That Time I Almost Died Part VI

Late November-Early December 2008...


Tuesday I had an appointment with a new physical therapist. The one I’d been seeing for 2 ½ months informed me at the end of my last session she’d be out of the country through January. The notes she’d made during my mostly ineffectual treatment were lobbed to another therapist, and my first appointment with him was primarily a questionnaire. 

For the second session, he put me through a wide range of tests, focusing mainly on my reflexes. Using the old reflex hammer, he made four consecutive unsuccessful attempts to get a reaction from my right leg. On the fifth, my kicked up with Rockette flair. Attempt six? Leg did nothing. Even the therapist had to chuckle. 

He told me I shouldn’t come back, as this was beyond the scope of standard physical therapy. Can't argue. When your reflexes don’t work, doing push-ups against a wall doesn’t help.

Thursday I received a call from a private (out of pocket $$$) hematologist offering me an appointment that afternoon. It was an initial consult, priced at 170 pounds. Appropriately, the doctor was located near Baker Street, the old solving grounds of detective/part time coke sniffer Sherlock Holmes (read “The Yellow Face” for cokeheaded goodness).

The hematologist and I labored through many of the same questions I’d been through with other docs. At least she stayed wake while I gave my answers.

She had me remove my shirt and handed me a gown to preserve my much cherished modesty. The gown did nothing to cover me up. It was as transparent as a white person namedropping MLK.

While looking me over, she kept reiterating: “You really are pale.” As I’ve mentioned, since coming to London, multiple strangers have approached me and asked, "Are you all right?" One even strongly encouraged me to sit down, (though she probably didn’t want it to be next to her). That happens when you look like Casper the Friendly Corpse.

When all was said and done, the hematologist’s best guess was something called polymyalgia rheumatica, though she admitted what should have been one of the key indicators in my earlier bloodwork had come up normal. She ordered another round of tests and told me not to leave the hospital without getting my blood drawn.

I said adios to several more tubes of blood and went to pay. The bill I was given contained nothing but a few hieroglyphics, and I am not an Egyptologist. I was told I had to go to another building to pay the unreadable bill. Two buildings, one bill. Two buildings, one bill. I know I said that already, but I didn't have time at the hospital to take a deep breath and count to ten. I am doing that now...

Once inside the second building, I handed King Tut's Lost Medical Diary to the cashier. I was delighted to discover it translated into a charge of £462. And that was just for the bloodwork. I am to be invoiced later for the £170 consult fee.

I should know the results this week. If the hematologist is correct, the condition should be treatable with steroids (not the Barry Bonds kind, though those would come in handy right now), and I will begin the program within days. Individual results may vary, but my research says the process could last up to two years. Although this diagnosis wouldn't exactly be good news, I am in the strange position of half rooting for it, so that at least I'll know what I'm up against.

And no, what does not kill me isn’t going to make me stronger. But seeing that this is one of the pet phrases of middlebrow optimists, I am bound to hear it soon. That this line is linked with Nietzsche has even given it currency among people who should know better.

Grave setbacks don't make you stronger. They make you weaker. Do you see marathon winners purposely rolling their ankles during training to help them win the big race? Know many ballerinas who don a neck brace along with their leotard to give them that all important edge? People looking to excel take protein shakes, not chemo. But much like its cousin, the broken window fallacy in economics, the myth of rising from the ashes as some sort of superphoenix never seems to fade away. By the way, here's something else Nietzsche said: If you gaze into the abyss, the abyss gazes also into you.

Speaking of weakness, I’m now having constant biting spasms all over my body. It feels like I’m being pinched by an invisible lobster. The worst spasms are those now making guest appearances on the bottom of my feet.

The spells of immobilizing fatigue are coming more often. I keep finding it necessary to rest on stairwells, to lean against walls, and to scout for places to sit, even after the mildest activity. My train station is 10 minutes from my flat. Sunday night I barely made it home, and fell through the door winded and without an ounce of strength left in my body.

I feel stronger already!

That Time I Almost Died Part V

We take you back to 2008...


It was a rough, teeter-totter week leading up to Monday’s neurology appointment. My mind has been teetering between regret about things not done and tottering toward vows to do things differently if my health ever improves. Luckily I’ve had some new symptoms to keep me company; painful spasming in my legs, feet, and toes, along with episodes of slurred speech. One day at lunch I reached for some pepper packets, and realized I couldn't seem to grip them. I watched in awed terror as they slipped through my suddenly useless fingers.

The neurologist’s facility was in Whitechapel; home of Jack the Ripper. I don’t want to say Whitechapel has changed since the murders, but let’s just say if Saucy Jack were around today, he wouldn’t be slicing up any pork.

Once inside the building, I was batted around like a loitering fly until I was eventually routed to neurology. The first thing I learned was that the person doing the examination wasn't the person I'd been told I was supposed to see. The second thing I learned was that their computer system had been down for several days, so the neurologist wasn't sure if he even had my charts. The third thing I learned was that there wasn’t going to be an MRI that day.

The neuro guy and I went through a Q&A similar to the one I’d been through with the hospital doctors. He seemed mostly unworried about my complaints, and didn’t seem to grasp (at least not openly) how weak and generally diminished I’ve become. This seems odd to me now, since his first observation was that I had limped my way into his office.

He indicated I had a few “borderline” results in my bloodwork, but nothing that really stood out. My blood platelets, iron, and calcium were “borderline,” but not exactly abnormal and nothing to be alarmed about. He kept alluding to hematologists, and seemed convinced almost from the get-go that my decline was more of a blood issue. The only time an MRI came up was when I brought it up.

He wondered aloud if I had caught some sort of exotic viral infection that had ravaged my immune system. I can’t even recall a stiff bout of sniffles over the last 5 months, so to me this sounds unlikely.

Dr. Feelnothing all but rolled his eyes when I repeated the MS theory, which is obviously a good thing. The last thing you want to h ear when you mention a hopeless diagnosis is, “MS, thank you! That’s the disease I was thinking of! Couldn’t remember the name.”

While I’m very happy he didn’t detect anything MS-like, given his overall demeanor, part of me worries that has as much to do with lazy investigation as it has with the chance that MS is the culprit.

Before sending me off to get milked for several more tubes of blood, the neurologist said in 2-3 weeks I would receive letters updating me on when I could see the necessary specialists. In other words, I have to wait 2-3 weeks to find out how long I’ll have to wait to see someone again. If the tortoise and the hare had raced in the UK, the tortoise also would have stopped off for a nap.

I haven’t even mentioned yet what an ordeal it was just to get this fruitless appointment. If you remember, my NHS (“universal healthcare”) GP let me go last week with the assurance I’d get a call from the neurologist. That call never came. I had to leave five increasingly frantic messages with multiple people over the course of the week before finally hearing back last Friday afternoon. And remember, this was after the GP felt it necessary to explicitly consider MS; so presumably, the MS theory was forwarded to the neurology folks. I gather then that possibly having a condition debilitating enough to headline its own telethon still doesn’t make you a priority. with NHS ("not for profit healthcare").

I booked another emergency appt. with my NHS GP for this afternoon. My plan was to bellow until her ears rang with a plan for getting me faster treatment. Her response: “There’s nothing I can do to speed up the process. I am sympathetic to their not considering it urgent. Your systems are very vague. First it was the shoulder, then orthopedic, now the dizziness and the weight loss…”

So I because I have a lot of symptoms that continue to grow in number and severity, this actually makes me less of a candidate for priority treatment. Wouldn’t you think it’d be the opposite? Wouldn’t you think a patient whose condition keeps deteriorating in unconventional ways would be sent to specialists faster in hopes of preventing the appearance of yet more symptoms? “There’s nothing I can do,” says my GP. Had I just walked in from the beginning and attributed everything to Planter’s Wart, perhaps I would have glided through the system.

I am really afraid of dying in London. Not just because of the whole death part, but because I’m afraid not even death will work properly in this soggy and unknowingly backward dystopia. I’m afraid I’ll die and instead of heading towards the light I’ll hear an announcement saying, “Due to improvement works, there are severe delays on the River Styx."

That Time I Almost Died Part II

Written sometime in 2008...


Anyone remember when I was funny? Neither do I.

I finally managed to see my NHS ("universal healthcare") GP. After hearing my boxset of symptoms, she nonchalantly told me it would still take 46 days to see a specialist. That her referral was riddled with spelling errors didn't make me feel any rosier about my prospects of fast, adequate treatment through NHS.

By this time I was beginning to get desperate. I was becoming less and less mobile, to the point where I had to start weighing the pros and cons of every single daily task; carrying groceries, tying my shoes, taking things out of the oven, reaching for my shower head, you name it. One false move in any of these tasks would often keep me frozen for hours if not days on end.

Given the bureaucracy and delays I was facing with NHS (“universal healthcare”) and my private insurer, I decided I would try to rehab myself by swimming. I hadn't been in a pool in 16 years, and it showed. I used the Slow Lane at my gym's pool, which still turned out to be too speedy for me. It is never inspiring when decrepit grannies with the Reaper's reflection in their eyes are outshining you in a physical activity. I guess the lane I really needed was the one for amputees. Or maybe I should have looked for the lane marked Hearse Speed.

Unfortunately, even swimming soon became a tightrope walk for me, with random pain and weakness sometimes appearing after just a few laps. How do you injure yourself swimming? Swimming is what they prescribe for people who’ve injured themselves playing OTHER SPORTS. No one ever says, “Oh, you hurt yourself with the breaststroke? Yeah, just go play rugby for a few weeks.” Somehow, I’d managed to become too fragile for a default sport.

So we come to the end of August, or about the two month mark. Still haven't been cleared for treatment by my private insurer and NHS is moving slower than Mike Payne in the 400 meter butterfly. The early healing novelty of swimming also started wearing off, and my decline picked up steam. By the end of August, I could no longer sit at my kitchen table. Within 30 seconds of plopping down on one of my kitchen chairs, back pain would force me to my feet. Since then, I've had to eat all of my meals standing at my kitchen counter.

This was the time when I really began what I call "bargaining with my body." Every physical activity required I make a sacrifice somewhere else. My thought process devolved to this: If I mop the floor, I won’t be able to carry groceries back from the store. If I clean the fridge, I won't be able to take my clothes out of the dryer. If I do __, I can't __. Eventually, you just quit doing most things altogether. By now the floors of my flat no longer need a mop. They need a Zamboni.

Anyway, “summer” ends and the temperature starts to drop. I didn't bring much warm clothing to London, so I tried to do some shopping. As it is with everything when you're in a state of total decline, you start planning around your deficiency. For example, I went to buy a pullover, but then found that "pull" was an unfortunate verb for someone with my shoulder and back problems. What I needed was more of a drape-over. Actually, the ideal solution would have been for me to just grow a layer of fur, which at the very least would have secured me a spot on the catwalk (told you I wasn't funny anymore).

I gave up trying to hang up my clothes. I couldn't lift them to the hangers anymore, so I just started piling them up on the kitchen table.

I also had to stop working on my laptop for more than a few minutes at a time, as I couldn't find a comfortable position to sit with it, and could hardly risk moving its whopping 8 lb. mass. This and the fact that typing itself sparked pain and tingling canceled most of my writing plans.

My weekends became marked by panic as I spent them in constant fear of calamity. Remember, I live alone, and don't know anyone in London. I don't have a wife, girlfriend, or a roommate. No one is around to offer assistance, and the London medical system isn't one you would accuse of being overresponsive. When you're dependent entirely on yourself and functioning below 50%, successfully eating and showering each day become the foremost things on your to-do list.

One Sunday in mid-September, I awoke and was more or less unable to move. No seriously, I kept sending signals to my limbs, and they kept giving me the old line item veto. I wound up wasting a sunny weekend afternoon staring at the ceiling. When I did finally convince my body to move (and inch by inch process), I basically had to get up and eat what was on the counter. Luckily, I had some tuna cans and bananas within reach (bourgeois, I know). Even lifting a plastic cup of water to my mouth required two hands.

That little flirtation with paralysis triggered me to give up on insurance and NHS and begin going to a private physiotherapist outside of the system. Initially, it was marginally beneficial for pain relief, although I didn’t really feel stronger. Such mixed signals made the mindgames and bargaining even worse, because I’d have a few days of progress and would start saying to myself, "Ahh, the road back!" Then one morning I’d be taking the lid off the mouthwash and the pain would be so swift and brutal I’d see stars and go flying backward like a man tossed off a treadmill.

Soon after I asked a neighbor to pull down my Murphy bed for me. He eyed me with more than a degree of bewilderment, probably thinking he was about to land a starring role in a snuff film. Fortunately, he agreed to help, and once he brought the bed down, I had to leave it down, which meant the doorway to my bathroom was blocked (my flat is a studio), which forced me to crawl/roll over the bed each time I needed to get in. This caused its own kind of pain, but it was better than the pain of slumbering on the sofa. Another piece of bargaining.

The sheer randomness of the pain in my back and shoulders was the worst part. It made planning close to impossible. I never knew when or where the anguish was going to land, only that at some point it would hit...kind of like a V2 rocket. By late Sept. I became hesitant to leave my flat except when absolutely necessary, because like I said, if/when something went wrong, I had no one to call, and no immediate remedies. On the plus side, this has caused me to drink less coffee, since I have very little reason to be awake.

Comedy was a big reason for my move here, but as you might have guessed, I'm not doing many shows. I don't know anyone and can't exactly network from home. It's just as well, as I haven't been doing much writing. I'm not really thinking of jokes anymore. What bounces through my brain these days are heavy quotes from literature ("The weakest kind of fruit drops earliest to the ground"). Melodramatic? OH YEAH!