NOW I AM THREE

This is an edited letter sent to a personal email list on the third anniversary of my stroke. It is the story of experiences/realizations at the third year mark from my stroke in 2021. It holds my experiences, habits that have helped me and some resources. Many people have encouraged me to share it more widely

If you are a stroke survivor/thriver or know or love someone who lives with the aftereffects of a stroke, it may be of interest. it is not a medical edict. All strokes have their own nuances. In my case, the skills for writing returned, slower to produce for sure, but seeing my thoughts in “black and White” shows me the truth of my experiences. I believe some keys to a strong recovery are honesty, laced with hope, humor and big doses of a support system (partner, loved ones, family, friends, therapeutic groups) self-care and self-love. Sharing “experience, strength, and hope” ties us together. I share this here for those reasons.

Dear friend,

In the three amazing years since my “mild” ischemic stroke, I have taken both baby and giant steps in my physical, emotional, mental, and spiritual recovery. Today is my 3rd birthday of experiencing this growth and I am grinning as I write this. Also I’m feeling an immeasurable amount of gratitude for the people who have been my cheerleaders along the way. What a great life!!  

It seems the fastest recovery has been in gross motor skills. In earlier emails to you I described how physical, speech and occupational therapy gave me a blueprint for future help. I have adjusted and adapted ways to get help with physical or mobility issues when I need it. 

TAKE THAT FIRST BABY STEP

In the first months, it was the death grip on my husband’s arm to stand up, walk, and move to a sitting position. Because my balance was way off and mainly because I was freakin’ scared. I appreciated the safety waist leash around me as my physical therapist, the wonderful Geneva Kaplan, encouraged me to walk, turn corners, and… walk backwards.

Three years later, I’m adept at all three, knowing to navigate to walls for a quick lean, and a look around to scan my next move. I use railings with ease. I’ve graduated from walking slowly with no other activity except to pick one foot up, swing it forward, and place it down… there, etc. Now I can easily walk and talk, but not walk and talk and look around to read signs.  

I’ve taken five plane trips since my stroke in 2021. The biggest boon in physical help is a free service for a wheelchair and the angels that guide them. Transportation Security Administration.  First time I was petrified. What if it tips over? What if I have another stroke in the middle of this airport? I always carry a list of my meds, a letter that I am a stroke survivor, and the local medical centers that have the CSC designation (list in US) – Comprehensive Stroke Center.

TAKE A (WHEELCHAIR) RIDE WITH ME

That first Angel on the long ride to the next departure gate, sensed, or had seen that deer-in-the-headlights look. “Don’t worry, I won’t leave you.” 

When I kept looking behind me to see if my husband was keeping pace, the assistant said, “He’s there. He’s there. We won’t lose him either. I go slow. He goes slow …   “I go fast. He’ll go faster.” Then he smiled.  “Just kidding.” 

This last trip in August I could easily walk from gate to plane, but we knew to reserve a wheelchair for every leg of the journey – gate changes, getting baggage. And Skylink navigating. My wheelchair passenger assistants have been, without exception, angels. They’ve been funny, compassionate, kind, all while confidently pushing a wheelchair.

Folks make way for us – it’s like the parting of the Red Sea. “Pardon me, pardon me,” my angel says, with only a slight pause in speed. Our last trip I had a double pusher. Pushing two wheelchairs in front of him, I was able to chat with my fellow rider. I also think some of the passenger assistants are in athletic training. On our last trip back from Dayton I asked, “How long you been doing this?” He replied, as we rolled along faster than the moving walkway, “I’ve been here a year, lost 60 pounds, stopped smoking.” (Yes, I give generous tips.)

I constantly check in with my Ancestral Brain that keeps scanning for threats, danger, and impulses that signal look for safety. Sometimes it’s very tiring. Social interaction can be more fatiguing than a hike. Being with friends is exciting and calls for listening,  filtering out unnecessary noise like air conditioners, or the buzz of surrounding conversation, and peripheral visual distractions as part of the fun of the occasion. There’s usually a nap afterwards.

RESEARCH THAT INSPIRES ME

Research from the Greater Good Science Center, Berkeley University, CA reports that “setting safe goals aka, a positive outcome rather prepping for failure or trouble, being specific in plans and affirmations, and being prepared for unforeseeable obstacles can tip the scale to higher energy, success” and … dare I say it – happiness. Attitude adjustment is a constant companion. I cannot afford to join a solo pity party. 

My brain cells are often so excited to be employed again that they hop all over from one thought to the next. When a to-do pops up on my brain radar, instead of trying to remember it, I write it down immediately. Much the same as my old habit of putting writing ideas in my Snippets pad. As David Allen of Getting Things Done (GTD) advises, “If the list is in your head, it’s in the wrong place. Use your brain for thinking, not for a depositor of to-dos.” My kind of guy.And so I make lists: Home projects, Writing snippets, Birthdays and anniversaries, Doctor calls, Time schedules for the day (with help from Hank)

According to the Children’s Hospital of Orange County  CA the following are some of the common milestones of a three-year-old child (edited with my annotations for my third year)

• Understands long sentences (yes)
• Understands prepositions ( Show me with gestures what “up there” means or “under” or “over there”)
• Uses pronouns correctly ( this has been an emerging problem- I’m getting really picky about clarification)
• Asks “why” constantly (yep)
• Counts up to four objects- (I can count many more than that, but if I had to recount I might get an entirely different number)
• May have fears of certain things for example, dark, monster under bed and going down the drain  (being alone in a new place and no one will help me). Antidote: Fear fighter: F.E.A.R.= False Events Appearing Real
• Attempts to solve problems ( Yes, yes, yes)

WHAT’S NEW

• SoulCollage, creating greeting cards using Stampin’ Up materials for my own designs.
• Indulging my love of books as librarian at the Center for Spiritual Living Tucson labeling, alphabetizing, and reading batches of donated books. 
• Watching people more to see how they walk, how they carry things. What kind of eye contact they make.
• Preferring Zoom or FaceTime rather than phone calls for easier interpretation. I also have had high frequency hearing loss “… but, that’s normal at your age.”
• Recognizing Residual Sensory Symptoms. After 3 hours of focused reading, writing, or social activity my concentration can wane, or slow down around sensitive subjects. Symptoms of feeling, but not exhibiting shakiness and my top symptom – the Frankenstein shuffle, wobblies when walking, signal it’s time to rest. 

WHAT MAKES MY BRAIN CELLS HAPPY:

 

Naps, rest, being outdoors, music, iRest Yoga Nidra, healing bowls, hugs, kisses, laughing, being back on stage for storytelling or presentations, picnics, traveling.

WHAT MY TYPE A BRAIN CELLS PERK UP FOR:

• Games- Quiddler, Rummikub, Counting, Sudoku, 1000-piece puzzles.
• Writing- on my computer, editing. My writing process is slower. It used to be one day for a literal walk-about, thinking about a piece. One day computer dump. One day polish. One hour print or post. Now the walk-about can be 3 days. Draft 2 days. Polish, proof, and print /post 1 day.
• Physical- I get on my mat every day. Practice yoga, play tennis, walk in the park or our neighborhood. Move, stretch to combat right-side weakness in my legs, ankle, foot.

“SO HOW YA DOIN’?”

I’m know I am getting better and better even as I get older and older. Better- strength, acceptance, wisdom, compassion for myself and others.

Now, when someone asks “So are you back?” I don’t feel a surge of irritation. “It’s never going to be back to what it was. Nothing is ever the same. But it’s a whole lot better. Three years worth.”

Now, when someone says, “You don’t look like you had a stroke.”  I’m cool with it, because the inside stuff is not a deviant part of me but simply a part of me that I don’t have to explain. I may move with bits of jerkiness just because I’m tired. I skirt the fear of losing words and just look “thoughtful.” And it’s easy to smile. Every single day.

Feel free to contact me about stroke/brain injury. I’m not a doctor. I am a grateful thriver.

Ethel Lee-Miller blogs regularly about people, the power of words, and her writing life. She retired after 30 years of teaching, and semi-retired from coaching, and professional editing. Founder of the Eastside Writing Room based in Tucson AZ, she’s posted 100s of blogs, and is the author of Thinking of Miller Place, and Seedlings, Stories of Relationships. These days she writes to inspire, to connect with folks, teaching about the power of words, gather writers together, and for the pure enjoyment of it. Ethel enjoys teaching, speaking, and storytelling at Odyssey Storytelling, Artists Standing Strong Together, Center for Spiritual Living Tucson, and anywhere there’s a mic or a Zoom room.