One Word

One word, just one word, give me one word, the word you would scribble on the sign you are holding up to encapsulate who you are.  Not who you want to be, not who you think others think you are, but give me one word that says, this is who I am.

I watched a video link from face book…..yes I do face book all the time, I like the pictures of grandchildren.  This link had nothing to do with grandchildren; in fact it was completely different.  It was a video of several women dancing to a remarkable version of “Down to the River to Pray.”  They were all sizes, ages, shapes…..they were pole dancing.  All of their lady parts were appropriately covered but you might not want to watch it at your place of work.

One of the things that caught my eye, beyond the obvious, is these women of all races, shapes and sizes held up a single sign, a sign with one word, teacher, sister, woman, writer, dancer, or Amazon, a single word they felt described them.  

It got me to thinking, what one word would you use, what one word would I use?   Is that the word that best describes who you are or what you do or what you want others to think of you or even what you might think others think you are?  What’s your one word?  Take your time.

Marty and I sometimes have our best conversations in the car so I waited to ask her my question, “what one word would you put on the sign”.  While I drove I asked Marty, she paused, and I asked again and she gave me the finger, the index finger signifying she was thinking.  I clarified, “What would you have said before the strokes?”  She thought again and then said, “Smart.”

Absolutely, that is what she would have written on her sign; it was her defining trait, to her.  Others might have said other words, mother, wife, musician, problem-solver, funny, crazy.  It would have depended on how you knew her.  For Marty there was no question, the single best descriptor was “Smart.”

As we drove we listened to a little sports talk out of Dallas and a little political talk on satellite.  I would intermittently turn down the radio, engage Marty as she sipped her Diet Coke and ask her what her word would be after her strokes.  She really thought about it, she kept saying I’m thinking.  I was careful not to make suggestions because that really prejudices her somewhat broken thought process.  I continued to ask as we made our way to Richland Chambers.

Finally as we drove down one more farm to market road I asked again and she started to smile and giggle just a little bit, I asked for her word and she laughed and said, “Duh.”  She cracked herself up.  She had gone from “smart” to the dullard response of “duh.”  It was her commentary on her broken brain and what she sees as the defining part of her post stroke life.  

She still feels smart; she just can’t think smart or communicate smartly.  She said she still thinks she is smart, I think she used the “duh” because it describes the limits cause by her brain injury.  Marty is acutely aware of her cognitive limitations.  When “smart” defines you the loss of any of the “smart” is particularly painful.  

Marty’s  inability to walk, to care for herself in almost every way, the loss of independence, the loss of general control over her life are all hard for Marty to accept.  Her perceived loss of “smart”, that’s the killer for her, that’s why she is reticent to engage more, that’s why she is self-conscious, that’s what makes her the saddest.

I get it.  Those things that used to define me have changed; they have been changed but are not lost.  Marty has lost part of the thing that she used to define herself, note that I said part, not all.  To me, Marty still has “smart”, I still learn from her.  It’s just wrapped up differently.

My word by the way is “steady.” 

Shared Experiences Alone

I’m learning.  I’m normally a quick study, not so much about this.  I find that doing some things alone or doing some of things Marty and I did together is a hard enough task for me that, too often, I choose not to do them.

Doing some familiar things solo is okay and I do them, mostly I manage to manage my angst and get out and participate in life.  I have to confess that whole managing thing is exhausting and it often keeps me at home.  For me, this is part of the reason care giving is an isolating experience.  

The feeling of isolation is not just the actual care giving, being at home taking care of someone who is mostly home bound.  Often it’s dealing with experiences you used to have with your partner and feeling a bit lost without said partner.  You miss that familiarity.

I have been to movies by myself and I don’t particularly like it.  Beyond the fact that it feels really weird to sit all by myself in a huge theater I miss sharing the experience, I miss talking about what I have just seen with someone.  Talking about the film makes the entire experience better. 

In spite of the fact that Marty was a fidgety movie watcher and she had to get up at least once during the movie I really loved going to see them with her.  She almost always had an interesting perspective on what we had just seen.  I’m not saying her perspective always made sense to me, but believe me, she always had thoughts.  

I made one trip to Las Vegas alone.  That was okay but I’m not sure I’m comfortable being in my own head that much.  I like having company, I like having that presence of another warm beating heart.  Besides, when I was there alone, I had too much time to process and everything I saw reminded me of being out there with Marty and it really hammered home both the loneliness and loss.  I don’t want to do that again.

It’s the church and church stuff that is the real bugaboo.  I miss our church, I miss being at our church with Marty.  I didn’t understand how much of my faith and spirituality was and is wrapped up with my relationship with Marty.

Marty and I matured together in many ways.  We helped each other in our faith journey.  We talked politics, we talked kids, we talked psychology, and we talked religion, a lot.  We helped each other explore our spirituality, we helped each other with our own beliefs and we allowed each other to doubt and offered a safe zone to experience that doubt.  We walked a faith journey together.

It was a revelation to me to figure out how important Marty was to my faith and to my participation in our church.  I always thought I was the one that drove our participation; I always thought I was the one that pushed the church thing.  It turns out we were taking turns driving the participation, she was right there beside me on that journey and going to church without Marty is a real test for me.

I don’t walk into First Presbyterian Church in Waco without thinking of Marty.  I don’t go to any church service without thinking of Marty.  I have very few discussions with anyone about church or faith when I don’t either reference Marty or think back to how she has helped shape how I think on these matters.  Being in our church without Marty is ….. well, can you be lonely in a crowded room?

Don’t misunderstand, I love my church, I love the people in my church.  I am comfortable with where I am in my faith journey and it has taken Marty and many others to get me to this point.  It has not always been easy and I have minute to minute struggles with doubt, but ultimately, I am secure with what I believe because Marty has walked beside me so much of the way.

There are places, sights, sounds and smells that you so strongly associate with others that it seems strange to experience those places, sights, sounds and smells without them.  Those people have been so much a part of you it seems wrong to have those experiences without them.

It’s my journey, it’s my struggle, it’s only me that can deal with my crazy.  It helps to name the craziness; it helps to say out loud that some of those experiences hurt without Marty.  It makes no sense to avoid them all together, that’s not what Marty wants me to do.  

It just takes a step.

She Is Okay

People ask all the time.  It’s nice of them to ask, it shows they care, it shows they don’t forget.  They want to know, they ask “How’s Marty doing?”  My standard response, “Oh, she’s doing okay.”

She’s actually doing at least okay, she’s probably doing better than okay but I don’t want to jinx it.  I’m not superstitious or anything unless it comes to walking under a ladder and it’s just stupid to walk under a ladder.  

It’s also stupid to say things are going great when by saying it you might tempt the fates too much and cause “things” to go to shit.  Why take that chance?

At the risk of tempting fate and validating my more logical side, Marty is doing….. good.  See, even if I’m trying to be positively effusive I constrain myself to good, not great, not excellent….good.

We watched the Super Bowl in our home this year, as opposed to watching it on the 19 inch television at Providence Hospital last year.  While the company of nurses, aids and therapists is not a bad thing, I prefer to watch the big game from the comfort of my recliner with my bride by my side.  That’s where we were this year, we are a year clear of hospital confinement and that rates a good.

That doesn’t mean there haven’t been flashes of worry, episodes of some type of illness during the last year or last few weeks.  Our good is probably not someone else’s good and it would be a minor miracle if we ever got to, “Wow, she is doing fantastic.”

In fact, I wonder if fantastic fits us anymore.  I wonder what it would take for me to not worry about Marty.  I have thought about this from time to time and I don’t know how to get there from where I stand today.  Even with the good months solidly behind us and nothing too frightening ahead of us I still walk around holding my breath listening for the other shoe to drop.  

I’m not sure if that makes me a malcontent or a realist, I’m not sure it matters, it just is.

We still check Marty’s vitals multiple times every day and I still get a rush of adrenalin when I walk back and see that her blood pressure is above or below what I consider her normal.  If her blood sugar is high for the morning I wonder about urinary tract stuff, if her oxygen level is low….well that requires a trip somewhere.

Marty hasn’t had one of those really bad infections that cause a systemic body reaction in several months.  You would think we would be doing the happy dance and rejoicing.  But I can’t anymore than I would vicariously cross a black cat’s path without spitting.  I won’t tempt the fates and it seems to fit me better if I just keep watching and listening for the bang of the shoe on the floor.

I like not waking up in the morning with a sense of dread.  I like not walking back to Marty’s room worrying about what her blood pressure reading will be or feeling like the day will evolve into some form of tense chaos filled with medical decisions.  And that’s where we have been for several months now.  We’re okay.

I like it and I don’t want to jinx it by saying Marty is doing better than okay.   Marty is okay and the real truth, in our life, okay is really way better than just your standard, okay.  I mean really, you live through two strokes and are still alive and functioning, you are better than the standard okay.  Okay? 

If we stay okay until the next Super Bowl I will be a happy camper and Marty will have marched through another year without any real medical issues.  

That’s okay.   Oh hell, let’s just go with dandy.

Real Milestones

The anniversaries of the strokes are big milestones, but the date where the rubber really hit the road , June 2006, was when we made it home after the 2^nd stroke.  That was when our new life started.

Our old life died on the days the strokes occurred.  The old ways of doing things, our old relationship, our old marriage, our old simplistic and naive view of life all died on the stroke dates.  The new life, the new normal started when we came home that June.

As we rode home, a home Marty hadn’t seen in six months, our new life smacked me in the head when the agency I had contracted with to provide care giving service called to say their care giver would not be able to make it that night.  

I was already walking a very fine line between sanity and total panic induced insanity and I went ballistic as I drove the car home with Marty beside me.  I’m sure my reaction scared Marty; the thought of no professional care giver certainly scared me.  It was my introduction to our new world; it was Nurses’ Unlimited’s introduction to the maniac, Marty’s Husband.  They sent a supervisor to help us make it through the night.

We hadn’t been home two weeks when Marty went back in the hospital in July to treat an upper respiratory infection.  We returned home after four days and then went back to the hospital with another infection about six weeks later.  I was on the edge of believing I could never, ever do what lay in front of us.  How would I ever be able to manage the disability, the meds, the procedures, the appointments, the need for constant help, the infections and all of the other issues associated with these strokes?

I was emotionally exhausted, I was anxious all of the time, I almost foundered from worry, mostly I had this profound fear I couldn’t do what needed to be done.  Marty and I were home but it was a home I no longer recognized, it was a home that provided very little comfort for me and I worried it didn’t provide the safety and security Marty needed.

While the hospitals and the sub acute care centers and the rehabs were difficult they did offer some sense of security, some sense that we could rely on someone else’s judgment…….someone else’s judgment, not mine alone.  Being home meant I had to rely on my own judgment.  I didn’t trust myself.

Marty didn’t have much of a choice, she had to trust me, she had to assume my judgment about her health, about her care, about her very life would pass muster.  Trust me when I say it was a sea change for her too.  

Marty accepted.  Marty decided, whether by choice or not, she decided she would look to me not to fail her.  Somehow she didn’t doubt, she just assumed I could do it, she assumed we would make the transition to our new life, together.  

 

Ultimately her confidence in me made the difference, she believed in me when I didn’t believe, she believed we would find our path.   She taught me that we can do what is necessary; she showed me we can rise up and do those things we once thought beyond us.  Her faith, her belief, her tenacity, her refusal to accept less made me better and we survived those first tumultuous incredibly frightening weeks.

I still doubt, I still fret, I still feel anxious, I still worry about her and watch her like a nervous hunting dog, always waiting, almost sniffing the air for prey, always waiting to stiffen and point.  A yawn from her, a stretch, a cough, a sneeze, a sleepy reply, a confused look still takes me back to those very difficult days, to the June we came back and buried an old life and started anew.  

I suspect that will always be.

I hate the strokes, the coming home days still cause me to breathe too rapid and too shallow.  I am forever grateful for Marty and her faith, her faith in God, her faith in me, her faith that we can adapt.  Her belief changed me.