How Do You Feel About That

“How do you feel about that?”  It was a big question for Marty; it was an important question for her, it was a question she taught me ask. 

First you ask, “How do you feel about that?”, then you work on learning to listen to the response, then you learn to quit saying, “Well, you should just quit feeling that way, that’s dumb.” 

Uh, yeah, guess what was dumb, saying that.

Yes, I know, how could someone enlightened ever utter those clearly stupid words?  Clearly I haven’t always been that enlightened.  Clearly, living with Marty and listening to her has led me to great wisdom.

Marty taught me, not without some screaming and shouting, that other people have feelings that I may or may not understand.  Other people may have feelings that make little sense to me and it doesn’t matter if I agree with the feeling. 

Unfortunately, or fortunately, I’m not in charge of how other people feel.   Other people get to feel based on their perspective and life experiences, I can’t change it, I can’t fix it, and my thinking their feelings are stupid is….well stupid.

I learned from experience that Marty saw and understood things differently from me.  As much as we were alike, our life experiences were different enough, our psyches diverged enough that we saw things differently and felt different things.   

It was ridiculous for me to pass judgment on her feelings based on what I felt, on my experiences.  She was allowed to have her own feelings, she was allowed to be sad, happy, mad, or distraught even if I wasn’t and to discount those feelings were discounting her and just plain wrong.  We have to try and understand another’s perspective before saying, “Well, it’s dumb to feel that way.”

So guess what white people, we don’t get to tell the black folks in Ferguson, Missouri or any other place how they should feel or act.  We don’t get to say you shouldn’t feel mistreated and mistrusting just because we have never felt that way.  

If someone I have lived and loved with for 40 years has had different feelings and experiences it’s a lead pipe cinch that African Americans will have had different experiences from my white, privileged self. Our experience as white folk is different than those who have too often been mistreated because of pigmentation.  We don’t get to pass judgment because we don’t agree with the feelings of anger, fear and distrust.  You can disagree, but you can’t say it’s stupid for those folks to feel anger and fear.

The simple fact is we don’t have to know or understand or agree or validate those feelings.  We do have to respect that other people legitimately, because of their lives, see things and feel things differently, not better, not smarter, not dumber, just different.   

These feelings, these emotions aren’t always productive, I get that.  In fact, they are sometimes counterproductive and are expressed in ways that are damaging.  That does not negate the fact that people feel for different reasons and we don’t get to discount those emotions.  It works best if we can try and understand why people feel the way they do.  Frankly it’s not that hard.

Marty’s mother, Jean, once wrote me an incredibly nice note and thanked me for loving Marty.  She thought I brought out the best in Marty and thought I had helped her learn empathy.  

Truth, Marty is the one who helped me with empathy and understanding; she is the one that taught me to ask, “How do you feel about that?”  She is the one that taught me that all I needed to do was accept other’s feelings, not pass judgment on them for feeling something I didn’t understand. 

I still ask Marty how she feels about stuff.  More often than not I get a standard, “I don’t know” response.  I suspect that is the truth.  Through her stroke fogged brain she probably doesn’t precisely know how she feels about something.

It doesn’t matter.  I know she still feels, I know it still matters to me and I know how she feels belongs to her.  My job is to ask.

Thirty Seven Year Old Promises

January 3^rd, 37 years ago we married.  We stood at the front of the First Presbyterian Church of Dalhart Texas and plighted our troth (love that phrase….how many times can you say “plighted your troth”).

It was cold, it was clear, the sky was blue.  Marty reminded me today that it was 1 p.m. on that first Saturday in January when we did that troth thing. 

I don’t really remember standing at the front of the church; I don’t really remember saying the words.  We have pictures that prove we stood there and walked the aisle so I know I did, I know we did, but I don’t remember the specifics at all, except through the pictures. 

I do know what we said; I know we promised things, important things, deep things.  I know, on the whole, for these 37 years we have kept those promises, in health and even in sickness. 

I can’t say for sure I would have made those promises had I known the future.  I can’t say I would have stood there, irrevocably confident in the future, if I had been able to see 30 years in the future.  I don’t know for certain I would have been able to promise the whole sickness and health thing if I had known, 30 years later,  Marty would slump over, her face slack, without muscle control, unable to speak, broken by the second stroke.  I just can’t say if I would have stood there and promised my faith and love to someone who would break in such a terrible way.

Today, on this day, we went to see Les Miserables.  Marty loves musical theater and Les Mis is one of her favorites.  I love it too and they have done an excellent job with this film.   If memory serves Marty first saw Les Mis in Houston with our daughter Erin.  I apparently was too busy being a captain of industry to go.  I first saw it in London with Marty, Matt and Erin.  I was moved then, I was moved again today, for a lot of reasons.

I have always loved the music, it feels so lyrical, it builds emotion throughout the production.  Marty loved the music and the words.  The words, the ideas behind the words moved her.  

The movie, like the play, climaxes as all of the intertwined main characters come together, as Valjean plaintively tells Cossette in music how she had brought him to God, how she had taught him to love and “to love another person is to see the face of God”, I cried again, just like I did the first time I heard the song.  

Today it wasn’t  just the music and lyrics , it was more than that, it was also the memory of sitting with my Marty and holding her hand as tears drifted down her cheeks because of the those words. 

Those words meant a lot to her, “To love another person is to see the face of God.”  As I look back at our life I realize why those words tugged at her, those words closely defined her own thoughts about love….and about God.

Marty doesn’t cry anymore, a gift and a curse, mostly a curse.  She sat there with me and watched this very long movie dry eyed as I took my sweatshirt and dabbed my own eyes.  I believe, somewhere, somewhere deep in her soul, that part of her that loves and cherishes music, that part of her that loves and cherishes those words, that part of her that loves and cherishes me was just as moved today as she was the first time we saw Les Mis together.

It was right and fitting that on our 37^th anniversary we found ourselves sitting together, listening to this magic, together once again.  And yes, I cried again, not sobbing like a child, I cried man tears, wet cheeks and stuffed nose in the protective dark of a theater, with my broken wife.

If I had known the future, if I had realized the pain and trauma of the strokes, I can’t say for certain if I would have had the courage to stand there that cold day so many years ago and made promises.  I can say for certain that if I had seen the future and known how I would feel on this day I know for certain I would have said those words.

Emotions Came Up

I haven’t seen Marty shed a tear in seven years and brother; she has had many reasons to cry.  I haven’t seen Marty purse her lips, rub her chin and narrow her gaze with anger since the strokes.  Her emotions are tamped down, the fire that once burned is subdued.

After Marty’s first stroke she became placid, quiet, and too internal for someone who was always very external in her thoughts, words and feelings.  After the 2^nd stroke, the woman who was once loud and brash became even quieter, more reserved and void of external emotional queues.  Her emotions are bottled up, seared over and sealed up by the damage to her brain.

But, emotions, feelings, are not to be denied forever.  They build, even for the most placid among us, like too much water in a balloon until they have to escape, until they have to erupt like ash and stone from a volcano.  I didn’t see it coming.

When I first got word that Marty’s mother had started to really deteriorate I told Marty what was happening.  It was a weekend we were at the lake and I could tell the news was on Marty’s mind.  She doesn’t always retain things she hears, those things she hears and remembers are a big deal.  She remembered about her mom, she was bothered, you could see it in her eyes and in her demeanor if you knew what bothered looks like for the new Marty.

When I asked her about going to Dalhart to see Jean she was immediately all in, yes, she wanted to go see her mother, yes, she wanted to go, yes she wanted to go right now.

We made the trip; we arrived in Dalhart late Saturday afternoon.  After we got settled I wanted Marty to rest a bit before we went to the world famous Bar H grill for dinner.  I also wanted to go to the nursing home and see Jean and kind of reconnoiter the situation, hoping I could see what was real and brace Marty just a little before she saw her mom.

Jean was in the dining room pulled up to a small table with another resident of the memory lane hall.  A nurse was trying to get her to eat just a little.  I watched as Jean sat there without any interest in the food, closing her mouth and shaking her head when it was offered.  Jean was sitting up in her wheelchair, good news; she wasn’t interested in eating and had lost too much weight, bad news. 

My ego wants me to think she recognized me as I knelt beside her chair in the dining room but I don’t really know if she knew me or just accepted I was someone safe.  She grabbed my hand, smiled just a little as I got close to her ear and reminded her who I was.  She didn’t say anything as I told her we had just made it to town and I would bring Marty to see her tomorrow.  She looked at me, clutched my hand tightly and said, “If she wants to.” 

She didn’t want me to go; she held my hand tightly as I stayed beside her chair for a few brief moments.  When the nurse came to move her back to her room she kind of forgot that she wanted me to stay, so I left with a heavy heart. 

I reported to Marty what I had seen; she didn’t seem fazed by it too much, she probably was too overloaded by the trip and the different surroundings to care what I said.

The next morning Renea, our steadfast caregiver, Marty and I went to Coon Memorial to see Jean.  She was in her bed, dressed, curled up, sleeping, sort of.  It wasn’t a deep sleep; it wasn’t a restful sleep as she continually moved around in the bed, moving her legs, pulling her right leg up under her left leg.

I tried to get Jean to come full awake but just didn’t have the heart to nag her too much.  I asked Marty if she wanted me to roll her closer and she nodded yes.  I pulled Marty’s chair next to the bed and sat beside her as she watched, upset, bothered, distraught over her mother’s condition.  “Skinny,” was all she said.

We had been there about ten minutes and I asked Marty if she wanted to go, she didn’t.  Jean had rolled over on her right side with her right hand resting on Marty’s chair, then she rolled on her left side with her back to us, that’s when Marty started to gag and heave just a little.  I immediately stood up and asked her if she was all right, a head nod, followed by continued gagging.  I asked her if she was about to throw-up, she shook her head no, and started to spit up a little bit of  phlegm. 

I don’t know why I do it, I’ve done it once before, I immediately cupped my hands under Marty’s mouth to keep whatever vile stuff came up off her shirt.  I hate vomit, it makes me sick, I don’t know why I would do that.  I nodded to Renea who was already getting a trash can, just in time to catch the morning’s breakfast. 

We left.

If you look you can find it.  There is something called sadness vomit, or at least that’s what Renea found and called it.  We went to the park by Lake Rita Blanca and decompressed, me fussing over Marty, badgering her with, “Are you okay?”, “Do you feel sick at your stomach?”  She probably thought, “Yes, at you.”

I think all of the sadness, all of the grief, all of the feelings of helplessness simply overwhelmed Marty.  The old Marty would have been at the nursing home all day and all night, she would have been looking at the charts, asking questions, challenging people.  She would have been talking about how sad everything was, she would have been dealing with her grief, with her worry, with her angst in tears, words and anger.

The new Marty, the Marty who has been changed by strokes could do nothing to help, she couldn’t adequately express or address the fear, the anger, the sadness she felt.  She simply got sick; the emotions erupted in a simple bodily function.  She vomited.

We got back to Waco Monday afternoon.  We were all exhausted from the emotions of the trip, the brief time away and the drive, the seemingly interminable drive across Texas.

Tuesday Marty and I talked.  It had occurred to me maybe when it was time for a funeral she might not want to return, she might want to avoid the emotional upheaval that is a certainty with a return trip to Dalhart.

Me, “I think it’s going to be a real simple funeral, is that okay with you?”

Marty, “Sure, it makes sense.”

“Do you want to go back?”

Resolutely, defiantly, emphatically, “Yes, I want to go.”

“But it made you sick, I worry about that.  What if you get sick again?”

“I might,” she said, not trying to reassure me, “You might want to bring a trash bag in case I do, I’m going to the funeral.”

That’s the Marty that wouldn’t worry about expressing her emotions.  That’s my Marty.

Just Because You Can't See It....

We were living in Muenster in the early 80’s when she threw a full glass of Diet Coke at my head. I can’t remember what we had argued about but I’m sure it was some earth shaking thing like leaving the toilet seat up. Marty could get really angry, really fast, she also laughed out loud easier than anyone I have ever met.

Marty’s passion about almost everything was visible, up front and out loud. All of this is to say I could never get by with telling Marty I didn’t know how she felt about something. If she was angry, I knew it, if she was happy I knew it, if she was sad I knew it. How she felt, what she was feeling was always pretty apparent, except when she was scarred or when she felt insecure, then her false bravado would kick in, she would not accept people seeing fear.

Then she had two strokes, two assaults on her brain that altered her personality. Today, in our new normal, it can be hard to figure out what she is really feeling. There are the logical responses to logical events, events that clearly cause nervousness or anxiety to rise but generally her affect is pretty flat, except when she finds something really, really funny or really, really moving in which case she laughs, at both, it’s just what happens.

At the lake we have a large pontoon boat in our boat house. The boat is on an electric lift and I can get the boat level with the dock and move Marty on the boat for an afternoon or evening cruise. She has a really good life vest and generally enjoys being out on the water with her kids and others, though at times I think it scares her just a little.

The other day we had finished one of our evening cruises and we pulled into the dock and I started lifting the boat with the electric lift, out of the water and up to dock level, it’s about four feet now that the lake is down a bit. I got the boat just barely out of the water when the boat quit rising, the lift quit lifting and we were stalled about four feet below where I could roll Marty off the boat in her wheelchair. It was a conundrum.

It was hot, the boat was not completely out of the water and was moving back and forth and there sat Marty in her wheelchair, in her life jacket with her blue sun hat and sunglasses on, just a little askew, stranded on the boat. No one really panicked but I was racking my brain for a solution.

I’m a big burly guy but there is no way I could lift her that far on my own. It just so happened number one son Matt, a bigger and burlier guy than I am was at the lake with us. We called him down and I explained what we needed to do to get Marty to dock level. We needed to get on each side of Marty, under each arm, under each leg and lift, first to a chair, then to the dock, then to standing, then to her wheel chair.

Piece of cake, right?

I knew we could do this and tried to represent a level of confidence to Matt, Marty and Nickie our caregiver. I don’t know that anyone was buying the bravado but everyone agreed to try it. I moved Marty to a bench in the boat and Matt handed Nickie the wheelchair. He then got on Marty’s right, I got on her left with one arm under her arm pit and one arm under her left leg and Matt did the same on the right side.

I looked at Marty and said, “Okay?” She nodded one of those what else can I be but okay kind of nods and I counted to three and Matt and I lifted to the first level, the boat rocked and we went back down, gently. The next attempt we agreed to go all of the way to dock level and with another one, two, three up Marty went until she was sitting kind of snickering on the dock. I don’t think she was amused.

Matt and I both clambered up to the dock, grabbed arms and legs again, stood Marty up and Nickie slid the wheelchair under her, crisis averted, no broken bones, no dislocated joints, just another tale to tell.

Later that evening as we were retelling the story to each other one more time I asked Marty if she was okay, to which she said she was fine, a pretty basic, ordinary response for her. I asked her if she was afraid while we were lifting her and she nodded and said, “yes, I was, I was afraid you would drop me.”

I said, “I will never, ever drop you, not now, not later, but I understand why that was scary. You didn’t act like you were scared.”

“Well, you might not see it on the outside but I was really pretty scared on the inside and you can’t see that and just because you can’t see it doesn’t mean it isn’t there.”

Another lesson learned, remembered from our life together. All that stuff, all that joy, happiness, anger, sadness and love are still there, it’s all still a part of her, barely manifested at any given time. All that stuff, all of the emotions that drove Marty to throw that Diet Coke at me so many years ago, is still there, deep inside. It’s like she said, just because you can’t see it doesn’t mean it isn’t there.

Of Underwear and Hugs

I don't know if I had to buy a pair of underwear for the first 50 years of my life. I’m not really sure what that says about me. For the first 18 years of my life my Mother bought me tightie-whities. For the next three years I just wore those until they were ragged. Then I married Marty and she replaced those ragged drawers with something more up-to-date, at least for the 70's. Marty kept me in underwear for the next 30 years except for the one time my daughter-in-law had to step in when we were caught out of town, then colored drawers were introduced, it was a new beginning.

Since Marty got sick I have had to buy my own drawers and do a lot of things for myself and by myself.  In some ways the experience has spurred emotional and psychological growth, in others not so much, it’s just been painful having to do so many things on my own. The singular thing  I keep finding; I get really lonesome. I miss my partner, I miss that person in my life who I would count on to make sure I had new underwear. I know, I'm a grown man, I can buy my drawers, I have purchased several pair, that's not the point.

Marty used to rag on me all the time about owning my feelings, understanding them, talking about them. Ugh, feelings and talking about feelings, makes me shake. I still struggle just to identify how I feel, much less own them and understand them. Marty on the other hand always knew how she felt and was who I looked to for help in clarifying my own thoughts and feelings,
And then there's the whole notion of fixing the bad stuff, fixing those bad, sad, grouch feelings.  I can’t count the times I heard Marty say, "I feel.....”  If this was bad feeling, I would immediately try and figure out how I made her feel that way and how I could fix it. I was told countless times, "don't try and fix it, just understand it".

I got that now, that's what I'm trying to do, owning my feelings, recognizing my issues and not expecting anyone or anything to do anything. This can't be fixed right now, I know that, I’m not asking anyone to do anything different, but I get lonesome. I miss my partner, I miss that person sitting next to me, I miss that person sleeping next to me, I miss having someone to bitch at and bitch to and bitch at me, I miss the dynamics of a full contact blown-up, blown-out relationship. I’m a touchy feely guy, I miss human touch, and I miss hugs.

I suspect I am like other spouses who evolve into full time caregivers for their chronically and catastrophically ill spouse. You are still married, still devoted, still in love, but some of the basic parts of being nurtured are missing, emotional and physical contact. I love my wife passionately and have always said caring for her is the most decent thing I have ever done. But, I miss the close intimate contact that comes with a partner, someone who has shared the trials, tribulations and joys of life.

I saw my father-in-law go through much of the same thing with my chronically ill mother-in-law. I watched him, and while he was often surrounded by friends and family who loved him, he missed his wife, he missed that person in his life who made him part of a whole unit. It’s one of the more difficult aspects of providing care for spouses; you just simply miss that part of full living.

I’m not asking for anyone to swoop down into our home and touch me. Matt, Sarah, Erin, Lyle you all do exactly what you are doing. You can’t fix this, no one can, it just is.

Just know a couple of things; my underwear is in good shape, our care givers throw them away when they get holes in them (while doing laundry) and if I perhaps hold you a little too long or a little too tight when we hug, just let it be and understand.