A Shoulder To Cry On

Loyal readers are no doubt sputtering at that headline, wondering how on earth I am going to segue from “A Shoulder To Cry On” into a discussion on pretzel-thoughts, which I promised last time I would discuss this time.

Well, I’m not going to. You’re going to have to wait a week for that scintillating discussion, maybe even longer.

Depends on how good the anesthesia is.

See, on Tuesday, Nov. 20, the bone doc, Doc Z., is going to pin my tendon back on to my rotator cuff so I can use my right arm again without rattling the roof rafters with my screaming. And that little bit of surgery is all that’s on my mind right now.

“Pin” is not the correct medical term, of course. I believe he will actually sew it back on, a technique I never quite mastered, despite two terms of home economics classes in seventh and eighth grades at Grover Cleveland Junior High School, the same school where I was taught to dance the hula and square dance.

Along with Vicky L. and Kathy R., I was quickly identified as a H.E.H. (home economics hopeless) and forced to sit in the kitchenette closest to the teacher, where we scorched the toast, burnt the broiled grapefruit, spilled the tea, and generally lived up to our potential.

When it came time to switch over to the sewing half of the course, we were faced with the task of making a wrap-around skirt. I chose a trendy denim fabric, and stared at it helplessly for several class sessions, measuring out my pattern pieces again and again. Even Vicky L. was ahead of me. I never did sew the buttonhole; I just punched it through with the scissors and let it go at that.

It was worse in eighth grade, where the normally shy and sedate Sandy B. led the rebellion to make an A-line skirt and weskit (very trendy) rather than the normal jumper (very fifties), leaving all us H.E.H. in a panic. I didn’t even try. I gave my fabric to my first-cousin-once-removed, who gave it back all sewn up. I didn’t care. I managed to hold my head up high when forced to trot across the stage in the mandatory home economics fashion show. I wore the hated stockings but refused the makeup. I have my limits.

So I can’t blame M.S. or the stroke for my inability to sew, sad to say. But I can blame both for the shoulder surgery. Without M.S., I never would have been taking BrainScar, the drug we all (tacitly or not) blame for the stroke I had in August 2011. And it was either M.S. or the stroke that caused me to stumble and fall up the stairs that night in September that tore apart my rotator cuff.

Rotator cuffs can fall apart all on their own, because they are used for so much. They lie deep inside your shoulders, underneath all the muscles and bones and tendons. They’re kind of like Grand Central Station for your arms. Move your thumb? Gotta go through the rotator cuff.

One of the last things I did this week was have a tooth fixed. I found out that my dental hygienist is recovering from rotator cuff surgery, caused by years and years of cleaning people’s teeth. Poor Laurie!

It takes months to recover, lots of physical therapy, with and without physical therapists. Fortunately I already have found some good P.T.’s. I was working with them on this shoulder until we decided that the pain wasn’t getting any better and an MRI was needed to see if the rotator cuff was in fact torn.

Answer: Yep.

So a week after the surgery (just long enough for all the anesthesia to have worn off), I’ll return to the physical therapists to start the recovery process.

I’ve been trying to picture what sort of bandaging they’ll wrap me in after this surgery. The doctor was a bit vague about what sort of incision he was going to do: arthroscopic, he said, but then opening it up a bit, waving his fingers around in the air as if that explained it all, assuring me that he would also remove the arthritic matter that was in there. Seventy minutes, tops.

So I figure either a little Band-Aid, like you can get at the supermarket, or a two-by-four strapped across my shoulders with a roll of duct tape. I’ll have to go through doors sideways and carry a beeper for when I back up.

In either event, it won’t be me rattling the rafters anymore. And for that I am very happy.

Caught by my own simile

I’ve found that there are two kinds of neurologists: good ones and ones who see you as a bundle of nerve fibers.

I went through several of that type when we first moved to Olywa. The trick is to have no fear about leaving them. They don’t care what you think about them. You’re just a bundle of nerve fibers. Move on.

The best way to find a good neurologist, I have found, is to ask your local M.S. society about who is on their advisory board. That’s how I found my neurologists in Massachusetts and in Maine, but not here in Washington. Here, I went with my backup plan: stab around in the phone book until you give up and ask friends.

My neurologist is at Swedish Medical Center Neuroscience Institute, and I adore her. She appreciates the idiocy of M.S. as well as its seriousness. She is very clear in her discussion of symptoms and treatments, and has been my primary medical caregiver as I recover from The Blitz.

My most recent appointment was to discuss the results from a repeat M.R.I. I had in early March to see if there had been any further changes since the M.R.I. I had when my mom and sister were here, and to decide if I should try any other disease modifying treatment, since BrainScar hadn’t worked out so well for me.

She’s been careful not to blame BrainScar for The Blitz, however. She’s made a joke out of it: she doesn’t want to have to do the extra paperwork that would involve (although I know she’s actually done it). But every time I’ve seen her since The Blitz, she has come closer and closer to saying it. And this time she actually really practically came close to genuinely nearly saying it.

“She’s had a hard time with BrainScar,” she said, introducing a new doctor to my partner and me. Let me tell you, CF and I practically danced in our chairs when the two of them stepped out for a minute.

But after my doctor returned, the visit got harder. That’s when I broke down in tears. I don’t usually do that, because doctors don’t really like it. For one thing, my nose tends to run, and that just makes another symptom they have to deal with, as well as paperwork, about which see above, although the tissues in this case were handy.

And in this case it wasn’t clear at first if the tears were sad tears or happy tears because sometimes whether or not you have a brain trauma emotions get all scrambled in your brain and come out sideways from your head and no one can tell what in fact you are trying to say or do, and what you need is a sign or something you can show of a smiling face or a frowning face depending on what your tears mean.

I can tell I’ve gotten off-track here.

I cried because I didn’t know how to ask my neurologist if she thought I would ever get back to experiencing the world with the vibrancy I once did, if I would ever get back to thinking the way I once did. Would my mind ever again be full of a hundred different thoughts on a hundred different subjects? Would my imagination ever again take me to places I couldn’t find on any map, to worlds that existed decades before I was born, to ones that lived only in books? Would my head ever again be full of thoughts spilling over each other, like a roomful of filing cabinets on spring vacation, like a lake in springtime being filled by dozens of overflowing streams and rivers?

How could I explain this to her? How could I explain how slowly my brain worked now, how agonizing every thought was, how slowly each thought takes to form, how it takes me all week just to write one blog entry, how carrying on a conversation exhausts me, how trying to sound intelligent sometimes wasn’t worth the effort?

Then I spotted the bulletin board in the examination room.

“Like this,” I sputtered in my half-croak, pointing to a full-color brochure. “It used to be like this.” The brochure was golden yellow, red, blue, green, lively, lovely.

“But now,” I said, as I moved my hand to a poorly photocopied black-and-white flyer with a rainbow on it, “it’s like this.” The rainbow’s colors were drab grays.

And that’s when the best part of the visit came. Even though I was crying full-force now, I realized I was caught by my own simile. My brain had just worked. I had just constructed a rather tidy way to demonstrate to my doctor how things used to be, and how they were now. And she understood.

“I know, I know,” she said. “It will get better. You’ve been to hell in a hand basket.” And she hugged me.

Now that’s what I call a good neurologist.


Road trips

We really didn’t plan it, but my sister and I managed to give our mother a rather rollicking September this past year. She is a robust 85+, and still manages to ride the waves at the New Jersey shore each summer. Don’t laugh. Those pounders can fill your swimsuit with more sand than you can believe if you don’t know what you’re doing.

First, my sister’s oldest, Jen, the non-luger, set her wedding date for Labor Day weekend. This was the first grandchild wedding, a very big deal for my mom, of course. It was a big deal for me, too, my oldest niece, but I was having a hard time making plans to travel there. It would be a long and exhausting trip that would take me days to recover from, because of M.S. My sister suggested flying in a week early, so I could recover, but I didn’t think I could take that much time off from work. I was in a dither about it all. This, remember, is all before The Blitz (the stroke).

Little did I know that my inability to make plans, my annoyance with everyone pestering me to make decisions, my frustration with the necessity to do something was because of this new medication, this stuff I have come to call BrainScar, this stuff that would cause the stroke in a few days.

Wasn’t that great timing? I never had to make that decision about going to the wedding! I was in a coma! Jen’s wedding was planned for the “camp” her stepdad runs every summer in the Adirondacks, which meant I didn’t have to fly cross-country after all. I mean, if you’re going to have a stroke, at least plan it so you can save on airfare.

But the tricky thing was my partner, CF, now needed to tell my sister, Cindy, that we wouldn’t be at the wedding. Seemed polite to let them know. After all, we’d known Jen all her life. But CF knew my mother would drop everything and come racing out to Washington, at the expense of missing the wedding. And she knew I would be not like that (assuming, of course, that I recovered, which, at that time, was uncertain).

Actually, no one knew at this point that I had had a stroke. All they knew was that I had had some seizures. That’s what CF told Cindy. And Cindy downplayed the whole thing with our mother. And, as I understand things, the wedding went well. The pictures sure are nice.

The wedding couple on the dock after the ceremony

The wedding couple on the dock after the ceremony

So that’s how Cindy gave our mom a rollicking September. My part in the rollick (which I just learned is a blend of romp and frolic) came later in the month when Cindy and Mom made the cross-country trip to Olywa for a bit of hands-on healing.

I had escaped from Rehab by now, was free from Fox News All. The. Time., tilting around the house with that good ole’ tennis-balled walker, stammering and stuttering, still eating mostly cottage cheese and mandarin oranges, trying to figure out what had happened to me.

The big activity planned for their visit was a trip to the hospital for an M.R.I. My neurologist had been muttering dark things about me having had a stroke in addition to the seizures, but until now nothing had been confirmed. Where the idea of a stroke came from I do not know, but it was out there, and we were going to look into my brain for confirmation.

It would take an hour to drive to the hospital for the M.R.I., which reminded me of the trips we used to make to the orthodontist when we were kids. My sister and I would ride with our mom to the orthodontist so my sister could get her teeth fixed. I just needed a retainer, but she needed the whole mouthful. My mom drove a 1961 black Volkswagen beetle, on which little worked. The heat was permanently on, and burned our ankles; the speedometer needle one day spun around in viciously fast circles until it flung itself off its spindle and collapsed; and the turn signals beat double, triple, or no time, depending on unknown factors. The car had a real, big, yank-it-back sun roof and German inscriptions. Mom hated that the dashboard said FAHRT instead of START. Cindy hated that we opened the sun roof and sang “O Holy Night” at the tops of our lungs, no matter the season, on our way home. I hated my retainer.

My sister’s shiny rental car FAHRTed fine, no sunroof, no singing, no singeing (of burned ankles), and I believe they were properly impressed by our side trip to Snoqualmie Falls.

The hardest part of a day like this is that I have two different kinds of expert medical advice with me, neither of which can give me a speck of information about what’s going on. The first is the knowledge of the M.R.I. technician, who stares at the inside of my brain for a good 45 minutes or so, but will he tell me whether or not I had a stroke? No, of course not, don’t even ask, because the radiologist has to interpret the film, don’t cha know, and that will take days.

And the other kind of expert medical advice is my mother, who has given me advice all of my life, like mothers everywhere: “Wash that better so it doesn’t get infected.” “Drink all of this tea and you’ll be fine by morning.” “Because I said so.” But she can’t give me a speck of information on this, you see, because they don’t give mothers any information on what to do if their daughters come down with incurable diseases such as M.S. and then have strokes caused by “disease modifying medications” such as BrainScar that are supposed to help them with it. There is no helpful little booklet called How To Help Your Child After A Stroke Caused By BrainScarTM. In fact, there is no information anywhere on how to help anyone who has had a stroke caused by BrainScar.

For the first time in years, I cannot look my mother in the face. Her eyes hurt me, because I know she is looking at me and for the first time not seeing me as her 2-year-old toddler, as her 10-year-old swimming champ, or as her 21-year-old college wunderkind, but as a 60-year-old stroke victim. I know that suddenly all of those illusions are broken for both of us. We are suddenly who we are.

Mom at wedding

Mom at wedding

Rip Van Winkle

Anything I tell you here I know only because CF (my partner) has told it to me repeated times after I got home. Repeatedly repeated times. I can’t remember or believe it. In fact, those days in the hospital are still Rip Van Winkle-ish. Except no beard.

Things didn’t go that well at the hospital, at least for the first 13 days. Those were the days I spent in intensive care, with a tube jammed down my throat breathing for me, with a Medusa-spider costume adorning the rest of my body.

The doctors tried three times over those 13 days to take that tube out, since a major goal of theirs was for me to breathe on my own. But every time they pulled it out, Medusa shrieked and the spider crawled up the water spout.

Puzzlement ensued. I had had seizures, you see, and, as I understand it, you seize and then it’s over. Intense, then done. If this was Gray’s Anatomy, Callie and Arizona would be poking each other and saying that I was kinda cute now that the spider suit was coming off, and I would be smiling back at them.

I wasn’t seizing anymore, but I was developing nasty infections and they weren’t “responding,” as good infections do. And they were shutting down my kidneys, which is a major faux pas if you’re trying to get out of intensive care, as I unconsciously was.

CF kept telling everyone about how I hadn’t been “myself” lately. In fact, she’d been so concerned that she had convinced me to make an appointment with my neurologist for an MRI, which was scheduled for a few days from now. I had started recently on a new disease-modifying therapy (as they’re called) for MS, and CF was convinced the drug was affecting me negatively.

This new drug—let’s call it BrainScar—was known to lower resistance to infection. That’s why I was falling victim to all sorts of weird stuff floating around the hospital and why the doctors had to keep giving me more and more antibiotics.

Fortunately they were also giving me pain killers and some drug that paralyzed me, because I really hated that tube and kept trying to rip it out, evidently, whenever it wore off.

The doctors kept preparing CF for the possibility that I might die. The infections were very severe, and I kept going into respiratory arrest. Our 13-year-old son went to stay with friends of his, and one of CF’s sisters flew in from out of town (giving her three out of her four sisters close by; my sister and mother would come later).

She hadn’t told any of our out-of-town friends, except for Amy, who found out when CF accidently sent her a text message, thinking she was texting our son. Amy was on the next flight out from Massachusetts.