We are all twisted.
We are all twisted.
I am at an academic facility. A meeting I attended just concluded and I see Ellen Cochrane from the ALS Association. As I make my way over to speak with her, three women approach her and they begin to talk. Ellen invites them to her bungalow and I follow, thinking I will be able to talk with her. They go inside and I wait in an anteroom, occupying myself with my iPad. After what seems like a very long time, I gather my things to leave. At the same time, Ellen and her friends emerge and Ellen asks me to stay but I cannot.
iPad in hand, I begin the walk to my own bungalow, which is on the campus. I've never seen it and don't know exactly where it is, but every bungalow has the resident's name on the door. It's raining outside and I'm worried about getting wet. I am wearing high heeled boots, which seem inadequate, particularly when I have to go through a drain. I continue up a hill, confident I will find my cottage when I see a very well-appointed residence to my left. I am not surprised to see that it belongs to my darling Adam. At this moment, he calls me on my phone but our signal is sketchy and we lose each other.
My family and I are driving down the road to our house. Our progress is stopped, however, because the car in front of us won't move. I get out of the car, intending to walk the rest of the way but it is cold and raining so I get back inside.
I am in Norfolk. In the water. Yes, the water. An emergency situation exists further out, and I see waiters carrying trays, delivering drinks. I wonder how the waiters--who are wearing chefs' toques--manage to glide so gracefully back and forth, never spilling a drop. I then see they are wearing rescue flotation devices (shaped like small torpedos) on their feet, held in place by straps across the instep. I, too, am making my way quickly through the water because I am holding on to yet another flotation device, upon which stand John, Jenny, and Becky. My grip begins to fail, I let go...and start to sink. I'm afraid, but I know this is what has to happen.
That's it. The next thing I know, there's a knock at the door, and in comes good buddy Lynne.
Until recently I was able to climb (with lots of assistance) the single step from my front porch to my foyer. Louise was getting tired of lifting my legs, so journeys through the front door all but ceased. Lynne started making noise about a solution.
Coincidentally, several weeks ago, an email was received by the directors of the Fredericksburg Area Running Club (FARC) which begat a flurry of emails and ideas on how to support one of the club's members. Ultimately, the decision was made that support was best offered in the shape of a ramp. Yes, I am the fortunate member. I am touched and gratified by the good will exhibited by these kind people.
(It's worth noting that the hammering is occasionally punctuated by a curse. I'm envisioning some purple thumbs.)
I was perfectly situated in my lovely bed by 10 PM. Reading always puts me to sleep and this night was no exception; I began to drowse within the hour. John came in, turned off the lights, and put my iPad away. I settled back against my very inviting pillow and was out.
From my position on the bed, I'm not able to see either of the two clocks in my room, so I don't know what time it was when I woke up. It was pitch black outside my window, so I knew it was either very late or very early. Regardless, I woke up because the heat was oppressive. I listened for what seemed an eternity--the furnace roared without taking a rest. Not wanting to disturb him, but knowing I would go mad if I didn't find some relief from this heat, I called John. He stumbled, still mostly asleep, to the thermostat and adjusted it. It wasn't long before I noticed an improvement, and was able to go back to sleep.
Sleep was again interrupted when I moved my legs and the pillow under them shifted; my attempts at repositioning the pillow caused my blanket to get bunched up around my knees, leaving my feet exposed and cold. Poor John was called on a second time to correct pillow and blanket.
By this time, I was fully awake. I stared into space thinking about nothing and everything. I looked around the room and was not happy to see a giant spider walking on the wall across from me. My eyes started to sting, then water, tears running down my face. The idiot tickle teased, so naturally I began to cough, which caused my right arm to relocate away from its supportive pillow. Try as I might, I couldn't move my arm back. To add insult to injury, my sleeve bunched around my elbow--very irritating, almost painful, because of the bunchy wrinkles (the sleeve, not the arm). The pillow behind my head also reacted to my coughing by shifting just enough to rob it of any pleasantness. I looked at the wall, but the spider was nowhere to be seen...very soon I was convinced it was walking across my chest. So there I was, arm and pillow out of position, tears drying on my face, with a spider walking on my defenseless lump of a body. Should I wake John a third time? I didn't have the heart.
I would say I tossed and turned the rest of the night, but we all know that would be a huge exaggeration. What isn't an exaggeration is that my mind tossed and turned and I did not get any real sleep for the next several hours.
Thank goodness I know how to dig deep and get through a tough course.
The first one was crawling on my window. I asked Courtney if she would please remove the bug, taking care not to smush it (because we all know what happens when you smush a stinkbug). She did, without incident.
Not long after, we heard something hit the inside of my table lamp. Courtney said it was just a moth, but I said--jokingly--that it was probably another stupid stinkbug. We both laughed, and Courtney said it would probably land on me after I went to bed.
Courtney is a wicked, evil cow. She'd been gone about half an hour when I looked up and saw THE STUPID STINKBUG on my blanket. Cecilia was downstairs with her boyfriend, Alex, so I sent her a text message saying I needed help. She was quick to respond but by the time she came upstairs the stupid stinkbug was no longer on the blanket. Carefully lifting the blanket off my feet, Cecilia jumped and made a face, and told me the stinkbug was on my foot. Knowing she wouldn't be any help, I asked her to get Alex.
Alex is a nice boy. He always comes in to say hello and always stops in to say goodbye. That is the extent of our relationship. I'm sure he was horrified at the prospect of removing a stinkbug from my ALSy feet. But he bravely entered my room, tissue in hand. Poor Alex. The stinkbug was no longer on my foot, it had crawled up onto the side of my shin. Evincing no great disgust, he very ably extricated the stupid stinkbug and summarily disposed of it.
Alex is my hero.
Fast forward 30 something years. I have been blessed with a disease that has wrought many changes, not the least of which is the overproduction of saliva. In the wake of my recent cold I seem to have ramped THAT up to the point where it is becoming problematic. As before, it causes a little tickle in my throat, which leads to a cough, then a yawn or a sneeze, which results in a runny nose and watery eyes. Every damn thing on my face leaks some sort of foul fluid. And my sensitive stomach is repulsed.
I don't have a drool bucket, I have a nasty washcloth as well as the floor of my shower (bleah). Gallons of thick, bubbly, viscous slime are daily expelled into these waiting mediums. On a happier note, just as I see things in my neighbors' trees, so, too, do I see things in these expulsions. Yes, I am thoroughly off my rocker.
These lessons in humility are becoming tiresome.
More to come...
Postscript: the preceding was kindly reviewed and edited by my own Jen-ographer. I consider myself fortunate indeed to have so many helping hands.
It's been almost two months since I saw Ann; there are stairs in her shop and I don't do stairs anymore. We tried the home salon of one of her co-workers--that only worked one time. Ann is so kind she offered to come to my house, so we made a date for this morning.
What little dignity I possessed disappeared at 8:52 this morning. My beautiful, lovely stylist came to my house but I was not yet ready. I was still in bed with messy hair, watery eyes, dry mouth and cracked lips, a vision to behold. Adding to my allure were my practical--though hideous--briefs. Before John rolled me to the bathroom, Ann tactfully excused herself. I emerged, still clad in my pjs, light years away from the be-booted and be-pursed woman of only a few years ago.
Thank you, Louise for forcing humility down my throat. Do what you will, I still have great hair.
It's not likely I will go back to my former beautiful speaking voice so I need to move to the next level in communications technology. At my last clinic, the speech therapist made some noise on this subject so a phone call is on my to-do list. I just have to find someone to make the call for me.
(The preceding was kindly typed by 3:58 marathoner Mrs. John Wallace.)
What I am not looking forward to is the chest congestion that ALWAYS follows a sore throat, at least that is my experience. My cougher isn't coughing so well these days.
2 strawberry champagne cupcakes
4 new movies
1 bowl of popcorn (with extra butter)
Mix all together and warm at room temperature for six hours.
These are the ingredients for a perfectly wonderful day.
Thank you, Wendy. I love you.
While she was stretching my thumb this morning, my dear girl decided we should thumb wrestle. Guess who won.
Jenny had just given me a sip of coffee when she told me she was visiting Disney Channel man today, to bring him new episodes of The Suite Life of Zack & Cody. I found this so absurdly funny that I choked on my coffee, losing the entire mouthful.
Poor Jenny felt so bad, and uttered a new nugget of wisdom: "the journey from joke to choke is very short."
Cast of characters:
ALS patient 1
ALS patient 2 (very pregnant)
patient 2's caregiver
patient 2's OB/GYN
team of random neurologists
random group of Becky's friends
a couple of young mothers with their small children
a group of random over-50s, including a man I met at the bank in 1997 or 98 and Craig T. Nelson.
I was on a train, sitting near ALS patient 1. He wanted to listen to his iPod on the train platform (which, curiously, floated beside the moving train), so we both went out and sat on the metal bench outside the door to our car. Neither of us were in wheelchairs; he sat comfortably on the bench, arms outstretched and legs crossed. I was using my MacBook, typing with both hands.
Back on the train, I sat with patient 2 and her OB/GYN, who asked me the date of my last breast exam. When I said it was more than a year ago, he performed one right then and there. Patient 2 and I chatted casually until the doctor informed me there were several lumps under my left armpit.
Patient 2 and I went out to the platform only to find it was a marshy wetland. Walking through this made patient 2 very tired. Her strapping caregiver appeared and carried her back as I followed. There was a moment of panic because we could not find the door to our car. When the door (with a large number 3) was located, everyone was relieved.
Now seated on the train, I plugged in my laptop; the outlet was unique as it accommodated any sort of plug. Patient 2's caregiver asked if he could use the outlet, when I said yes he did a fist pump. I yelled, "Project 2600!" which drew appreciative smiles from those nearby.
At the end of the car was a group of Becky's friends. They were goofing around near an open door when one of them lost his grip. He was consumed by blue electric light; as the train moved on the blue light grew smaller. Becky was sad and told me this particular friend was special to many people.
I saw that patient 1 was back in his seat.
My sister and I were visiting churches, looking for living saints. We decided not to go to Notre Dame because all the saints there were already dead.
After taking a shower, I gathered my clothes and was distressed because they were wet. Becky pointed out some dry benches (shaped like pieces of pie) and I arranged my clothes.
Also on the benches were many pieces of loud, gaudy jewelry intended for fashion dolls. These caught the attention of a group of little Pakistani girls (not sure why I knew that) and their mothers, so I gave the jewelry away to them. As it happened, we were next door to the jewelry factory and were able to see the jewelry making process: the components of each specific piece were in a tray which was placed in front of a worker (dressed a la Sailor Moon), after a piece was complete a new tray appeared.
One of the mothers was very pale. Her name was Lily. Several of the little girls were also quite pale, due to white makeup that stopped at the neck.
A neurologist wheeled me down the aisle, asking me questions like, "can you walk?" "do you burp?" etc. He and his team advised me my responses would be judged by how long I took to answer. All the neurologists looked alike. As we made our way down the aisle, I noticed a little bag on the floor; I could not tell what was in it but I thought it was a stuffed animal.
Suddenly a woman called out that her baby was missing. Little toys scattered all over the floor. I suggested someone look in the little bag but, when they did, all they discovered was a large piece of candy shaped like a star.
I was taken to a room where Jenny was waiting for me at a table. On the table was a Toshiba scanner, a gift premium I received with a recent purchase. As Jenny and I admired the scanner, a small crowd of people over 50 gathered behind us. Included in this small crowd were Craig T. Nelson and a man I met at the bank in the late 90s. I looked over at Craig T. Nelson, then at the man...who was smoothing my hair. When he saw me look, he began smoothing Jenny's hair, too.
This is where I woke up. Thoughts?
In order to breathe comfortably, I sleep with my head and chest elevated (thank you, happy hospital bed). Sleeping this way, however, causes my jaw to drop and my mouth to open, resulting in a lot of dryness. Throw in the nightly amitriptyline and you have a hot, dry mess. I wake up periodically throughout the night, conscious of discomfort, and try to close my mouth and stimulate some salivary succor. Any relief is short lived -- once I fall back to sleep my jaw drops and the cycle repeats.
What I need is a chin strap to hold my jaw in place. Neoprene looks to be the most comfortable, stretchy and soft. I doubt chin straps are available at my local CVS so I will order one. In the meantime I'll have to be creative. Any suggestions?
Me: But I do not impart any words of wisdom.
Jenny: Well, I think words of wisdom. Does that count?
In other wisdom news, our very own Rebecca Sophia ran her first marathon in 3:58. (And that is So-FEE-a, not So-FIE-a, which is how they pronounce it down here.) Congratulations, Becky!
I am very blessed to have family and friends who are willing to drive the distance IN TRAFFIC. Recall the visits/outings with my sister -- we are talking several hundred miles. Not only is the time spent together a gift, so is the time spent driving here and then driving home.
I wish I could still drive so I could reciprocate the kindness, but I think I need more than honey at this point.
If only it were that easy.
I recently committed another thoughtless act and I am more ashamed of myself than ever before. My thoughtlessness was unintentional but that is no excuse, I erred and hurt someone I love very much.
I am so very sorry.
Becky visited two days later and we gave her the package; she opened it and laughed and told us it was perfect. She started to say something else but, when she started to cry, asked Jenny to finish for her. Jenny then told us that Becky, John Wallace, and John Wallace's father and sister were coming out to the house on Tuesday, November 2, and that Becky and John would be married.
This was a "just in case" wedding. We are very big on insurance and that's what this is. The March wedding is still on and I plan to be there.
Aren't they a lovely couple? Actual photos to be posted upon receipt.
My little plant was watered but not regularly. Shortly after a recent watering I was surprised and happy to see little buds all over. After three years of nothing, now this!
Is this the secret to successful Christmas cactusing? Heaven knows I've never had a green thumb.
- I love my hospital bed. Consequently, I hate my stupid chair less than before.
- I am officially covered by Medicare. I don't feel any different.
- Today is a very special day but I can't say why. Just trust me.
- Last June I ranted about a stupid girl who parked in a handicapped space because she did not know how to parallel park. This comic reminded me of that episode:
It occurred to me that, in my present condition and with the gallons of Jergens shea butter lotion applied to my skin on a regular basis, I am Buffalo Bill's dream girl.
There was quite a bit of noise coming from Cecilia's bathroom and I was afraid a meltdown was in the offing. When the door shut I was convinced I heard crying, but it was hard to tell due to the racket made by the traffic outside. After a few moments I realized the crying was actually John snoring in the other room. I breathed a sigh of relief and relaxed, ready to return to dreamland. No such luck. There was now a garbage truck on the street and the smell of old garbage wafted through my open window and assaulted my olfactory sense. When Cecilia finally emerged from the bathroom I called to her to please close my window. She did, then slammed the front door and went to school.
Once again I attempted to fall asleep. No more odors, no worries about meltdowns. Peace. Until I became aware of a high pitched buzzing near my right ear. I turned my head to the right only to hear the buzzing on the left. I turned left and -- you guessed it -- the damn thing was on the right. No longer able to lift my arms to that level and terrified the buzzing thing was also a stinging thing, I rocked my head back and forth several times hoping it would go away. Either it went away or I killed it because the buzzing finally stopped.
About this time I noticed the beginnings of a cough tickling my throat, and cough I did. (I hope it was not the buzzing stinging thing!) No sooner did I finish THAT than my eyes started to sting and burn; this happens frequently with no provocation. I squinted my eyes as tight as I could but found no relief. To add insult to injury, my bladder complained that, if I was awake, it needed to be emptied. Unable to turn and see the bedside clock, I had no idea what time it was or how long I'd have to wait until Jenny arrived. Happily, I did not have to wait long. The poor dear went right into action, quickly tending to my various needs. She deserves a medal.
Loss of functionality sucks.
I've been aware for several weeks that my swallowing is different. No, not when I drink. When I eat. This morning I choked on a tiny piece of sausage; I was not able to speak and it took several very long seconds before I could inhale. I know it scared Jenny and I did not tell her what it was that made me choke. She asked if it was saliva and I said yes. I took smaller bites after that but was conscious of several potential chokers that were not swallowed properly.
When John fed me lunch I did not choke, but I was aware of continued problematic swallowing.
I must take care.
This morning, as Jenny and I ate breakfast, we listened to some lovely music from Loreena McKennitt. When Dante's Prayer came on, Jenny looked at me and said it might be a song to use for... the rest of the sentence remained unsaid. I knew what she meant and she knew I knew what she meant.
What she meant was my memorial PARTY which, since I am a control freak, I am planning in advance. I've begun collecting songs and invite any and all suggestions. One of the songs is attached for your listening pleasure.
I look forward to hearing from you!
If you know Jenny, you know she has a razor-sharp sense of humor and is usually five steps ahead of anyone in a conversation. Trying to eat when Jenny is "on" is very difficult; trying to talk, laugh, and eat is almost impossible. Under these circumstances I am very hard to understand, but Jenny says I'm not to worry -- she makes all her friends talk with their mouths full so she can better interpret my garbled speech.
That's my girl.
Next weekend -- weather permitting -- many of the women I used to run with will meet me in Colonial Beach, put me in a roadworthy wheelchair, and push me along as they run. They realize pushing me in a chair is no easy undertaking -- it's not like I'm a baby in a jogging stroller! We chose Colonial Beach because it is flat. Jannette came up with the idea early in the summer but the blistering heat prevented putting the plan into action. Fall's cooler days are much better for running, especially if you are pushing a large land m-ass in front of you.
I am blessed with good friends.
I spent the day today at NIH at the invitation of my good friend and neurologist Justin Kwan. I haven't been to see him in a professional capacity since early last year and he wanted to do a follow-up. The usual things were tested and measured and I won't bore you with the minutiae, but I have to share one juicy little tidbit: my gastrocs are freakishly strong. Yep, how do you like that? That's exactly what Justin said. Freakishly strong. I love it, don't you?
After the exam was finished (resulting in an FRS of 13), I asked about the possibility of donating my brain and spinal cord to NIH after, well, you know, after. Justin said they would be happy to accept my donation and went over some details. I don't know if my brain will provide any enlightenment, but if it can be even a little helpful then I am happy.
A long day, and now time for nighty-night. Sweet dreams!
As for hospice, they may start coming to the house as early as November. Don't go grabbing handfuls of kleenex, I'm not going anywhere yet. The nurses from my care agency suggested hospice as a supplement to meet all my comfort needs.
Aren't I just the most spoiled little thing?
When Jenny came by after her run, I had to show her my new parlor trick. She watched as Lisa helped me move to the wall then, as I stood there, she put her arms around my neck and gave me a hug. And for the first time in many months, I was able to put both my arms around her. It was a lovely, tender moment, one I will always cherish.
I wonder why I didn't try this before?
My grandfather's house at 7110 Maple Avenue.
Wendy and I marveled at how small the house appeared (the original structure, not the addition on the back), in particular the front steps.
We parked the van and went for a nice walk toward Carroll Avenue. I wanted to see the boundary marker that is only a few steps away from my grandfather's house; it made quite an impression on me when I was a kid.
After loading and locking me in the van, we headed toward our old house at 203 Hodges Lane.
It doesn't look much different than it did 40-some years ago. When my mother bought this house, my grandfather had to cosign the note. The bank would not lend to my mother because she was not married.
Please note the tree trunk on the right.
All the neighborhood kids used to climb that tree, much to the displeasure of Mrs. Judd, who lived in the house next door. We would climb and swing and hang until poor Mrs. Judd came out and screamed at us to get off her tree.
I think she would be happy that the tree is now completely out of reach.
Then we took a meandering drive through the narrow streets of this charming little city. We found the sledding hill on Birch, the big scary house (I think on Tulip), our babysitter's house where we went after school (there was no daycare), the fire station where we went rollerskating. When I was a child I thought everything was so spread out. I was wrong.
We stopped at IHOP for lunch. Matt got a Belgian waffle and sausages. This is how he eats his sausages.
He must get that from his father's side.
Thank you, Wendy and Matt, for a lovely day.
Imagine my surprise and delight when she arrived with these beautiful tulips in hand! Now I can go tiptoeing through them!
Our conversation today ran the gamut but one subject deserves a mention: one should always be mindful of the gifts that are offered to us every day, too often overlooked. Meghan, you are a gift. Thank you.
It never occurred to me to ask her to help me eat my snack. It was a snack, a simple finger food. When her bedroom door clicked, so did my brain -- with the realization that finger foods are not so simple.
There I sat, in my stupid chair, my laptop desk balanced on each arm, a bowl of complicated foodstuffs positioned to the left of my laptop. The first thing I had to do was move the bowl to a more secure location, namely the space between my rib cage and the center of the desk; this feat was accomplished by tilting the bowl and sliding it across the keyboard and into position. Success!
Now, how to eat the damn food. Lacking a pincer grip forces one to be creative; finger food becomes hand food. The only way I was able to grasp the idiot potato chips was to slide the first three fingers of my left hand and scoop a chip (or two or three) up against the knuckle of my curved thumb. Keep in mind that all my digits are shiftless and lazy and do less and less each day to earn their keep. (How do you like that, I began and ended that sentence with the same word. I'm sure that's bad form.) Anyway, just because the chip was scooped did not mean it would stay scooped so I had to make sure delivery to my mouth was properly managed.
With my hand looking like a lobster claw with a Pringle's potato chip peeking out, I raised my left arm as high as possible which, these days, is just about chin level. The only way to get that stupid chip in my stupid mouth was to stick out my tongue and hope for contact that lasted until the chip was extricated. This process was repeated far too many times considering the quality of the food I was eating, and not always successfully. Several times the chip didn't quite make it to the mouth and rappelled off my chin onto my shirt, requiring a completely different but equally tedious process. I bet there aren't many people who get so dirty eating something so simple.
When I was finished I heaved a sigh of relief.
You may be wondering why I went to such trouble, why I didn't just put the chips to the side. I considered it but the bowl was too heavy and its position on the laptop desk was inconvenient and intrusive. After I emptied the bowl it was light enough to move and there was nothing in it to spill.
It doesn't happen too often anymore, but it does happen. I forget I have ALS. And I forget my limitations... until I am challenged by a little plastic bowl and some little potato chips.
I'm sure I will hear from a few people about this but I am standing firm. The machine, I'm told, is to provide comfort; I am not uncomfortable unless I am wearing it. If I change my mind later on, I will already have my handy-dandy facemask and tube.
I don't think I'll change my mind.
So what to do? All of the grown-up toothbrushes are sleek and smooth. I pondered and pondered (for all of 15 seconds) when it came to me: blue foam tubing. Just as with my car key and my silverware, blue foam tubing would solve the problem.
Dear Jenny cut two lengths of tubing and cut along the length of each; she then placed each piece on either side of the Crest toothbrush, securing them top and bottom with elastics.
Once again, I present to you the product of my creative (if warped) imagination:
Sometimes I amaze myself.
(Looks to me like it's time to buy new bristles.)
My new custom power wheelchair better come equipped with a cow-pusher.
In fact, the controls on the loaner chair are just a wee bit too close and my very swollen fingers get stuck all the time. It is to be hoped the new chair will have a different design.
Remember all those pretty greens and yellows? They are no more. Notice, too, the bi-pap and wheelchair symbols. These are relatively new additions. Because I identified my first symptoms as far back as October 2006, I am now a member of the 4-year club.
Okay, enough of that. I will not give you a blow by blow of today's clinic but I will give you the highlights: my neurologist signed my DNR; I was fitted for my very own power wheelchair; a request is being made of the loan closet for an all electric hospital bed, a rolling shower chair, and an electric Hoyer lift. When the hospital bed is delivered I have decided to move down stairs into the serenity room, necessitating the acquisition of a portable/temporary shower. I will also need to find a gadget that will enhance my cell phone reception; the only way I can talk when I'm downstairs is if I stand next to a window and even that is sketchy.
Bi-pap update: I used it very successfully for about 45 minutes last night, and another 35 or 40 minutes tonight. Still undecided. It does make one look very glamorous, but looking glamorous has never been important to moi.
As Rula Lenska used to say, "Don't hate me because I'm beautiful."
My doctor asked me if I had considered a peg (feeding tube). I shook my head because I do not intend to use one at all; I am still chewing and swallowing quite well. She then asked me if I wanted to order a bi-pap. I told her I didn't want one, which led to a discussion about the function of the machine. It is not intended to prolong, it is intended to provide comfort -- making breathing a little easier. I agreed to try one.
The bi-pap technician came to the house on Tuesday and fitted me for a full face mask. The first time I put it on I thought I would suffocate; I was claustrophobic and very distressed. Subsequent attempts were more successful and I managed to wear the mask for several minutes before I signaled it was time to stop.
When Lisa came that night, we tried again as we were doing range of motion exercises. After putting the mask on me, Lisa positioned me on my bed. I chanced to look in the hallway and saw Cecilia; frantically I signaled to Lisa to shut the door so my daughter would not see. Doors shut, Lisa proceeded to do my exercises while I did my best to adapt to my newest gift from Louise. I tried to relax, to get into a rhythm, but it did not work.
I'll try again but I think I will send the machine back. The only thing I will ever suffer through in spite of discomfort is a beautiful pair of shoes.
My current toothbrush is a battery-powered Crest spin-Pro (or something like that); I like it because all the bristles move and the handle is big enough for me to hold. Unfortunately, the casing is very smooth and, as my left hand grip weakens, it is hard to hold. As of today I will use a new Oral-B toothbrush that has all the attributes of the other brush but has a chunkier handle, to wit:
Jenny informs me the character on my new toothbrush is none other than Wall-E of Pixar fame. I don't know anything about him but if he makes toothbrushing an independent activity I am his biggest fan.
Since we are on the subject, let me describe this independent activity to you. Seated in the bathroom (yes, I multitask), my caregiver places a hand towel on my lap. A dab of toothpaste is applied to the brush; the brush is then placed in my left hand at an angle which allows me to start brushing on the right side. The bristles go in my mouth and my caregiver turns on the toothbrush then exits to give me some privacy. Holding the tooth brush with my left hand and pushing a little with my right, I clean the outside teeth on the right, back to front. To switch to the other side I hold the toothbrush with my front teeth while I switch hands, then I clean the outside of the left. Keeping my hands in this position I then move to the lower right side, this time front to back. A quarter turn of the brush (while holding it steady with my teeth) and I can brush the top right, back to front. Another shift and the top left is attended to, and a final quarter turn brings me to the bottom left. I spend an extra few minutes revisiting the front teeth before I put the toothbrush on the towel in my lap.
I love brushing my teeth.
After purchasing the wheelchair-friendly van, Adam, Lynne, Ricardo and I decided to go on a road trip. Our destination: New York City! Award points would pay for our room at the Hyatt, reservations were made for Top of the Rock, and we would take a ride on the Staten Island ferry. Several days before the trip, however, a situation arose which required an adjustment to the plans. Bethesda was now the hotel destination, and Baltimore the fun day activity location. The Top of the Rock was replaced by the World Trade Center of Baltimore observation deck, and the Staten Island ferry was replaced by the Spirit of Baltimore lunch cruise (complete with singing waitstaff). My power chair got me around just as well as if I could walk.
What stands out in my mind, and is a memory I will always cherish, pertains to my friends. Lynne took such incredible care of me; she insisted on giving me a full shower and did not bat an eye when helping me in the bathroom. She and Adam took turns feeding me; she, Adam, and Ricardo all made sure I was able to drink my various beverages. On one occasion, Lynne and Adam both had to help me in to and out of the bathroom at Adam's house; one held me up while the other did the pull down, then one held me up while the other managed the paper and the pull up. Adam practically carried me back to my wheelchair. When I was finally situated, we all took a moment to regroup; I thought to myself how lucky I am to have such incredible friends.
In the last several weeks I've had visits from friends I made from all the different chapters in my life. I count myself very fortunate indeed.
As usual, I needed help getting to the bathroom. Cecilia has mastered the art of getting me up from the stupid chair and onto the potty and there were no issues this time around. After I'd finished cleansing, drying, and flushing, I called her to help get me back to the stupid chair. She very ably lifted me up, pulled up the knickers, took hold of my wrists and we minced our way back toward my stupid chair. As we approached, we noticed the very lovely (but very slippery) zebra pillow had fallen forward and was in a position to wreak havoc. This is where the fun began.
Desiring to move the pillow out of the way, Cecilia attempted to hold me with one hand. I am much higher maintenance than that and I immediately began to teeter. Fortunately I was able to move toward the upholstered bench and there I landed, albeit precariously near the edge. It was no easy task to shift the land m-ass but I managed.
I wrote not long ago about taking a tumble in this very same area; my caregiver's attempt to stand me up failed and I landed on my knees. Frightened that Cecilia lacked the strength to lift me from this lower position, I quailed at her insistence that she could do it but agreed to try. It did not take long for my legs to prove untrustworthy and down I went, onto the bench.
At this point I was considering my options, but Cecilia insisted again and again that we try, that she could do this, why didn't I trust her, she wanted to help me, and on and on. Her frustration caused her to raise her voice; I began to cry, explaining that I didn't trust my legs, that I didn't want to fall, knowing that if I did fall she would feel worse and I was trying to spare her that. I suggested we take a minute to calm down, my suggestion was drowned out by her begging me not to doubt her. She came toward me because she wanted me to move further back on the bench; I wriggled and rocked the land m-ass back as far as I could go; I looked at my daughter's tear stained face and pleading eyes and knew I had to let her try.
Cecilia bent down and, holding me as if in a hug, lifted me and got me to my stupid chair. I won't say we weren't both nervous -- there was a lot at stake -- but she did it. The look on her face, happy and relieved that she had succeeded, is a look I will never forget. And it was the best hug we've ever shared.
Some very intimate and therapeutic conversation followed. I know -- we all know -- my disease impacts everyone connected to me, and Cecilia is very fragile. Helping me as she did gave her a feeling of strength, both physically and emotionally.
What was that? Yes, I go up on my toes.
My balance is for shit, walking without assistance is a thing of the past, but I can still stand on my tiptoes -- while being supported, of course. Not only can I stand, I can take a few steps à la ballerina. It is rather a sight to behold.
I think I shall go find a tulip garden.
I love his perspective and the way he uses language; each syllable is a succulent ingredient in a gourmet banquet of delicious sentences. Enjoy.
It's five o'clock in the morning. The tiniest of rattles sounds in my chest. My eyes closed, I manage a feeble cough, but it's not enough. The rattle reappears but this time I cannot cough; I seem to have forgotten how to do it on command. I try -- unsuccessfully -- to clear my throat, worrying all the time that the horrible, sick, old-person-hacking sounds I make will somehow find their way into Cecilia's dreams, turning them into nightmares. Finally I have a productive moment (eww, gross, this makes my stomach unhappy) but I can't move the damn blob far enough; my swallow mechanism goes into action and the damn blob goes right back where it came from and we are back at square one. I continue this way for about an hour and a half and then give up trying to sleep. I elevate my stupid chair (oh yes, I was sleeping in my stupid chair) and notice the rattle is gone. I close my eyes and am near sleep when...
The tickling feeling I've come to hate -- and fear -- starts its evil buzzing in the back of my throat. I cough a couple times, then yawn the yawniest of yawns (so yawny I feel I might dislocate my jaw), then my nose runs and my eyes water. When my eyes water they sting SO BADLY; nothing helps except to have them wiped with a damp cloth. Everyone else is asleep so I clench my eyes and pray for the stinging to go away.
The next few hours are spent enduring more tickling and coughing and yawning and furnace blasts.
In response to a weekend call, the plumbers arrive after breakfast to look at our well, pump, and tank. Water on, water off, back and forth. I wait as long as I can and finally am granted leave to go (I don't need to tell you where). Naturally I take full advantage of the opportunity but, when I am finished and am ready to push my happy, cleansing buttons, I am told to wait because the plumbers have turned off the water again. I sit and wait, not long but long enough for my feet to begin swelling. Groan. At long last the water is turned on and I tidy things up and go back to my stupid chair.
So, the well. A new tank was needed (plunk). A new pump was needed (plunk plunk). The well is dry (plunk plunk plunk plunk) so the new pump was removed (-plunk -plunk). Temporary solution: connect to the neighbor's water (they are connected to county water). Short-term solution: have the well filled by a local company that fills swimming pools (mini-plunk). Long-term solution: connect to the county water (plunk plunk plunk plunk plunk plunk plunk.....).
Not one of my better days. I hate ALS, I hate these stupid hot flashes, and I hate having to spend huge gobs of money I don't have.