Episode 76: At it Again: Latest Theory: Primary Lateral Sclerosis

Well, it certainly is nice to be cured of Hepatitis C. I just hope the "cure" lasts. I will continue to be tested for the next several months ... here's crossing fingers and toes that it holds.

I'm still after the correct diagnosis of my neurodegenerative disease, especially now that the Hep C is behind me. I was told that I have a neurodegenerative disease by my local neurologist, but thus far there's no definitive answer as to whether it's multiple sclerosis or some other condition. Dr. A said he'd diagnose me with MS if I had lesions in my spinal cord, which I don't--but I do have them all through my brain. He also said I was a little "old"--mid-50's at the time--for an MS diagnosis (though late-onset MS IS a thing--and, of course, I've had mysterious hospitalizations and pregnancy troubles that may well have been due to whatever this thing is messing up my brain.)

Lest you think I'm obsessed with this brain thing, let me say that I've had a copy of Dr. A's report on his (abnormal) neurological exam of me and referral to a Johns Hopkins neurologist for over a year, but I've never opened the sealed envelope. I guess I don't really want to know. Pretty scary stuff.

At the same time, not knowing sucks. It would sure be nice to have a diagnosis so all these weird symptoms will no longer be thought to be coming from my imagination.

Some of the symptoms I'd hoped would clear up with the Hep C cure have not cleared up, and that's a bit of a bummer. A lot of a bummer, actually. For instance, the debilitating sleep disorders--idiopathic hypersomnolence, circadian rhythm disorder, sleep apnea, REM sleep disorders, and a history of hypnogogic hallucinations--are still with me. The good thing is that, when I actually AM awake, my brain is much clearer. Brain fog is a common symptom with Hep C, and I definitely suffered from that. I"m amazed when driving around how crystal clear the world looks now, and that alone is a miracle.

I'm pretty sure my sleep disorders are due to some kind of sleep-disordered breathing, but what is causing that?

Another look-see of my signs and symptoms, as well as what Dr. A has told me in my visits to him, has led me to wonder whether the problem may be something called primary lateral sclerosis. This is related to amyotrophic lateral sclerosis (ALS) of bucket-challenge/Lou Gehrig/Stephen Hawkins notoriety but does not tend to move as quickly.

One of the most obvious signs of damage in my neurological exams is hyper-reflexivity. My reflexes have always been normal in the past, but about three years ago Dr. A hit my bony right knee with a hammer and my right leg flew up so high I nearly clipped him in the chin. The reflex was so strong it sort of traveled through my body, and my left leg went halfway up, too. (When I saw Dr. Neurolobitch at Johns Hopkins, her intern who tested me first was struck by the vigor of my reflexes, telling me she wished other medical students could see them--but Dr. N, who was convinced, I can't help but think, that I was faking, downplayed this.) I know I'm not faking, and this is a sign of upper neuron disease.

Upper neuron disease can also affect balance (remember my weird fall while walking and talking at the same time--an early sign of neurodegenerative disease--a few Christmases ago? My big, fat, swollen nose when I hit the pavement beak-first?) I'm clumsy a lot. Even Honey has started making fun of me for how much I bang into things, knock things over, drop things, and generally wreak havoc wherever I go.

The disease can also affect breathing muscles and processes, which leads to weakness in skeletal muscles, and I'm pretty sure I have this in spades. I've been complaining of my exhaustion on the slightest exercise only to be foiled by incorrect or poorly executed tests. "Unless it happens in my office," my pulmonologist tells me, "it isn't happening." I contend I wasn't given the right tests, and at least one that I was given was messed up by the technician. All I know is that my breathing/stamina issues are real. I've been complaining of them since my near-respiratory-breakdown in Europe during the 2013-2014 holidays.

The disease is also known for a "sense of weakness and early fatigue," according to Singer, et al., yet generally without weakness found in neurological tests. That fits me to a T.

Upper neurons, by the way, do this:

Second-order motor neurons are upper motor neurons whose cell bodies reside primarily in the precentral gyrus or the primary motor cortex of the frontal lobe. They send fibers that directly connect to lower motor neurons in the brain stem that innervate the muscles of the face, pharynx, and larynx or to lower motor neurons in the spinal cord that innervate the limb, trunk, and respiratory muscles. (http://emedicine.medscape.com/article/1171782-overview?pa=8dH4jbWcJ9EMQ8XXBYmInAn4vTn47ZAhyNXbVN23XbpfaQjLSWefbWko3s%2FTTYy8Dc%2FQpD2oKbvJtxcVOoY35zRbGMQ7s%2F89oYHt2gMBBbM%3D)

So, I guess it's time to open that envelope and see what Dr. A said about my signs and symptoms. These, I know:

• Diffuse, periventricular white matter lesions;
• Brisk reflexes;
• History of fascilations;
• Several diagnosed sleep disorders;
• Breathing/stamina issues (as yet unverified by doctor but chronic in "real" life);
• Fairly extreme stiffness when standing up or getting up from bed;
• Potential laryngeal pharyngeal reflux--some (unverified by doctor) signs and symptoms of this disorder;
• Aphasia issues;
• Urinary urgency and incontinence (fun).

My age when these signs/symptoms really flared into something undeniable was 54, the mean age for PLS onset (Tartaglia, et al.)

I also have a history of 5th cranial (trigeminal) nerve damage. This, however, is apparently not related to primary lateral sclerosis or upper neuron disease. Lucky me, there's something else wrong with my brain.

One thing for sure, I need to bring up these issues when I next see my pulmonologist. He has cowed me into not telling him any more symptoms because he makes me feel like I have Munchausen's or some crazy malingering disorder. But I've never shown him Dr. A's neurology report. I need to open it and see what it says, and then I need to give a copy to Dr. P. 

Stay tuned, sports fans!

And the envelope says ....

Episode 75: Update on Harvoni Treatment for Hep C

Well, sports fans, it's now been a month and a half since I started Harvoni to treat the Hepatitis C I contracted during a blood transfusion in the 1980s.

So far, side effects have been few, though I did have one mortifying experience with uncontrolled diarrhea in a public place. Nothing is worse than walking through a fast food restaurant trying to get to the bathroom before a major "accident" and not making it in time. But that wasn't the first time that has happened. My theory is the medicine kicked my liver issues into high gear while the virus tried to fight off its attacker, and that was the lovely result.

The diarrhea has calmed down a lot since those first couple of weeks on the stuff, I'm happy to say. I hope that's the LAST time I ever have to deal with that problem in public!

Now I have a new issue--my fingernails have turned brittle and have begun cracking and splitting. Ouch! My fingertips hurt as I type. I'm keeping them cut short, but they still split painfully. Ugh. I also worry that my hair, already thin, is getting thinner. But I suppose far worse things could be going on, and I'll be happy if this virus is killed off.

I've been reading forums online, which is a dangerous thing to do. I learned that long ago when contemplating going on Effexor for my anxiety. If I'd believed everything I read, I never would have gone on a drug that transformed my life from one of debilitating anxiety to relative self-confidence and a clearer perspective. I'm not saying it's a perfect drug, but I'm grateful for it.
And the same will probably be true for Harvoni.

The scariest thing so far about the forums is that a lot of people claim to have side effects long after stopping the drug. Now, supposedly, the Harvoni is out of the system two days after finishing it. So it seems weird that folks would be having side effects when it's no longer in the system. But we do hear about long-term effects of radiation and other treatments that happen long after the treatments have stopped. We see the ads from lawyers about such effects. I really hope nothing like that will pop up for former Harvoni users. I hope I didn't just trade one death sentence for another. On the other hand, we all live under a death sentence. It was worth the risk. I think.

I'll check in again if I notice anything else as I go through treatment. I'm halfway through and keeping my (painful) fingers crossed that I'll be one of the 95-percent-plus patients who are cured of this nasty virus.

Episode 74: Anxiety and Endings

I started this blog some five years ago with an episode on anxiety.

I don't think I come across, necessarily, as an anxious person, and as I explained in that first episode I never considered myself anxious until "later" in life, maybe even in my forties. This wasn't too bright of me, because I'd had nearly crippling anxiety after starting new jobs more than once by then. I'd been a shy, awkward kind of kid, and though I sort of blossomed in high school I've never felt overly comfortable among people I don't know. I still don't, but I've learned to fake it better.

On the other hand, I'm not much of a worrier on a day-to-day basis. I can relax fairly easily if I do not have any uncomfortable tasks hovering in the near future. This situational anxiety, however, has gotten worse and worse over the years and, at this point, I'm pretty sure it has to do with my neurodegenerative condition, many of which affect patients' ability to get motivated and start new tasks. (These tasks need not be uncomfortable, difficult, or negative, in fact. Just switching from one mode to the next becomes incredibly difficult.)

Tonight, however, I'm facing one of my least favorite tasks, and, hence, I'm writing my blog--er, rather, producing another episode of The Mary Dell Show.

Although my various diagnoses and related severe energy/sleep problems forced me to give up full-time work a few years ago, for the past couple of years, I have been teaching one section of English 101 (freshman comp) at the local state university in town.

This is the perfect part-time job for me. All those years of school have not been utterly wasted. I can still impart my wisdom (such as it is) to a fresh new crop of young adults making the transition from home to their first year living with roommates, doing their own laundry, managing their own time, and facing college-level courses. Young people at this age inspire me. The world has not yet beat their ideals out of their systems, as I often fear it has mine.

Before my illness got the better of me, I was a full-time college English professor, a job I'd aspired to when enrolling as a freshman myself at the age of thirty. I had two little boys at home as I pursued my dream. "Why would you become an English major?" I was asked again and again. I was old enough to know, wasn't I, that no one made any money as graduate in English?

Actually, as I've grown older I've become far more interested in the sciences, particularly ethnobotany, but I still do not think I'd trade my English degrees. I was a book nerd long, long, long before that was ever considered cool. I've written stories and poems and journals since I was a child and even wrote three (unpublished) novels in my twenties and thirties.

I love the written word, especially the beautifully written word. Oh, I know all about postmodernism--I was a graduate student at the height of "high theory" in literary and cultural studies during the mid-1990s. I know privileging certain types of literature over others is conservative and old-fashioned. But I love my "Great Books." And I also welcome other types of literature into the canon.

But I digress. The point is, I mostly love my job as a teacher. Mostly. Frustrations exist, as any teacher will tell you. But the worst part of the job, for me, is what is happening tonight: I despise grading. Not just because it is a chore, but it is a chore. Because of my energy issues, I am not on campus more than about four hours a week. I have to bring my students' papers home with me to grade. So here I sit. Computer on lap. TV on for company. BAD study habits, I know. The TV should be off, but the sound of voices on low volume is comforting. Grading is a lonely job.

I finally decided that one reason this final night of the semester is so difficult for me is that it is an ending.

Now, I am not the "mother substitute" type of teacher at all. I maintain a fairly distant demeanor in class. I'm friendly, and I prefer to keep things on a comfortable basis, but I rarely tell stories about my life outside of the classroom unless it is directly relevant to the topic I'm discussing. I used to tell more stories when I was a full-time teacher. I was younger then; perhaps I've grown more serious over the years. I used to like making students laugh. For someone who'd grown up morbidly shy, the power of owning a room is intoxicating.

But all that was before I got so sick, and before my eldest boy got so sick, and before I lost my full-time teaching job because of being so sick, and before I had to give up working full-time as a successful grant writer because of being so sick. I guess I'm more serious these days.

And so I look at this stack of papers and think about the seriousness of my task. Each one of these papers represents a young person who is hoping for an A. Very few of those papers represents an A paper. I have worked with struggling writers for fifteen weeks. What I can say is that those papers are going to be far, far better than the first papers these students turned in back in September. I can say that many aspects of their writing has improved, in some cases dramatically.

What I can't say is that they demonstrate a fluent understanding of punctuation and grammar--though, in nearly all cases, the student's punctuation and grammar has drastically improved over the semester. Are all the papers free of major errors, such as those having to do with correct sentence structure? No. Well, from what I can see, correct punctuation and grammar is mattering less and less these days. I'm horrified by this, of course, but it's a reality. But this still doesn't mean punctuation and grammar don't matter. I'm not ready yet to throw in that towel.

I try to impress upon these kids, for that is what they are--yes, they are adults, but they are young adults, and I'm nearing sixty, so to me they are kids (and quite often act like kids but, at other times, amaze me with their maturity and strength)--that, in fact, grammar and punctuation do matter. And, off the Internet, in the "real world," I do think that is true. Companies value employees who communicate well in person and in writing. And correct grammar and punctuation are vital for producing clear, well-written materials.

Knowing punctuation and grammar is my superpower.

It's not going to save lives. But writing might. Writing has. 

I want my students to have these tools so that they can go forward with powerful personal agency and be advocates for themselves and others.

So tonight is difficult. I want to see these students succeed, but I know I'll face papers that have errors that will take away from strong content. I'll face papers in which students haven't correctly cited a source, one of the key skills they are supposed to learn in my class and one that I've stressed since day one. I hope that, in all cases, those problems will be minimal and will not cause the student to fail this last of four papers. They cannot revise this last one. This is it.

Whatever the reason a student does not learn basic sentence structure--poor teaching/curriculum in schools, lack of interest/motivation/study skills by students, learning disorders, whatever--those problems cannot be entirely "cured" in fifteen weeks. And that is painful for me.

So many of my students this semester worked hard. They revised papers that did not pass the first time, in some cases for each of three previously assigned essays. They care about what they are doing. These are the ones I want to give an A just because of how far they have come. That, alas, is not what my employer expects me to do, and I know that maintaining academic standards is important. It still kills me.

And this is it. Since I only teach this one class, I won't see these students again. I'm a little sad about that. And so I'm anxious. I don't want to judge these kids. I just want to support them. Damn, I hate grading. Better get to it.

Episode 73: The Healing (I Hope) Venture Begins

I just took my first Harvoni pill, the first of some 90 that I will take over the next three months, one each day.

Will I be cured of my Hepatitis C in 90 days? That remains to be seen--but I have a very good chance of that for the first time since I unknowingly acquire it during a blood transfusion in 1980 or so.

I received the packet on Wednesday, and this is Friday morning. I decided to wait until now because Thursdays are my big day--I teach a class at our near-by college for an hour and 45 minutes, then drive about 1.5 hours to the nearest campus with a PhD in English program, then sit in a three-hour class, and then drive home again.

I didn't want to risk having diarrhea or other untoward side effects on that long day. Next week, I'll know better what I'm in for.

The bad news is that I picked up a bad cold, or possibly even the flu, from Honey, who contracted it from his kids. Honey is now a lot better, but he sounded horrible for a few days, and now I'm descending into that miserable sick world. But I didn't want to wait any longer to start the Harvoni.

ATTENTION, INTERNAL HEPATITIS C VIRUS CELLS!

GET READY TO HAVE YOUR ASSES KICKED!

Oh, I do hope that is what happens. I'll check in again as soon as anything comes up vis-a-vis side effects or any other reactions. Wish me luck, sports fans!

Episode 72: Upon Beginning Hepatitis C Treatment, the Bizarre New Experience of Hope

"Hope is the thing with feathers."

Yes, I know this quotation is practically a cliche now, but as someone who is about to finish her PhD in English somewhere around the ripe old age of sixty, I could not forego the opportunity to quote a little Emily Dickinson who, if I were concentrating in American Literature, would be my gal. As it is, I'm in British Lit, and I still haven't figured out who to choose for my focus--I have at least five favorites.

As usual, focus eludes me.

So, let me NOW get to the topic of the day: Tomorrow I start an eight-week course of treatment for Hepatitis C, Genotype 1a, on Harvoni. Perhaps, just perhaps, when I finish I will be blessed with the talent of focus, which has never been one of my greatest attributes, but which has now pretty much completely flown the coop of my brain.

"What?' you ask. "Didn't you, Mary Dell, just air an episode bewailing your inability to afford treatment?"

Yes, in fact, I did, and that is what I believed. However, the stars aligned, and tomorrow I will receive, at no cost to me, my first shipment of a month's supply of Harvoni. I received a grant for the copay of nearly $4,000 of the $50,000-ish cost of the treatment, and before anyone yells that it is the people who aren't working who don't have to pay, which isn't right, the fact is that I have worked my whole life and only stopped when I got too sick to do so full-time.

Before you judge, walk a mile in my shoes. If you can manage to walk a mile; I'm not sure I can anymore. Once I tried to walk from my honey's house to mine, a distance of 1 1/2 miles, and I couldn't even get halfway. A woman pulled over to me, where I sat with my head in my arms on the side of the road, and offered me a ride. I don't know what would've happened if she hadn't.

Besides, maybe I'll be cured, and maybe that cure will have a significant effect on my degenerative brain disease, my sleep disorders, and my worst foe, a weakness and lack of energy that has nearly destroyed my quality of life. And if I'm cured and can do it again, I would love to go back to work and bring in some cash.

This being on disability is no joy, let me tell you. I pull in a fraction of what I made as a college professor for some years and as a grantwriter at a non-profit organization for nearly a decade. My darling cottage is not so darling anymore because it's in desperate need of maintenance, but I can't afford that.

Winter is Coming fills me with dread, because keeping my little poorly insulated 1940s house warm during bitterly cold mountain winters will suck even more out of my budget when I already live on the edge of being turned out of my home. I have no luxuries, although my son and I do go out to restaurants now and then. Hey, I was spoiled by my father, who took the family out to eat every Sunday night. My grocery bill these days is small because, with my conditions, I have little to no appetite, so I see any occasional night out as an opportunity to get some nutrition in me.

I do love to cook, but now we're back to the original problem: my fundamental lack of energy, my general exhaustion.

I do so hope that my energy problems will be cured along with the Hep C! I'll try to regularly check in to let you know how the treatment is going.

Hope about my future is fluttering inside me for the first time in a very long time. It feels weird; I've forgotten, honestly, with this bubbly sensation felt like. It's very much like a thing with feathers beating against my rib cage--a bluebird, perhaps, flitting through the trees as a new dawn breaks.
________________

N.B. For a wonderful photo of a bluebird in flight, see a blog by Bud Titlow in the Tallahassee Democrat serendipitously titled "Eastern Bluebird--Is Happiness on the Way?"

Episode 71: Feeling Faint: On Severe Heat Intolerance

Today was a beautiful day on the mountain--77 degrees. It doesn't get much better than that.

Today was also one of the rare days on which I am awake during daylight hours. I have reversed circadian rhythm and diagnosed idiopathic hypersomnolence--a condition that researchers now attribute to brain dysfunction. Heat intolerance, too, is a symptom of many neurological conditions.

The sun wasn't out, but the air was was soft, with a freshening breeze. With several hours of daylight left, I turned to my favorite hobby--one that is difficult to practice regularly because of the aforesaid reversed sleep pattern. It's difficult to garden in the dark.

So, to the garden I went, a bit distraught that weeds can proliferate so quickly between my visits to its beds. But there's perhaps no better stress reducer for me than getting my hands into the dirt and yanking out weeds. Because we have had a lot of rain this summer, the mugwort, foxtail grass, and sorrel came up easily. I actually like all of those plants--mugwort for its herbal properties, as I'm a wanna-be herbalist, foxtail for its beauty in fresh and dried flower arrangements, and sorrel for its culinary uses.

But this garden runs along the beautiful stone wall in front of my property, and I must have some awareness of curb appeal as it affects my neighbors and their property values. That being said, I've allowed the milkweed to take off after volunteering--but it grows to some six feet high and looks kind of weedy after the flowers have bloomed. I've held it to the back of the border this year and will continue to let it grow here as a monarch butterfly nursery--or hatchery, rather.

Here's the front corner of my wall,
which I love. This everlasting sweet pea
is no longer there, but I do have some farther
down the wall. This corner now
has hostas and ferns. 

But to get off my gardening tangent, the point of all this is that I pulled out the weeds--and, truly, there wasn't such a huge number of them--and before long I was feeling faint and sweat was pouring from my scalp, face, and the rest of my body.  I wasn't able to spend nearly the time I'd hoped to in the front garden; before I could even remove the detritus from the wall, I had to retreat to the front porch where I rather collapsed on the glider. And, I repeat!, today was 77 degrees, with no sun, absolutely perfect gardening weather. I should have been able to spend hours out there. I don't think I reached an hour--more like 45 minutes--before I had to throw in the towel--er, trowel.

After a couple of hours of relaxing on the porch, the yard called out to me again. Well, actually, the porch railing called out to me. I picked up the clippers and began chopping the new growth of wisteria that winds around the porch railing, saving it to twist and bend it into a wreath. In all I might have clipped eight thin tendrils. I then noticed that the space between the porch and the rhododendron had filled in with new growth, too--and the electric meter lies back there--so I need to keep it clear (though I rarely do, to be honest. Just another of those chores I rarely have the energy for; the list is endless.)

The front of the "cottage"--and the ornamental grass I
had to clear away (though just a little of it). The
rhododendron is right behind it.

At that point, I was pushing myself. I used the clippers to cut away some of the ornamental grass--admittedly not the best tool, but I was feeling weak and faint and sweat was pouring from my pores, so I managed with what I had. I pulled up about ten stalks of jewelweed, and no plant pulls out of the earth more easily than that. I clipped about five or six branches of the rhododendron.

And once again, I felt as if I were going to faint. I was soaking wet from head to toe.

Neither of these ventures into the yard should have winded me in the least. They wouldn't have winded anyone I know who is my age or even older. Especially, need I say again, because of the beautiful weather today.

I haven't felt well since, and now it's 1 in the morning and my head is killing me. I've landed exactly where I spend most of my awake time--flat on the couch.

Honestly, it's summer in general. Not just this day, but the cumulative effect of the hot weather on my body, which just can't take it.

So is this because of my as-yet-undiagnosed neurodegenerative disease? Or is it somehow connected to the Hepatitis C? Who the hell knows. My doctors don't care that much about figuring it out. I was released to yearly checkups by my cardiologist; he doesn't think there's much wrong with my heart despite a history of severe-to-malignant, medication-resistant hypertension with hyperaldosteronism and a series of abnormal cardiac tests (AND being told in 2008, upon admittance to intensive care from the emergency department and being told by the staff cardiologist that I'd probably had one or two heart attacks and was in heart failure--but that's a long story for another day).

I realize this episode is totally self-centered. I haven't reached out to my viewers (all one of you, ha) at all--very bad form. But I'm chronicling my health here because I'd rather bitch and complain to a computer than to my friends and family. They know when I'm not feeling well, but I don't want to bore them with every detail. So you, dear computer, are my confidant, and I thank you.

That being said, here are other resources on heat intolerance for viewers who would like to read further on this condition:

• Heat Sensitivity and Hot Temperatures. Brain & Spine Foundation. http://www.brainandspine.org.uk/heat-sensitivity-and-hot-temperatures

• "Sucking the Fun Out of Summer." The author has heat intolerance due to Chiari Malformation and POTS (I believe I have the latter, which is associated with autonomic dysfunction):  http://www.brainandspine.org.uk/sucking-the-fun-out-summer-my-experience-with-heat-intolerance

Episode 70: On Remaining Engaged and Focused, Or The Lament of Living with Severe Chronic Disease

Robert Pinsky, writing about Stevie Smith's poem "Thoughts on the Person from Porlock": But maybe we are also ridiculous for smiling at Smith's expressed longing for a Person from Porlock, while we fail to appreciate her genuine, heartfelt misery: misery of feeling the immense human desire for accomplishment, engulfed by our limitations. Under its charm, her poem grieves for the fleeting human capacity, for poetry, for recalling dreams and ideas, for work, for focus itself. 

Since giving up my job due to my smorgasbord of chronic illnesses--and receiving Social Security Disability Insurance benefits to keep me going, thank goodness--I have confronted the usual suspects that anyone who is forced to walk this road has or will encounter:  lack of sex drive (discussed in earlier episodes) is a major one, of course, but even more worrisome to me (if not to my Honey) is a greater lack of drive, period.

Until I saw a Linda Rondstadt interview in which she discusses the complete lack of motivation brought on by her Parkinson's Disease--she says she doesn't do much of anything anymore other than lie around and read books--I didn't realize this ponderous lack of motivation for just about everything was due to my neurodegenerative illness. I figured it had to do with fighting against depression--but until very recently I haven't felt at all depressed. The desire to do things, to make things, to make things happen, was still very much alive, but a correlating motivation was simply missing.

I actually saw this medically described in an article about being unable to get up from sleep in order to go to work or do anything else, which I suffered from in the last five years or so of my working life. I'll try to find that article again, but the essence was that it takes three components to motivate a person to get up from bed, or, I'll extrapolate, to move from one activity to another, which I also have terrible problems accomplishing.

The three components are desire, motivation, and (if I remember correctly) ability. All those days I lay in bed, sleeping through alarms and even prescribed stimulants, I had immense desire to go to work. I loved my work. I loved my coworkers. I loved my job. Oh, it had its stresses and its aggravations, as any job has, but the rewards of doing good work for a good organization with a good mission, and seeing results, and all those other wonderful aspects of having a good job meant the world to me. The last thing I wanted to do was show up late again--it was downright embarrassing. I wanted to get up and go to work, dammit!

So, desire was not the problem. I had plenty of desire. Ostensibly, I also had the ability. I could freely move my body (or so I thought). However, studies show that the degenerating brain may not work properly to make these things happen, so I would have to say my ability was impaired. That, I suppose, is what all those doctors' reports and my own statement showed the feds when they reviewed my application for benefits--but for a person who was always a "self-starter" and somewhat of an over-achiever, this is a bitter pill to swallow. That ability malfunction also, of course, affected the motivation function, the actual spirit that animates the body when it decides to move its legs from the mattress to the floor and stand up.

So weird. The whole thing is so weird. As an over-achiever, I never dreamed I'd come to a place in which I'd be unable to do whatever I set my mind to doing. But here I am. It's as if I've literally burned myself out, though it's my brain that's burning out, filling itself with little white matter lesions that are playing havoc with my life. And it's a real despair to realize that, even for those things I'm most passionate about, I may no longer have the capacity to carry out what needs to be done.

The latest "big" thing I want to do is to preserve a swath of woods in my town in which a colony of pink lady's slippers--North American native orchids--as well as many other native woodland wonders grow. I've already received the verbal support of the director of our local university's ethnobotany program, and I just got a letter from the small city where I live offering its support, along with its concerns. Those concerns were ones I had already assumed--I would need to get a group of citizens together who care about preserving our natural flora in order to raise money that we might need as a match for any grants we might get.

Pink lady's slipper (Cipripedium acuale)
Photo from UW-Madison, Department of Botany

As a successful grant writer, I know I can write the grant proposal. Or at least, I used to be able to write the grant proposal. And I spent years doing coalition-building and bringing projects to fruition in my job, so that part should be cake as well.

But I'm afraid. I'm afraid that all this desire will go nowhere. Somewhere along the line I'll let the ball go. I'll get started and then I'll disappoint people. I won't follow through.

In short, I've become a flake.

I can't commit to anything.

If I say I'm joining friends later, nine times out of ten I don't make it--I'll be asleep, or I'll be unable to motivate myself off the couch.

If I can't be counted on to carry through on that--the most pleasurable thing I know of other than spending time with my Honey and/or my kids--how can I be counted on to carry out anything else?

And so, I have to say, reading the lines by Robert Pinsky in the epigraph did make me feel better. This is a human flaw, not just a flaw of those of us with chronic disease. However, the flaw truly does become pathological, nearly insurmountable, with this brain I have. I fight it--I do. I start things with full intentions. But I disappoint myself again and again and again. It's kind of horrible.

I know I have to bull through this somehow, but I also have to be realistic. Perhaps I could find a champion for my lady's slipper cause who has the energy and ability to see the project successfully through, even if it is "my" baby.

But I do know that only I can muster the desire, motivation, and ability to write my books--my fairy book for young girls, my memoir, poems, fiction--and that's the greatest fear of all: that I will leave this world without having put those memories, those ideas, those dreams onto paper and maybe, just perhaps, being remembered for that.

And it's hard not to get depressed in the face of this fear, and this reality, which is the struggle I'm now going through. It helps to write about it, I guess. I found the Pinsky quotation quite by accident--by watching an old episode of Inspector Morse, in fact, in which he calls his sergeant "The person from Porlock." That led to an Internet search, and my reacquaintance with Coleridge's "Kubla Khan," and with Robert Pinsky's thoughts on the Smith poem.

Those are the happy episodes that keep me going. Like maybe there is a purpose to my life after all. And, no, I don't want to read A Purposeful Life or any of that. My metaphysical beliefs have atrophied along with my brain, I guess. I just want to be able to do, and to make, and to make things that matter. That's all.

Indeed, I lament "the fleeting human capacity, for poetry, for recalling dreams and ideas, for work, for focus itself."

For now, I have the rest of an Inspector Morse episode to watch--and this one, "Twilight of the Gods," has John Guilgud in it! There still are pleasures left in life!