, hoping that, if I hit disconnect/connect enough, my dead wireless would resurrect. While I amused St. Jude, I became aware of a wispy tendril of hair near the inner corner of my left eye.
Wispy tendrils are irritating but, in most cases, aren't batshit crazy caliber--the ones that make you shudder--either. I closed my eyes to do the overcoming thing when the hair moved under my glasses. Damn. Overcoming was going to take a little longer with this additional wrinkle. Settling back against the pillow to wait it out, I felt another movement and realized that, whatever was moving, it wasn't my hair..it was alive and had legs and was taking a stroll.
I couldn't help but go all girly for several seconds; I screwed up my face and thought, "Eww, gross!" as the nasty bug toured my eyelid. Nothing could be done--my hands and arms refused to move. My only options were to wait for the stupid bug to get bored and move on OR submit as it bored into my head by way of my eye. (Nope, no drama queen here.)
Okay, so we all know it wasn't a head-boring bug, but it doesn't change the fact that I'm powerless to brush away even the friendliest little crawly thing that wanders onto my face. I'll need a lot more Buddha if I'm going to beat the bug within.
4.10.2011
Wednesdaide's child
Well.
Courtney, my regular Monday aide--or Mondaide--was sick, so the agency called to say they were sending a newbie named Myra (not to be confused with the famous NurseMyra over at Gimcrack Hospital). John decided to stay home, just in case. It so happened that Myra did not have experience with ALS so John provided instruction and all went well.
Rhonda is the usual Wednesdaide, so I was surprised that afternoon when another unfamiliar face (Heather) appeared. She seemed to understand me well enough and, though she hadn’t worked with an ALS patient before, one of her clients has MS and is immobile. I was in my cozy, comfy bed and asked her to help me to the bathroom.
I was somewhat concerned when she started to move my legs without supporting my back (quickly corrected), but when transferring me to the rollator, concern changed to trepidation; my AL-ass was improperly placed and down to the floor I slid. A very trembly Heather scooped me up but my dead weight was uncooperative and we only succeeded in moving my legs under the bed. Mustering her strength, Heather hoisted me from under the arms and up I went, but my legs were still outstretched under the bed; my shin scraped hard against the frame but I couldn’t find my voice to protest.
At last, Heather sat me on the edge of the bed. By this time I was exhausted and my arms, shoulders, neck and leg hurt like hell. All I wanted to do was get back into bed. Since the greater part of me was already there, it seemed safe enough. Silly me. Before I could explain the process, she let go of my shoulders and dived for my legs. My upper body fell backward and the pain in my lower back made me gasp...or did I gasp because I was flat on my back? Either way, they were panicky gasps. When my legs were restored to the correct elevation, Heather pulled the rest of me into place...well, sort of, almost, except now I was too much at the foot of the bed. Heather’s solution: pull me up under the arms. Twice. It’s Sunday and I’m still sore.
Several calls were made, and by 6:30 regular Tuesdaide Cherry was here, restoring order. Needless to say, Heather went home.
Courtney, my regular Monday aide--or Mondaide--was sick, so the agency called to say they were sending a newbie named Myra (not to be confused with the famous NurseMyra over at Gimcrack Hospital). John decided to stay home, just in case. It so happened that Myra did not have experience with ALS so John provided instruction and all went well.
Rhonda is the usual Wednesdaide, so I was surprised that afternoon when another unfamiliar face (Heather) appeared. She seemed to understand me well enough and, though she hadn’t worked with an ALS patient before, one of her clients has MS and is immobile. I was in my cozy, comfy bed and asked her to help me to the bathroom.
I was somewhat concerned when she started to move my legs without supporting my back (quickly corrected), but when transferring me to the rollator, concern changed to trepidation; my AL-ass was improperly placed and down to the floor I slid. A very trembly Heather scooped me up but my dead weight was uncooperative and we only succeeded in moving my legs under the bed. Mustering her strength, Heather hoisted me from under the arms and up I went, but my legs were still outstretched under the bed; my shin scraped hard against the frame but I couldn’t find my voice to protest.
At last, Heather sat me on the edge of the bed. By this time I was exhausted and my arms, shoulders, neck and leg hurt like hell. All I wanted to do was get back into bed. Since the greater part of me was already there, it seemed safe enough. Silly me. Before I could explain the process, she let go of my shoulders and dived for my legs. My upper body fell backward and the pain in my lower back made me gasp...or did I gasp because I was flat on my back? Either way, they were panicky gasps. When my legs were restored to the correct elevation, Heather pulled the rest of me into place...well, sort of, almost, except now I was too much at the foot of the bed. Heather’s solution: pull me up under the arms. Twice. It’s Sunday and I’m still sore.
Several calls were made, and by 6:30 regular Tuesdaide Cherry was here, restoring order. Needless to say, Heather went home.
4.09.2011
4.07.2011
April's Fool
This past Friday I went to clinic for my three month inspection. Per usual, the first stop was pulmonology, where nothing was measured but my blood pressure, which was not too terrible. I enjoyed a little chat with my doctor, then rolled off to the elevator and neurology.
Clinic starts at noon but I was called at 11:45 for weight, temperature and blood pressure (yes, again). Ordinarily I cringe at the prospect of getting on the scale, but after my 13 pound drop in January I was curious to see not if, but how much more, I lost. My friends guessed between eight and 20 pounds, but the scale was broken so the exact amount is a mystery--I think it must be at least eight based on how loosely my clothes fit. ANYWAY, I went back at 11:45. I waited for the various team members to start their pop-in visits.
And waited.
And waited.
At 12:30 my patience started wandering, looking for someone to validate our parking so we could leave, but was persuaded by even-tempered Lynne to wait a little longer. By 1:00 my patience was beckoning me out the door, when in came Ellen. We had a short conversation and were finishing when Ellie appeared. FINALLY. She conducted a very cursory exam while I attempted to communicate my frustration and displeasure (with no success, when I said I was in a bitchy mood it was interpreted as peachy mood, which made it worse). Nutrition, speech, OT and PT visited in the guise of four unknown young women who knew very little about me but understood that I was ready to go and kept their exams brief.
No one provided a reason for the one hour delay but I suspect it had something to do with the Corner Bakery delivery that arrived just before 12. Next time I'll order a salad.
Clinic starts at noon but I was called at 11:45 for weight, temperature and blood pressure (yes, again). Ordinarily I cringe at the prospect of getting on the scale, but after my 13 pound drop in January I was curious to see not if, but how much more, I lost. My friends guessed between eight and 20 pounds, but the scale was broken so the exact amount is a mystery--I think it must be at least eight based on how loosely my clothes fit. ANYWAY, I went back at 11:45. I waited for the various team members to start their pop-in visits.
And waited.
And waited.
At 12:30 my patience started wandering, looking for someone to validate our parking so we could leave, but was persuaded by even-tempered Lynne to wait a little longer. By 1:00 my patience was beckoning me out the door, when in came Ellen. We had a short conversation and were finishing when Ellie appeared. FINALLY. She conducted a very cursory exam while I attempted to communicate my frustration and displeasure (with no success, when I said I was in a bitchy mood it was interpreted as peachy mood, which made it worse). Nutrition, speech, OT and PT visited in the guise of four unknown young women who knew very little about me but understood that I was ready to go and kept their exams brief.
No one provided a reason for the one hour delay but I suspect it had something to do with the Corner Bakery delivery that arrived just before 12. Next time I'll order a salad.
3.28.2011
Doggess
Jenny comes by every weekday morning to give me breakfast. As my devoted firstborn situates herself by my bed, Stella hops from the floor to the bench, leaps over the footboard onto the bed, and indecorously scurries up to give me morning kisses. Hoyden! Secure in the belief that her kisses have won my heart yet again, she settles herself on my lap and waits, all the while staring at my MOUTH! Yes, dear reader, my mouth. Unable to share a discreet treat from my hand, I sometimes let fall from my lips the tiniest soupçon of an oopsy; if the oopsy lingers too long on my lower lip the hussy shamelessly leans in and plucks it right off. Jenny and I chuckle indulgently, ignoring the solecism.
One morning last week, Stella didn't greet me with her typical boundless, pre-oopsy enthusiasm. Instead, a subdued little girl crept quietly into my room and was deposited on my lap. As Jenny reported on Stella's pre-dawn escapades, I was treated to pitiful looks from behind Bichon lashes (which are grown for just this sort of occasion). It so happens that Stella, like others of her species who are tempted by evil, PEED on her mama's bed! She received rather a scolding while Jenny washed the linens, a scolding that left her chastened even the next day. Betraying not an iota of interest in the most important meal of the day, she sat on my lap, head resting on crossed paws, every ounce a perfect little lady. Jenny and I chuckled indulgently, all at the drama queen's expense.
The following day the hoyden returned, evidently choosing to look forward rather than back. Okay, it's not a choice, she's made that way.
3.23.2011
3.20.2011
Dreamin'
Standing on a blacktop surface with five others, I hold an iron bar, the bottom of which has two sharp points By my foot is a small patch of dry mud. A white pinfeather floats down from the sky and lands on top of the mud; within a moment it's covered by a glowing piece of jasper. Using the sharp points of the bar I stir these odd ingredients until the air turns a thick orange, swirling around us--we can hear but can't see each other. As we walk I feel something hitting the back of my neck, insistent but not painful.
I find myself in a large, empty auditorium. A neat, trim woman in a light suit is at the podium and to her left is a wall-size black screen. The woman directs me to go into the screen, without a second thought I do as she bids. The screen absorbs me. I'm not afraid, I know I'm in the right place.
Another building. Businessmen I knew several lives ago are inside but I don't want them to see me. A stranger enters the building so I follow close behind him and make my way to the elevator.
I find myself in a large, empty auditorium. A neat, trim woman in a light suit is at the podium and to her left is a wall-size black screen. The woman directs me to go into the screen, without a second thought I do as she bids. The screen absorbs me. I'm not afraid, I know I'm in the right place.
Another building. Businessmen I knew several lives ago are inside but I don't want them to see me. A stranger enters the building so I follow close behind him and make my way to the elevator.
3.18.2011
This and That
What hosts say to guests at, say, a wedding reception: We're SO glad you made it!
What some guests said to me: We're so glad you MADE it!
###
Feeling self conscious in my wheelchair and worried my inadequate joystick control would hurt innocent bystanders, I entered the room (where the ceremony would take place) via the right hand aisle. Already emotional, Louise dug in the spurs when I heard the violinist; fresh tears and a shaky hand brought me to a stop as I narrowly avoided hitting the wall. It was several loonnngggg seconds before I trusted myself to roll on.
###
Becky and John danced to Louis Armstrong singing We Have All the Time in the World, from the James Bond movie On Her Majesty's Secret Service. Becky is the only person I know who has a cd of James Bond theme songs--she knows them by heart and belts them out with gusto. She was raised on a steady diet of 007 and her passion is genuine.
What some guests said to me: We're so glad you MADE it!
###
Feeling self conscious in my wheelchair and worried my inadequate joystick control would hurt innocent bystanders, I entered the room (where the ceremony would take place) via the right hand aisle. Already emotional, Louise dug in the spurs when I heard the violinist; fresh tears and a shaky hand brought me to a stop as I narrowly avoided hitting the wall. It was several loonnngggg seconds before I trusted myself to roll on.
###
Becky and John danced to Louis Armstrong singing We Have All the Time in the World, from the James Bond movie On Her Majesty's Secret Service. Becky is the only person I know who has a cd of James Bond theme songs--she knows them by heart and belts them out with gusto. She was raised on a steady diet of 007 and her passion is genuine.
3.17.2011
Isn't They Lovely?
Apologies for the grammar. I'm trying too hard with the Stevie Wonder thing. But isn't they?
3.14.2011
The Princess Bride
What a weekend, what a wonderful wedding. My Becky was a beautiful Princess, her husband a tall, dark and handsome Prince Charming.
My beautiful Jenny and Cecilia were maids of honor...the entire bridal party was picture perfect. My three daughters, however, were the loveliest of all. On more than a few occasions I was told I must be so proud of my girls; I'd nod in agreement and say thank you but I thought to myself that, more than proud, I am grateful.
Since Becky and John W were legally married in November there was really no need for a licensed official to preside over this wedding, so they asked the father of the bride to perform this duty instead. Becky sent her dad his script and told him he could tweak it A LITTLE, which he did.
At home on Friday night, as John M was reading his slightly amended script, conversation turned to a certain scene from a certain movie. Jenny (who can recite dialogue from quite a number of movies) rattled off this particular dialogue and someone suggested it be included at the beginning of the ceremony to surprise Becky. Another note card was prepared.
Fast forward to Saturday at approximately 5:15pm. Bridesmaids and groomsmen in place, John W standing tall and looking fabulous in his tux. Becky, on her dad's arm, almost Little-Miss-Bouncy-Stepped* down the aisle. John M quietly gave his daughter away and took his place. Smiling, he began with these words (sans accent):
It was great, appreciated by the bride and many others.
*A very accurate childhood nickname.
My beautiful Jenny and Cecilia were maids of honor...the entire bridal party was picture perfect. My three daughters, however, were the loveliest of all. On more than a few occasions I was told I must be so proud of my girls; I'd nod in agreement and say thank you but I thought to myself that, more than proud, I am grateful.
Since Becky and John W were legally married in November there was really no need for a licensed official to preside over this wedding, so they asked the father of the bride to perform this duty instead. Becky sent her dad his script and told him he could tweak it A LITTLE, which he did.
At home on Friday night, as John M was reading his slightly amended script, conversation turned to a certain scene from a certain movie. Jenny (who can recite dialogue from quite a number of movies) rattled off this particular dialogue and someone suggested it be included at the beginning of the ceremony to surprise Becky. Another note card was prepared.
Fast forward to Saturday at approximately 5:15pm. Bridesmaids and groomsmen in place, John W standing tall and looking fabulous in his tux. Becky, on her dad's arm, almost Little-Miss-Bouncy-Stepped* down the aisle. John M quietly gave his daughter away and took his place. Smiling, he began with these words (sans accent):
It was great, appreciated by the bride and many others.
*A very accurate childhood nickname.
3.06.2011
Girls' night out
Jenny, Courtney and I went shoe shopping Friday night, for shoes I can wear to the wedding. DSW was our destination; I hoped to find something to complement the silky, monochromatic ensemble hanging in my closet.
There was a time when this was an all too frequent activity, but I haven't been shoe shopping in forever. The pointy toes and high heels--once a staple--simultaneously break my heart and mock my size 11s, feet that are even harder to fit since Louise stomped on them. This night was no exception; all those beautiful, beautiful shoes, row after row of them, but none of them meant for me.
I rolled all through the store, Jenny clearing the mirrored settees from my path, Courtney replacing them after I cut swath after swath. As I neared the last row of women's shoes and approached men's, my swath fizzled, until I espied a lovely pair of neutral slippers. Yes, they were more masculine than I like, but the mocha color, roomy toebox and cuddly lining met all the important requirements. As well, I reasoned, my feet would be mostly hidden by my outfit. So I bought them, saying I would return them if something better came my way.
I took the girls to dinner at Asia Bistro and was pleased to find a Thai curry on the menu. Our server, noticing my wheelchair and that Courtney was turning the menu pages for me, came over to offer assistance and to take our drink order. Can you guess which beverage is mine? We had rather a chuckle over this.
In addition to our meal, we enjoyed watching and listening to the other diners, especially the July/November couple seated next to us. They had quite a serious conversation about Johnny Depp and his movies, including I Like Chocolate* (despite the fact they'd not seen it, but heard it was good). The music was 70s Motown and more than once I amused the girls when I got my middle school groove on. Yes, I had a groove. Stop laughing.
###
*Of course you know there is no such movie. Miss July was referring to Chocolat.
3.04.2011
3.02.2011
Miscellany
My feet are ultrasensitive, especially the right heel. If there is even the slightest threat of pressure, my heel goes all diva on me and readies the whole foot for a major tantrum. The toes and top of foot swell, turn red and radiate some pretty intense heat. Rather uncomfortable.
###
The only word that comes close to describing how my skin feels: sunburnt. Any time contact is made--when getting in and out of bed, getting dressed, doing range of motion exercise, anything at all--the nerve endings in the distressed region go apeshit. Most disagreeable.
###
The past two mornings I've woken up in a world of hurt. It's as if my collarbone is loose, and any movement from my head or shoulders results in pain. Oddly, the pain disappears when I get up. I am a very delicate flower, an orchid in fact..
###
On a lighter note, I'm happy to report that, after more than a week of troublesome coughing/choking when drinking, I finally remembered the ol' chin tuck. It's amazing what difference a tiny tweak makes in successful sipping.
###
Last but not least, I'm eliminating some pills from my twice-daily cocktail: lithium and rilutek. They aren't doing much so they won't be missed.
###
The only word that comes close to describing how my skin feels: sunburnt. Any time contact is made--when getting in and out of bed, getting dressed, doing range of motion exercise, anything at all--the nerve endings in the distressed region go apeshit. Most disagreeable.
###
The past two mornings I've woken up in a world of hurt. It's as if my collarbone is loose, and any movement from my head or shoulders results in pain. Oddly, the pain disappears when I get up. I am a very delicate flower, an orchid in fact..
###
On a lighter note, I'm happy to report that, after more than a week of troublesome coughing/choking when drinking, I finally remembered the ol' chin tuck. It's amazing what difference a tiny tweak makes in successful sipping.
###
Last but not least, I'm eliminating some pills from my twice-daily cocktail: lithium and rilutek. They aren't doing much so they won't be missed.
2.28.2011
Operater, please
I fought kicking and screaming--well, as much as I can, though to look at me you'd think I was sitting still--but the time has come to hang up, ring off, press "end."
My darling Adam doesn't understand me anymore. Considering the amount of time we spent on the phone over the course of our friendship--so much time that I added Friends and Family to my Verizon plan when Adam switched to AT&T--I knew it was last call. If he can't understand me, nobody can.
Losing this line of communication is just one more straw. My idiot camel must love me.
###
I can't push any buttons so texting isn't an option, either. All phone activity is conducted by my army of assistants so, if you DO text me, keep it clean (yes, Birdie, I mean you).
###
My darling Adam doesn't understand me anymore. Considering the amount of time we spent on the phone over the course of our friendship--so much time that I added Friends and Family to my Verizon plan when Adam switched to AT&T--I knew it was last call. If he can't understand me, nobody can.
Losing this line of communication is just one more straw. My idiot camel must love me.
###
I can't push any buttons so texting isn't an option, either. All phone activity is conducted by my army of assistants so, if you DO text me, keep it clean (yes, Birdie, I mean you).
###
Hello
I got a very pleasant surprise last week: an email from a "long lost niece." She follows my little exercise in self-absorption and reached out across the miles...and years.
It so happens that we share a love of The City of Light. I envy her all her future adventures.
It so happens that we share a love of The City of Light. I envy her all her future adventures.
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