B. Howard Penix, Major, USAF (ret), MBA & PMP
I survived an aneurysm, the ballooning of a weakened region of a blood vessel that ruptured and bled into my brain, over six years ago. This lead to a life living my New Normal.
An A+ personality, I was used to doing everything for myself. A certified project manager who served in the USAF for 20 years before a managerial career in corporate America cut short by the stroke, organizing others' efforts for a common goal was my premier skill. Setting and achieving goals was my life.
Likewise, I had always proactively cared for my health as my family has a history of diabetes, heart attacks and stroke. In fact, I annually had a complete physical, maintained a low blood pressure and aggressively managed a high cholesterol problem with exercise, my doctor and statin medications (keeping the total below 200 mg for over 10 years). A strong proponent of being prepared (my Boy Scout and military training) I had the Medical Health directive, a Living Will, a Last Will and Testament, and a Durable Power of Attorney for Health on file at local hospitals and with each person named.
And, as the caregiver for my elderly parent, I was more worried about her past TIAs then any physical ailment on my part.
Quite suddenly life took a detour.
It was my 52nd birthday. Returning from a neighborhood party celebrating the day with the family of a neighbor's child that shared the same birthday, I prepared for bed. Fast forward 20 days later. I was asking my brother why I was in the ICU at the University of Iowa Hospitals and Clinics (UIHC).
"You've had a stroke" he answered, "and the doctors have performed an emergency operation to clip a hemorrhage in your brain. Your neighbors were called by Mom because you collapsed in your bedroom. They arranged for the EMT to transfer you to the Muscatine local hospital. Because no one knew how long it had been since you suffered the stroke, the medical team opted to air evacuate you to UIHC."
Learning the scant details was a bit much, and I left “conscious awareness” for another few days.
After I again became aware, he filled me in on more of the details, from the EMT not knowing how to get to our rural address, to the stroke protocol completed by the local hospital staff, of the concern-filled hours between air evacuation and surgery where Mom and the neighbors awaited the outcome and of his haphazard flight from Pennsylvania to Iowa be by my side. He also informed me that it was “good news” that I had prepared for any medical emergency.
By the beginning of December, it seemed that everything was progressing well enough for me to be moved to a rehabilitation hospital in Davenport, but not before having to undergo another procedure. I kept complaining that the surgical cap was getting “wet.” After a few days, the decision was made to do a spinal tap and -- low and behold -- I had an encephalitis condition associated with the initial damage. The cranial fluid was not draining correctly and was causing increasing pressure on my brain. Quickly, it was decided that I needed a PV Shunt. In that operation, a small tube was put in my head, threaded down the left-side of my face, neck and torso and into my lower intestine. A few days of mobility checking in the UIHC, and I was transferred by ambulance to Davenport for my rehab.
It was while in Davenport that the depression set in. Daily, the physical challenges for coordination, mental exercises for developing language and exercises for self-care were not going well. And the effects of the “black cloud” were holding me back. I knew I was no longer the same -- lacking the drive and focus to complete what I was challenged to do. A very caring psychiatrist noted the need for medication to help me get over the “blues” and, matching my personal behaviors of the past, had me start making lists of what I wanted to achieve. Making that list was the key!
I knew that I had to recover enough to drive as I was the principal caregiver for my mother. We needed to get to the grocery store, pharmacy, church and doctors. I needed to get out of the four walls of my rehab and my home. And that was a fortunate rehab requirement. The Genesis West facility had the driving simulator in the main rehab work room. Every day, I focused on the mobility, cognitive, and emotional exercises knowing that the reward was getting to use that simulator -- and ultimately qualifying for a return of my license.
But the list had other requirements:
Taking a bath by myself
Cutting, serving and eating food I had prepared
Sending handwritten letters
Using a QWERTY keyboard for my writing
Reading novels and histories and making presentations
Golfing, swimming and running
In truth, I wanted to be able to return to my job and my social obligations.
The psychiatrist and therapy staff encouraged me to look realistically at what I could achieve. Daily, we practiced personal hygiene and cooking skills. We set up routines that I could practice several times a day. Learning to write with my non-dominant hand was like going back to grade school. Out came the lined paper and the alphabet cards. I worked from printing to cursive in a matter of weeks. Basically, this was because I would “sneak” extra practice sessions during meals and after-hours, hundreds of pages of letters and words. I would be watching captioned TV programs and copying the sentences, talking back at the actors. First, repeating and then competing to get the answering to game-show questions, trying to sing with the "Idol" wannabes and reading every magazine in the day room. All this goal-setting had but one major deliverable: to be able to get my driver's license back. The interim rewards of simulator training ultimately paid off and in 10 weeks, I was again behind the wheel -- driving myself to out-patient rehab sessions with Muscatine Physical Therapy Services.
There, we refined the motor skills. Using a variety of hand muscle exercises, we worked on manual dexterity. Playing pick-up sticks, rummaging for ball bearings in a bucket of rice, turning knobs and using various hand tools quickly allowed me to return to the computer. I was looking forward to that event when I learned the first of my New Normal.
In the past I was a “keyboard wizard” -- clocking over 90 words per minute accounting for corrections. Now I was clocking a maximum of 10 words per minute. Every time I used the formerly dominant hand, I could guarantee the left-hand would be affected. After nine months and several adaptive techniques, I found that I could control the crossover errors by restricting my affected right hand by using only one finger. I was up to 30 words per minute, but this wasn't good enough for me. So, looking for other avenues, I discovered Dragon Naturally Speaking and Dragon Dictate (for Macintosh). After many sessions of tuning the system to recognize my sometimes slurred speech, I am now able to compose e-mails and word documents at 60+ words per minute.
During this period, the therapy team also put together targets for the physical aspects of my recovery. Working with the Stroke Group in Davenport, they refined the exercises for major muscle groups so that I could return to golf-range work. Swinging clubs initially affected my balance and required further tweaking of the PT sessions to account for them. We got the sports medicine specialists involved. They worked on lowering my center of gravity to reduce the imbalances caused by the torsion associated with various club head swings. Simple balance issues surrounding walking the links, uphill and downhill, required a different stance than I once used. These New Normal stances have allowed me to enjoy golf and have the benefit of augmenting my swimming and running exercises. The gait changes also benefitted my overall walking, so much so that after a few sessions, I was able to give up use of my cane.
To address the on-going depression associated with a minor case of aphasia, the medical professionals (my personal doctor, the psychiatrist and therapists) came up with a new plan. As a Toastmaster, they challenged me to use the program to develop talks about stroke and my processes of recovery. By having worked on the “scripts” ahead of time, words could be found/practiced before they were used. Using the extemporaneous speaking sessions allowed me to form sentences under time and cogency pressures. Part of the New Normal was accepting that some words would simply escape; I call it taking a word-express to California, and I could ask for help in finding them. It was also to tell my audience -- friends, acquaintances or a group of strangers, that I have gaps in my word construction skills and, unless I ask for help, prefer to struggle with finding the necessary words. Over the years, I have achieved my Toastmaster's GOLD rating, presented talks on stroke awareness and recovery skills and most importantly mentored other “stroke thrivers” in their speech recovery.
The New Normal comes with the need to accept changes.
I can no longer sing the way I would like. Having had voice lessons in the past, I took pride in my range and vocal quality. Now, the sounds that come from my throat are in a lower pitch and just a bit “off” to the ear. More importantly, the head tones cause me some discomfort associated to the clip and PV shunt. So, I am in the process of relearning my range while mastering former skills of note reading and harmonizing. It has also found me searching music libraries and the dark places of memory for songs I used to know “by heart.” Accepting that chorale performances are not in my immediate future required me to search for another outlet, and that has become working with Not-for-Profit organizations (and, no, I was not able to return to my former profession).
My reading speed has decreased dramatically, yet, I get through a novel a week. Handwriting long letters and documents is out of the question because of legibility issues and muscle fatigue. Making jokes over lost words and malapropisms is a new and appreciated skill. Using food processors, mixers and other kitchen tools allow me to continue enjoying food preparation and dining and, once again, be the primary care provider for my mother. And experiencing multi-headed showers and jacuzzis are joys that, had not the stroke occurred, I might never have discovered.
Being forced into retirement has also sped up my schedule for travel. Prior to the stroke, I expected my travel lust to be addressed with my retirement at age 65. Since the stroke, I accept that I have not been promised more than the breath I currently have. So taking as inspiration the book 1000 Places to See Before You Die, I have put together a travel schedule. From returning to places of my youth and military life (Japan, Europe) to locales of genealogical interest and on to dream cruises and destinations, my little black book is the roadmap and budget tool for my monthly forays and annual expeditions.
Yes, accepting the New Normal has had its downs. More importantly, it has allowed me to enjoy the many Ups!!!!!