Mar 23, 2013 6:53pm
As we attempt to get into a more normal rhythm of life at home, poor Julia has been reluctantly snowed under by her work commitments (and her stroke carer commitments continue!) so, sadly, we may not see her around here until her deadline is over..
Meanwhile, my brother Dom and I have been pushing as hard as we possibly can on my exercises, trying to get as far along with them before Dom goes home to his family in Australia. We have managed a few personal bests and, thanks to repeated leg exercises, my first standing pee since Christmas. (Hallelujah, amen). Now that I am back in the leafy quiet of Park Merced, we have been going outside in the bright winter weather and walking around the block, me doddering along with my old man style quad-cane, being shadowed by an ever watchful Dom with a wheelchair, in case I have to tap out, which thankfully hasn’t happened yet.
It is amazing how fraught with drama a simple walk around the block can be, when your balance is completely shot, and you don’t have a functioning calf or ankle muscle. Every undulation of the paving stones is a mountain, every subtle puff of wind is a gale. I must have walked this block hundreds of times before my stroke and it never seemed remarkable, but with my newfound topographical sensitivity, I can see that whoever paved the northern side were utter maniacs, thoroughly drunk or both. Every stone is set an an angle to its neighbor, festooned with foot-tripping evil tree roots and sinister leafy debris.. I would like to blame this veritable DEVIL’S PASS for the time it takes to walk the entire block, but the fact is that I am slow even on the smooth parts. It takes me over an hour to do the circuit, one shuffling inch at a time.
One of the strange parts of having a stroke is how alien your own body becomes. My arm, my leg, do not seem part of me any more. They do not do what I want them to do and even on the rare situations when they cooperate, there is still a sense of strangeness simply because I cannot feel them. When I manage to make my arm raise itself, it mostly has the jerky aspect of a theme park animatronic, or one of those videos you see of a creepy robot built by a Japanese university. And if a sense of alienation from your body is strange then consider not being able to make sense of what has come out of your own mouth. Thankfully this is not something that I wrestle with now, but my memories of a time when it was common are still very unsettling just the same.
In the first two or three weeks after my stroke it seemed that I was suffering from multiple personality disorder; sometimes I accurately remembered the sequence of events that led me to hospital and at other times I supposedly claimed myself the victim of a violent assault, or at other times a car accident. This is strange to me now, because I have a very vivid memory of being physically paralyzed by degrees, which ended in a life or death crawl across the carpet for the phone. I remember that I was not exactly sure what was happening to me, (maybe an aneurysm?) but definitely something serious, and I certainly didn’t think I had been hit by a car in my own bedroom.
In most cases I only hear about these other versions of me; I have little or no memory of them myself, but I often wonder what was going on inside my mind in those early weeks.. The first week was spent in the ICU, the intensive care unit, and of course it is impossible to get any sleep in there. Unlike a regular hospital room, where they sometimes turn down the lights and let you sleep, the ICU is more like being on the bridge of a submarine at battle stations. It is that part of the hospital where you are being monitored very closely, 24/7, and there is consequentially no such thing as sleep.
For a full week I had pipes up my nose and electrodes attached to my body and a constant stream of people rushing into prod or poke me, inject me, take readings and debate them at length as if I were not there. I was sleep deprived, God knows what manner of sedatives I was on, and of course there was the little matter of a swollen brain.. All of this makes for a very hallucinogenic state of mind, and my memory of it is of being in a fog which would sometimes clear, and lo and behold, some dear loved one was sitting at my side. We would chat briefly before the fog would sweep in again and take me away.
According to MRI and CAT scans, my stroke happened deep in the brain, almost at the brain-stem itself, at a region called the thalamus, which is often described as being a ’relay station’ or ’switching center’. It has a secondary role related to movement and that is why my physical recovery will be quite slow. It is one thing to be paralyzed but it is another to lose the sense of touch and the sense of body awareness, of ’proprioception’. When I close my eyes I cannot accurately say which way my limbs are oriented. This means that my balance and movement have been inhibited quite a bit. My stroke is quite ’dense’ as my physical therapists would say.
But, in the big scheme of things, I have been unbelievably lucky in where the epicenter of the the stroke actually occurred. There is a lot of valuable real estate inside our brains; areas that store our memories of our loved ones’ faces, or of life changing events from our past. I am lucky that the damage was not in a part of the brain that stored my sense of self, or any one of hundreds of places that makes me ME; those seem to have been spared.
I am still me.
22 thoughts on “I Am Still Me”
And the real you writes eloquently, entertainingly, humorously and very humbly!!Thinking of you all the time Jamie.Go man go!!
much love from London,Phil + Lisa
— Philip Vallentin, March 23, 2013
Attaboy Jamie! Keep going! “Today you are you, that is truer than true. There is no one alive who is Youer than You!” – Dr. Suess
— Rhode Montijo, March 23, 2013
So glad to hear that you are still you because you are the best! Glad to hear that you are making progress. We miss you. You’re missing some classy story outings to Sizzler and the Olive Garden. Also some funny videos that Garett is really into making now. Sending you guys love.
— Samantha Wilson, March 23, 2013
Jamie, what an eloquent and illuminating description of your stroke and your current state of being. I feel like I actually understand what your experience has been like. (I found myself gripping and rubbing my head while reading it!)
I can only imagine how frustrating the loss of proprioception must be, as well as the slow pace of recovery. It sounds like your stamina and patience are up to the Herculean task set before you, however, and that is so very heartening!
After your brothers go back home, and when Julia is very busy with work, I hope you’ll grant some of your old pals the opportunity for a shamble around your block with you. (Now that you can stand up for pee, that is. ;)
— Stephanie Hornish, March 23, 2013
Obviously challenging times when half of your body is so disconnected from you, but clearly your mind is as sharp as ever and you’re way past the Sarah Palin word salad period. Good to hear that Team Jamie is keeping you busy and moving. Keep up the good work!
— Anson Jew, March 23, 2013
Keep up the great recovery work Jamie. Individuals with spinal cord injuries sometime have proprioception issues too. I heard that Aqua Therapy helps improve this.
— Deborah Schutz, March 23, 2013
Thank you once again Jamie. I have been wondering how you were getting on. Certainly the part of your brain controlling communication skills is quite good, because you are communicating well.
Continue your progress. Keep those near and dear close.
— Lou Toft, March 23, 2013
You are still the most amazing person to me. I love you more than ever and am in awe at what an incredibly beautiful person you are. I am so thankful to have you in my life.
— Julia Lundman, March 23, 2013
Thanks Jamie. Stephanie said it best – I feel like I understand what you’ve been thru and where you are more than I would have ever expected I could, your honesty and eloquence are humbling.
And also like Stephanie, I want to get in line to accompany you on your walk – or anything else for that matter – whenever that becomes an option.
Love from Muffy & Simone too,
— Scott Tolmie, March 23, 2013
My dear iron-willed and lucid-minded boy,
What awesomely uplifting and compellingly readable material you’ve been sending us, with its insights into your internal and external (by which I mean your mental/spiritual and your physical) conditions. I hope you can keep it up. I agree entirely with those such as Nicole Grindle and quite a few others – myself included – who’d like to see you and Julia turn your record of your shared experiences in all this into a best-selling book (what a blessed brain-insulted and stand-up-peeing young rehabilitationer you are, by the way, to have Julia beside you and able to write as in her latest).
In a minor key, to be sure, I’ve found myself well able to empathise with some of your latest. After my surgery last August, my memory of the ICU experience was eerily like yours, incl a period of quite going off my chump. And up to the time of present writing, though the cause was different, the long period of trouble in my right leg has me still trying to get its neuro-muscular machinery to do what my brain is trying to tell it. Small potatoes, I know, compared with your overflowing plate. But what comparabilities there are ensure that I have you in my mind pretty constantly as I go about the business of my own day. And it’s with bags of pride in you, and your lovely Julia, and the succession of Bros-in-support that I enertain those thoughts; also with heaps of love from Wendy and self.
— Rob Baker, March 23, 2013
By jingoes you write well. I mean for a chap – who as I recall piss farted around English and single handedly made english lessons a piss take of Mr Darcy and Elizabth etc;
You can sure belt out a fantastic narrative.
Great to hear of progress, but equally or more impressed to hear of your dogged determination and joy at the being you – ya stubborn old bastard.
Now you better get back to watching Rocky and Armageddon – Go team Jamie. PCBD and L
— Peter Lawlor, March 24, 2013
I look forward to the great Baker art and books that come out of this experience! I am heartened to read your great writing again my friend! Love Jim
— Jim Capobianco, March 24, 2013
So good to hear how determined you are and how brave in the face of all this…..but I guess that’s to be expected knowing you. It really is inspirational and it’s a privilege to read each of these updates. Now, I will attempt to give you a little chuckle. pinot grigio pashmina n. Like a bacardigan, but for posh birds in Wilmslow or Alderley Edge; a warm yet invisible shawl consisting of several glasses of white wine.
— Jonathan Rosenthal, March 24, 2013
Well, I am so glad that you are still you. And I am so glad that you seem to be keeping a positive outlook in your situation. I can’t imagine how I would have handled things myself.
Such an inspiration you are! Ooops, for a second there, I was Yoda. Love and Cheers!
— Tom Rubalcava, March 24, 2013
Nice writing. I’m preferring to read your journal than any published newspaper. You I trust.
— Peter Sheehan, March 25, 2013
Oh, Jamie. I am so glad that you are still you! And I am thrilled that you are able to navigate the Devil’s Pass that is your neighborhood, even if tentatively.
Keep on pushing, man. You are so strong and inspirational. Thanks for including us in your journey.
Hey, my mother picked up a street dog in Mexico a few weeks ago and decreed that she had found my new dog! Then she shipped him to DC and then to us. We got him last Wednesday and he is amazing. So smart and sweet and the perfect size at 31 pounds. Teo, short for Teotihuacan. Poor little beastie is having his balls snipped right now. BUT, he gets to keep his scrotum. An empty vessel. Thought you’d want to know.
LOTS AND LOTS OF LOVE TO YOU!!! Anne
— Anne Smith, March 25, 2013
Jamie! So glad You are YOU. and that you have all the memories and experiences still intact. I admire your strength and determination to make that next mile. Your updates are encouraging thanks for sharing.
— Charlene Kelley, March 25, 2013
You definitely are still you. No question. Your writing is beautiful… humorous, descriptive, elegant. I’m thinking of some of our lunch chats, and how you could cover a range of topics… interesting books, films, production absurdities, etc. All with a clear perceptive insight. This is no different, except the topic is your own evolving condition. Thank you for sharing your experiences with such skill, depth, and gentle wit. Maybe there’s a book in here… Oliver Sacks would be delighted to speak to you, I’ve no doubt. Carry on, Mr. Baker, and Julia, you are forgiven for having to go back to work, while Jamie negotiates the Mt. Everest sidewalks of Park Merced. Somehow, this is all going to work out, I can feel it. Thanks again for writing. Inspiring!
your pal, Bill
— Bill Cone, March 25, 2013
No doubt you are sharp as ever Jamie! Sounds like a story waiting to be illustrated i say. Keep up the good fight!
— bosco ng, March 28, 2013
Hey Still Me,
Glad me is still there, we love that me.In an time when so many are showing off their “new me” pleased to know your good old me still has it’s wits about it.You pen a smart tale, wicked you are with those words…keep on trucking still me.
Lucky man Baker, that Julia is an angel.
Thinking of you ++much love, Bob and family
— Bob Pauley, March 29, 2013
Hi James – I recently ran into Roxanne Nano and then subsequently spoke with John D who filled me in on your not so great news. Life sure does thow us some curve balls. I was pleased to be able to read your journal and agree with your other guests that with your humour and writing skills your talent with your pen has turned from pictorial stories to the written word. Very inspirational and a great reminder for all of us to treasure not
just each breath but also to be more aware of the day to day things that pass us by whilst we hurry to get to the next appointment, next job or even next tick on our to do list!
Take great care and thank you for enriching our lives through your journey. I’ll keep in touch.
Big love – your fwend Vi-Mary xxxx
— Vi-Mary Hartridge, April 1, 2013
Hi there James,
Jeez, it’s great to read up on how you’re going. I really do feel uplifted by your missives. I wholeheartedly agree with all the other who have written here, that you write so well!! I’m not surprised, but I’m thoroughly delighted, and whatever comes of it or not, I sure am glad to be reading it all now.
It’s the wee small hours here, and the ringtail possums are making a bit of a racket in the tree outside my window. Finally the humidity that has gone on way past what it normally should has given way to that lovely crisp, fresh Autumn weather. Royal Easter Show time. I saw a little boy with a propeller on his cap today. Apparently that’s the thing you really want as soon as you get to the Show. Pluto Pups, show bags and rides,…and the smell of the country! Free samples, knitting baking, sewing and the impressive District Display. Your area represented in produce, wool and jars of preserves and honeys. Ring events and prize dairy cows, udders full to busting waiting to be judged. ahhhh, it’s a great time of year. Just thought I’d share it with you.
I have a dragonfly and a moth dancing around on my ceiling.
Keep up the great work James. I think you’re amazing.
— Janine Dawson, April 2, 2013