The New Normal

 

We're heading into the fourth week post-stroke. It has not been easy. I have cried, had sleepless nights, bouts of emotional ping pong, lack of appetite and a few pity parties. My sweet sister, friends (forty years long)--family and neighbors have all been in constant contact, offering support, texting: How are you? I'm no saint. I want my life back. All the while celebrating the many mini victories Joseph has each day--focusing on what's right in front of me--not the future, definitely not the past (which allows despair to creep in...never a good thing) and just breathing.

The other day, we loaded up the car and visited a park to extend his walking space (we're so tired of the back and forth, back and forth in the house, or on our sidewalk). It was a beautiful day for a small stroll--plus gave us the opportunity to practice car rides. He did great. He's now using a cane as well as walker. Baby steps.

There's a saying: God never gives you more than you can handle. Um, yes she does. I'm a list, journal, notes and paper calendar woman, raised in the school of the Franklin Planner, The Seven Habits of Highly Successful People--the Covey principle of "first things first". Every day when Joseph wakes, there's an eraser board with the date, hour-by-hour activities and PT/OT visits, doctor appointments and goals for the day along with rest and his meds schedule. One of the things I've learned is that structure and schedules broken out for the stroke survivor are incredibly helpful. As a caregiver, this also helps me. These few minutes of quiet planning in the morning are precious. It's a lot.

When an unexpected dental emergency struck (because why not?!--remember, "never gives you more than blah, blah, blah"--whatever!) the anxiety I had over his ability to consume proper foods to help his brain heal went into overdrive. Lucky for me, I have a dear friend who contacted another dear friend whose son is a dentist. We had an appointment the very next day--omg! The news wasn't great, but at least there's someone trying to work out a plan to help. I had an ugly cry. Friends. I am so lucky. The goodness showered on me (right in lockstep with the grief) has lifted me.

At some point this will all be a "remember that damn stroke?" story. At another time, I'll address the elephant in the room: Hey, look at this, a vegetarian had a stroke...see it doesn't matter! Well, it DOES matter. Stroke does not care...but genetics and overall health DOES. And overall health going into a medical crisis is everything.

No Two Strokes Are Alike...Now I Know

 I read and research all things "strokes": causes, signs, genetics, prevention, recovery, new discoveries, rehabilitation. On and on. One book that's been particularly helpful is, "Hope After Stroke" by Tsgoyna Tanzman. This gem contains multitudes for both the caregiver and stroke survivor (don't refer to them as "stroke victims...but survivors"). It's actually been a godsend. Every chapter contains pearls of wisdom on communication-- language for dealing with stroke, exercises, case studies, recovery and the reality that all of the daily work needed to build back the brain--however small-- is significant. And most importantly: no two strokes are the same. Yes, the stroke may be one of two types, and yes, they may hit the same regions of the brain...but just as our brains are different, so too are the individual responses to stroke as are recovery rates from stroke. Stroke doesn't discriminate--it can happen to anyone. This journey will be a marathon, not a sprint. 

I arrived at rehab to sit with him and get the day's events from him. He asked if I could bring him a box of beads and string so he could practice improving his small motor skills. My husband is nothing if not a perfect student! Then Joseph played an entire game of solitaire as I watched, amazed at the focus and determination-- though still a bit wobbly with hand coordination. He finished, sat back and said, Whew that was hard. I know...I know. But wow, what an amazing thing!

The progress Joseph is making is incredible. I've watched and participated in his recovery journey. His rehab center staff are angels--heroes with dedication and inspiration for him with every milestone he achieves.

Yesterday I had to go to the Big Box membership store...alone. Several deep breaths. I wasn't prepared for for any emotion to surface--I'd just left the rehab facility--all was good. Things are progressing. 

It'd been two weeks since I'd really noticed our dog food dwindling, other staples needing replenishment. In the morning, I squeezed in a visit with a group of quilting friends and they shared hugs and well wishes--I needed this connection because so much of my time has been alone, alone...or beside two Thunder Wolves (Great Pyrenees-- they know there's a need for comfort right now-- they won't leave my side). Texting and phone calls from my besties, support from neighbors--all very kind and so very needed.

The store was incredibly busy-- it was after five. I typically don't shop after two, and usually not alone. Joseph and I would tackle these monster store visits with the attitude of: more steps for the day! I don't know what came over me, but I felt a deep sadness creeping in and tears coming on. Uh-oh. All day I'd managed to keep it together, going so far as to declare to my friends: I've decided today is a no crying day! The store, the crowds, the normal routine of my life felt out of sorts to me. And so I cried. A little pity party alone in the pasta aisle. And then I moved on.