Tag Archives: fatigue

Notes on Being a Fake

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There are three ways to be a Fake:

  1. Unintentional
  2. Egregious
  3. Internally painful

For the purpose of this discussion, we shall dispense with the first two types rather quickly, since it is the third type in which we are principally interested, this being my blog and me being, unfortunately, the third type. Your opinion may vary, in which case you are a second opinion and you may write your own Note on Being a Fake, which you may send to me at your own expense.

Additionally, our discussion will be limited to Fakery as it refers to recovery from a stroke and/or life with M.S. and/or other such life-challenging situations. Fakery outside of this narrow field of health issues will not be considered.

Additionally additionally, I am giving my Observer to these discussions a Fake Name. I had to think for a while to come up with a name not likely to occur in human beings, and finally settled on Nilla, as in ’Nilla Wafers.

The Unintentional Fake
The Unintentional Fake is often not a Fake at all, but appears to be one by being over-enthusiastic about gains in health recovery, such as a gain in ability to walk, or speak, or even recover consciousness. The enthusiasm can be on the part of a patient or a caregiver or a health professional (doctor, nurse, etc.). The enthusiasm is genuine; the over-enthusiasm curdles it.

The Egregious Fake
The Egregious Fake usually has absolutely nothing physically wrong with him or her but wants you to know all about it. His cold is much worse than yours. Her knee is too painful to help carry those boxes into the house. He’s worried about his terrible headache—he’s had it for days. She hasn’t slept for weeks. But wait! Who’s that strolling out of the bookstore carrying an armload of books? Why, it’s your weak-kneed friend! And she’s with her friend who has overcome his intolerance to lactose and is enjoying an ice cream cone! The Egregious Fake is worrisome to be around until you realize that he or she is in fact an Egregious Fake and not For Real.

The Internally Painful Fake
The Internally Painful Fake walks among people every day, and she sees the judgment in Nilla’s eyes. Nilla sees my cane, and her eyes say, “The cane? Are you still using that cane?” Yes, the stroke was nearly two years ago, but I also have M.S., and the combination makes me stagger, makes me weak. It is internally painful for me to admit this, but whenever I leave my house I use a cane. It wards off other people, gives me balance, reminds me to be careful.

The Internally Painful Fake talks with Nilla every day, and she sees the judgment in Nilla’s eyes. She hears my hesitation, and she rushes to fill in the word I cannot find in my aphasic moment. She is thinking, “It’s been almost two years. I thought she was over all of that stroke stuff.” It is internally painful for me to admit this, but when I am speaking there are times when my mind becomes completely void of words and I cannot complete a sentence.

The Internally Painful Fake parks in the disabled parking spot near Nilla very often, and she sees the judgment in Nilla’s eyes. I don’t limp enough for her satisfaction, or use a wheelchair, or have enough missing limbs, or whatever her personal definition of disabled might be. She huffs at me to let me know that she considers me an Egregious Fake (about which see above), about which I consider acting like an Unintentional Fake (about which see above) to prove her wrong, but instead I just wobble normally into the store. It is internally painful for me to admit this, but when I park in a disabled parking spot, I am glad that I will be able to find my car easily afterwards because those lights in the store scramble my brain if I stay longer than 10 minutes.

The Internally Painful Fake is an amalgam of half-started, half-finished, half-baked disabilities. Nothing is right, but nothing is wrong. Doctors examine me and say, “Hmm, that’s not good.” Friends look at me and say, “Hey, you look great!” Family members look at me and say, “Wow, you look wonderful!” It is internally painful for me to admit this, but I feel awful. The truth is there will be effects from the stroke present in me for years to come: how I look, how I feel, how I think, how I act, how I talk.

What’s right? Nothing. That is one truthful answer from the Internally Painful Fake. Another truthful answer would be: I can read again. I can write again. I can usually remember to scribble down notes when I think of something good. I can usually remember to scribble down notes when I remember something important.

What’s wrong? Nothing. That is one truthful answer from the Internally Painful Fake. Another truthful answer would be: my eyes, my ears, my shoulder, my brain, my mood.

What is really wrong, actually, is that the Internally Painful Fake hates being the Internally Painful Fake. I would much rather be the Egregious Fake and have everyone discover my deception so I could just stop it all and go back to riding my bicycle everywhere and playing softball like I used to and taking long walks on Monhegan Island off the coast of Maine.

Except now that I am verging on old and decrepit, I probably can’t play softball anyway, and the walks would probably require at least a walking stick, and the bicycle might even require fat tires. We probably need to add a fourth kind of Fake: the Old and Decrepit Fake.

Pretzels. Finally.

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Pretzels were invented by friars who baked them. They just as easily could have been invented by bakers who fried them.

Let that twist around in your mind for a while. It can be your first pretzel thought.

My pretzel thoughts aren’t limited to ones about doughy treats purchased from sidewalk vendors in New York City or giggling teenagers in any decent-sized suburban mall. Or any suburban-sized decent mall.

No, mine are twisted unlimited doughy blobs oozing from my cranial orifices as I attempt to puzzle my way through what were once simple daily chores of life or questions of being.

For instance, CF and I might be chugging down the highway on our way to visit her mother in the next town when she innocently asks me, “Do you think we should stop at the grocery store on our way home?”

Could there be a more innocent question? Could there be a simpler interchange between two people who have lived together for thirty years? Could there be an easier way for things to go wrong so easily, so quickly, so completely? Continue reading →

The view from shoe level

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When those nice little old ladies fall on T.V., they always show the devoted daughters plugging in the handy dandy tracking device that calls the ever-vigilant bright-eyed neatly-dressed attendant at some distant calling center who promptly promises to send help “right away” when dear old mom next tumbles to the ground, sending prunes or grape nuts scattering in all directions.

What they don’t show you are the hours of physical therapy the nice little old ladies need before they are allowed back in those accident-prone, handicapped-inaccessible kitchens, the ones with overhead cupboards, ancient faucets, outdated appliances, and lack of walking space.

Let me tell you, falling and not being able to get up is the least of the problem. It’s likely to be that last bit of rest you’re going to get for a long time.

Sooner or later, a neighbor or friend or partner or wife or husband or child will wander by and you will have to admit that you are not looking at the interesting mid-20th century variegated pattern in the handsome wall-to-wall carpeting of your hallway, that in fact they might as well haul you to your feet, that—ouch—your right arm isn’t quite what it should be and perhaps we’d better call the doctor.

And so begins the usual round of Dr. This and Dr. That and x-ray this and x-ray that. It all takes a couple of weeks and a bunch of hemming and hawing and gulping down horse pills and sleeping with heat patches glued to your arm and tossing and turning all night long and nearly dropping the half-gallon of milk because you forget that you are one-armed these days.

And of course I can’t drive because I use hand controls and that takes two to tango. And oh, have I mentioned that CF broke her OTHER hand and is in a cast for three weeks? We shan’t discuss the sad circumstances under which it happened except to say that I will describe my stupidest fall and then tell you that hers was even more stupid:

I was doing yard work a few years ago, walking down our driveway, pushing our 65-gallon plastic garden waste cart ahead of me. It looks just like a garbage cart, the kind the town gives you for your garbage. Fortunately it was empty, and the top was open. I was tired, always my excuse. I lost my footing and stumbled forward, and ended up flat on my stomach, with my head and shoulders inside the garden waste cart. As far as I know, no one saw me. It happened on my birthday. At least hers wasn’t on her birthday. But it was close!

My most recent fall did not happen out of sight of friends and neighbors; it happened in plain sight of CF and just out of sight of NF, who had, let’s say, “neglected” to hold the door open for me, causing me to stumble up the short flight of stairs tween garage and laundry room, crashing to the ground and somewhat crushing the semi-antique aluminum cake carrier I was no longer holding but instead flinging to the ground, although I did try to brace myself by pushing off the wall dead ahead of me which simply caused me to double-bounce on top of said carrier and ricochet off the pile of newspapers waiting to be recycled. There was a slight cushioning effect, the one and only time, I am sure, that Mitt Romney will ever be of benefit to me.

The x-rays showed damage that will require physical therapy, which did not surprise me. I have done this before, because I fall a lot, and I always damage the right shoulder, which amuses me. I am left-handed, and for many, many years, I was a fast-pitch softball catcher. I imagined that at the least I would have new knees by now, or a ruined left shoulder. But no, those joints are fine. It is the much less used right shoulder that is turning arthritic, has bone spurs, and is continually being crushed and mangled by my falls.

The doctors can’t tell without an MRI if I’ve actually “torn something” in the rotator cuff or not, but they shot it full of cortisone and now it’s off to P.T. twice a week, where, should I fall, I will be immediately whipped back to my feet by two or more extraordinarily athletic young people. I need to warn them that I get dizzy if I stand up too fast. These are the same people who coaxed CF’s first broken paw back into shape, therapy that involved, among other magic treatments, dipping her hand in hot wax, a treatment that sounds so spa-like that I purr with envy. I suspect the closest I will come to hot wax will be bumping into the air freshener candle in the bathroom.

However many times I may stumble in P.T., I am sadly certain that I will fall again in real life, that I will again damage this shoulder. What I think I really need is to go to Falling School. I need to learn to fall properly. They must teach that somewhere. There must be professional fallers. Someone to teach you to not stick out your arms so you wreck your shoulders, but to tuck in your arms and roll with the flow. Someone to teach you to do a floor routine, like those gymnasts in the Olympics. After all, when I was in grade school, they taught us to survive a nuclear bomb. Certainly they can teach me to survive a three foot drop to the floor now.

I’m not too old. I can still learn. And I’m pretty sure there’s enough newspaper in the garage to use for cushioning.

That Was The Week That Wasn’t

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The calendar tells me that last week happened, but I remember little of it. CF and I dragged ourselves home from California late Monday night and the next thing I knew, we were at a Friday barbeque with her co-workers (note the correct hyphenation). What happened?

Fatigue. Bone-stealing, mind-crushing, life-squashing fatigue.

But before I go any further, I must make it absolutely clear that although this fatigue is the worst part of all the M.S. and post-stroke garbage, it was worth it this time. And for once, CF agrees with me.

It was worth flying to southern California, sitting in the hot, unshaded bleachers of a ball field, cheering my lungs raw, watching my son get the BEST HIT (one of only three his team got) against a far superior team from Hawaii (it SAILED over 2nd base, dropped in neatly for a solid single). It was worth it to see his smile as he stood on first base grinning at himself about it. It was worth it to see him trot onto the field in the next game, against another superior team, to hear the announcer call his name as he modestly scooped up the warm-up balls. It was worth it to see him completely at ease with all of his friends, horsing around in the pool at the hotel, eager to explore the gaudiness of SoCal now that they were out of the tournament of 13-year-old Pony baseball teams.

And now that they were out of the tournament, CF and I could return home with clear consciences. She had to return to work (big deadline) and I had to return home (couldn’t continue without her help). Believe me, we wanted them to win, but we knew, no matter what, we wouldn’t be there to see it if they played past Sunday.

And then came Tuesday and Wednesday and Thursday and most of Friday, all of which passed without me knowing about them, with me not asleep so much as sprawled across the bed or the floor or some air conditioned horizontal surface relatively close to plumbing (both intake and outgoing) that CF could find and crack open my jaw on a regular basis and pour in a protein source every so often.

I know we drove up to Seattle to pick up NF from the airport on Thursday, but consciousness doesn’t really return until the barbeque on Friday, when we were entertained by a future Olympian named Tom-Tom, toddler son of a co-worker, who will win a medal of some sort in a sport TBA in 2032, as long as it involves kicking, catching, falling on your butt, and making adorable faces, especially if it uses a ball that comes up to your knees.

NF specialized in badminton at the barbeque, which is unfortunately not his sport, which I lament, since I used to be a pretty fair badminton player. Don’t laugh. Badminton is a very aggressive sport, and I have the friends to prove it, one a state champion in college, and she will happily stuff a shuttle down your throat. It’s the second-most popular sport in the world, and that pathetic little plastic thing you use in your backyard is made of ballistic cork and bristling feathers in the real world, and travels at 200 mph on the real courts and makes big, ugly bruises. Backyard badminton is to real badminton as t-ball is to major league baseball.

After the barbeque, I fell back onto the floor or the bed or the bathtub until Sunday morning, when we celebrated our nephew’s 19th birthday, something I very much wanted to do, since I care very much for him, and I think I managed to stay awake for all of the time I was there, but you would have to check with him. I know I haven’t even looked at the Sunday papers yet, normally my preferred form of worship, and it is going on Tuesday evening as I write this.

And it being Tuesday evening, it is over a week since we arrived home and I still want to do nothing but lie on a horizontal surface and close my eyes and will the world away. But I have too much to do, including a major assignment for the college from which I graduated, one that occurs thrice a year, one that I enjoy, although you will probably think I am a bit odd for doing so.

And it being Tuesday evening, it is over a week since I posted my last blog entry, and for that I apologize, but when one cannot move, one cannot write. In fact, one cannot even talk. One cannot even mumble. One can indicate one’s preference for protein source (yogurt vs. cheese, for instance), and one can indicate one’s preference for television source (MSNBC vs. PBS, for instance), with, perhaps, a wobbly wiggle of a finger before lapsing back into another period of fetterless narcolepsy.

One can indicate one’s appreciation for the care one’s partner administers, by casting a wan smile in the appropriate direction at what one hopes is the appropriate time, and one can indicate one’s joy at one’s son’s skill at baseball by casting a weak thumbs-up in the general direction of the blur of one son’s shadow when she hears his voice, and one can indicate one’s anticipation of tomorrow perhaps being the day when at last one can stand on her own two feet and walk about the out-of-doors and perhaps fetch the mail on her own and maybe drive to the store and buy a new basketball net for her son since the rain rotted away the old one (quel surprendre!).

Such is the world of M.S./post-stroke fatigue, which I normally do everything I can to avoid. I usually avoid the sun, and I usually don’t get overheated, and I usually don’t get overtired, and I usually don’t “do too much,” and I usually “take care of myself,” and I usually blah blah blah blah boring boring boring.

But sometimes you just have to say, “Who cares about my health? This is my child.”

I’m Going to California

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When I Come Back I’ll Be Tired

I’m going to California
When I come back, we’ll be married
What do you want me to bring you?
She answered:
A hat with a crooked crown,
A pair of high-heeled shoes…

Those are the opening lines to Kaleponi Hula by Bina Mossman, one of the great hula writers of the early 20th century, words which were forever imprinted into my memory by my junior high school gym teacher, Miss Karp, many years ago.

For reasons unknown to me and I am sure unknown to the dozens of other half-formed girls clad in white bloomers more befitting the 1930s, right down to the names we were forced to embroider over the breast pockets, we were required to learn this hula down to the last hand gesture in the confines of the basement gymnasium of Grover Cleveland Junior High School in Caldwell, N.J. To achieve the proper island spirit, we removed our regulation footwear and performed in our regulation athletic socks. The effect was dramatic, I am sure. I do not recall the Board of Education supplying grass skirts.

I do have a point, and I will get to it, but I intend to make you suffer through my story first.

Once we had sashayed through the hula for a few weeks, rather than moving on to basketball (which in those days was restricted to three dribbles before we were forced to pass the ball, and no crossing the center line—really!) we switched over to a unit on square dancing, all of which I have forgotten, except for one horrible day where we practiced a gigantic round of galloping around the gym with a partner, linked arm-in-arm in some sort of two-step pattern. I don’t recall who my partner was, but let’s call her Barbara, mostly because I had a very nice friend named Barbara who very well could be reading this, and why not bring a slight blush to her cheeks right now.

In this gymnasium there was some sort of semi-permanent metal contraption for doing chin-ups attached to the floor smack-dab at 90 degrees along one of the side walls, which they probably removed for the boys’ basketball games, but not for the silly girls’ gym classes, and we had to gallop/square dance around it at full speed in a long column. Miss Karp carefully blasted her whistle at us full throttle every time before we started to remind us about it, but once you got galloping and thumping, caution was thrown to the wind and I just plumb forgot about those guy wires holding up the contraption and cracked into it, spilling Barbara and me to the floor in a rather artless way, causing many full-throttled whistles and a large pile-up behind us. If the light is just right, I can still find the scar on my shin from the incident, and I believe I had “an excuse” from gym class for three days because of it.

Grover Cleveland Junior High School still stands in Caldwell, N.J., renamed today Grover Cleveland Middle School, its third name. It started out as Grover Cleveland High School, three-quarters of a mile from where the former president was born.

I’ve always been amused that I studied more about the hula than I did Grover Cleveland when I was in junior high, and that’s why I can recite those opening lines to Kaleponi Hula, while CF, who was born in Hawaii and graduated from high school in Hawaii, has never heard of it. (In her defense, she didn’t live there very much in between those two events.)

But the words came crashing back to me—and congratulations, you’ve read far enough to reach my point—because I’m going to California, and when I come back, I’ll be tired. (I’m already married.)

My whole family is going to California because (cue trumpets) (gee, we had snare drum and cymbals not too long ago. what’s going on?) (anyway, cue trumpets) NF’s baseball team WON THE STATE CHAMPIONSHIP!!!! Yes, they are the BEST 13-year-old Pony baseball team in Washington state! The way Pony Baseball works is you compete locally, then at district, regional, zone, and national levels. So his team has worked its way through local, district, and regional (undefeated!) levels, Washington being its own region. Thirteen western states make up the western zone, based in California. So it’s off to California for the Western Zone Championship starting July 21, with Washington vs. Hawaii, of all states, in Game #1 at 9 AM.

Pony BaseballHe is very excited, as you might imagine, because not only does he get to play baseball in a very cool way, he gets to go to California with a dozen of his best friends AND stay in a hotel WITH a pool AND get room service AND ignore his parents AND spend all of his money AND go to a major league ball game AND go to Disneyland where he knows his parents will never take him AND buy crappy food from vending machines AND tell the chaperones that we allow him to drink all the caffeine soda he wants AND generally have a great time. Without us. As he should.

CF and I, on the other hand, will find the cheapest flights we can, the cheapest hotel we can, the cheapest meals we can. Not from vending machines. We want NF to know that we are in the stands cheering for him, but we are spending all the dollars on him, not on us.

And that’s just fine. No matter how fancy or plain the hotel, no matter how quick or slow the trip, no matter how long we linger here or there, when we come back, I’ll be tired. Fact o’ life. Anytime I step out of my usual routine, I end up tired beyond belief.

I know I’ve written about this before, and you are probably, well, tired of hearing about it. But you are going to have to read another version of metaphors. Or you can quit here.

Here goes: Your plane leaves in 10 minutes. You’re at the bottom of a long, crowded escalator with a heavy suitcase, wearing a winter coat. It’s a “down” escalator. You need to go “up.” There’s no “up” escalator in sight. No staircase, no elevator, either. You have no choice except to plow into the people on the “down” escalator and fight your way to the top. Did I mention the pulsing lights and the Caroline Karp/Bina Mossman arrangement of Hawaiian favorite melodies playing on the loudspeaker system?

This is what the fatigue is like. It is without a doubt the worst part of this whole stroke/M.S. afterlife. But if you get to watch your son win a state championship, it’s worth it.

And this has been one long blog entry mostly about nothing to do with strokes or M.S. or anything but my old gym experiences and NF’s baseball experiences but we’ll get back to normalcy next week or thereabouts and I thank you for your indulgence this week. As you might imagine it has been a bit fuddling around here, what with winning a state championship and Peggy going home and everything.

P.S. Any of my junior high classmates are encouraged to join me in dancing the hula at 9 A.M. Pacific time to urge on NF’s team. He will be properly mortified.

Grover Cleveland Junior High School

Grover Cleveland Junior High School