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.

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.

Crying Over the Right Things

Out of the blue she said, “You’re doing a really good job,”

I said, “Of what?”

“Taking care of me.”

In my life I have done some things, I have been some places, I have received some accolades. I have been praised by people in high places who had good reason to praise me, I have received awards, I have even had standing ovations after I spoke at a couple of gatherings. I love praise and admiration; I loved it when I was successful at my job, I’m a middle child, I live for approval.

None of that compares with the sweet, unprompted praise from Marty, “You’re doing a real good job.” The things that are most important, the words that mean the most have changed for me. Perspectives change as life affects you.

Somewhere along the line my feelings, the intensity of my feelings, my emotions have been amped up several notches. Small words of praise and kind phrases mean more, failure has more consequence, and fear is very real. In our previous lives Marty was the fiery one, the one who laughed the loudest, cried the longest and savored life the most. I enjoyed things, I felt things, but not like Marty, not to the same degree or extent she did.

Today, Marty’s affect is pretty flat. I know she experiences joy, fear, sadness, and the entire panorama of emotions; she simply is not as obvious with her feelings, you have to really know her and understand how her eyes speak for her. Me, my eyes, my mouth, my facial expressions have all combined to betray my faux stoicism. I have become the one who cries easier, who laughs louder and who carries their emotions more for the world to see.

The reason for the role reversal is very simple; the journeys we have been through have created a complete new normal for both of us and have emphasized the critical stakes of our day-to-day existence. Normal life mistakes, sins of omission, inaction have much higher consequences. When life’s events present you with the opportunity to look at your wife and see her slipping away from the here and now, when you have the chance to say to her, “don’t you leave me now”, it gives you a different perspective and life feels more intense and decisions feel more impactful and important.

In our life fear, guilt, distress and anxiety are all more amplified but, so are the joy, gratitude and love. Hearing Marty say, “Good job”, or “I love you” means more to me today than ever before and have a lasting impact on my day and my entire life. These simple words of praise far outstrip any past successes.

Perspective is an interesting thing. So often we don’t even know we have lost it and then we can’t find it when we most need it. Too often we bask in the unimportant, we revel in the minor. For me, for us, it took earth shaking changes to gain perspective, to understand what is really important for our lives together. I’m glad I found it, I’m glad I have a better understanding of the importance of our union and Marty’s approval, I wish I hadn’t wasted so much time searching for the golden ring in other places.

The words, “You are doing a really good job,” have never meant so much.

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.