Day 198. A Mental Vacation

Hotel Palace Ios. Sigh.

This has been a week of upheaval and strife.  I’m tired.  I see I’m down to less than 200 days left to live.  Supposedly.  Should I have marked that somehow?

So why does my mind drift instead toward the Island of Paros, in the Cyclades, Greece?

Two, maybe three days of my life I spent on that tiny island, twenty years ago, soaking up the sun, drinking fruity drinks, eating phenomenally salty feta cheese and sucking my fingers, after juicy kalamata olives.

We spent one idyllic day, on Golden Beach, John and my brother Greg and I.  The place was aptly named, golden, and deserted, except for a few German sunbathers and some French windsurfers, who (we thought, hilariously) windsurfed in the nude. The day was perfect for no special reason:  but the weather was exquisite, not too hot or cold, with the sun shining on us without a break from clouds, but somehow not so blindingly that we felt a need to get into the shade.  We could have stayed all day and into the dark.  Did we?  I don’t remember.

I only remember how funny those naked French windsurfers were, how immature John and I were about what all was flopping in the wind. Then John and I swimming in the winedark sea, taking off our trunks and doing backward hand stands toward the beach, both of us laughing so hard. I laughed so hard that I aspirated sea water. But we were terribly disappointed that Greg did not see our Aegean Sea mooning show. Still, my abs hurt the next day from how hard we laughed.  Oh, we knew we were immature Americans! I have never grown up since.

So, I am remembering this day so fondly, the way the wind cooled my sunburned skin, the way my red skin grew white polka-dots when it got chill goosebumps.  I relished the coolness of the icy bottle of water I know Greg would have bought me (because that’s the kind of guy he is).  I remember it, return to it now, because at the time, it never occurred to me that it was the last trip of its kind, for me.

I mean, I never appreciated it for what it was, for the sensations I was having, the wonderful place, for the people I was with. I was having a fantastic time. But at the same time, a tornado of some kind always rushed my cerebral cortex: I was feeling left out because I had no love interest, or no boys looked at me, or whatever.  The first couple of days we were there on the previous island, a spider bit me….in the face…so I was sure that everyone would stare at my swollen face. I always found something to bitch about, if not to someone else, then to myself.  For that reason, I didn’t fully enjoy the trip. What a tragedy.  What a fool I was.

Thus, now that I am sick and it’s hard for me to travel—I had to quit (or at least delay) Physical Therapy this week for complex reasons,  I’ve been feeling like I can’t get anything done, and then yesterday I tore the skin on my leg AGAIN, thus another trip to the ER, where (at least) they glued it shut (I won’t describe how painful that is!)—All these things are reminders that keeping it together at home is challenging enough that traveling is not going to be an option for me.

I’m still remembering that trip to Greece twenty years ago.  Another place we stayed was the Hotel Palace Ios (which is in the picture on the left, overhanging the sea), an absolutely gorgeous white-washed hotel, cut out of the mountain-ish hill, overhanging a cove of the sea (where divers would go every morning to harvest the squid for calamari).  The way up to the rooms involved going up beautiful grey slate steps.  Following the grey slate down, we wound up at the pool, made of Grecian blue and white tile.  It was on a fantastic slate patio with a bar that played fantastic music all day, run by a fun, gorgeous bartender, Photis.  All day long, a few old Greek men sat at the bar drinking Ouzo.  Who needed the beach below, when we could swim in that elegant pool?

When someone asks me to form an image of relaxation, I imagine myself catching the sun and chill on Golden Beach, or in bed one morning at the Hotel Palace Ios with the cool breeze blowing in the window, and Pink Floyd’s “Time” playing loudly at the pool in the Cyclades Islands in Greece, which may have been my life’s peak experience. I may not have enjoyed it fully then, but I will enjoy it more than enough now, over and over. I guess I can travel….in my mind.

What about you?  Any peak experiences of your youth that you relive?

And for that matter, what image do you form in your mind when the voice on the relaxation tape tells you to picture a relaxing place?

Day 217. My Date with Destiny

So when we last were together, I hinted that I met with the eminent geneticist, Dr. Claire Francomano, who has been (or will be) able to help me tremendously. Here’s the scoop:

This is my attempt at a self-portrait a la Basquiat

PRE-EXAM

During the visit, Dr. Francomano’s assistant went through the 33-page questionnaire I had returned to them when I made the appointment (six months earlier! It takes that long to see her; the demand is that great, but so worth it!). I had to update anything that had happened in six months—my December hospitalization was a big deal, for example. Then the doctor’s assistant, Jessica, briefed her before they both came in for the exam. Not only is Dr. Francomano brilliant and kind, with shining eyes and a dazzling smile, but also Jessica was brilliant. They function as a sensational team. So whatever Dr. Francomano says during the interview, Jessica is typing into a report, pulling in relevant template paragraphs as the doctor brings topics up. Here’s the stunner: I would forget some detail in response to a question during the exam, and Jessica could remember it, based on her close knowledge of the information. “Didn’t Greg have that?” It completely knocked me out. She didn’t even know my family, yet she could answer questions about us better than me!

EXAM

An exam by a geneticist is similar to the kind of physical you probably have had, with some things added. Height, weight, BP, some taps on the belly, all the same (although if the exam findings are abnormal, they might be positive for genetic mutation as well). Then the doctor begins to look for genetic mutations. I’ll give you some examples of positives I had.

Here are a few tests related connective tissue disorders generally (those include Ehlers Danlos Syndrome): I score 7/9 on the Beighton Scale, which indicates that I have joint hypermobility. I can touch my forearm with my thumb bent underneath the wrist; I can bend both elbows in the wrong direction 22 degrees; and both my knees bend about the same in the wrong direction. I can also touch my palms to the floor with knees extended. So that’s the measure of the Beighton Scale. Oh, I also have hypermobile shoulders (I always wondered why no one else could do this:) Reach on) e hand over and behind me and the other under and behind me and shake them—do that on both sides. In addition, I have clinodactyly (a permanent cuvature of the fifth digit finger and of my toes, which is strongly associated with various genetic disorders, but also with autism, incidentally), piezogenic papules on heels, and hammer toes. All these seem to be related to Hereditary Connective Tissue Disorders (HCTD) (please read the links for more info, if you’re interested).

If you want to send me a video of your trial of the Beighton Scale to post on this blog, please do! Shoot me a response on here or email me at franglass AT mac DOT com, and I’ll give a couple of other exam trials to add to your video if you think you might be hypermobile.

In the exam, Dr. Francomano did name still more issues I was unaware of. I have grey sclerae (whites of the eyes). The whites of your eyes are composed of connective tissue. Normal sclerae are white (or opaque) because the connective tissue is thick enough to disguise the choroid (that’s dark stuff that houses the vitreous humor of your eye). However, people with HCTD have progressively thinning sclerae, and thus the grey-ness. This fact haunts me. How thin is too thin? I envision the contents of my eye rupturing sometime. How terrible it would be to be blind. Maybe that’s the least of my worries, though.

I love that Dr. Francomano finally solved at least part of the mystery of some of my proprioception problems in physical therapy. (If proprioception isn’t in your daily vocabulary, break it down to two words that probably are: proper and reception. This word refers to the ability we have to orient ourselves in space with unconscious stimulation of the body. So if you recognize those two words within the long word, you’ll remember it: we can move through space because we get the proper reception from the body. Got it?). So, the doctor explained I have a straightening of my cervical and thoracic spine (above the waist), the direct opposite of scoliosis. It so perfectly explains why when in physical therapy, when the therapist asked me to stand leaning over, my spine parallel to the floor, he expected a gentle, natural curve in my spine (like most people have!) but I never could produce one for him—nor could I even feel what he meant in a thousand years. I can’t get proper reception from my body. The transmitter is off.

Anyway, at the end of the exam, Dr. Francomano had me get dressed. While I did so, Dr. Francomano and Jessica met and compiled the rest of the report, which took some time. Then the doctor came back in the room to meet with me and discuss her diagnosis and recommendations with me.

She told me her general impressions, some of which were a surprise, and some of which were totally shocking. But her delivery was so kind and sweet; I have never experienced such caring.

The physical exam with a geneticist was a little like some sort of strange acting class. I had a curious sense of being both in my body and about six feet above it, observing. I was both the performer and the audience. Without apologies, I have a voyeur’s fascination with all things medical, so the exam, and its curious vocabulary of the genetic mutation was a treat (particularly from the voyeur’s perspective, not so much the performer’s). Being the performer felt like being a body in that traveling medical exhibit, Bodies. I didn’t panic, though until the appointment was over, because somehow it didn’t sink in that we were really talking about me.

More next time, kids!

Day 322: Blog’s Been Blank: Babe’s Been Broken

Day 322.  So many days passed.  Lost.  It moves me to tears to think of it.  I haven’t written a word since we last spoke.  Much water under the bridge on my journey.

Well, okay then.  While the rest of you were ring-ting-a-ling-ing at your champagne-toasting, hors d’oeuvre gobbling, slow-dancing fêtes, I was feeling like my lights were out.  I ended up spending a week at the very, very decidedly “developing worldWashington Hospital Center (just try using the bathroom in one of the patient rooms).  Oh just Deck the Halls with Boughs of Bedpans.

It wasn’t all bad:  I had round the clock IV Dilaudid, and though I was NPO (no food or water) for three days, and on a liquid diet for the following two days, it was sort of like being in some kind of a dreamy, stoned spa….I lost five pounds for the first time ever in the month of December.

My favorite moment in the hospital?  This email from Carlos:

The Sainted Carlos

I’ve heard you are in the hospital… what’s going on? Xmas in the hospital seems a bit extreme. Are you giving birth to baby Jesus? That would explain it. … Love, oodles of it.

I am STILL laughing at that email.  I’m sure darling Carlos can hear me, all the way down in Buenos Aires.

This visit was a scare.  I had pain around my navel, near one of my aneurysms.  A rupture there could mean curtains for me.  Oddly, the gravity of the situation didn’t register at the time.  I just knew I should move quickly, so I was my same plucky self.

Last week, when I was safely home, I saw a writing prompt that asked me to write about what I would do if I had only an hour left to live.  I felt like I really knew the answer, no speculation.  The answer is that I would do whatever I could to keep on living, but not send off the alarms to my loved ones because it would just torment them if I was wrong.  Luckily, I knew that this was a good plan, since I was wrong on this call.

I read fanciful answers others had posted, like go and finally eat that ice cream sundae I’ve been denying myself, or go and take the kids out of school so I can kiss them, or go find the guy who was my only one, true love, kiss him, and finally admit it after all these years.  None of these answers are in any way practical or even probable.  When you think you have only an hour left, you are afraid.  All you can do is what you do every day:  try to keep on living.  You do what you do in every single other situation: continue the perpetual motion of swinging one unremarkable foot and plunking it down in front of the last one. That is all of us survive the everyday trauma of living, as well as the life-and-death traumas.  We have no choice.  There is a certain comfort in that.

So, after a week on two different antibiotics (okay, I lie, five days.  I stopped them because they were killing me, rather than having any effect on any sort of bacteria that were supposedly in my gut), I am fine.  Feel great, in fact, a wonderful way to start the new year.  I have tons to tell you.  We’ll catch up in days to come.

Day 352. Bathed in the Spirit of E-coli

If I were to say to you that I had a shitty Thanksgiving, I would not, for once, be writing hyperbole.

Giant Stank-Distributor

I was all dressed up and ready to go to Melanie’s Thanksgiving Vegan Extravaganza, looking forward to one or both of her twin eight year-old nephews being my date(s) for the festivities (yes, it is that hard to get poor Heidi a date). Just so you can picture: I had the purple velvet empire waist top with the silver sequins and some grey silky pants.  No shoes or socks yet.  Was just doing my makeup when nature called….and for the record (I know this seems like TMI, but it’s important), it was numero uno.

So, the toilet doesn’t drain.  That toilet has a destructive history, so I wasn’t going to fool around.  I grabbed the plunger and, congratulating myself for being so handy, gave it a few plunges.  Well, instead of swallowing, as the toilet usually does in that circumstance, my toilet vomited, and I’m not talking just a dry heave.  I’m talking a fountain.  And it was a fountain of my neighbor’s feces, and her neighbor’s feces, and his dead aunt’s feces, and without doubt the feces of Satan himself.

As this occurred, I thought, well, shit.

Then, I thought, if I just plunge harder, this nightmare will end, but it did not.  No, the water kept running and fueling this nightmare, until there was nearly an inch of water on the floor, on my naked toes.  Taking in all that dreadful sensory stimuli, I was a little slow to get to the Water Off valve at the wall.  Once I did, I grabbed every towel in the bathroom and put it in the doorway, to block the flood, and took still more towels from the hallway closet.  Then I thought I had the flood forestalled.

I didn’t want to repeat the fiasco of two summers ago, when the whole apartment had to be re-carpeted and -painted, thanks to this same monster toilet.

Then, I set about trying to find the building maintenance emergency number.  Whenever I have needed the emergency number in the past, I have just called the building’s management office.  When the office is closed, the number is given on the recording.  This call reminded me that we no longer have a building manager; the recording referred me to the building perpendicular to mine (the one with ugly blue balconies).  So I rang over there.  That recording just said, “We’re not available; please leave a message.”

No problem, I thought.  I’ll walk downstairs.  The number has always been posted in the mailroom.  Nope.  Nothing.  So then I started pounding on neighbors’ doors.  No one was home, except one girl on the first door on your left as you leave the elevator (if you want to kick her door).  She did come near the door (I could see her through the wee spy glass), but then she just wandered away.  Biatch.

When I got back to my apartment, I walked on the carpet and heard the terrible “squish, squish, squish” of carpet soaked through the padding and then some.  By this time, the water had wicked through the padding and all the way up past the laundry room to the kitchen.  Ugh.

So now I called back at the management office at the blue balcony building. As you might imagine, I left a very kind and dignified message about where that silly emergency number might be, because there happen to be feces flying about my apartment and I need either their help or the emergency number, and I need it before Monday.  Thanks, ever so…luvya; mean it.

Then, I got out the letter from the property management company, Real Estate Services Incorporated, announcing my rent will be raised in January.  So I conveniently had that phone number.  I left my landlord a cool-headed message as well about how I felt spending my Thanksgiving up to my elbows in feces without an emergency number to call.

By this time, I had already terrorized my poor mother, who was trying to be on vacation, with two hysterical phone calls.  I might not even have noticed my own hysteria were it not for the gentle reminder from my mother: “Uh, you are going to have to get yourself together; it is going to do you absolutely NO good to wail and cry like that!”  So, you can gather that I maintained my sunny disposition throughout the experience.  Probably the only reason I am semi-coherent today is that Sharan talked me down off the ledge no fewer than fourteen times.

At this point, it was clear that I wasn’t going to make it to Auntie Melanie’s fabulous vegan extravaganza.

I had made an amazing vegan pumpkin cheesecake to bring.  I was so looking forward to the amazing feast (with no one shaking a turkey leg at me and saying, “Heh, heh, heh, how about a little turkey, there, Heidi.  Oh, that’s right.  You’re a vegetarian”).

Melanie was very understanding.  Carlos and Bob even brought me a plate of amazing Melanie food (so sweet!) later at night, as I still waited for the plumbing/cleanup service I called to clean up.  I won’t go into the details about that, because they’re too frustrating.

Suffice it to say that as of late this afternoon, my carpet has been cleaned through water extraction and a little chemical treatment.  There’s a big fan drying it, which thus far, seems to be a stank distributor.

On a more positive note, my killer cleaning mistress of the universe, Daysi, came in and rocked the deadly bathroom.  She went over everything in there with bleach five times and washed the shower curtains, including the plastic one.  It looks like a brand new bathroom that no one ever lived in. To give you an idea about how hard she worked, it took her two hours in that little room. Damn the luck; I wish I had before and after pix!

I’m going to have to deal with the building on Monday about re-carpeting.  Then, as I have confirmed with water expert Marvourneen Dolor, there is still the matter of the e-coli bacteria I have tracked all over the house.  Careful as I was, I still had to wear shoes to go up and down that hall, and into the living room. Before I figured out it was in the hall, I wore my shoes in both bedrooms. So even now if I take them off at the door, the bacteria are here.  I need to have the whole place steam cleaned.  We all know about my immune system and just the run-of-the-mill bacteria.  Oy.

Does anyone have a plastic bubble for me to live in?  I am signing up.

P.S.  Do you think I ought to report to the police a missing 3/4 vegan, gluten-free pumpkin cheesecake?

Day 363. Driving and Crying.

In anatomy, lumbar is an adjective that means ...

This is the lumbar region of the spine.

The way today went was a perfect microcosm of my life of the last 10-ish years.

Had to cancel brunch with my dad and Marilyn because I did not feel well.

Then I had to ‘just say no’ to The Scooter Store.  Let me explain.

I got ready for my quarterly appointment with the Pain Doctor.  It is impossible not to fall the tiniest bit in love with the man who writes me three prescriptions of various strengths for medications that will take the edge off of the agony — and then several more creams and nerve blocks that will keep me from hanging myself when those wear off after two hours.

So I love Dr. A., the Scooter Store had called him to make sure he knew that I was coming with a mobility questionnaire, and I had spoken to my other Dr. A about my expectations about the whole thing.  It was all set up to be just dandy. Nevertheless, things did not turn out the way I expected at all.

To avoid confusion, I have two pain doctors, both Dr. As.  Dr. A of the prescription pad, and Dr. A of the solutions, the psychologist. I will speak about him in greater detail another day, but he plays an important role today as well.

Yesterday I saw Dr. A of the solutions, and I told him that I was really having trouble with pain at night, with sleeping, yadda yadda yadda.  He asked me a good question: what did I think Dr. A. of the prescription pad would say in our appointment today. I could easily predict what he would say: my spinal stenosis is to blame. Get another one of those steroid injections in the spine.  God, I hate those things. They hurt like the doctor used a nail gun to inject the steroid (not that minute, but about four hours later). I insisted that my issue is related to my aneurysm surgery, not the stenosis (diagnosed with an MRI — L4/L5). So, Dr. A. of the solutions showed me a diagram of the nerves.  Guess what? The nerves running from the spinal Lumbar 4 and 5 connect precisely to the places I point to where it hurts on my legs. So, I stand corrected (or more accurately, I lie down on a heating pad with my legs elevated, corrected).

 Thus, I went in to the appointment with an open mind, expecting that, hate it or not, we would arrange for an injection. Nonetheless, I did not expect, when I got there, to find Dr. A. of the prescription pad, with the mobility study in hand, saying, “Look this thing is 15 pages long.  It takes an hour and a half.  I can’t possibly do this with you.  If you would like to have it done, someone in my Maryland office does it for a fee of $10 per page.”  However, he confessed: “Doctors hate these scooters because they actually make the patients worse.  In ten years, your legs will become even more atrophied than they are now.  Are you sure that is what you want?”  It is of course difficult to capture tone of voice.  Persians tend to run toward the hot side of the faucet, but it felt to me like he was giving me wise advice, brotherly or fatherly, rather than being patronizing.  I certainly do not want to be 57 and unable to walk (something he strongly suggested as he continued to speak).  And, as it is, my ankles are about as big around as your wrists.

One of the warnings he brought up, though, was that I might be unable to use the stairs soon.  “Wait a minute,” I said.  “I am not able to use the stairs as it is.”  I explained the issues I have with delayed pain, waking up in the night screaming.  I told him that after my short jaunt to the doctor today I would have lots of pain, that I don’t go very many places and that I don’t like my life very much.

He suggested that we do an MRI and X-ray of the spine to make sure there is not some sort of issue with my spine that is causing me to have ridiculous pain (for which, obviously, surgery would be required).  I remain extremely skeptical about any sort of surgery for someone with VEDS.  We tend to have such awful, lengthy recoveries.

“But in the meantime,” I asked, “what should I do?”

“Just go and walk anyway.”  I suppose I understand.  I definitely don’t want my legs to atrophy too much.  Think about it, though.  How inclined would you be to go anywhere and walk any distance if you knew of the hell to come later on (and that no combination of painkillers and muscle relaxers would touch it)?

Leaving, I had the most bizarre mixture of relief and lightness (hooray! I don’t have to deal with some nasty machine and its weight and bulk around me) along with pure frustration:  he doesn’t get how this disease affects joints, muscles, tendons to give the nastiest drilling pain fairly constantly.  It is so constantly there, I don’t even describe it to him when he asks me what hurts, so it gets left out of the treatment.  Then there is the awful nerve pain like hot electric wires fallen in the street and snapping around at the cars and the people like a fierce reptile. These are moments when all the conflicting and unfair information stops computing.  Just for a minute, or for an hour, before I talk to someone on the phone — today poor Margie had to hear me cry and whine, and then my angelic mother — I just feel like driving my car off of a cliff (like the really cool ones they have in California that plunge right into the ocean).

I have been through being disappointed and hoping I was on my way to finding a better way to manage my pain so many times, only to get to the doctor and have him hear only about 33% of what I am saying, that I am getting very, very good at driving and crying.

So, enough of the pity party.  I got home, talked on the phone (as above) and realized that I have writing and painting to focus on, and not this to worry about.  No sympathy please.

365 days. So you say its your birthday.

So birthdays are fun.  When we were teacher interns and grad school colleagues, my friend Janelle and I played a birthday game that consisted of reminding our colleagues of how many shopping days remained until our birthdays. I am sure everyone thought it was positively darling.

Ours were conveniently about six months apart, so we could spend much of the year in birthday reminders.  I was embarrassingly old when this happened (it’s never too late to have a happy childhood, right?). Besides, it felt like we were celebrating all the time.  What a happy epoch of my life! To my mind, we are never too old to enjoy a birthday.

Even today — this whole weekend, really, I had a fantastic time of it.  I celebrated and expended more energy than I remember having done in a long, long time.  Lunch out with Marvelous Melanie on Friday, then dinner out with John, Foster, and Katherine old, dear friends, close to my heart.  Saturday was lunch with my angelic Mom and Nathan, Greg and the boys. I spent so many moments looking at them and thinking that without them around me so much, I would be less of a human being.  Meeting up involved an hour-long car trip, for which my angelic Mom had prepared a blanket and pillow in the back seat so that I could sleep both ways.  I took full advantage, too, because I was tired — and I had to rest for today’s event, the monthly Salon I hold, which took the form of a birthday party as well.  I got up and made appetizers today as well (cooking makes my legs take the shape of tree trunks, but I didn’t care).

Mr. Magoo and McBarker.

Mr. Magoo is voted the 29th best cartoon of all time by TV Guide (1949 - 1983 in various shows)

Then four friends came over.  Carlos presented Pedro Almodovar’s films.  We ate a lot.  Melanie made (and framed) a fantastic picture of a crown, for me, a princess — so appropriate!  And Carlos & Bob brought me a really groovy silver briefcase, and inside it was a box set of Mr. Magoo cartoons.  We watched some of them and they are so wonderfully politically incorrect.  And Randi gave me a book about erotic art (perfect for a person who set a theme of sex and the body for this year’s Salons).  I’m not saying that the party was all about the gifts, but it was fun.

I am leaving out the list of presents from other friends and family…but they were great too.

I didn’t think much about it until now that, if Dr. Lunkhead were truly correct, this day could be the beginning of my last year on the planet.  Day 365.

Eat, drink, and play,

While here you may;

For soon as death

Has stopp’d your breath

Ye ne’er shall see a cheerful day.

From Ecclesiastes 8:15 Clarke’s Commentary of the Bible

My intention for this year is to eat, drink, and play, to paint, and to write like a fiend.  I want to make the world around me beautiful and to really enjoy what I do.  I want to love the people I do it with, to push the sick feelings out of the way, so that I can make each day exquisite.  Every day I do all of this, I will get stronger and better at it and more resolved to prove Dr. Lunkhead wrong.  I have five books in my head. These will take time. Thus, more birthdays to come. Many more.  Get ready.


369 Days: The Mobility Scooter

Pride Mobility SC44X Go-Go Ultra X4 Wheel

So I’m thinking about getting a mobility scooter.

Oh God.  That sentence weighs a thousand pounds.  Every word is power-loaded with deep, heavy shame and emotion.  You have no idea.  Let me see if I can build a window:

Last Monday, my angel mother very gently suggested that I get a scooter by handing me a page from a catalog with a scooter circled.  I turned my lip up in a sneer and gave her a list of fourteen reasons why I was not doing that.

This week following my command performance has been lousy with pain, sort of like punishment.  A few of the days, nothing I tried could shut it down.  That’s saying a lot, since I have an arsenal for pain, from meditation to very strong medications.  On days like that, I want to call my pain doctor and demand a stop to my pain that minute.  That must explain why he never returns calls for two or three days.

So, one day I walked around quite a bit,all the aisles in the grocery store.  Then overnight, I woke up screaming, grabbing my calves in pain. The next day was unending misery.  The next time I walked significantly — this time around my apartment, cleaning closets — same thing happened.  So it is not surprising that Sharan kindly made the same recommendation as my angel mother:  in much kinder words than this, Sharan told me to get over myself and get a mobility scooter.

Thus, I called Scooter Heaven (a pseudonym) to find out the scoop.  I had to have a “mobility interview,” with my new best friend and mobility counselor Tammy, who offered me not only mobility advice, but also existential bon mots for over an hour.  I told her I really want the device so that I can go to a museum for an afternoon, go shop at an outlet mall for a whole day, or maybe travel somewhere like my beloved New York City.

Here’s the interesting part:  For the insurance company to pay, I must require the scooter for in-home use. They don’t care about my needing it for outside.  So, the hour-long chat was a series of questions that try to establish that need (I also have to have an exam by my doctor, who I happen to be seeing next week anyway).  I really don’t need a scooter inside–don’t even want some huge device monstrosity inside my apartment.  But when Tammy started asking me about whether I cook…well, no, not anymore because it hurts too much (my mom sends over big pots of soup or stands in my kitchen and makes me something good).  Or on a rare week when I’m doing well, I cook stuff, but I pay for it the next day in pain.  It would be cool to have a solution for my cooking problem, and get to enjoy cooking again.  Not surprisingly, my new best friend Tammy had numerous other ideas about how this mobility contraption could help me in my house.

In fact, she explained in the upsell, the scooter probably isn’t what I am really after, since the three-wheeler has a relatively wide turning radius, whereas a mobility chair can turn 360 degrees in one spot–ideal for a galley kitchen like mine, for example.

I don’t want an enormous wheelchair!  Imagine the stares when I am shopping at Ross’s Dress For Less and I hop up out of the chair to try something on.  Immediately, women around me start clapping and singing, “Thank you Jesus!  Thank you Jesus!  It’s a miracle.  She is a walking Lazarus.  She is healed, thank you Lord!”  Enough.  Enough.  Enough.

See, a mobility Chair makes a real disability promise, as in “This chick has BIG problems,” whereas the scooter whispers (comparatively), “Oops!  Little bitty problem here!  Back off, folks.  Nothing to look at here.  Go back to your business!”  I don’t want to be a device liar.

Furthermore, I have no intent of buying one of those dreadful minivans or SUVs needed to drive the chairs around, unless I physically need a chair, obviously.

NBF Tammy promises that a gadget connects to my Camry on a trailer hitch, telescoping out and forming a ramp, so that I can drive the dreaded chair up the ramp and into the trunk somehow to be stowed.  Somehow this seems like a very, very bad plan.  However, I haven’t seen it in action.  I would have to do so to buy it.

As of this morning it appears as though a mobility device of some kind truly is in my future, since NBF Tammy called from Scooter Heaven to announce that my insurance indeed pays 100% for the scooter or chair I select.  Hooray….I think.

I must go now and practice looking cool in the mirror, cool from the mobility scooter height (so that I don’t look like one of those people in the Walmart candid shots that are circulated around the internet).  My brother is buying me a megaphone so that I can shout, “Out of my way fools, here comes the princess!”

I missed two whole writing days.  They were sleepy days,but one of them was happy, seeing Scott.  Sometimes a day away from writing is worth it, right?

369 Days.