Thursday, September 26, 2013

"Cheese" Won't Cut It

We had our photographs taken last Saturday.  We got all dolled up and made up and went down to our church to get our photo made for the church directory.

I have to say the preparation for the big event took a lot, I mean a lot longer than the actual picture taking took, which tells you how good the photographer was and how much work it takes for us to look purty.

We missed the last church directory but one of our life lines to the church sent me an e-mail and offered to come and take our picture for the directory.  We chose instead, when offered, to make our way down for the official photograph.  I saw it as an outing and an adventure.

Personally I don’t like having pictures taken, they remind me I have aged and I never did much like my picture smile.  When I was younger and full of machismo I could pull off the manly frown or grimace, you do that at 59 it makes me look like a curmudgeon (maybe the truth).  

Marty on the other hand had a great photo smile.  She could paste that sucker on regardless of the preceding circumstances and come off looking positively joyous in any picture taken.  She had it down, just enough teeth without too much of the dental work, the smile turned up at the corners of her mouth in a perfect lip to smile ratio.  

But the strokes affected that too.  Marty can’t move her left arm at all, she can’t use her left leg except spontaneously and she doesn’t have tight small muscle control over the left side of her face.  You can’t see it in normal circumstances but when she tries to do the photo smile it too often looks more like a grimace than a smile.

Now her post stroke spontaneous smile, the smile right before she laughs or if something really lights her up is radiant perfection, it is joy incarnate and covers her whole face from her eyes to her chin.  The trick is finding a way to get that spontaneous smile at just the right time, right before the shutter clicks.

Marty has always tended to the ribald and downright crass parts of life.  That has not changed.  She loves a good dirty joke and for whatever reason potty humor and potty acts cracks her up and sends her to belly laughter land.  

I know this, I’ve known this and any picture you have seen of her post stroke where she has a broad smile on her face, just know, right before the click, I whispered “fart” in her ear.  It works every time.

Knowing the photo session was coming up, in addition to coordinating outfits (something I never thought I would want or need to do); we rehearsed the picture smile with me trying out various words to illicit her genuine spontaneous smile.

“Fart” and she smiled.  “POOOP” got a pretty good smile.  “Diarrhea” cracked her up.  We practiced several times and we were set.

The day of our photo session we got dressed, me in my black suit (hey it’s slimming) and red tie and Marty in her black suit with a red jacket.  She had on make-up and I struggled to control my flop sweat.  We were beaming and a joy to behold.  

Diarrhea….we continued to practice the smile and Marty continued to laugh every time.
We got to the church and Renee helped me get Marty out of the van, I picked up my jacket, my phone, a hankie for the sweat and a brush.  Yes, I remembered a brush.  We walked up to the doors and the photographer opened them and let us in.

The photographer was a member of the church I have known just a little bit for several years.  I think I helped teach his son in junior high Sunday school.  He’s a very kind and quiet man and we followed him down the hall to the nursery where he had set up for the pictures.

Once we got situated in the room, me on a stool to Marty’s right, the photographer’s lights primed and ready and the photographer straight ahead focusing on us, I straightened my tie, smoothed Marty’s jacket and whispered in her ear, “What’s the picture smile word?  You remember?”

Of course she remembered.  Now, Marty doesn’t have a whisper voice anymore; everything she says is at a conversational level.  She blurts out, “Diarrhea, ” I laugh, Marty laughs, the photographer stops, starts, focuses and says, “Well, not cheese, but…..diarrhea.”

We all smiled, the lights flashed, he looked at his camera and lines up to take another picture.  

“Diarrhea.”  There were more broad spontaneous pure smiles walking on the edge of real laughter.

He took a couple more pictures was satisfied with his work and we were done.  It all took less than five minutes and we were rolling down the hall from the nursery back to the front door and the van.  It was quick, painless and hopefully fruitful.

As we drove home that afternoon I thought, "That's just not normal." 

I couldn’t help but wonder if that nice quiet man was standing in the church nursery in front of some stalwart church members and pausing right before the shutter opens saying, “Diarrhea.”

Friday, September 20, 2013

The Pain of Awareness

She has many of the needs of a child, yet she is not a child at all.

The strokes that scarred her brain stole her independence and her ability to care for herself.  They robbed her of the ability to do the simplest things.

I know she doesn’t feel like a child, she knows she is not a child, she doesn’t want to be a child, but she knows she is as vulnerable as a child.

All of this is the anti-Marty.  Her new normal, her dependence on others, this child-like vulnerability is the antithesis of what she was, the way she saw herself.  She hated feeling dependent, she hated being vulnerable, she craved control.

Marty is a dependent, she is dependent on others for virtually all her care, she is dependent on me to care for her, me, someone she trusts 99%, not 100%.  

I asked one time if she trusted me completely, she said she trusted me 99% worth.  I then took the chance and asked her if she trusted me 99% of the time before the strokes and she paused, thought and told me, “No, it was more like 95%.”

Hey, it’s an improvement.

Marty, before the strokes, hated feeling, being vulnerable; it made her feel weak, out of control.  She chafed against the idea of needing help, it made her stiffen, it made her angry.  She was one of those you did not want to cross when she was backed into a corner or felt a little incapable, she could bite.

Marty, after the strokes, accepts vulnerability, she understands her needs, she understands that the scars on her brain limit what she is capable of doing.  None of that means she truly accepts it, none of that means that the part of her personality, the part of her ego that took pride in independence is gone, it may be scarred, but it is present.  She is aware of her frailties and she does not like them.

I watch Marty as she is necessarily rolled from side to side to be dressed.  More often than not she closes her eyes; she closes her mind to what she perceives as the indignity of what is happening to her.  It doesn’t matter how careful we are to preserve her dignity and privacy, what is happening is contrary to her core nature, contrary to the core of the woman I met almost 40 years ago and she knows it, she is fully aware of her loss.

When I met Marty she was smart, funny, independent and not vulnerable in the least.  It took years for me figure out and understand her soft spots, it took years for her to begin to trust me and it wasn’t trust 99% of the time.  She wanted control, she wanted to do it her way, she wanted to do things the best way and that was her way.

She’s not that much different today, she just understands she has to relinquish control, she has to accept vulnerability, she has to live with others doing things for her she would never have allowed anyone to do, even me, maybe especially me.

Its part of the crime of stroke, the scars rob you of your physical abilities, they take memories, they take mental skills, they take fine motor skills, they steal muscle control.  But with Marty, they have left her awareness of the past and the present.  And while the recognition of that loss is dreadfully painful for her and for those who love her, I am so grateful she is aware.

It feels wrong, but I find I’m grateful of that awareness, I’m grateful she is aware of the people who know love and value her.  I’m grateful she knows and understands how much we are willing to do to care for her.  In many ways we are lucky because she knows the sacrifice, she knows the effort; she knows what is happening not to her, but for her.  

She understood life and love and pain before the strokes.  

I know she recognizes what she sees most days, she understands.

It’s the pain of loving; it’s the pain of being loved.

Sunday, September 8, 2013

40 Years of Patricks

He was sitting on a rock just off Hwy 434 in New Mexico.  He could see Blacks Lake from his perch as he tried to get cell phone reception to call AAA to come unstrand him and his mini-van.

We traveled to New Mexico several times with the Patrick’s, friends with children, friends with children our age, friends we had come to know through various circumstances.

Pete and I would take the kids on the 60 minute trek through the canyons of New Mexico to ski at Angel Fire or Sipapu.  They had three, we had two and as I remember it we had a couple of spares.  Marty and the better half of the Patrick marriage stayed at Marty’s parent’s house and slept, drank coffee, talked about their families and generally enjoyed mountain solitude.

We were about 15 miles from Angel Fire when the Patrick’s van slowed and then stopped on the side of the road.

Pete is career Navy and served on really big boats and has wonderful stories and is never frazzled.  He took the break down in stride even though we were clearly in the wilds of New Mexico with no passing traffic and only a passable knowledge of the area.  

Pete had been through naval SERE (survival, evasion, resistance and escape) training, I assumed he could handle being stranded and I could supervise the gaggle of adolescents skiing.  I’m not sure who got the best end of that deal.

We piled the gaggle of teenagers into our periwinkle blue Expedition, affectionately called the whale, and we waved at Pete, sitting on his rock raising his analogue cell phone in the air trying to find reception.

When I got closer to Angel Fire the mystical waves that drift in and out to connect to your cell phone became more frequent and I called Marty and Sue and told them of Pete’s plight and how sad he looked sitting alone on his rock.  They grumbled a bit but agreed to pile into our last vehicle to check on Pete.

I skied with the kids, trying every now and then to touch base with Sue, Marty or Pete the Naval aviator who was ground bound.  We eventually finished the day on the snow and loaded up once again to make our haul back to Penderies and the house.

As it turns out Pete did get a cell signal and called AAA who managed to find him and the Patrick mini-van.  They picked Pete and the van up before Sue and Marty could make their way through the canyons to the site of the stranding.

As a Navy wife Sue has tracked down Pete all over the world as he did his tours.  As an ex-Navy wife Sue started her hunt for Pete.  Sue and Marty tracked him and the broken van to Taos, a wonderful New Mexico city some 60 miles from where Pete sat on his rock.

When Marty and Sue got to Taos they found the van but no Pete.  Sue, undaunted and knowing her Pete asked where the nearest casino was.  Pete was a found dude sitting at a table, chilling and gambling.  

We eventually all made it back to Penderies, me with the kids and skis, Marty with Sue and Pete with his now repaired van.  Pete and I sat on the back deck that night in the cold mountain air and smoked his cigars and I marveled just a bit at the joining of Pete and Sue and how well they knew each other.

As it turns out, these friends of ours are celebrating 40 years of marriage today.  They are true and faithful partners and have made a family that is getting bigger as the children we watched grow became adults, married and are having children of their own.  Marty and I have always felt privileged to be a part of that family.

It’s this family, the product of those 40 years, that we skied with, that we sat in church with, that we ate meals with, that we could always count on, even when Marty had the strokes.

It was Sue and one of her friends who came to our house and helped clean it after Marty’s first stroke.  It was Sue I called to meet Marty at rehab when we finally made it to rehab in Waco.  

It was Pete and Sue I sat with one afternoon not long after we came home after the 2nd stroke when I was filled with so much doubt and fear and I wasn’t sure if I could do this, if I could really care for Marty.  It was Pete and Sue who looked at me and said they would support me and be there for me whatever happened. 

It was their youngest son who reached out to us and invited us to his very small wedding; it was their family that allowed us to be our “new us” for this very special occasion.  

It was their daughter who came to our house to tell us she was pregnant with their first; it was their daughter who still sends us birthday cards and mother and father’s day cards every year.  

It was their middle son who came to see Marty and sit with her despite how hard it was for him.  It was Pete who called and called to get me to play golf and get me out the house.  

It was this family, Pete and Sue started 40 years ago, that has made our life so much better. 
Happy anniversary my friends.

Sunday, September 1, 2013

A Real Rock Star

I’m not sure why I am always a bit surprised when people go out of their way to help us, but, from time to time people extend themselves and make you feel special.

Getting in our dentist’s office is no easy trick.  You have to go in one door, make a sharp left, open the inner door, turn Marty’s wheelchair while holding both doors and then enter.  The receptionist met us at the door and looked at us kind of funny, it made me wonder.

As we walked in the last door the receptionist watched us make our way in and started looking at her computer.  It dawned on me, they hadn’t called to confirm our appointment, ah man? 
I asked, “Are we here on the wrong day?”

She said, “That’s what I’m looking at, I don’t think we have you scheduled.”

“Nope, you’re here a week early, Marty’s appointment is next week at p.m.”

My brain finally engaged; it was the last Wednesday in August not the first weekend in September, our appointment of course was in September.  What a moron, I even had it written down correctly in my planner, I just hadn’t looked.

The receptionist said, “Hang on, we may be able to work you in.”

She left, we sat, Marty smirked, I squirmed and apologized a couple of extra times for good measure.
“Yep, we can get her in, just wait a bit.”

“A bit” turned out to be about five minutes.  We did the teeth cleaning thing which I hate only a little less than Marty and were in and out in about 45 minutes.  We were done a week early.

As we walked out past the receptionist desk I apologized again and said thank you.  The receptionist said, “No problem, you guys are rock stars here.”

Two days before all of this we had been at the office of Great and Wise to get blood drawn for lab tests.  As a result of Marty’s recent hospital stays we have been working with an infectious disease doctor and they wanted to check her immunoglobulin levels.  In short we are checking Marty’s antibody markers to see if they are working right.  (I have now explained all I understand about that)

The infectious disease doc’s office was supposed to have faxed over specific orders to Great and Wise’s office to make the right kind of blood draw.  Of course that had not happened.  No biggie, Great and Wise’s most excellent nursing staff got on the case and in a few minutes they had the orders in hand and had figured out what to do.

Personally, I never miss a chance when they get blood from Marty to do a CBC or complete blood count to check her white blood count to check for infections.  I mean she already has a needle in her arm she’s already bleeding into a tube they just have to fill one extra tube.  They filled the tube we agreed to touch base in a day or two and we left.

It normally takes 24 hours for the lab to run the tests and we generally get a call for the office with the result of the tests.  Tuesday we didn’t get a call but that was not unusual as Great and Wise shuts his office down at noon on Tuesday.  I called them on Wednesday while we were at the dentist’s office waiting to get back to the hygienist.

I called, gave them my information and told the lady just have the nurse call me back.
The nurse, one of our faves, called a couple of hours later and immediately started to apologize.  She said she didn’t know what happened but the lab had never received the vial of blood for the CBC.  She felt bad and said, “I’ve already talked to Great and Wise and I can come by your house in the morning to draw Marty’s blood again.  I don’t want you guys to have to get out and come up here, I’ll come there.”

Well, I was a bit floored and protested.  I told her that’s okay, thank you very much but you don’t have to do that we will come in the first of next week.  We hung up with her apologizing and me forgiving her for something that wasn’t really her fault or that big of a deal.

About five minutes later the phone rang and this time it was the office administrator, another of our faves.  She said, “She’s coming out tomorrow morning, we want to do this, it’s not that much trouble, she will call when she heads to your house.”

Okay, that’s what she did, April came to our house and while Marty slept and I stood there with bed head she drew blood.  We got the results the following day and Marty’s white count is normal, she is fine.

Marty’s life, her journey, is a struggle in progress.  She is in a constant fight for some sense of normal living.  She is, to so many who know and care for her, an example of living within the sometimes dark parameters of her life and because she does it with grace and dignity the people around her, at times, treat her like a rock star. 

It always makes my day.

So, Miley and you other wanna be rock stars, keep your tongue in your mouth and maybe come check my wife, come see how a real rock star rolls.