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Browsing Tag

MS

Cotswolds

Tramp’s Pillow

Posted on June 2, 2009

Last weekend we went to lunch hosted by the local bon vivant, M. The blue and white check cloth-covered table was set out in the front garden against the wisteria draped stone of the house. Rambling flowers to the left belied the hours of care that had gone into them. To the right was the chicken coop that has supplied us many breakfasts and a kitchen garden with neat rows of lettuces and stick tepees awaiting their runner bean linings.

The weather was behaving impeccably and it was all straw hats and sunglasses and rosé served from an earthenware pitcher. A compliment on the jug prompted M. to confess the decanting was being done to conceal that the rosé was coming from a box in the fridge. This led to a discussion on the virtues of boxed wine, a subject about which I thoughtI knew something given I had a box o’Franzia pink in residence in my closet for all four years of college. There was, however, a piece of trivia that was new to even me. The bladder in a wine box is indestructible and therefore makes a handy pillow—a tramp’s pillow—in a pinch. M. always keeps one in Châteaux Peugeot (a.k.a. his white van) in case of (presumably wine-induced) emergency camping requirements. All this musing on boxes of wine and tramps sent M. into a tailspin of melancholy. His phone had been cut off a week ago because he hadn’t paid the bill. Head in hands, he informed us that this was not where he hoped to be at the age of fifty-six.

M’s purported dissatisfaction with his life got me thinking about the nature of happiness. I didn’t really believe he was unhappy most of the time, but rather pesky intrusions like an overdue phone bill were conspiring to make him believe he was depressed. It reminded me of the nocebo effect, which works like the opposite of the placebo effect, producing symptoms by creating negative expectations. Experts blame the proliferation of public health warnings and medical information on the web. I long ago imposed a self ban on Googling anything MS related, but ever since I was nominated for membership in the chronic illness sufferers club I’ve noticed MS all around me. It’s like when you’re pregnant or engaged and it suddenly seems like everyone else is also having a baby or getting married. Just this morning there was a news story about a woman with MS who has become a member of an assisted suicide clinic in Switzerland. After I hear something like this I invariably start to imagine symptoms. I have a heightened awareness of my middle spine or a tingling in my knee. It takes a few minutes to realize that’s just the belt on my wrap dress cinched a little too tight or to remember I walked through a patch of nettles earlier in the afternoon.

M.’s melancholy passed before we finished the roast chicken. By the time we were on the cheese he was busy discussing the 150+ strong guest list for his upcoming fifty-seventh birthday party which he plans to celebrate with Heinz 57 themed catering—beans on toast and boxed wine for everyone. I’ve already thought of the perfect birthday present for him: the biggest, fluffiest goose down pillow I can find.

England

The Grand National

Posted on April 5, 2009

The UK is in love with horse racing, so much so that there are betting tips every day on BBC Radio 4’s flagship morning news program, Today. Another regular segment on this show is Thought of the Day, in which a priest or rabbi or imam offers some spiritual insight in the form of a quickie sermon. That these two segments sit alongside each other without any trace of either irony or discomfort is perhaps the best illustration I can offer of the difference between America and the UK.

Yesterday was my favourite horse race of the year, The Grand National, which takes place at Aintree in Liverpool. We went into the wine bar to watch where M. was working behind the bar. He just happens to have a bookkeeper who is also a bookmaker—a dangerous combination if I’ve ever heard one—and so the small group that had assembled was able to call in some bets before the race started. (Between this and the wine, farmyard eggs, and homemade marmalade on offer, this place is getting dangerously close to supplying all my needs in life.)

I broke my cardinal rule of choosing my bets based on horse’s names that strike my fancy, instead opting for two tips I read in the appropriately named How to Spend It supplement in the Weekend FT. Thus it was that I had Snowy Morning and Butler’s Cabin to win. We also put £5 on Darkness to win after we realized that the wife of the man responsible for providing half our income owns him. It just seemed like the right thing to do.

At 4:20pm the race got underway in a manner fitting of the Mr Toad’s Wild Ride of horse racing. There are no starting stalls in The Grand National. Instead the forty competing horses simply rushed the starting line like a school or crazed fish. There were two false starts before the official let them get underway on the 4.5 mile course. The other distinctive feature of The Grand National is the fences, thirty of them to be exact. These are no ordinary fences. They look like giant hedgerows, taller than the horses, some with ditches and water features and names like The Chair and Becher’s Brook. The process of elimination—which is as much what winning this race is about as being fast—starts at the first jump when a handful of horses or their jockeys or both go down. This continues over every jump and it is a dramatic, sometimes wrenching site with horses lolling on their backs and jockeys in a protective, head clutching fetal position as they try to avoid impact from other horses still flying over the fences behind them. There are a handful of jockey-less horses still making their way around the course at any point in the race, oblivious to the fact that they’re disqualified and generally posing a hazard to everyone else. None of our horses won, but it was no small feat that all three finished. Only seventeen of the forty did.

Besides the finish line, another milestone was reached yesterday afternoon. Husband finally relaxed enough to start introducing some humor into my recent health scare, joking with M. about how it would go down in the community if he left me now that I am a “disabled lady.” M. wisely replied it would depend on how fast and with whom I then took up, a scenario I think husband had failed to consider. In any case, it was a good sign that husband was starting to feel a bit less stressed after the past three weeks of playing the full-time role of responsible grown-up and emotional rock.

I am feeling great but cautious, having made the mistake of spending an hour on WebMD this week reading up on MS after showing such exquisite restraint earlier in my treatment. It was filled with depressing articles called things like “MS and Your Career” or “MS and Intimacy.” But the thing that gets me most about my prognosis is the uncertainty. From here on out a diagnosis of MS is 50/50, but even if I am diagnosed it doesn’t offer much more insight into what happens next. The symptoms I could experience range from a little muscle spasicity or feeling like my foot is asleep to sudden paralysis or blindness at intervals of oh, anything from weeks to months to years between episodes. I couldn’t help seeing some parallels to the Grand National, first in the rapid fire process of elimination that got me to my initial diagnosis. Stroke, voicebox damage, and brain tumor knocked out in consecutive days like horses fallen at consecutive gates. And like MS, the odds mean little in The Grand National. The winner, Mon Mome, was 100-1, while another favourite, Hear the Echo, collapsed and died in the run in. I’ll take comfort in Butler’s Cabin, one of my bets, who finished in seventh but collapsed shortly after crossing the finish line. He was quickly revived by a dose of oxygen, springing to his feet to the relieved cheers of the crowd.

Random

A Room with a View

Posted on March 28, 2009

This morning I awoke to find my bedroom window framing the demise of coal size blobs of moss as they plunged to the ground. It was a violent change from the normal tree with field tableau. For a moment I thought these were the world’s first suicidal plants, then I realized it was a black bird violently shifting them from the places on the roof slates where they had nested all winter. It is officially spring, and I guess it is time for these blobs to make a nest for someone else.

I have spent a lot of time looking out this bedroom window over the last week as I’ve been laid recuperating from the after-effects of the steroid treatment, which was in some ways more debilitating (if less scary) than the symptoms. It is, thankfully, a rather nice view at which I could look more or less gaze indefinitely. The twelve window panes, whose frames are badly in need of a paint job, look out over a high stone wall and a large and handsome stone house behind us, a tree towering four stories to the left, and behind, St. George’s field which slopes up into a horizon of green, tree-lined hills. I’ve been to see the neurologist yesterday who seemed as pleased at my progress as he was stoic and scary when he first saw me a week before and broke the news. He’s prescribed one more week of looking out the window, then it’s a cautiously optimistic game of wait and see.

Random

Big Head

Posted on March 24, 2009

I have always had a big head, literally. If a hat label says “one size fits all,” I don’t even bother trying it on. I need “large” at a minimum, preferably “extra-large.” Over the years there have been both great millinery victories — my fuchsia, feathered Royal Ascot extravaganza — and disasters, as when my favorite Kangol white safari-style summer hat strayed into the clothes dryer and forever out of my wardrobe. But last week my brain decided to take the “big head” issue to new heights by engaging in what my neurologist terms “a clinically isolated incident of inflammation.”

I don’t mean to make light of my medical condition, but I hope that by demonstrating my good humor you’ll be more likely to forgive me the vanity I demonstrated upon hearing that my immediate course of treatment for an inflamed brain would be three consecutive days of intravenous steroid treatments.

“Are there are any side effects?” I asked the doctor, by which of course I meant would the steroids make me puffy. I am currently doing puffy just fine without any extra assistance.

As it turns out the steroids are an anti-inflammatory and therefore no puffiness involved. I can vouch for that now, having finished day three yesterday. The only side effects seem to be that I am fatigued and incapable of staying on my feet for more than an hour without becoming very tetchy. Which gives me time to blog.

The whole “incident” started a week ago last Saturday. Husband and I were out for a bike ride when I commented that I felt like I had marbles in my mouth. This continued over the weekend. I was finding it increasingly hard to talk, which is not without irony since I am well known for being a motor-mouth interrupter amongst both friends and colleagues. I felt like a drunk person trying really hard to sound sober or someone coming off Novocaine trying to form words convincingly. By lunch hour on Monday I knew something was wrong.

I knew something was wrong even though nobody else seemed to notice. I only vaguely sounded like I was slurring to my own husband. When I asked two co-workers with whom I share an office if I sounded funny they laughed and said only because I was American. Then one asked if I had been drinking and laughed some more. Trusting my instincts got me into treatment within a week of first recognizing something was wrong. And so concludes the public service announcement portion of this post.

Last week then devolved into a series of rapid progression, process of elimination medical appointments. Tuesday afternoon the GP put me through a drill not dissimilar to that of a drunk driver before handing me off to an ear, nose and throat specialist on Wednesday. After a camera up my nose to look at my vocal chords and more drunk driving tests, I was dispatched swiftly to “the donut,” or MRI scanning machine and given an appointment with the neurologist for the following Monday night. On Thursday the ENT called me during a break in the operating theater to assure me there were “no tumors or anything like that,” but to also let me know he had gotten me in with the head of neurology at 6pm on Friday. No tumors good, prioritised Friday night neurologist appointment bad.

The neurologist had me tell the whole story of my symptoms and did yet another round of drunk driver tests before he spilled the beans on my scan. I knew there were some beans to spill because he waited for me to put on my shoe before he’d start. Then out came the “clinically isolated incident” bit. The bad news was that multiple incidents constitute a diagnosis of MS. I had to ask if multiple meant two, as in if this happens one more time. It does.

I usually call people by their first initial in this blog since I am generally either poking fun at them or commenting on their prolific drinking habits. However, I feel obliged to give a shout out to my neurologist, Dr. Fuller, who refused to allow husband and I to get carried away with what might happen and instead kept us focused on the immediate steroid treatment. Dr. Fuller is tall enough to look like a retired pro basketball player and calm, gentle, and patient enough for me to wish just a little bit he was my dad. He even made a special trip to see me on Saturday at the hospital when I was getting my first treatment.

The hospital is a private one in Gloucester, a town I last visited in February for my citizenship ceremony. I am glad to be getting my treatment out here rather than in London. For one, husband can drive me and park easily. There is neither the hassle or the expense of taking a cab, just rather pleasant green space on the twenty mile drive between our cottage and the hospital. The hospital itself is more well maintained Travel Lodge than institutional. For the three days of my treatment I had the same private room overlooking a courtyard. There was a flat screen TV, a nondescript Impressionist framed print, and wood effect laminate flooring. The nurse wrote a note so the janitor didn’t throw my newspapers and magazine away. Each day a waiter brought a pot of tea. The doctor who poked me with needles every day was a Romanian named Elian who practised his English idioms on me. I didn’t mind because it distracted me from the vials of blood he was filling from my arm, except for the time on day three he tried to make a joke about having to take more blood but I didn’t get it was a joke.

The nice thing about the post-treatment fatigue is that I don’t have any interest in investigating websites on MS or Lupus (husband rifled through my chart to look at the second round of blood tests that had been ordered and blurted out Lupus, doing nothing to relieve my anxiety). I am surprised by my willingness to sit in the not knowing this week and attempt to recuperate, considering I am normally a control freak. I figure there will be plenty of time for obsessive medical investigation. Right now I’m more about Gilmore Girl reruns.