The Big Trip: Hitting bottom and rebounding…artfully ~

Mini splash park, Pearl Street mall, Boulder, Colorado

Mini splash park, Pearl Street mall, Boulder, Colorado

Rag-dog street performer, Pearl St Mall, Boulder, Colorado

Rag-dog street performer, Pearl St Mall, Boulder, Colorado

Painted piano, Fort Collins, Colorado

Painted piano, Fort Collins, Colorado

Alley mural, Old Town, Fort Collins, Colorado

Alley mural, Old Town, Fort Collins, Colorado

CSU trial gardens, Fort Collins, Colorado

CSU trial gardens, Fort Collins, Colorado

Detail, painted electrical box, Old Town, Fort Collins, Colorado

Detail, painted electrical box, Old Town, Fort Collins, Colorado

Days 7-11:  Boulder, Loveland, Fort Collins.

After my day recuperating in Fort Morgan, I headed toward Fort Collins but found that I would get there by mid-morning on a Sunday. So I detoured down to Boulder first, where I spent far too much time and money at the Pearl Street mall. It was a recapitulation of sorts: I went to exactly the same shops as when David and I were there, and I got a veggie panini at the same place we’d eaten. I was disappointed to see that the contortionist who folded himself into various containers, such as a little, clear plastic box, was no longer among the street performers. I wanted to donate to all of the performers, but my cash is dwindling alarmingly fast. I didn’t stay to watch the torch-juggler act, and I didn’t tip the guitarists or the accordion player, and I arrived too late to see a very popular act involving a performer balancing atop a tower of chairs, and I walked past an older gentleman in cowboy garb painted to look like a copper statue, and I skirted the guy in an African-type mask who was playing the bongo drums, and I felt terrible that I wasn’t leaving money for any of them, but there were just so many.

Eventually I sat down near one of the street performers to drink a lemonade and rest my aching feet. This particular guy—I believe it was a guy, though his act was mute—was impersonating a sort of ragdoll dog. His costume was made of tiers of short, pastel-colored pieces of fabric, so he could shake like a puli. He sat like a dog and looked hopefully at passersby. He’d try to attract children by getting up on all fours, or rolling on the ground. A couple of women with a little boy were taking pictures of him, but not leaving any money. That isn’t nice, I thought. I approached the performer and, looking over at the little boy, said, “I think this dog wants a belly rub, don’t you?” The “dog” promptly rolled onto his back. I reached down and rubbed his belly and he made some appreciative doggie-like grunts. “And maybe some scratching around this ear,” I said, still looking at the little group. I scratched one of his “ears” and he pumped one of his legs the way dogs often do when you’ve hit the right spot and they’re just loving it. “See?” I said. “I made him kick his leg.”

I dropped a couple of bucks into the performer’s bowl and then realized that a number of people had stopped to watch this joint act. In one last attempt to get this endearing performer some tips, I put out my hand, and said, “Shake?” He lifted an enormous foot so I could touch the bottom of it. It was more like a fist bump. Still no action from anyone in the crowd. It was a hot day and the street performer must have been terribly uncomfortable underneath his shaggy costume. I felt like whispering to him, “Well, I tried,” but I wasn’t sure if he could hear a whisper inside the doggie head he was wearing, so I just walked away. Ineffectual! Alas.

On the plus side, I was thrilled to see that the problems I’d had with the altitude in 2012 were gone. Three years ago, I’d walk a few feet, then have to rest. Walk a few more feet, then have to rest. Sit down repeatedly. Lean on David’s arm. This time around, I could walk without resting. The iron infusions clearly get credited for this improvement. I sat down only because my feet and legs began to ache almost unbearably. I haven’t built up my endurance very much yet, and they’re not used to this much walking. Added to that stress was driving much of the day without cruise control (I was on a variety of roads, from city streets to the interstate, and the traffic was very heavy everywhere).

In Fort Collins, I was forced to take yet another rest day on Monday. This time I didn’t even leave the motel. I am frightened of my debilitation and I am ashamed of being frightened. I know why I’m here and at the same time I feel I’ve lost sight of why I’m here. I’m reading a book where a man is being “reprocessed,” via amnesia-inducing injections, over and over; we don’t yet know why. Now he has been reprocessed to the point where he has no ambition or autonomy beyond his basic daily functioning, and he will be left to live the rest of his life in the “reprocessing village” (one of many) because he is considered cured. I.e., he no longer poses a threat. To what or whom, we don’t yet know. (To himself, it turns out; the book is called “A Cure for Suicide,” and the cure involves losing all the complexities and nuances and worries of life. I can divulge this because no one ever reads books that I recommend.)

Probably I should not be reading this book right now. It is beginning to affect me strongly. I think that I am like this man, not living a meaningful life. I worry that I’m breaking down, and that would constitute a great failure in my eyes. My sister suggested something I’d already thought of, that I could fly back home and that there are people who will drive your car back for you. But how do you know whom to trust? I would start driving back tonight; since I’ve slept all day I’m confident I could drive all night if it weren’t for the fact that my legs are swollen and hurt very much.

———–

After this, I didn’t do any more writing during the trip, so I’ll sum things up briefly. On Tuesday I felt well enough to continue. I toured three independent-living facilities for my sister, two in Loveland and one in Fort Collins. Then, during a phone conversation with her that evening, I discovered that she didn’t want to live in the Fort Collins/Loveland area, she only wanted to live in Denver, and not in an independent-living facility. This would have been nice to know before I left Carbondale. I was completely open with her about my ideas and my agenda, so I was simultaneously vexed and confused. The trip now seems to have been misguided and misfocused. I considered heading to Denver for the next three days, then realized that Denver would involve a lot of upfront Internet research in order to focus a search. In addition, everyone I’ve talked to has told me that Denver is much more expensive than Fort Collins. Finally, I realized that my energy and navigational savvy simply didn’t extend to a big metro area like Denver on this particular road trip. So I decided to treat the rest of the journey as a vacation.

On Wednesday I met up with my friend David M., dedicated Marlovian and self-described “world’s oldest white rapper.” We stopped by Colorado State University’s trial gardens, where new varieties of garden flowers are being tested, on the way to the big Campbell’s soup can replica that CSU art students constructed to Andy Warhol’s specs and that he signed on a trip to Fort Collins. Dave kept mentioning some black-and-white photos in a gallery that he wanted me to see. Turns out that the gallery was the Center for Fine Art Photography, one of the very places I’d hoped to visit in Fort Collins. Although we arrived just at closing time, one of the curators kindly gave us a personal tour. Then it was on to an Italian restaurant and a quick drive west of the city and up a steep, winding ridge to Horsetooth Reservoir in an attempt to catch the sunset. We were a little late, but the view was beautiful nonetheless.

The arts scene seems to be thriving in Fort Collins and also in Loveland, just to the south. Public sculpture abounds in both cities. Both have taken to painting those big electrical boxes you see all over the place in fanciful, colorful designs, turning them from eyesores into attractions. Fort Collins also paints old pianos with whimsical scenes and leaves them in public places—even alleyways–for anyone to play. In one of the photos above, Dave is trying to talk me into playing the piano so he can get a video of it. So great is my performance anxiety that when I finally sat down, I began “House of the Rising Sun” in the wrong key and never did get straightened out. (Dave, I hope you’ve deleted that video.)

On Thursday I broke my new “vacation-only” rule in order to tour one more facility in Fort Collins, in the interest of doing a reasonably thorough job of what I’d come more than a thousand miles to do, and then toured an apartment complex just across the street. Afterwards, I headed for Estes Park, where I’ll pick this up in the next installment. The writing will get shorter from now on; I promise. We’re on the home stretch.

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Rosemary ~

I find it enraging that although Facebook allows gruesome photos (many of them fabricated or misleading) of aborted fetuses, it recently banned photos of a baby born with a fatal birth defect called anencephaly, in which critical parts of the brain are missing. When the mother reposted the photos, she herself was temporarily banned from Facebook. This video about that baby made me cry, and—yes, it’s a cliché—my heart goes out to this family.

When people ask, I always tell them I have one sibling—one sister. That’s true. But there can be alternative, equally valid truths, depending on how you look at things. This blog post honors my and Carolyn’s other sister, Rosemary, who was born prematurely on April 18, 1960, with anencephaly. She lived about an hour. I was a toddler, 20 months old, and an only child until that day—and then again afterward.

With anencephaly, parts of the brain never develop due to a neural tube defect. In most such cases, part of the skull is also missing and/or the baby’s head is deformed. In the early 1900s such babies were sometimes referred to as “anencephalic monsters.” To my knowledge my mother never saw the baby, although my father did. One of my aunts recalled him saying that the baby looked perfectly normal. Another recalled him talking about defects. Memory is a tricky thing. But the death certificate, which I found online, clearly says anencephaly. Such babies are usually born prematurely due to an excessive buildup of amniotic fluid, which was also noted on the death certificate.

It was a very different time in 1960. My parents, unlike the couple in the video, had no advance warning their baby would die. No photographs were taken. Rosemary didn’t get any kind of memorial tribute such as the video I’ve linked to. My parents, I’m sure, received no grief counseling at the hospital or anywhere else. Relatives have told me that my mother was advised to get pregnant again as soon as possible, and so she did. Carolyn was born a little more than a year later.

I never would have known of Rosemary’s existence had I not asked my father a nosy question when I was in college. My parents never spoke of her. None of the relatives who knew about the pregnancy ever slipped up and let the secret out. I’d like to ask many more questions now, but my parents died years ago. When we cleaned out their house, we found not one bit of evidence, not one scrap of paper, referring to Rosemary. I can’t imagine how badly my parents must have been hurting at the time.

Thanks to one of my uncles, I learned that Bellefontaine Cemetery in St. Louis allowed Rosemary to be buried in a corner of my grandmother’s plot. I’m not sure anyone accompanied my father to the burial; I believe my uncle told me he went alone. There was no service. There is no marker. Cemetery policy might not have allowed one, given the unusual burial arrangement. My parents probably could not have afforded one anyway. Besides, they’d been told by the doctor to move on, not dwell on what happened—to bury Rosemary not just literally, but figuratively as well. That’s my interpretation, anyway.

I’ve decided to check about cemetery policy. It’s ironic, perhaps. Neither my sister nor I, both having decided on cremation, will have a marker when we die. But Rosemary didn’t have a life. Both the least and the most she can have is a symbol of remembrance.

Bursting bubbles ~

It does seem to be true, at least in my case, that pride goeth before a fall, although one could predict that due to probability alone. For the past two days I’ve been congratulating myself on learning a new skill: giving subcutaneous injections. Last Friday a nurse came to my sister’s house to give her the first of five injections of an insanely expensive drug that may reduce inflammation, thereby increasing her mobility. (Heartfelt thanks to the Chronic Disease Fund, which paid the $2,000 for 5 milliliters of this medication.)

The remaining four injections would be my responsibility to do, so the nurse walked me through all the steps, which were more numerous than I’d anticipated. Warm the refrigerated vial between your palms for three minutes. Disinfect the rubber top of the vial with an alcohol wipe. Attach an 18-gauge needle to the syringe. (The smaller the number, the bigger the needle, I learned—just like camera apertures.)

Draw back the plunger to the 1 milliliter mark to fill the syringe with air. Twist the protective cap off of the needle. Push the syringe into the vial. Push the plunger to force out the air. Upend the vial and, making sure the tip of the needle is submerged within the liquid, draw back the plunger to the 1 mL mark. (Yes, this is a long and boring explanation, but it’s necessary to the point of the post. Pun intended.)

Then comes the tough part: checking for bubbles. Tiny bubbles are okay, but anything bigger should be dealt with by flicking your finger against the syringe repeatedly until the bubble slides toward the business end of the syringe. Push the plunger a bit to ease the bubble up through the needle. Draw the plunger back down to 1mL and repeat. This process turned out to be both tricky and tedious: there is an area at the end of the syringe where there’s some plastic threading, and it always looks empty, as if there’s a bubble there. Often, though, it’s just an optical illusion.

When you’re satisfied that no substantial bubbles remain, remove the needle from the vial. Put the protective cap back on the needle and twist it off the syringe. Replace it with a smaller gauge needle and take off its protective cap. (These seem to resist removal.) Make sure a tiny droplet of medicine shows at the end of the needle, supposedly indicating there’s no air in the syringe.

Then swab your victim’s thigh (in this case) with an alcohol wipe, pinch a goodly bit of her flesh between thumb and forefinger, and make the stick. The needle should go almost all the way in, but not quite. Turn loose of her flesh and pull the plunger back slightly to make sure no blood enters the syringe, which would indicate that you’ve hit a vein. If everything looks good, inject the liquid, remove the syringe, and slap on a bit of gauze.

Simple, right? The nurse allowed me to do everything except the one thing she could not, because of some financial rule or other, allow me to do: make the stick. Naturally, this was the part of the procedure that scared me the most. As I poised the needle above C.’s thigh on Saturday, I hoped fervently that I would not spear her and produce a bloody mess. I steeled myself to hear howling, and I made the stick. No sound from C. The needle might have gone all the way in, which was wrong, but it turned out beautifully.

I injected the medication, pulled out the needle, and marveled that at first I couldn’t even see where the injection had been. A dot of blood much smaller than a pinhead soon showed itself. No bigger than the nurse’s had been! I did an abbreviated victory dance while C. pressed gauze on the spot, and then a completely unnecessary Band-aid went on. Woohoo!

Things went equally well on Sunday—except that I remembered just after I gave C. the injection that I’d forgotten to pull back the plunger to check for blood. But chance saved me: there was again just a teensy dot showing where the needle had gone in. I was pretty good at this, hey? I could be a sub-Q shot giver, were there such a job. What competence!

Then today rolled around. I drew the medication into the syringe and there appeared to be no major bubbles. This seemed suspiciously lucky, so I flicked my finger against the syringe a few times and tried to determine if a bubble was lurking at the hard-to-see end. After some fiddling around with the plunger, I finally decided that there wasn’t. I switched needles. In the process of struggling to remove the thinner needle’s protective cap, however, I realized that I didn’t have 1mL in the syringe. I had closer to 0.9 mL. The nurse had specifically told me this was NOT okay.

Crap! What to do? With considerable misgivings I decided to switch the needles again and draw more medicine out of the vial. I was pretty sure the nurse would have told me not to do this, but I couldn’t think of an alternative. I also didn’t see how anything would be contaminated, since the first needle had gone back into its protective cap. After making certain I had 1mL, I checked for bubbles again. Flicked again. Switched the needles again and ascertained that a droplet of medicine clung to the tip.

I remembered this time, after making the stick, to check for blood. There wasn’t any. To my consternation, however, when I drew the plunger back slightly, a large, sinister-looking bubble appeared at the needle end and slowly made its way up the syringe.

OH CRAP. OH CRAP.

I had quizzed the nurse extensively about this entire bubble subject, because it worried me so much. “What if I miss a big bubble and inject it into her?” I asked. “Am I going to kill her?”

Undoubtedly the nurse was laughing on the inside, but she kept a straight face. “No,” she said, “but the shot will be more painful. It’s if you have an air bubble inside a vein. Now that’ll get you.”

Frozen in place with the needle in C.’s thigh, I reasoned that since there had been no blood, I could not have hit a vein. I warned C. that this shot might hurt—the others hadn’t—and I pushed down on the plunger. There was a bigger spot of blood this time when I removed the needle, but no spurting—in fact, no Carrie-type scene of any kind. C. hadn’t made a sound.

“Did that hurt?” I asked her anxiously.

“Not really,” she said.

“I don’t think I killed you,” I said with relief.

“Oh well,” she replied. I almost expected her to add, “Nobody’s perfect.”

One more injection to go. Then I should be done with wielding needles for awhile. Maybe forever, if I’m lucky. And if anybody asks me about the experience, I’ll say modestly, “I did reasonably well. We both lived.”

Addendum: After the final injection, I had to revise this post because I still had a step wrong. Perhaps this is why I never taught Technical Writing.

My sister’s feet ~

Carolyn's feet

They are hardly ever still, my sister’s feet. But they don’t let her dance. They don’t even take her places. She is at their mercy. In their pain and urge to move, they flex, twist, and contort, seldom able to rest even a few seconds. So, too, her legs move and thrash, wrapping her up in the bed linens like a winding sheet. The medication she takes for restless leg syndrome has not been helping much.

A severe multiple sclerosis flareup two months ago has left her legs more painful and uncontrollable than ever. Because that flareup also impaired her ability to walk, my sister has been living in the hospital, then on my couch, then in a nursing home, and then back on my couch again.

She is enduring a crippling case of the uncertainty blues. Physical therapists are trying to strengthen and retrain her leg muscles so that she might be able to walk unassisted again and return to her home. She can make it from the couch to the bathroom by using a walker. We are working to get her on a newly approved MS drug. Theoretically, it should reduce the number of brain lesions she’ll suffer in the future—lesions that impair her nervous system’s ability to send and receive the signals that support walking and other body functions. MS has already taken away much of her vision. We don’t want it to take anything more.

Two sisters. I’m the older, and when I look at her feet, her curled toes remind me of the little girl she once was. She may never dance again. She may or may not return to walking unassisted. But we are hoping. Baby steps.