This is our life these days:

Me: “Look, it’s snowing!”

Steve: “Or, storming”

About a hundred times a day, I say, “That makes sense.”

Oddly, it does.  Life changing sense.  We have clarity about who and what matters.  This experience has profoundly grown my leading values of love, joy and gratitude.  Life is short, making no time for negative or wasted energy.  While we don’t know what the future holds, I am certain there are silver linings and that there is great meaning to share with others. 

I’ve been challenged in ways I couldn’t have dreamed of.  Patience has never been my strong suit, but I am learning to embrace the smallest gains in therapy and to give myself grace when I can’t find words or when something takes a very (VERY) long time to do.  Like this post, which has taken nearly two weeks to create, with the help of notes I've taken along the way.  I am doing my best to stop saying “I should be able to ____” and, instead, recognize progress.  Slow and steady wins the race=true story.

Gratitude is real.  I have been able to reconnect with dear ones who fill my heart.  I have found great meaning in tasks that I took for granted.  I am left-handed, which means I can still write thank you notes.   I'm now able to walk a block by myself, as long as I have my cell phone with me.  I can tie my shoes.  I do my best to make the most of time, because it is finite. I am tremendously grateful that everything before the stroke is still intact.  I remember our life together, our kids when they were little, all of our travels and how to bake.

The learnings have been profound.  Having experienced this from a patient perspective, it is truly disheartening how some people react to those who have disabilities.  For example, I was at a restaurant, and an employee made eye contact, then proceeded to cut right in front of me.  I was invisible.  Once I start moving, it is very difficult to stop, or turn on a dime.  I nearly fell.  Falling is very dangerous, not only because I am on blood thinners, but because a broken bone or injury would jeopardize progress and my overall health.  When we are out and about for long periods of time, I still use a wheelchair, mostly for safety and to conserve energy.  I see how some look at me, a combination of pity and resentment.  Dogs are amazing.  They have a great sense of compassion and give us space.  When I'm in the wheelchair, we're at the same level, and I love to interact with them.  It's like making new friends.  Some people almost yell at me when speaking, especially if I am having trouble finding words.  Loudness doesn’t help me find words any better.  I cannot multi-task and can only concentrate on one thing at a time.  I always have a small notebook with me and feel lost without it.  So often, I feel judged or dismissed because I can’t find words, use a cane or wheelchair, am distracted or cry easily. 

A consequence of not knowing where the right side of my body is unless I am looking at it happened recently.  I was tired of not baking and was determined to make cookies.  While using the spatula in my left hand, I put my right hand palm down on the hot cookie sheet. Painful learning, but important ahead of the Christmas baking season.  I don't give up easily.

Most of the time, I am overwhelmed by the kindness and patience of others.  A man juggling a toddler and a shopping bag waited to hold the door open for me.  During a phone call, I couldn’t find a word and started to cry.  The woman on the other end of the phone gently told me to take my time.  A stranger walked up to me as we were leaving therapy, and told me she’d had a stroke, too.  She promised this would get better.  Our forever friends Steve and Sue made a wonderfully yummy dinner that didn’t require being cut.  Most recently, I had a lovely conversation with a total stranger, who at the end, held my hand and asked if he could pray for me.

My beloved friend Jo came to visit, and not only did it fill my heart to see her, but our conversation was reassuring.  She and I worked at St. John’s together, some of the most meaningful days of my life.  We were talking about being nurses.  Jo stopped and got tears in her eyes.  She said when I talk about being a nurse, I’m still in there.  She has her Jill back. 

Tears are one of the hardest parts.  I cry very, very easily, or as a treasured friend pointed out, more easily than before.  Who would have thought that possible, but here we are.  One of my physicians explained that tears are a combination of the injury to my brain and the enormity of change we are facing.  Once I start crying, I can’t shut the tears off.  I get embarrassed, which makes the tears even worse.  For those I've visited with, the patience, understanding and love you’ve shown means more than you know.  Our dear friend Dana summed it up perfectly: ”You are loved, not judged.” 

Holding our newborn grandbaby has been a victory beyond measure.  This has been my inspiration in PT/OT, working every day to have the strength to hold the baby safely.  My heart burst with joy.  I didn’t move for hours while the baby slept in my arms.  Heaven.  Is.  Real.

Words fail to express my gratitude for Steve and our remarkable kids, including the two we now claim as our own.  They have taken such amazing care of me and have never let their own fears or worries show.  Steve literally saved my life and his love is a daily reminder as to why we’re a team.  They are the very center, the sheer joy of my world. 

Steve and I are determined to go back to Spain in May.  We think of it as a victory lap to finish the trip that was cut short.  We also want to visit the hospital in Segovia to say thank you to the physicians and nurses who offered such outstanding care. 

Please continue to stay in touch via social media and texts.  Because progress is slow and constant, this is the final Caring Bridge update, though I would love to stay in touch. 

Please know your love and support has made all the difference and has meant the world to me and my family.  Once again, words simply fail.  I love you dearly.