The story so far (5/29/2011)
I had a little mishap this week. Now that the immediate crisis has passed, I wanted to get my version of events out so that the rumors and cheap, sleazy innuendo can all start from the same basis.
Thursday morning I had what doctors are calling a mild stroke. I woke up and when I went to rub my eyes, my left hand slapped me in the face (think Ted Stryker’s “drinking problem” in Airplane). When I went to stand up, my left leg gave out from under me and I fell back onto the bed. After determining that it wasn’t going to clear itself up, I had a friend take me to the emergency room (after an unnecessary side trip to the neurologist), where they admitted me Thursday afternoon.
After a barrage of tests over the last three days, here’s what they know. My symptoms appear to indicate a stroke, but they were unable to find it on the MRI (they don’t know if it’s too small or to hard to find). The left side of my face is slightly numb (think the last 5 minutes before Novocain wears off). My left arm is slightly clumsy (I can type, but I can’t always touch my nose with my finger like at a DUI checkpoint). My left leg is more uncoordinated, to the point that I can barely stand and can’t walk unsupported without leaning to the left and falling over (and you all know I NEVER lean to the left!). My balance is all screwed up, which contributes to the unsteadiness. On the plus side, two batteries of cognitive tests have detected no cognitive or speech impairment. I’m still me, just slower, numb-er, and dizzier.
So now I’m at the hospital. I have a care team of approximately 73 people (to date), broken down as follows:
– 40% hot nurses and therapists and technicians young enough to be my daughter
– 30% beautiful married doctors young enough to be my little sister
– 10% dieticians and nurses aides
– 20% middle-aged Indian cardiologists, all named Shah. (Two and counting.)
On the downside, while the team here looks like the cast of a TV medical drama, they don’t act like real medical staff. There is no unresolved sexual tension, or backbiting, or even blatant hospital politics. The dialog is boring, and all about “me, me, me”. “How are you feeling, John? Time to check your blood pressure, John. Can you touch your nose, John?” I mean c’mon! Even I’m not that interested in my health! (And yes, I talk to the staff this way.)
They expect a full recovery over time (weeks to months, too soon to tell). I’ve got physical therapy to try to relearn how to walk (I fell on the floor moving from the chair to the bed yesterday, so there’s more to go). I’m stuck here until they think I can live at home without killing myself (probably late next week). I’m allowed visitors until 8:30PM, and I’m back online now, and I have my cell phone if you want to check in.
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Status Update (5/30/11)
“Update: day 5 was a benchmark on recurrance and I passed. Best guess is a week of in-patient rehab to start Wednesday (?) Still no telepathy or telekinesis. Can’t even start a decent fire with my mind. Thanks for all the visits and well wishes.”
Status Update (5/31/11)
“Day 6 Update: Finally switched laptops after my home laptop fried its wireless adapter. Today was the day that optimism met reality. Walked down the hall today with my walker (while telling the other medical staff to get off my lawn) for 15 minutes. Did some rudimentary arm and leg exercises (throw a beanbag, stand on tiptoe, etc.) for another 30. Did great. Required a 3 hour nap to recover.”
And on the 7th day, I rested… (6/1/2011)
…and that’s when things got weird.
Today was supposed to be the day I got moved from the hospital to the rehab unit to work on re-learning to walk. The caseworker who handles these things that I would probably have two choices of where to do my rehab, but that for different reasons, neither would be available until Thursday, and I had until then to decide. One is in Cary, the other is near the WakeMed hospital on New Bern Ave. (about 15 miles away for the non-locals). The one in Cary is closer, but as I’ve been investigating, I’ve been told to stay away from the one in Cary, so the plan was to go to the WakeMed Rehab as soon as a bed was available.
Physical therapy and occupational therapy went really well this morning. The PT had me walking with and without the walker, and basically wants me to use the walker for a while because my gait is more natural than my walker-less zombie shuffle. Had lunch, read some e-mails, and slipped into a 2-hour nap (down from 3 hours yesterday after the same activity).
Except when I woke up, my right leg (the good one) had the same Novocain numbness as the left side of my face. After being quizzed by the nurse, my doctor (the replacement for the hot one) came back and reopened the diagnostic phase. Maybe they didn’t find a stroke because I didn’t have one. So this evening I went back down for a spinal MRI, an experience akin to being a photon torpedo for an hour, only louder and not as roomy.
No one has speculated to me yet, so right now I’m assuming that my superpower is finally kicking in. I don’t know exactly how a numb leg relates to telekinesis, but as John’s Razor states, “Once you eliminate the impossible, whatever remains, however likely, is boring.” So I’m going with telekinetic leg. Deal with it.
I won’t find out till morning at the earliest what’s up, or what it will mean. My guess is we’ve just hit the bottom-of-the-hour commercial break on House, where Chase says, “I guess it’s not cancer.
I’ll keep you posted.
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A word from the management (6/2/2011)
Warning: the following note contains one or more nuggets of genuine emotion surrounded by humorous disclaimers. Please be advised that no new data is included in this note.
I just wanted to say thank you to all the people who have shown their concern for me over these past few days. It’s an amazing thing to realize you have more and better friends than you ever thought possible.
DISCLAIMER #1: The preceding message should not be interpreted as a “final message” or “goodbye” or “words that needed to be said before the end”. I am not dying. Any subsequent events of a tragic nature are purely coincidental.
DISCLAIMER #2: The humorous nature of any disclaimers in this note should not be interpreted as “plucky” or “putting on a brave face” or any deeper meaning. The humorous disclaimers are here to document for myself and others that any current neural abnormalities I may be experiencing are purely somatic/autonomic in nature, and are not affecting my basic personality or cognitive skills. I’m still me.
DISCLAIMER #3: No aspect of this experience is intended to be touching, heartwarming, or a triumph of the human spirit, and should not be portrayed or relayed as such now or in the future. If any aspect of my situation brings a tear to your eye, please return your eye to the manufacturer for repair or replacement.
DISCLAIMER #4: The emotions expressed herein, while genuine, do not represent the full range of emotions I am currently experiencing. At this time, my primary emotional state is that of an engineer trying to figure out a customer bug: fascination at the coolness of the problem, mild frustration at not having solved it yet, and a bit of competitive desire to identify the problem before the doctors do.
DISCLAIMER #5: These disclaimers have been designed to compensate the reader for any worry, fear, or sadness you may be experiencing on my behalf. I sincerely regret making people feel bad on my behalf, especially when I’m not. Please be assured that I will be fine. I’m always fine. The box I currently come in is experiencing technical difficulties, which are being attended to. Any difficulties of a spiritual nature are far more important to me, and they too are being attended to. In the meantime, there will be a short delay.
DISCLAIMER #6: There is no disclaimer #6.
DISCLAIMER #7: The absence of a disclaimer #6 is included at the earlier personal request of my friend Chuck for a Monty Python reference. No deeper meaning should be inferred. The last line of disclaimer #5 is an obscure Hitchhiker’s Guide to the Galaxy reference, and was added late purely for the amusement of the author.
DISCLAIMER #8: No special significance should be attached to the fact that this note was written at 4:00 in the morning. I intended to go back to sleep after one of the periodic sensor sweeps the hospital engages during the night, but all of these little jokes started popping into my head, and I wanted to capture them. I will go back to sleep when I feel tired. My position is simple: if the hospital doesn’t think a good night’s sleep is necessary, who am I to argue?
DISCLAIMER #9: That being said, I am getting sleepy, so I’m going back to bed.
Share and enjoy,
Status Update (6/3/11)
“After some early miscommunication and paper-shuffling, I am finally headed to WakeMed Rehab today. Don’t know much more at this point, but I’ll be back online once I’m situated. Upon arrival at the rehab unit, I’m expecting to be greeted by a zoned-out rock star from the ’80s, a vapid 25-year old “actress” with an eating disorder, and a politician with an addiction to pain pills. I’ll be very disappointed otherwise.”
Change of Venue – Credits not Transferable (6/3/2011)
Warning: In order to restore the cosmic balance of the universe, this note is light on jokes and more of a boring status update.
After 8 1/2 days at WakeMed Cary, today I was transferred to WakeMed Rehab in Raleigh, over on the WakeMed Hospital complex on New Bern Avenue. I got here sometime around 3:30 Friday afternoon. Some of the hospital experience is the same as before (a hot nurse, a hot case manager, at least one hot therapist, the bed that senses your body weight and position and automatically shifts itself to the most uncomfortable position possible). Some things are different. Where I had a room to myself in Cary, I now have a roommate for the first time since February 1982. Nice old guy, retired from NC State where he had something to do with 4H (his Deeeeeep South accent is unintelligible to me about every third word), but sometimes he beeps out an alarm in his sleep. His goal is to get out of here for his 55th wedding anniversary next Friday. My goal is to get out of here for his 55th wedding anniversary next Friday. Coincidence? I think not…
One thing that did not come with me to Raleigh was my PT transcript. By Wednesday morning, I had earned my way up to the point of using my walker to get around my room without having to drag someone from the nursing staff in to watch me. When I arrived here (strapped down to a stretcher, no less), I was informed that until the rehab therapy team OK’ed me walking, I am confined to a wheelchair to get around. I’ll probably get that restriction lifted during the evaluation tomorrow, but it’s still a bit demoralizing to see a week’s worth of my stumbling and shuffling go unrecognized.
My schedule here will be a bit more structured. Tomorrow I start physical therapy (walking), occupational therapy (regaining full control of my arm), ADL (activities of daily living) therapy, and speech therapy. I have no need for speech therapy, so I’m hoping for additional PT to speed up my recovery. I’m looking at a grueling athletic schedule of walking in a straight line, marching in place, shaving while standing up, throwing beanbags at the door, and picking up litter off the floor. (All of these are actual PT or OT exercises, all of which required huge effort on my part the first time.) I’ve heard rumors through the rehab underground that the final test somehow involves chewing gum.
Visitors are still welcome, but if you’re coming, please let me know, so I can make sure I’m available. Generally, I think I’m free after 4PM, but I’ll know more after I’ve actually been here for a normal day. I think the doors close to new visitors at 8PM.
Once again, thanks to everyone for your support this past week. I look forward to rejoining the human race (largely for the purpose of mocking their behavior) sometime soon.
Share and enjoy,
Sunday Supplement (6/5/2011)
Not much going on. Today is an unwanted and unneeded day off from therapy. (Yes, yes, I know the Lord rested on the seventh day, but the Lord wasn’t trying to get out of the hospital.) I’m doing well here, even though I’m restricted to a wheelchair when I’m not actually in therapy. I think it’s mostly to keep me from breaking out, since I have complete freedom in my chair, but haven’t quite figured out how to safely operate it. I guess they don’t train prison inmates in tunnel digging either, so it’s probably makes sense that no one has taught me to use a wheelchair.
Just a few observations from rehab:
1) All of my therapists are beautiful young women. I think this too is mostly to keep me from breaking out of here.
2) In the absence of scheduled therapy, I found myself thinking up exercises I could do with the things within reach. I spent most of the morning on my improvised workout and made-up games to restore the coordination in my arm. Voluntarily exercising is the first evidence I have seen of stroke-induced personality changes. Pretty scary stuff.
3) Today I had to shave and brush my teeth at the sink without leaving the wheelchair. I’m well aware of the challenges of being too tall for a 5’8″ society (leg room, bumping my head), but I can’t remember the last time something was out of my reach. How do short people live like this? (Note: Sympathy aside, I do not endorse moving things closer to the ground. I do endorse short people being taller.)
4) A few minutes ago, my roommate’s phone rang, and he was unable to reach it. I was sitting in the chair writing this note, and was able to scramble over and hand him his phone. This is the first time in almost two weeks that I could do something for someone else. I miss that.
5) I’m 6’4”, and most people pick up on the fact that I’m tall fairly quickly. (I’m not shy about being tall in the presence of others.) The wheelchair hides that, so whenever I stand up, I cause this amazed, “how tall ARE you?” reaction. Not used to that yet.
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Status update (6/6/11)
“I just got my first unofficial, back-alley, single-source, “you didn’t hear it from me” confirmation that my plan to complete in-patient rehab by Friday and go home is not unrealistic. And there was much rejoicing. Also, I passed my 4th cognitive/speech therapy test in a row.”
Status update (6/6/11)
“The dangers of single source reporting: the official sentence is 2 weeks of rehab. I have 4 days to change their minds.”
Status update (6/7/11)
“Idle observation from a hospital: the question “What is she ON?” takes on a whole different meaning when excitedly shouted down the hall.”
Status update (6/7/11)
“Incoming data has now been tabulated: the longest John can go without his control freak side asserting itself is 11 days. Disclaimer: I am NOT asserting control over the course of rehab. I do what I’m told by the people who know.”
Just another day in rehab (6/7/2011)
Just a quick note to update those who have asked after me.
Friday afternoon I was moved from WakeMed Cary to WakeMed Rehab in Raleigh to begin my in-patient rehab. There was a bit of paperwork jousting between the hospital and the insurance company to get me here, since the hospital assumed my need for rehab was such a slam dunk that they neglected to document to the insurance company exactly WHY it was such a slam dunk. Held things up for a day, but it all got straightened out.
I’m now at WakeMed Rehab on the hospital complex on New Bern Avenue. My room is 2C04, and I’m allowed visitors before 8PM (my therapy sessions run from 10-11AM and 1-3PM, so after 4PM is the best time to visit. I’m starting to see some signs of recovery, although today was the reminder that the path from stroke to recovery is not going to be a straight line. Since I placed out of cognitive/speech therapy on the first day, I get 1 1/2 hours of physical therapy
(mostly walking and climbing stairs) and 1 1/2 hours of occupational therapy (balance/equilibrium and arm proprioception – hitting what I reach for the first time). Walking down the hallway is much more of a workout than it was 2 weeks ago, so it’s pretty grueling, but I’m seeing slow progress.
The treatment team met together yesterday to plan my rehab. Their recommendation is two weeks. I was really hoping for one week, and I still have three days to change their minds, but sadly, I think two weeks is probably the right answer, and I’m not going to override their medical judgment on this.
I’ve had plenty of visitors and e-mails and IM chats over the last 12 days, so my spirits are still high. I met the Catholic chaplain of the hospital yesterday. He said they have daily Mass here, but since it’s right after my PT session at 11:00, it may be a few days before I’m in decent shape to attend. With the invention of Wi-Fi, the problem of boredom in the hospital has pretty much gone away. Nothing a little Netflix can’t cure. 🙂
Thank you for all your continued prayers and support. You’re all welcome to come by whenever you can to help me dig my escape tunnel.
I look forward to seeing you all in the near future.
Share and enjoy,
Status update (6/8/11)
“Interesting nutritional fact of the day: Without salt, most healthy food tastes like crap. It’s like they’re feeding me hunks of plant and animal matter. It’s like having a stroke reduced me to the caveman level. At least I can still understand insurance from GEICO.”
Status update (6/9/11)
“My boss brought me the book, “This Is A Book” by Demetri Martin. I had never heard of him, but the book is hysterical in a very Steven Wright-like way. My favorite quote so far: “I am a mystery wrapped in an enigma wrapped in a pita. Why a pita? That counts as another mystery.””
Status update (6/10/11)
“Note to self: stop joking that every day is “not bad for a Monday”. They take identifying the day of the week seriously in stroke-land. Note to hospital: stop making every day identical to the one before, and then asking me which one it is. In here, it truly doesn’t matter.”
John’s Stroke FAQ (6/11/2011)
In my continuing effort to allow others to be amused by my health concerns, I thought I’d update you in the ever-popular Frequently Asked Questions (FAQ) format.
1) Is this going to be all jokes, or will there be any actual content?
Probably some of both. I just started.
2) Is this going to be all content, or will there be any jokes?
At this point, it appears there will be some of both.
3) I missed an episode last week. What happened?
To catch everyone up: on May 26th, I was admitted to WakeMed Cary hospital with what turned out to be a mild stroke in the brainstem. This affected my ability to walk and to reach correctly with my left arm, and left the left side of my face (and later my right leg) slightly numb. The clot that caused the stroke was small enough that it had dissolved by the time they got me into an MRI machine to look for it. The diagnosis was made retroactively based on the nature of the symptoms. None of the tests have shown any cognitive or speech impairment, a result that has been confirmed by a number of visitors who would notice any speech or personality changes. Last Friday (June 3rd) I was transferred to WakeMed Rehab for a two-week in-patient rehab stint.
4) So how’s rehab going?
Having no reference point for comparison, I’m going to say “Fine.” I do 90 minutes of physical therapy (largely to relearn how to walk) and 90 minutes of occupational therapy (largely to work on my balance). As of this Saturday morning, I can walk maybe 50 feet unassisted, and further with a walker. I have mastered three different styles of walking: toddler stumble, zombie shamble, and Frankenstein’s monster lurch. I can climb a few stairs holding onto the railing (down is harder than up). I still have trouble stepping backwards, or walking heel-to-toe. My left arm is relearning how much force to apply to stop overreaching for items, and the numbness in my face is starting to lessen.
5) When do you think you’ll get out?
I’m hoping for next Friday, the 17th. I was also hoping for yesterday, the 10th, but I’m barely mobile in the controlled environment of a hospital, so the 10th was never realistic. I think the 17th is, but the staff here is hyper-cautious, so I might have to make the case.
6) What do you mean, “hyper-cautious”?
Outside my door is a bright yellow tag that brands me a “Fall Risk”. Every patient here is stigmatized with one of two labels: “Fall Risk” or “Has Fallen”. (I believe that if all the drugs and radiation had given me the mutant power of levitation, I would still be considered a Fall Risk.) I haven’t read the policy manuals, but I believe that if someone falls in rehab, a staff member is burned at the stake. Consequently, patients are not allowed to do anything that might possibly allow them to fall, or think about falling, or think about the fall (we call it “autumn” here just in case). And falling is loosely defined as touching the floor with anything but my feet. So I am lugged around to and from therapy by wheelchair, which is the only place I’m allowed to try to walk, even with the walker. After 6 days here, I was finally approved to be allowed to scoot to my wheelchair without staff observation.
7) Is “scoot” an official medical term?
Apparently so, since it’s written on the board above my bed. Scooting is the manly art of moving from the bed to the wheelchair and back without standing up. It is related to the non-medical term “scootch”, which is used when one is trying to make room for another person on the couch.
8) Are you still being taken care of by hot doctors and nurses?
Sadly, the whole “hot doctors and nurses” thing seems to have been a Memorial Day weekend special they were running at WakeMed Cary. Apparently average looking people get seniority when assigning holiday schedules. Since coming to rehab, I have two doctors who alternate as attending physicians. One is kind of young, and he radiates an aura of “Hmmm, I see.” The other is Bob Kelso from Scrubs. However, they do share a hot physicians’ assistant who writes down everything we say. My two therapists are cute women young enough to be my daughters. The PT is a recent newlywed (they honeymooned at Niagara Autumns, I believe) about the size of my thumb. My greatest fear in rehab is that if I fell on her, they’d have to clean her off my shirt with a squeegee. My OT is one of those rare gifts for the humorously-inclined: a person who gets suckered into the setup for every joke. I want to take her home with me when I go.
9) What’s the deal with visits?
Visiting hours here supposedly end at 8:30PM, though I’ve had friends show up at 9:00 and get in. My last therapy sessions during the week end at 3PM, which I usually celebrate by passing out in exhaustion. If you want to come by during the week, any time from 4PM to 8PM is best. My room is 2C04. You might want to call first. Thursday night someone came to visit while I was in the cafeteria with another visitor, and I missed them. I don’t know who it was, since they were described as “this tall” and wearing a yellow shirt. If it was you, I’m sorry I missed you. I only get to go three places: my room, the dining room at the end of the hall, and the cafeteria downstairs. Check there before you leave. Weekends seem to be wide open. I don’t have therapy (I’m on standby for any empty slots), so feel free to drop by anytime.
10) Hey! You didn’t answer my question! What gives?
Sorry, but ten is a nice round number for these kinds of lists. Perhaps if you had asked your question more frequently, it would have appeared above. Better luck next time.
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Status Update (6/14/11)
“God Bless the insurance company! They’re letting me go home tomorrow!”
Status Update (6/14/11)
“Asked for fat-free mayonnaise with lunch, got iced tea instead. Food services people, I think I’m going to miss you most of all!”
The Final Chapter (6/15/2011)
After three long weeks, I am home at last. A big thanks to the folks at WakeMed Rehab for getting me back on my feet, and an even bigger one to UnitedHealthcare for deciding, “He’s had enough rehab, get him out of here!” A few final observations as I slowly work my way back into the real world (or at least the really familiar world I left three weeks ago).
– Kudos to the Leapin’ Lizards coffee shop in the hospital cafeteria. They make the best sugar-free mocha I’ve ever had.
– Always schedule your major health problems the day AFTER you get a haircut.
– Medicine is a huge field with numerous specialties. No one can master them all, so there will be gaps. Rehab specilaists, for example, are complete morons when it comes to diabetes management. When you are taking 4 medicines, and your blood sugar is low 4 days in a row, the correct answer is not “maybe we should double your meal portions”. “Hmmm, I see.” is alos an incorrect response.
– A hospital is no place to have diminished mental capacity. If you are thinking of being hospitalized, please reamin fully cognizant of your surroundings at all times. If you must be, say, unconscious or brain-damaged, please bring along a friend or family member who isn’t.
– As of 2PM this afternoon, this will be the longest I have gone in three weeks without knowing my blood pressure and pulse.
– I haven’t had a roommate since February of 1983. The experience hasn’t gotten any more palatable.
– The walker really isn’t going to work out in the long term. My neighbors don’t have kids and I don’t have much of a lawn for them to keep off of.
– If I can transition to a cane, I probably will. I haven’t decided which of the following is better for my own particular idiom:
1) Biff Tannen knucklehead-whacker – Back to the Future 2
2) John Steed walking stick w/sword inside – The Avengers
3) Penguin gas-shooting umbrella – Batman
4) Gandalf staff of power (Ring not included) – Lord of the Rings
For the record, I have eliminated the House metaphorical-crutch cane. I’m not in enough pain.
My plan is to work from home starting Monday, and go back to the office full time on July 5th. However, my plan was to be at work the last three weeks. Clearly I need to work on my time management skills.
Share and enjoy,
Status Update (6/22/11)
“Things I’ve been called over the last month that I’ve heard before: “funny”, “tall”, “smart-ass”. Things I’ve been called over the last month that I’ve never been called before: “impulsive”, “daredevil”, “Pumpkin”. Presented without comment.”
John’s Stroke: The Sequel (6/30/2011)
I really did intend my earlier “Final” note to be my final note on the subject of my adventures in StrokeLand, not because of any great privacy concerns, but simply because I figured the story would be less interesting once I escaped the clutches of Rehab. I forgot that the only way to ever stop writing a story is to churn out a boring, insipid sequel that does not stand up in comparison to the earlier installments, and in general taints the overall legacy. Ideally, it would also involve selling out artistic principles for a great deal of money (something I greatly admire in artists), but that’s just not gonna happen here. So without further ado, we pick up the story as John arrives home from rehab on June 15th.
I got home from rehab on June 15th, complete with my walker and orders to call and arrange for continuing out-patient rehab. My first discovery was that elves had not come in during my 3 weeks in the hospital and cleaned stuff. Sure, there was a giant pile of shoes, but I think those were there when I left. What the elves had done, apparently, was to distort the laws of physics in my townhouse to make it enormous. Moving from one room to another seemed to be a voyage of epic proportions, taking 5-10 minutes to go from one end to the other. One benefit of the stroke episode: I no longer feel cramped in my home.
The first task at hand was to schedule a follow-up appointment with my neurologist, since he was the one who had to sign off on allowing me to drive again.
At this point, we enter a flashback (sans wavy lines, which would make me dizzy) to the first day of the stroke, so I can retcon in a bit of the story I may have omitted earlier. When I woke up the first morning (around 8:15 AM) and noticed I had minimal control of the left side of my body, I didn’t immediately think “stroke”, because in my mind I always equated “stroke” with “vegetable”. So, being a genius who was not a vegetable, I did the logical thing: wait around for 20 minutes to see if the symptoms would go away. They didn’t. So I began to think maybe I did have a stroke, and I should get to the hospital.
Now there was a day, you all remember it, when everyone on the planet was told, “If you’re having a stroke, call 911 immediately!” Well, I was having an out-of-body experience that day, I guess, and missed that Important Message. So I stopped to get dressed and called my friend Tony and asked him to take me to the hospital. By this time it was about 9:00.
While I waited for Tony, I called my neurologist to inform him that I was having presumed neurological issues. I got as far as the receptionist (played in this episode by Jar Jar Binks). As best I remember, the conversation went like this:
Me: I’m just calling to let the doctor know that I’ve lost control of the left side of my body, and I’m headed to the emergency room. (Mistake #1: not using the word “stroke”.)
Jar Jar: OK. Which hospital?
Me: WakeMed in Cary, unless you have a better idea. (Mistake #2: assuming there was a better idea.)
Jar Jar: Hold on.
(30 seconds pass)
Jar Jar: The doctor has an opening at 10:00. Can you be here at 9:45?
Me: Sure. See you then. (Mistake #3: Assuming that Jar Jar’s “idea” was a better idea.)
So when Tony showed up, I told him “Change of plans. The neurologist’s office said go there.” So off we went to the neurologist’s office. We got to the office at 9:45. I filled out paperwork and sat until my appointment at 10. At 10:00, I met with the neurologist’s PA, who did some quick tests and called in the neurologist. He came in, repeated some of the same tests, and we had this brief conversation (I am not making this up):
Doctor: John, it looks like you have had a stroke. Why didn’t you go to the emergency room?
Me: Because your phone drone told me coming here was a better idea.
Doctor: I see. You need to go to the emergency room. I’ll call and tell them to expect you.
I got to the hospital about 10:45 and was greeted by smiling, happy faces that whisked me off to a cubby hole, where I began my adventure.
I mention this little flashback only to put in context the fact that when I called to schedule the follow-up, there were two women on the other end of the line. A new receptionist was being trained.
Anyway, the follow-up appointment was the next day (the Friday after I was released). They did some more tests and before I could ask, she volunteered that there was no reason I couldn’t begin driving. (This was never in doubt really, since my right arm and leg were under control, and my vision and cognitive skills were not affected, other than my initial medical decisions the first morning.)
I spent most of the first week becoming reacquainted with solitude, something I have enjoyed for 28 years, but something that doesn’t really exist in a hospital. (Clarification: all of my visitors, ALL of them, were welcome every time they came by and made my experience easier to live through. I’m talking about the wandering in and out of nurses and nurses’ aides and roommates and roommate’s visitors.) When you live alone, you get used to time alone. I missed that more than anything else while I was in the hospital.
The biggest challenge to resuming my normal life was and is endurance. Any level of physical exertion (and some mental exertion) left me exhausted. I had a vision of the day when “afternoon” and “nap” were no longer synonymous. (It sounds great in theory, until it stops being optional.) My recovery plan was to work from home the rest of June, taking naps as needed, and start going back to the office after the 4th of July. We have a weekly status meeting on Monday mornings, so after a particularly nap-intensive weekend, I decided to make an appearance at work for the meeting, and ended up staying at the office most of the day, after which I came home and napped for three hours. Having made the point to myself, I worked from home the rest of the week, where I managed to get the afternoon nap monkey off my back. (I believe that Dave Barry would find that “Afternoon Nap Monkey” would be a great name for a rock band. I suspect it would also be equally applicable in the improv world.) After another nap-intensive weekend (I believe I was conscious for multiple hours on Sunday, just not consecutively), I decided to head back to the office for half-days the following Monday, and ended up staying the full day. I have been back in the office full time ever since.
“So that’s a bunch of things that happened, John, but how do you FEEL?” I want to respond, “Tell my mother that I feel fine,” but I believe that few of you (including my mother, were she to read this) would get the reference. I describe my current state of health as “better, but not all better”. The dizziness and double vision I had in the hospital are mostly gone, except when I get really tired. The ataxia (inability to put my left arm and leg where I aim them) is fading, but still a problem. My right leg and the left side of my face are still numb with respect to pain and temperature sensations, which just feels weird. (Exercising my right leg causes no muscle burn, and drying it with a towel just tickles.) I had to buy slippers after I stepped on something that scratched my right foot, and didn’t know it until I saw blood stains on the floor. All of this is expected to clear up some time in the next 6-12 months, but the smart money is on 3-6 months. I started outpatient PT at the YMCA in Holly Springs last week. And yes, my therapist is a beautiful blonde woman. But if Independence Day weekend is anything like Memorial Day weekend was for therapists, I may just move to the YMCA this weekend!
I’ve been pushing myself to do the therapy exercises and walk as much as I can to retrain my brain and regain some lost strength in my legs. I’ve made the comment that somehow I seem to give off a vibe that therapists interpret as “suicidal 92-year old daredevil with Alzheimer’s”. You see, apparently I want to fall, just for the thrill of it, or possibly because I an trying to end it all. I can’t be trusted to remember that I’m impaired, and should I happen to plummet from my height of 6’4″ to the ground, I will shatter like a snowglobe, possibly ending it all. This is why from the beginning, every third sentence from my therapists has been “Don’t fall!” and every fifth sentence “Be careful!” During my second session, my new therapist called me both “a daredevil” and “impulsive”. Now, even considering 19 years of improv, I’m about as impulsive as continental drift, and people only call me a daredevil because my other senses compensate for my blindness and I have no fear. (No, wait, that’s why Mookie and WRay call me Daredevil. Never mind.) So when I asked her what she was talking about, she said, “I start to describe an exercise, and before I finish the explanation and get ready to support you, you’re already trying to do it!” Now understand, the exercises we’re talking about are, “march in place” and “walk slowly while turning your head to the left and right”, so I can see her point. I’m just so eager to get back to my job with Cirque du Soleil before they hire a new guy to “stand on the floor and tap your left foot on the bottom step”. Can you blame me?
Last night the therapist promoted me from using the walker to a loaner cane while she processes the paperwork. (Or as Elmer Fudd would say, I’m “completely off my walker”!) My elation over being able to stand on my own three legs (more or less) was tempered by learning that a sword cane is considered a “concealed weapon” in North Carolina, and it’s illegal to carry one in public. (I blame gang violence, what with all the drive-by cane-swordings in Durham ruining it for us law-abiding folks! I swear, if you outlaw sword canes, only foppish fictional British detectives will have sword canes!) Still, I have alternatives. (BTW, does anyone know where I can buy Penguin gas cheap?)
So that’s where things stand now. I apologize for not finding a way to weave Ewoks, or Richard Pryor, or an armored suit with nipples into the story, but I’m sure that any lack of flaws in the narrative can be corrected through horrible stunt casting. I believe that in the movie I will be portrayed by Meryl Streep with a Vietnamese accent. Or possibly the kid from Garner who won American Idol. (I take great pride in not remembering his name.)
Share and enjoy,
Tragic Setbacks and Selective Hearing (7/6/2011)
Had a pretty major setback today that threw me for a loop. From the beginning of this experience, the doctors and therapists have been telling me that I was likely to make a full recovery within 6-12 months. I found out today (and the therapist confirmed) that this estimate requires that the months be SEQUENTIAL, one after the other. This seems awfully inefficient. I had been planning on doubling or tripling up some of the months, maybe bringing in some temporary help from outside, and fully healing by my birthday at the end of August. Apparently, “it doesn’t work that way”, according to the therapist. I haven’t done the math yet, but I’m worried that doing things their way could take half a year, maybe twice that. Stupid stroke…
Disappointment aside, therapy this week has been a series of surprises and miscommunications all around. Last week, after I complained that the walker was starting to be more of a hinderance than a help, the therapist gave me a loaner cane (one of those orthopedic types with 4 legs) to begin working with. Using the cane was more of a workout than I expected, and I was much more tired than I had been with the walker. When I walked into my therapy session on Saturday morning, the therapist and I had the following conversation:
Her: I see you’re using the cane. What do you think of it?
Me: It’s fine, but it really tires me out by the end of the day.
Her: How much have you been using it?
Me: Ummm, I walked out of here with it Wednesday night. I walked back in with it this morning. In between, the walker has been in the back seat of my car, and I’ve been using the cane.
Her: What?!?! I told you to PRACTICE with the cane! No wonder you’re tired!
This is true. She did use the word “practice” when she gave me the cane. But there’s an old saying I heard somewhere: it’s not what you don’t know, it’s what you think you know that ain’t so! I’m still fairly new to the stroke game (it’s my first time, you see), so sometimes I make the mistake of assuming I know what I’m being told.
WHAT SHE SAID: I’m going to give you this cane to practice with.
WHAT SHE MEANT: Don’t fall. I’m going to give you this cane so that you can practice having a cane. You may look at it, but use both eyes, and do it while seated, so you don’t fall. You should continue to use the walker if you want to move from point A to point B. When you’re ready to practice (*Stop thinking about falling!*) you may attempt to use the cane to walk across the room, but only if you’re wearing one of those padded suits people wear when training attack dogs, in case you fall. But don’t. If you fall, I will take away the cane and make you use one of those mechanical wheelchairs with a light that blinks once for “yes” and twice for “no”, like Captain Pike had in “The Menagerie”. So you better not fall!
WHAT I ASSUMED SHE MEANT: Here’s a cane. Live long and prosper.
(As an aside, one important lesson I learned when I was 16 was this: when you assume, you make an “ass” out of “u” and Mrs. Talamo, my high school Spanish teacher. I’m not sure exactly why the burden falls so heavily on her, but she’s the one who told me this, so she would know, I guess. But she was a very nice lady. Please keep this in mind the next time you make assumptions.)
So, having gotten the equivalent of 300 years of “practice” with the cane, the therapist said, “OK, let me see you walk with it.” I then proceeded to walk across the room, tapping the cane on the ground in front of me, rocking it from the back legs to the front as I walked past, and repeating. When I got to the other side of the room, I turned back to face her. She looked at me, slightly aghast, and said, “You’re not even using the cane! No wonder you’re tired!”
Thus began an actual discussion of biomechanics and neurology that was both fascinating and helpful to me. (Feel free to skip over this paragraph and the next if you would be neither fascinated or helped by such a discussion.) My problems walking stem from a combination of three stroke-related effects: ataxia (difficulting sensing the position of my leg in space), muscle weakness (exacerbated by three weeks in a hospital bed), and vestibular problems (balance and equilibrium). Of the three, the balance problem seems to be the worst. My sense of “straight up” is off by a few degrees. It’s not that noticeable when standing still, but when I walk, part of the data the body uses to stay upright is corrupted, so I start wobbling, and when I try to correct, I’m correcting to the wrong point, so I stay unbalanced.
The height of the cane is set so that when I lean on it, it forces me to stand up straight (actual “up” vs. my corrupted sense of “up”). The result is that I’m more stable on my feet, and the brain cells assigned to handle balance in the post-stroke era are being fed correct data about where up actually is, so they can learn to stand that way naturally.
What I learned from this is that the job of the cane is not help me keep my balance when walking. It’s to help my sense of balance heal by teaching the brain what being balanced feels like. By not leaning on the cane, I wasn’t doing myself any good. Instead of moving from the walker to the cane, I had moved to walking unaided while holding a useless stick. No wonder I was tired.
So now that I know what I’m doing (cane-wise, at least), I’m starting to see a difference. Balance tasks that were impossible for me a week ago (standing on one foot, walking a line heel-to-toe) have gone from impossible to merely incredibly difficult in just a few short days.
The downside is that using the cane properly is unbeliveably slow, mostly because I have to consciously think about what I’m doing when I walk. (If you want a taste of what that’s like, go for a walk, and every time you step, think to yourself, “Left, right, left, right, left, right…” See how long you can go before you get messed up either counting or stepping. But don’t fall.) So now I move at one of two speeds: snail’s pace or paint drying. For someone who is used to walking faster than most people, the increase in travel time when walking is irritating. (I’m not someone for whom “getting there is half the fun”. Getting there for me usually tops out at about 4% of the fun on a good day. Nowadays, getting there is no more than 0.8% of the fun. And takes three times as long.)
So that’s the deal. Tomorrow marks six weeks since the stroke. I’m healing faster than I expected and slower than I hoped, but overall, I still have very little room to complain. The therapists are very pleased with my progress so far. And push comes to shove, I guess I am as well. (Please, no pushing or shoving.)
Share and enjoy,
A Little Vindication All Around (7/12/2011)
I fell this morning.
After weeks of planning, I managed to catch the surly minions of Big Rehab asleep at the switch, and, throwing caution to the wind, I hurled myself at my bedroom floor in a fit of defiance.
It was glorious! The wind rushing through my hair… the feeling of liberation as I spit in the face of Mother Gravity… the sheer sense of Empowerment at finally doing what I was born to do… all of it! As I glanced lovingly toward the oncoming floor, I was reminded of a favorite scene from The Hitchhiker’s Guide to the Galaxy, and thought, “I wonder if it’ll be friends with me…”
Sadly, my earlier decision to pick the Adamantium Razor pile carpeting came back to haunt me today. When I hit the floor, I shattered like a snow globe, and was killed. Future generations will look back on the incident and debate whether I “broke every bone in my body” or “cracked my skull open” or simply “broke my fool neck”. Parents will relate my cautionary tale to their children, and their children’s children, reinforcing the timeless lessons, “Be careful” and “Don’t fall”. My only consolation was that with my dying breath, I managed to say, “I wish I’d spent more time at the office!”, fulfilling a personal pledge to take that stupid cliché with me when I go into the Great Beyond.
Note: everything after the first sentence (not including this line and those below for all you paradox fans) is a lie. Here’s what really happened:
This morning, I was having balance problems. (Healing is not a straight line from “broken” to “fixed”. Setbacks happen.) One of my big challenges is standing on one leg, since it involves shifting my center of gravity to the other leg, and my brain’s still not sure where exactly that is. As I was getting dressed this morning, I was in a hurry, so I was trying to put my socks on from a standing position. (I had no problem doing this yesterday, and if I start to lose my balance, I can usually put both feet on the floor and go sit down to continue.)
Today I overestimated my ability to recover my balance. I got both socks on, but when I put the second foot down, I lost my balance. As I fell the tens of inches (feet even!) to my carpeted bedroom floor, I had the following profound thought: “Oh, crap.” Fortunately, I hit the floor with my butt, a part of the body engineered specifically to absorb the impact of being fallen on. My last thought as I lay there on the floor was, “Ouch.” I then got up, finished getting dressed more slowly, and went to work. Other than my back hurting a little bit (but only on one side, thanks to the weird lack of pain sensation in my right side), I am fine.
I offer a measure of vindication to my therapy team. I fell because I wasn’t careful enough to avoid falling. Rather than prudently assessing what I was capable of, I let myself go on auto-pilot, because I was in a hurry. It was a dumb move, and I paid a price for it. I need to pay better attention to the signals my body is giving me.
I also claim a measure of vindication for myself. I fell. Big whoop. I didn’t fall down the stairs, or off a cliff, or in the middle of the interstate. And the reason for that is I didn’t try standing on one foot at the top of the stairs, or at the edge of a cliff, or in traffic. Just like every other sane person, I try to take risks when I think the reward for success merits the price of failure. Unfortunately, since this is still all new to me, I’m still not sure exactly what qualifies as “risky” behavior — that is, actions that might hurt me. So I limit myself to things where I can’t hurt myself too much, even if I fail spectacularly. I don’t have a problem experimenting in an environment where failure comes cheap. I need to know what I can and cannot do, so I can plan accordingly. I learned something about being a recovering stroke patient this morning that I wouldn’t have if I avoided all chance of falling. I was immensely lucky that my stroke was so minor, but I don’t choose to live my life like I’m in a Final Destination sequel, and Death is out to even the score. In a leadership conference years ago, they taught us, “If you haven’t been yelled at for exceeding your authority, you don’t know what the limits of your authority are.” I feel the same way about recovery.
Finally, I offer a measure of vindication to all of you. I’ve chafed a bit at all the people telling me to “be careful”, because taken literally, it’s kind of an empty concept. Skydivers are “careful”. Firefighters are “careful”. People crossing the street are “careful”. I would never do the first two, and I do the third all the time. But I’m starting to realize that “be careful” is shorthand for “I hope nothing bad happens to you”. (Yes, that thought is just now occurring to me.) In that spirit, thank you, and I apologize if I’ve snapped at you.
(Note: I do not extend this sentiment to the statement “don’t fall”, which does imply that one of us is an idiot.) 🙂
Share and enjoy (and be careful),
Corny/Sappy Heart Pun Goes Here (7/20/2011)
Today I spent a few hours at the cardiologist taking a stress test. They’ve been planning this ever since I had the stroke back in May (eight weeks ago tomorrow — my how the time passes!). Originally they planned to do this while I was in the hospital, but at the last minute, someone seems to have gotten the idea into their head, “Hey, he just had a stroke. Maybe it’s not the best time to stress his circulatory system…”
If you recall from my earlier note, my cardiologist is a shape-shifter. I figured this out while I was in the hospital, because I was visited on two consecutive days by two different middle-aged Indian cardiologists from the same practice with the same name but different faces. A little sloppy on his part, not using the same face, but my experience in the medical community is that patients are not expected to be coherent enough to a) remember faces or 2) immediately assume “shapeshifter”. I mean, c’mon, what are the chances that there are two cardiologists with the same name?
Anyway, last week I went to the office for a preliminary appointment. This involved meeting with the physician’s assistant (a pretty young woman, naturally) so I could have my blood pressure checked for the 995th time this year (5 more times and I win a free blood pressure reading). After that, she said that the doctor would come see me shortly. Feeling bold, I decided to go for broke. I explained about the two cardiologists with the same name, told her I knew what a shape-shifter is (thank you, Deep Space Nine!) and suggested that she was in fact the same person, and was going to step outside the door, shape-change into the doctor, and come right back in. I even told her I would close my eyes so he/she could shape-shift without leaving to save time.
Now as everybody knows, when you accuse normal people of having superpowers, the normal response is to stare at the person like they’re crazy. (Kids, try this at home!) People who actually have superpowers respond by making a weak joke and immediately changing the subject. Her response to my accusation: “Ha ha, that would be something! I’ll go get the doctor.” A minute or so later, the doctor came in and began to review the medical data from the PA as if he hadn’t seen it, and asked me for the sixth time (actual count) whether or not I had had a heart attack. (Answers so far: no, no, no, “not that I know of”, “not with this heart”, and “no, thank you”.)
The cardiologist explained that since I’m still unsteady on my feet, he was going to give me a “chemical stress test’ (more on that later). He left, and a couple minutes later, the nurse came to lead me out, right past the doctor, who was very conspicuously talking to the PA, as if to say, “See, we are two different people!” (Note: this is exactly the reason why people continue to believe that Bruce Wayne couldn’t possibly be Batman: because they were seen in the same place one time.)
When I scheduled the appointment, I was given the instructions to prepare for the chemical stress test. The entire process is done over two days. The first day, the patient is instructed to deprive him/herself of alcohol, tobacco, coffee, soda, tea, chocolate, or anything else with caffeine in it. This is the “chemical stress” part. The next day, you come into the doctor’s office, where they “test” to see how many times you will let them inject radioactive isotopes into you and subject you to radiation (using something called a “gamma camera”, which can be seen during the opening credits of the old Bill Bixby/Lou Ferrigno Incredible Hulk TV series) without snapping. (I managed to get two of each.) In between, they attached a heart monitor and made me walk on a treadmill anyway, because otherwise it doesn’t qualify as “medicine”. I know it wasn’t part of the stress test, because I walk faster with my cane than the treadmill was going. During the breaks, I would go sit in a little staging area, where I would amuse the other patients so that they wouldn’t snap. (Mission accomplished, I think.)
I don’t get the results for a few days, but based on today’s events, I can deduce the following:
– At no point did anyone say, “John, we need to get you into surgery/the ICU/quarantine stat!”, so I’m probably fine.
– Based on the lab tech’s reactions (or lack thereof) after each step, I think it is safe to assume (sorry Mrs. Talamo) that I am none of the following: – cured – dead – undead – the Hulk – a Timelord – the Grinch – a robot (although “highly sophisticated android at the cellular level” has not yet been totally eliminated)
– Clark Kent can’t possibly be Superman.
Share and enjoy,
Autobiographical Filler (8/2/2011)
I’m not partial to autobiographies.
Don’t get me wrong — I read other things than science fiction. I love history. In college, my dad gave me two of the best books I’ve ever read: William Shirer’s The Rise and Fall of the Third Reich and John Toland’s The Rising Sun, histories of Nazi Germany and Imperial Japan, respectively, written shortly after WWII. Both books are over 1000 pages and are fascinating, in part because their scope allows them to go from one exciting event to another, following the action wherever it goes.
Biographies are harder because their scope is limited. The author is confined to the life and times of one individual. Most people are worthy of biographies because of some thing or event that only consumed a small portion of their lives, and the biographer comes at that from as many perspectives as necessary to fill a book. When confronted with the Boring Days, the biographer’s tools are more limited — talk about others around the subject, foreshadow the Interesting Times to come, or simply skip over them.
Autobiographers compound the challenges of the biographer with the lack of time and distance from events. People’s lives are far more interesting to themselves than to other people, and there’s often no escape from the single perspective of the author/subject, and what they think is interesting to others. Many autobiographies never leave the Boring Times, especially autobiographies of artists, since the process of creating art is often far more boring than the art itself.
This is going to be a very autobiographical note. We’re now about 10 1/2 weeks out from the stroke, and I’ve entered the Boring Times where progress toward recovery is slow but steady. As Weird Al Yankovic once sang, “The stars predict tomorrow you’ll wake up, do a bunch of stuff, and then go back to sleep.” So for those who don’t see me on a regular basis, this is what you’re missing.
– The stress test came back normal. This is good news. Sadly, this means we say goodbye to the shape-shifing cardiologist and his minions until late September, when they want me to come back to “check the blood pressure in my legs”. I would have assumed you could do that anytime with a cuff around my thigh and a stethescope, but I thought the stress test would involve more stress than doing without caffeine, so what do I know?
– After a particularly long walk in the mall parking lot, I finally caved in and got a handicapped placard for my car, officially declaring myself to be a Helpless Invalid and a Mere Shell of a Man. (Note: this is not a general condemnation of the handicapped. Many of them lead productive lives. In fact, I often see them getting in and out of their cars, and most of the time, you can’t even tell they are impaired. Some of them are downright young and vibrant!) I use it at work because it cuts the hike from the parking lot in half, but over the last couple weeks, I keep finding empty spaces close to where I’m going. This has created a bit of a moral dilemma: who do I risk inconveniencing? If I take a handicapped space, I risk forcing someone who’s far more disabled than I am to park elsewhere. But if I take the other space, I run a far greater risk of inconveniencing someone who can’t use the handicapped space and has to park further away. I’m still mulling this one.
– I’m right handed, and I have to carry the cane in my right hand. This means when I’m walking, I have to do everything else wrong-handed, or come to a complete stop. When you hear me talk about “perpetual minor inconvenience” and how lucky I am, consider that this is one of my biggest stroke-related challenges. Upon reflection, “third arm” is really the mutation that would be most welcome right now. Pyrokinesis is overrated, anyway.
– In the aftermath of my fall a couple weeks ago, I had a small epiphany. (Or perhaps, since I’m putting this on Facebook, it qualifies as an E-piphany. If I were using a Mac, I believe it would be an iPiphany.) (Aside to my improve friends: I still have no points to lose.) When being taught to drive, one of the important concepts you learn is the space cushion — leaving room between you and the car in front of you, so you have time to react to his sudden movements. I realized that I have been tailgating my recovery. Each time I get a little bit better, I’ve been trying to capitalize on it by doing a little bit more. That’s great if I’m better every day, but some days I’m worse than yesterday, and if I’m not careful on those days, I find myself doing things I’m no longer capable of doing. Hence, the fall. My other revelation was that if I had gotten drunk more (or at all) when I was in college, I’d have staggering skills that I could fall back on in times like this.
– My sister’s husband is a physical therapist back home. Mike has been an invaluable resource to me since the first day, in every case either confirming or predicting what the doctors and therapists here tell me. He has suspected that part of my standing-in-a-rowboat unsteadiness was not stroke-related, but was vertigo that was either induced or exacerbated when I fell in the hospital back on Memorial Day weekend. This weekend, he and my sister and nephew came through town on their way back from the beach and he confirmed his diagnosis through tests. I’m no PT or doctor, but here’s how I think he explained the situation:
“The brain sees balance as a series of ones and zeroes. When the brain and inner ear love each other very much, the inner grows these crystals which send neurotransmitters to Cecelia, the woman in charge of equilibrium. When you fall, sometimes these crystals escape, and send bad neurotransmitters which make Cecilia dizzy. The inner ear then starts sending the brain 2’s, and thetas, and the occasional schwa, which causes a desire to fall. We can fix this by holding you upside down and shaking you like a Magic 8 Ball until the broken crystal falls out of range of Cecilia, who will then spend the next few days eating Ben & Jerry’s ice cream until she grows a new crystal.”
I may not have all the technical details correct, but that’s the jist. So Friday night, Mike did a series of movements he called “rolls” (no rolling was involved) to move the dislodged crystal out of the inner ear, so it would dissolve and a new crystal would grow in its place. He said the process would take 2-4 days. In the meantime, I had instructions not to sleep on my left side. So, naturally, all I want to do in life is sleep on my left side. Nothing else matters.
There’s an old saying, “It’s always darkest before you drown.” Or something like that. It means that Gandalf would have saved Frodo a finger and hundreds of pages of Sam’s whining if he had just FedEx-ed the One Ring back to Mordor with a Post-it that said, “This fell out of Mount Doom. Could you drop it back there? Thanks! ~G~” But it doesn’t work that way. I think when I told Mike I wanted him to “get rid of my balance problem”, he might have missed the last word. Monday I felt like someone had taken my rowboat, shoved it into a bouncy castle, and put the entire thing on a Tilt-a-Whirl. I checked the Magic 8 Ball, but it said “BALANCE CLOUDY – ASK AGAIN LATER”. Today I’m starting to feel better.
– Therapy proceeds apace. (I don’t know what exactly that sentence implies, but it sounds cool, so I’m leaving it.) My official status is that I’m doing somewhere between remarkably well and amazingly well. I’m still using the loaner 4-point cane (the doctor that reminded me of Bob Kelso has approved the prescription for my own cane, but has neglected to actually write it so I can get it filled). My therapist tells me that my therapy today is more like that of an orthopedic rehab patient than a stroke patient, because balance and leg strength are really the only issues I still have.
– The trade-off is that I’m improving because I’m pushing myself, and as a result, I’m constantly tired. I’m struggling with a conflict between what I know and what I believe. I KNOW that I experienced a severe medical condition (part of my brain died) and that there is no substitute for time in healing that damage. But I can’t shake the BELIEF that if I don’t keep pushing myself, I’ll never get better. And while that might make me sound like a reckless doof (to quote one dear friend), “pushing myself” means running the vacuum cleaner. Or having a friend help me move boxes into storage, and doing maybe 5% of the lifting. Or going to the mall to shop for a new refrigerator. Or walking on the treadmill for 3 minutes at almost normal speed. All of these things have wiped me out over the last two weeks, and they were all different days. It’s amazing to see the difference in perspective. My therapist made the comment last night, “You’re cleaning the house. You’re working full time. You’re going about your business as if nothing happened!” And yet I feel like I’m barely doing anything, and being exhausted by it. My pre-stroke life was that of a couch potato. I’m not sure I can do less without moss starting to grow on me.
On the plus side, I’m going to feel like Usain Bolt at Cirque du Soleil when I can finally go walk around the lake or hit the gym. And the plus side is where I choose to live. I am getting better. I am basically able to live my life as if nothing happened. I had a friend tell me that he was “inspired” by how I was dealing with the stroke, and while it still feels weird to be “inspirational”, I’d much rather be a positive example than a negative one. The same Weird Al song I quoted at the top has a line that resonates with me now much more than ever before:
“Laughter is the very best medicine. Remember that when your appendix bursts next week.”
Share and enjoy,
A Birthday Update (8/30/2011)
Thank you for the kind thoughts and birthday greetings today. They are much appreciated.
Turning 50 as a milestone means very little to me. As I responded to a post earlier, I feel 40, just like I did when I was 40, and when I was 30, and when I was 21. I’m in worse shape than when I was 21, but better shape than when I was 30. Being 50 years old carries no particular stigma for me. In fact, it carries no discernable meaining. I am (as I have been for half a century) three weeks younger than President Obama, two weeks older than Dan Marino, and three weeks older than Heather Locklear. Marino’s been an “old man” for over a decade, Obama’s still a “young and vital” man who’s gone gray in 3 years, and Heather doesn’t look her age, except she looks phenomenal for her age, except when she doesn’t. Consequently, I refuse to feel either old or young. Either way, it’s too much like grading on the curve.
Last Friday was the three-month mark since my stroke, and after a bit of a slow patch, my recovery is on a nice pace. It’s been a while since my last update, but that’s largely because nothing interesting was happening. Recently, however, I became the Chief Medical Officer of the entire rehab process. Here’s the backstory:
My physical therapy is prescribed in chunks of 4 weeks. Every 4 weeks, I am evaluated to determine whether I need more physical therapy, and if so, the physician in charge of my rehab, the one I call Dr. Smiley, writes a new prescription. (Note: I dubbed him Dr. Smiley while in the rehab hospital for his sunny disposition. If you’ve read my earlier notes, he’s the one that reminded me of Dr. Kelso from Scrubs. I have little positive to say about him, since he’s the doctor that tried to kill me by ignoring my low blood sugar episodes until I took over my diabetes treatment from him. But it’s entirely possible that he’s a fine physician when it comes to treating 92-year-old Alzheimer’s patients, so I just refer to him as Dr. Smiley.)
Anyway, when my last evaluation rolled around, the therapist tested my walking and balance. This was right after my brother-in-law did the vertigo treatment on me, but before it kicked in. I sailed through the walking tests that day, but when we got to the balance tests, I had what I can only describe as an anxiety attack, and my blood pressure went through the roof. (I blame the therapists for subconsciously making me anxious about falling.) Since we couldn’t get my blood pressure back to normal quickly, my therapist decided to suspend further PT until the doctors approved it.
The therapist and I attacked the problem from two directions: I made an appointment with my doctor (who I actually trust), and she sent her notes to Dr. Smiley (who prescribes the PT sessions) so he could evaluate me.
(Interesting aside: the PT gave me instructions to relax and take it easy, since the BP spike appeared to be triggered by mental stress rather than physical stress. Two days later, I received a letter from the IRS, helpfully reducing my stress by indicating that I owed them $11,000 dating back to 2009. The actual amount owed was approximately $13. But that’s a story for another day…)
I went to see my doctor the following Monday. He adjusted my medicine to bring my blood pressure back down. And then we had the following exchange:
Me: Everyone has been telling me I need to relax. Slow down. Take it easy. I’m a software engineer and a couch potato. If I become any less active, I’ll be inert.
Him: Actually, I’d like you to become more active.
So my doctor asked me to start walking on the treadmill at the gym. I started at 15 minutes, and worked my way up to 20 while I waited to hear from Dr. Smiley. The medicine worked and my BP dropped, while I waited for Dr. Smiley. Finally, that Friday I called the therapist. The office was closed, and I left a message. The following Monday, the therapy office called me back, and we had the following conversation:
Me: I’m calling to find out what [Dr. Smiley] needs me to do so I can get back into rehab.
Her: Let me see. (Pause) It appears that he has written a new prescription for 4 more weeks, so as soon as your doctor says you’re ready, we can restart therapy.
Me: Ummm, my doctor actually told me to get more exercise, so I don’t think he’d object to me restarting therapy.
Her: OK, we have a slot tomorrow night.
And with that, based on my unsubstantiated claim that I was ready to go back, and Dr. Smiley’s patented abrogation of responsibility, I went back to rehab. And that’s how I became the Chief Medical Officer, the highest medical authority involved in my recovery.
And it turns out I was right. (Naturally! I am CMO, you see.) During my two week absence, the walking started to strengthen my legs, and Mike’s treatment radically improved my balance. By the time I got back to PT, I was much more steady on my feet. Last week I got promoted from my 4-point cane to a regular cane. I’m up to 25 minutes on the treadmill at almost full speed and a slight incline. My doctor’s prognosis is that at this rate I’ll be able to walk without a cane within 4 to 6 weeks.
The other symptoms are still with me. The numbness in the left side of my face has started to lessen, which presents its own challenges. Tuesday I got a haircut. The girl who cuts my hair was using a spray bottle to wet my hair. The water was cool, but not cold, when it hit the right side of my scalp. When it hit the left side, it was like she had a bottle of Spray-on Headache (“Apply directly to the scalp!”) Everywhere the water hit hurt, not like a burning or stinging, but from the inside, like a massive headache. When I mentioned it to my doctor, he was very upbeat, either because it’s a sign that the nerves are getting through to the brain again, or because he delights in my suffering, I’m not sure which. My right leg still can’t feel pain or temperature from the waist down, which means I have to be extra careful with it. I really hope my leg doesn’t develop this same irrational pain sensation as part of its recovery. (If it does, though, at least I’ll have the cane to go with the Vicodin addiction.)
That’s pretty much the scoop. I still have occasional days when I crash on the couch for 3 hours, but they’re getting less common. I have developed a quite rational fear of small children, who are prone to walking one direction while looking another, often back at Mom as she shouts, “Watch where you’re going!!” (Note to self: invent a way to harness the Brownian motion of small children as an energy source.) (Question to self: is it “clean” energy if there are grubby toddler fingerprints all over it?)
Share and enjoy,
Status update (9/21/11)
“Marketing 101: Know your customer. The process of being patient is far too inefficient and poorly thought out for general day-to-day usage. The sheer amount of waiting around necessary imposes an excessive barrier to entry for the primary target demographic (impatient people). The person who develops a quick and easy method for instilling patience would be handsomely rewarded, I’m sure. As the Klingons say, “Patience is a dish best served NOW!””
When the Silence Stops (11/7/2011)
It’s been a while since my last update. The reasons for this are many and complicated, but at the core are two simple truths:
1) It’s hard to make fun of things going well.
2) It’s hard to make fun of things not changing.
And that pretty much sums up my current state of recovery.
On the “going well” side, I finished up physical therapy at the beginning of October. I had been doing well in PT through September, well enough to liberate myself from the cane, but just not quite well enough to “graduate”. Most of my PT sessions were weeknights, so how well I did was influenced to some extent by the kind of day I had had. So I had a rare Saturday morning session one week right before my periodic re-evaluation, and I was just zipping through the exercises. That afternoon was gorgeous, so got a little ambitious and decided to go for a walk. (Note: there are approximately 4 weeks out of the year when I am willing to go outside voluntarily. That week was one of them.)
There’s a small lake near my house with a 2-mile long paved trail around it. Before the stroke, I could walk the trail in a little over half an hour (my best time is 32 minutes). That Saturday afternoon I grabbed my MP3 player full of cheesy 80’s pop music (or as I call it, “the music of my people”) and took off. Not really paying attention, I just walked along in time to the music, and finished the 2 miles in 34 minutes. After that I went home and collapsed.
My next PT session was that Monday night. After sleeping most of the afternoon on Sunday, I felt pretty good Monday, so when the therapist started doing her evaluation, I was even doing the things I always struggled with (standing on one foot, walking heel-to-toe). She asked me what I had done over the weekend, and I told her about my walk on Saturday. She looked at me and said, “You walked two miles with no assistance on uneven pavement at better than 3 1/2 miles an hour? There’s nothing more that rehab can do for you. You’re done!” And that was it. I had my final follow-up with Dr. Smiley’s minions at the rehab hospital, and they announced that I was making an “amazing” recovery.
But that’s only half the story. I had been predicting that the time would come when I was the only person who could tell anything was wrong, and I’ve reached that time. While I can “do” much more than I could when I left the hospital 5 months ago, I “feel” pretty much the same. The ataxia in my left leg is mostly gone, to be replaced by a perpetual feeling of muscle fatigue in both legs, like I’ve been doing lunges all day. The pain/temperature deficit in my right leg hasn’t improved at all. And the same deficit on the left side of my face has mutated into a pain reaction to cold (like the feeling of wet skin in freezing air) and a headache-like dull ache in response to cold water.
This appears to be be the beginning of getting better. I explain it like this: a small part of my brain took a sudden early retirement. The remaining healthy tissue has been scrambling for months trying to absorb the job of the retired brain cells. They’ve caught up to the point where they’ve figured out how to answer the phone, but still don’t know what to say, so they just blow an air horn (pain) in response to any request, in the hopes that the rest of my body will remove my face from the abnormal stimulus, i.e. stop calling. Sadly, this works up to a point.
I’ve talked to the doctors (both the rehab doctors and the neurologist) about what I can do to speed up the recovery of the sensory deficits. After careful deliberation, the consensus answer is “nothing”. I’m still outside the 6-12 months necessary to even expect recovery (think Thanksgiving 2011 through Memorial Day 2012), so all I can do is wait to see if it improves.
Which leaves me with a conundrum: these are the same doctors whose mantra for the last 5 months has been “be careful; take it easy”. I ignored that advice, and got better faster by pushing myself to walk and exercise. So now their advice is “there’s nothing you can do, just wait”. Based on their track record so far, I’m considering an aggressive regimen of cutting and burning my leg to restore the feeling.
Predictably, none of the doctors like this idea.
So that’s where things stand now. This past Friday, I had my first session with my old personal trainer to try to improve my status from “stroke patient condition” to “couch potato condition”. As it so happens, my trainer is a retired Marine Corps drill sergeant (maybe Army — I have friends who were in both, I know they would claim there’s a huge difference, but not from my perspective right now). So my first session was so strenuous that it drove me back to my cane over the weekend (when I managed to stay awake). This is the kind of stuff that’s hardest for me: not knowing whether my weekend collapse is evidence that I overdid it or evidence that I need to be working this hard. The trips around the lake actually made me feel better after a day or two. I have till Wednesday to figure out whether my workouts are premature or overdue.
Wish me luck.
Share and enjoy,
P.S. I get the question “Are you back at work yet?” a lot. I got out of the hospital June 15th, a Wednesday. I started working from home the following Monday, and went back into the office full time on June 27th.
Status update (11/26/11)
“Today begins the “six to twelve months” the doctors have been talking about since May. I expect to be completely recovered any minute now.”
Status update (11/26/11)
“Hmmm. Still nothing on the recovery front. Must be my brain’s way of punishing me for forcing it to write papers the night before they’re due. At this rate, I might not be 100% cured until 11:59 tonight.”
Status update (11/26/11)
“Just a few short hours left before I experience complete recovery, and I’m all a-tingle with anticipation! Ironically, the thing I’m looking forward to most is an end to the annoying tingling sensation in my face and legs.”