A LONG AND WINDING ROAD to recovery
I has been time wrote the horror story (well, at least it my horror story) about it was like to actually have a stroke.
Now I would like to describe my subsequent recovery or rehabilitation; because, as I found out, this an essential part; that is; it is possible, but this the hard part of story, but little has been described about it. When I was lying paralyzed in the hospital bed, after 8 days in Neurosurgical ICU (NICU) you hoping that you are going to live (as opposed, well—the alternative)! Hence, I'm alive and here to report there is there is a long road, rough to rehabilitation, but I am seeing light at end of tunnel. For instance as sit here writing this I can still type (albeit with one hand, but it does still work!) because I have work yet left to do. There are numerous other examples of rehabilitations, that I can give. Let me explain.
Try as I might, I can not put into words what my thoughts when the stroke happened. Then I read an amazing book, given to by a dear colleague (“My Stroke of Insight”, by Dr. Jill Bolte Taylor; she has an extraordinary TED Talk too posted here. Dr. Taylor talked about “saying goodbye” to her life that was a feeling of bliss of “one-ness with the universe.”) I remember I said goodbye my life too. I recall I was, lying on that OR table; thoughts were running through my brain; if this it did enough with my life, I wasted so much time—I could done more. But now, I would have settle, with I had done. I had no idea that some else had experienced this before. She talked how left brain was realizing she was dying and she essentially said goodbye to her life. It helped. I felt like I was not alone. When I lost consensus, I had no further memory until I work with NICU after medically-induced coma of 8 days. While I was in a coma, I had a very important scientific experiment I sent on the very last space shuttle and went up the previous morning. My Organization had a reception to watch the launch in our new facility, so I woke (at night) many days later the TV in the hospital room was set to the NASA channel. I was confused couldn’t figure out why they were landing, having launch earlier that morning; in others words, I had lost 8 days. I worried all through the night for fear that something terribly wrong with shuttle that they would have to bring down so soon and people were not telling me. It was dark when went in the Operation Room (for the administration of tPA (tissue Plasminogen Activator) and it was dark when I work up; hence, I assumed it was still the same night. It was some time later that I realized when I realized my error.
I soon knew what I was up against when the Neurology Rounding Team came to see me. The attending physician (Dr. Lopez) asked me to speak. I noticed right away they could understand me, which I course found odd; that is, I couldn’t talk. Much less, I had feeding tube down my nose and couldn’t lift my left side which was paralyzed. To say I was “stunned” doesn’t covered it; I had no idea I was in such bad shape. Of course nobody knew I couldn’t vocalize it, but could believe either; until I tried to moved and speak. I discovered I could quench my thirst and I had a fever (nosocomial [hospital-acquired] pneumonia).My lungs hurt and there was something in my throat (a ventilator). Well, it was pretty clear lying there I was wrecked! Ironically, throughout my career as a medical school professor I lectured on pneumonia (literally infection/inflammation of the lungs). I described for students how terrible it is for patients. It found out it was hard way, having to fight for each breath; now I was experiencing it! It was indeed awful!!
It became a process of setting small goals: get the ventilator out, get the feed tubing out, learn to swallow so I could have a drink of ice water (which I desperately wanted; due to the fever). And of course I wanted to use the toilet; alas the bedpan was no fun. Then were the matter of learning (yes-learning) how to use wheelchair (btw, maneuvering wheelchair makes I found how tough it is for folk who use those things to get around).If e.g. the opening is too narrow opening, you simply don’t go there.
Of course, I notice little things (at least they were little things before the stroke, now there huge!): I can longer spell, but if yet I hand-write I do better; I can’t calculate in my head. Both of these things are I am have good at all of my life. And my memory is not once was. Fortunately, technology has present to these things; i.e. my smart phone!
So, The Goal was to walk, talk, swallow, I soon discovered that best friends were the therapist, the Physical, occupational, and Speak Therapist. My Speak Therapist, Katrina, said the most memorable thing to me: she reminded that me it’s up to me, to rehabilitate myself. You to make up mind to put head down and work hard (for example, the see what Physical Therapist put me what I call the antigravity machine; it supported me when I walk around in that harness in the hallways (it was hard work! But very good for teaching me to walk. And it motivated me, too; because I wanted out of that thing! When I practiced walk I had wear a belt and my Physical Therapist (Melanie) had to hold to me; air squats did me good. When I got into the Cross Fit gym, of course I found that I could do what I did before the stroke, and it because of my grip; the coaches at the gym got me rowing (rowing is good for rehabilitate; it uses all the muscles of the body, as well my grip) Of course, the Occupational Therapist (Kim) had me doing practical things like button shirt, and tie shoes (I’m not ashamed to admit that took me 1 week to figure out to tie my shoe; because I only had on hand). You don’t realize how much you use your non-dominant hand until you lose the use of it. When got cleared the from using the anti-gravity machine (i.e. I could walk with a cane). I still had something called “left side neglect”. Or “Hemispatial neglect”. (Neurologist don’t know why the brain does this) I had to get used to bumped into things my the left side; and to learn to proceed cautiously. In fact, I broke left little toe and dislocated it because I just could not see the dangers, so I learn endure pain! I still can’t feel the left my face, hence I make a mess every time eat something juicing or gooey, so be diligent and aware in wipe my face is likely to be a mess while I’m eating (my boys have working out a signal in public for I need to wipe my face..
All that: the physical part (speaking; eating; dressing; walking) took about a year to accomplish.
Now, I trying to get back to where I was intellectually; i.e. writing; read; trying enunciated my speech; the ability to calculate numbers in my head. Thankfully, Steve invented the I phone just for me! Now all that left of recovery is my speech; but I have been diagnosed with Dysarthria and apraxia. This is due what is basically due to scar tissue in the brain where the stroke happens. The is composed of “wires” axons and anything that blocks them (i.e. scar tissue) will interfere with messages transmission (e.g. to the hand). Fortunately, the will “re-wire”; this phenomenon is called “neuroplasticity”, in essence axons will make way around scar tissue an transmit command. Again, Neurologist can’t explain this; because it previous though that central nervous system tissue would regenerate itself. Less fortunately this scar tissue produces epilepsy in 22% of stroke survivors. I have seizures; this, of course, that I can’t drive, or really take part in any thing dangerous.
My immediate thoughts prior to my recovery, was what will I do with the rest my life if I can’t resume my career (because it’s clear from the start of this recovery process I could not). I imagine this what stroke survivors (particularly professionals) wonder.
I decided to do what I’m passionate about—write down is like to recover from a stroke; perhaps someone can benefit from my experience and see that there is indeed light at the tunnel. I want to encourage my fellow stroke survivors that you can pull yourself up by bootstraps and go with life. I want to contribute to society, after that what drove me in life
After all, I’ve got grandkids to look forward too!