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Journaling the end

Two weeks ago I had a serious seizure, was hospitalized for three days and diagnosed with adult-onset hydrocephalus. This explained my inability to maintain balance, the short seizures I'd been getting, and a bunch of other things. It is incurable, surgery can make it better but isn't much good at repairing existing damage, and can only slow down the inexorable progress toward dementia.

 

I cannot stay awake long enough to do any real work, nor do any writing. I can access and use existing information, I can acquire new information and use it, but creativity has simply stopped workiing. I have several novels underway, and I can't figure out what to do with the characters next. One couple is getting married soon so the baby can be born before the wedding, another couple is dealing with an assassination attempt on one of them, I've got a busload of musicians on tour in 1970; they're stuck in Mobile, Alabama, because I don't have any idea what comes next.

 

I can keep two executive coaching clients, and that's it. One project I've already turned over to the client's outsourced accountant plus my own VA; the other I will offer up to a friend, former top-tier global management consultant. The number of domains in which expertise is required is long.

 

I intend to keep journaling until I can no longer write. Ask my anything you wish.

137 REPLIES 137

Two weeks ago I began a precipitous slide, becoming unstable, experiencing expressive aphasia, being unable to stay awake, short of breath, weak, in seious pain. Immobilized, unable to handle any of my activities of daily living, zero appetite, I visited Emergency Departments four times before I was taken by ambulance to a hosital where I expected to die.

 

I was bedridden, glowed in the dark from medical imaging, could not speak, could not think, in agony 24/7, helpless and confronted with institutional incompetence: the most concerning symptom was vertigo, and the medication for that had been copied as "Up to three times per day as needed." I never got any of the medication because I was unaware that the dosing orders I knew (one pill three times per day) had been lost in translation. I didn't know I had to ask specifically for each pill. My neurosurgeon couldn't be allowed to adjust the shunt because he was from the "S" tribe. while I was in a "T" tribe hospital.

 

I actually slipped into non-Alzheimer's dementia for most of a week. Hell is real; the end is near.

Bill, I really feel for you. And I have no words I can say to you to ease your pain, or make you feel better because they are only words. And what you want and need right now is action. For someone to physically do something to actually help in some small way. 

 

But I see a glimmer of hope as you are able to write coherently. So you must be making some steps forward (however small those steps may be.) Is there someone who can intervene on your behalf when things get bad. Someone who can find out what medication, tests or anything that should be done and are not getting done? If you like this other doctor who has privileges in another hospital you have the RIGHT to be transferred to that other hospital. 

 

I will continue thinking about you and praying for a speedy recovery.

Kathy, your thoughts always cheer me. I'm doing adequately. Perhaps not by others' standards, but certainly by mine. I try to learn something new every day, and the chances to do so with fellow professional freelancers are unlimited.


Bill H wrote:

Kathy, your thoughts always cheer me. I'm doing adequately. Perhaps not by others' standards, but certainly by mine. I try to learn something new every day, and the chances to do so with fellow professional freelancers are unlimited.

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Bill, as I know you know, the hardest lesson to learn is that learning is a continual process.


 

Just bumping this thread, hoping we hear from Bill again soon.


Phyllis G wrote:

Just bumping this thread, hoping we hear from Bill again soon.

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If we don't hear from him soon, maybe Wendy or someone else who has frequently communicated with him will check in with him, his wife, and/or his daughter and be able to update us.  

I just sent Bill the following ...

 

"Bill, your friends and fans are worried as you haven't checked in for awhile. May 27th was the last word from you... Are you home now or still in and out of hospital?
Has the idiot medical profession managed to communicate with each other? For heaven's sake - your neurosurgeon should have final say on meds, shunt, etc. etc. and **bleep** the rest of the them.
Please at least let me know - I'll share your message if it is too much for you -

Love 'n hugs 'n lots of Aloha ....W"

 

If I hear anything back I'll post!

 

Adding: really, U. dam with an n on the end is now bleepable??????

Thanks Wendy.  Know we all appreciate!  

 

Re. D--- oh for pity sake!!!  Well, I guess there's always pig latin.

Thanks to all. I got enough better that I could see neurosurgeon and get shunt adjusted. Adjusted, but on revisit it was found to be infected. Surgery to remove shunt, IV antibiotics for two to four weeks, inpatient physical therapy now for another two weeks. Hope to be able to walk unaided in July.

Yippee!  And thank god they caught the infection early. I'm sure you're beginning to feel like an overused pin cushion ... Those IV antibiotics are a lifesaving PITA.  They wear you out physically - even more than the darn infection does.

 

Bill, when this is all over and you're healthy again we want to see pics of you walking.  Perhaps even of you jogging.  😉  Better than that - how about 2 photos - one walking and the other of you back to writing the current in-process book.

 

HOORAY YOU!

Great news.  It's definitely a marathon and not a sprint.  You continue to be in our thoughts and prayers.

Thanks for the thoughts. Infected shunt removed surgically June 10; shortly thereafter entered inpatient rehab. Taking physical and occupational therapy, should be discharged June 25. Third brain surgery in August, to install replacement shunt.

 

"How to start a business" is done, all except cover. Working on a piece of fiction I revived from three or four years ago, sort of a group coming of age story.

Bill, checking in to see how you are doing.  You are about 2 weeks post discharge; are you continuing to see/feel improvement?  

 

Have they given you a date in August for the replacement shunt surgery?

 

Yippee on completion of your biz book and on reactivating the coming of age book. 

 

Your turn to post ... or I'll start harassing your Skype.  🙂

I completed hospital rehab and was discharged about two weeks ago (I think); My balance is completely screwed, Occupationl therapists are humorous in that they refuse to accept that nothing they do will make a difference. The physical therapists are all sure that if I just do the right number of the right exercises on a balance pad they can cure me. I'm incurable.

 

Passed my last job off to another former top--tier management consultant yesterday. There are five or six of us who work with smaller businesses. I'm done; I'll retain my memberships on UW and G***. Infectious disease specialist took me off IV antibiotics today. The coming of age piece is at about 125 pagess and 37K words. I am itching to get on to the new Frankenbuzz Detective Agency.

Something tells me you get a kick out of flaunting your irrascable incurability to all those guys.  Wow - a couple of weeks without hospital visits and white coats.  You're reveling in that one -

 

You're cranking at 37k words and as you're " itching to get on to the new Frankenbuzz Detective Agency" story I'm gonna bet the next 35k words are high on the agenda. 

 

I know you feel better about being able to pass clients off to people you know and trust to do a good job. And you'll be there for advice if needed.

 

 

 

This morning was the final conference call among me, the final remaining client and the woman who's replacing me. Saturday the physical therapist visited, it was my best day in a few years, by Sunday my balance abandoned me and remains MIA. Sunday night I fell, left hand out of commission for a month or two. Lost all progress in balance. I miss working with clients, but I don't trust myself to deliver value worth what I need to charge.

 

Do you know how hard it is to type Alabama with your left pinkie is in a splint?

Bill, I whole-heartily commend you and your ability to share humor amongst the challenges! 

Kathy posted https://community.upwork.com/t5/Coffee-Break/Shout-out-to-Bill-H/td-p/62781

 

I'm linking it here as Bill gets notifications when this thread has comments added. 

 

Guys, please use this thead for the above reason.  

 

Bill, has Alabama become easier?

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