Checking back in - briefly

We had dinner with some friends this week. Hadn’t seen them in a while and it was fun catching up. One question came up “Why don’t you write your care-giver blog any more?” I didn’t have a good answer and probably still don’t. But I have given it some thought over the last couple days.

Being a care-giver in my type of role has become part of life. It is background, part of every decision and in many ways part of the daily routine. And there is another big reason, Annie continues to improve, take on more of her own decisions and routines along with a very powerful motivator on her part to break the care-giver/care-givee (sorry Mom I know that is not really a word) relationship we have. She really wants to give me my time back. She’s doing a pretty good job of it.

For me it is also a little of “I’ve had enough”. I’ve been in this role going on seven years. Many times you’ve heard that it isn’t a role anyone would relish or wish. People who are true care-givers are rare. When you come across on it is nice to see. Unselfish is a word I’d like to be able to describe something about myself but alas that is not to be. In truth it is my selfish side that breaths a sigh of relief as Annie gets more self sufficient.

So what is this all about? Another friend came by last night and in her inimitable style asked directly about “plateauing”. Not the term she used but wondering (in a very nice way) if this was all we would get in terms of Annie’s recovery. The answer of course is no. Annie will continue to improve. Why? Her determination seems to have no bounds. She has positive mental attitude almost every day. She tries every day. She wants to learn every day. Whether it is biking out doors, learning Spanish, reading voraciously or working on a project, she attacks it and tries to master it. Sure there are setbacks, this was a terrible injury. But mostly we continue to move forward. Annie trying to dominate her injury and me trying to get over it. It’s a funny world. 

Looking forward

I believe my mother has this down to a science. She doesn’t dwell on what should have been. I’m pretty good about it. In the moments that thoughts creep in about what could have been I think about making something. Slowly in my head I begin to fit pieces together. Being on the Singularity Transmissions team headed for Burning Man helps this particular process a lot. There are many pieces that have to fit perfectly – many.

I got an email yesterday from a friend who is going through some tough times. He and his wife, a couple who have had a similar experience with stroke, are struggling with frustration. They are in the beginning of their second year of new stroke life. The email, coupled with a Sunday Times (Styles) short on Modern Love, prompted me to get back in the writing game. The story is written about a couple deciding to divorce but not in anger. They have different interests in how they want to live the second half of their lives. Why do all these things come together for me?

The friends here in town are really having a rough go. They probably (I really don’t know for sure) are struggling with her frustration at being impaired and his at not but wanting life to go back to normal. He works full time (has to) and she feels abandoned on a daily basis. It’s the stroke. It’s the damage. It’s the mental processes not being fully reformed. And they may not be for a long time. He feels at times like he’d like to leave it all behind but duty and obligation kick in and he stays. The Times story talks about this couple amicably going separate ways. The Times couple (admitting they have plenty of money) acknowledges it will be bumpy for a couple years but they decide they want to do this. They begin to look forward.

I won’t suggest my friend do this but I did say it could come to that. It may be better for all involved. Revel in what you can do. Look forward to things that could be fun under the circumstances. Above all don’t look back at life before stroke. That is not coming back. 

Incremental Change

I don’t always see it. Sometimes it takes a person from the outside, because of a longer time gap, to see real change. Progress in Annie’s cognitive skills has not – as many Doctors suggested – reached a plateau point. I think this time it is the project she has just finished. Having work has kicked her up yet another notch.

From the very beginning it was painfully clear there wasn’t a whole lot known about brain recovery. I’ve believed environment has a lot to do with recovery and of course the particulars of the injury. I wrote previously about the German Doc’s at the National Institute of Health saying their biggest challenge in brain injury recovery is the environment the survivor returns to. If there isn’t a stimulating environment the survivor will not progress. That stimulation may be not helping them do something or challenging them in such a way (seemingly negative to some) that they are forced to adapt. One such was making Annie work to walk by saying she couldn’t go somewhere if we had to take a wheelchair. Sure, it was self centered desire (try hauling one of those things in and out of a car day in and day out – my hat to those who’ll put up with it), but she was also motivated. The same goes for the work she has recently completed. She would be left out if she couldn’t do the work so she figured out how to get it done. And the process gave her new confidence.

We remain very proud of her.

On a side note, a direct approach is always better with the handicapped. If it is too much trouble to deal with them – spontaneous trips, last minute outings, extra driving – just say so. Annie knows bringing her along requires some planning. Homes, restaurants and theaters have to be reasonably accessible, cars have to be relatively easy to get in and out of (e.g. my brother’s Tesla is almost out of the question), and you have to allow for extra time. She may protest a little but a hard “no” is better than a soft ‘well, maybe we are, maybe not” or “we haven’t planned”, every time. She’ll get over a hard “no”. 

An infinite number of monkeys and typewriters

An artist is defined by his or her body of work. Body of work, artist, no body of work, not artist. I said I would call myself an artist after I had made 100 sculptures. It doesn’t matter to me whether they are large or small, just that they are each unique from the one before. It’s hard to do this. Sometimes I look at some of my earliest pieces like “Resolve” and wonder if I can do that again. Other times I say, “Sure, what’s next will be unique and own its particular space”. But they’re not always good and like life good things balance with the less good. There are a number of my pieces living out their days in the woods. Quietly returning to the earth in the form of rust. But I have learned something new from every one. And I’m crowding 100.

Just in time too. My nephew is graduating from Pratt with a BFA and he is really good. A painter, and innately blessed with talent, we’re going to see some fun things come out of his studio. Thanks to family I get the opportunity to try and engage him in collaboration. I’ll learn from his experience and perhaps I can show him a thing or two from the errors I’ve made. This will be a lot of fun.

The other day my brother asked me if Annie is happy to be alive. My response was “Yes, 90% of the time”. And it isn’t that she doesn’t want to be here the other 10% it is just that sometimes it is very hard to keep doing everything she has to do just to make it through the day. But the rest of the time, with interesting things happening, art flowing forth, nephews with real talent (his mom and my dad flowing through) getting out into the world, she’s glad she is getting to see this phase. I am too. We wouldn’t miss this next generation’s impact for anything. 

A plethora of projects

It is good to be busy. I have a number of projects coming my way and while I’d like to do them all I’ll have to let some go. Work is good. Making art is good. Both are filling my days well. Yet, each time I finish something I’m left with a tiny bit of emptiness. It isn’t a negative feeling just one of “okay, what’s next?”. But continuing to grow, improve and learn is what these projects are all about. Like care-giving and therapy. Each successful turn is fulfilling. Each turn a moment of reflection.

I have always admired my mother’s curiosity and desire to continue learning. Perhaps a little of it was passed on. I know my paternal grandfather’s ability to work with his hands was. So the fish pictured below is about the schools of fish that form a larger “creature” in order to fend off aggressors. Maybe it has a shade of Gestalt theory and therapy like most of my art. I am learning and hopefully improving. Making things is…

Regardless, this one is finished and perhaps it will hang somewhere other than on my paint rack.

A most interesting conversation

Important and telling words come from the most unsuspected directions. I’m having some work done on the house. As my brother says “Keep everything sale ready”. Not that we are going to sell, but keep your options open and enjoy the house in always "like new" condition - and enjoy the improvements. The owner of the company, (we’ll call him Jerry), doing the work stopped by to check on the job. He liked my sculpture and was quick to mention the pieces he liked in particular. He also was telling me about another sculptor in the area, Damian Prior. Damian’s works are all over the country.

We began to discuss art, life and surprises. Turns out Jerry is also a caregiver. He has a daughter born with complications (now grown) that took a tremendous amount of care and toll. He has been in the role of a caregiver for the majority of his life. He deals with stress by working - though even he says he doesn't need to work as much as he does. His team of workers is largely self sufficient and very good. They clean up as they go along and are incredibly fast. They'll be out of here in two days. Jerry is going to bring his wife out tomorrow to see my art. I’m flattered since she apparently is an artist by training. Jerry is also a caregiver to his wife. The stress of her caregiving to their child proved to be very tough on her.

While discussing art, life and surprises we covered a lot of ground in a short time. We quickly agreed that there is always someone who has it worse. There are lots of small joys in life if you keep your eyes open. There is a lot to be said for taking advantage of opportunities to take care of ones self. Bear down, stay focused and keep moving forward.

When Jerry was doing some work at Damian’s ranch he noted sculpture all over the place – sort of like it is here. Damian told him, “Oh, that’s just inventory. It will all go someplace”. I like that. Damian died last September at 61. He never complained about his cancer.

An interesting juxtaposition – Art and Healthcare

I’m in the middle of two fascinating worlds. On one side I am surrounded by art, on the other I am deep in the healthcare world. I’m involved with both for the same reason – passion.

When Annie was hospitalized I was unable to make sense of the healthcare system. The “nod and wink” billing, the unfathomable amount of waste and most of all the errors. I was left with the feeling I must try and do something that might have an impact in a positive way. And it is hard to do. Whenever there are huge volumes of financial “flow" there are even greater levels of resistance to change. Five years later I am immersed in the side of healthcare software that focuses, through competency, on improving patient outcomes. It is a rising tide. Cost cutting and legislation are having a negative impact on patient outcome. Skills checking, checklists and required maintenance for up to date skills are the counterbalancing positive.

There is a parallel to what I am doing in the art world. Maintaining ones skills in medicine requires didactic as well as “hands on” application. It is the same as making in art. I can read all I want but until I apply the learning to my process I do not improve. And the passion? Yes in both. I would never want anyone to go through what Annie went through just on errors in the day to day process of keeping her alive. Without diligence the mistakes made could have been fatal a number of times.

Checklists and competency training are key to a good outcome whether you're starting an IV, connecting a welder or turning on a table saw. Checklists, competency training and verification of skills have made the airlines very safe. The same needs to apply to medicine.

Now to work on those studio checklists…

Urban Bones - Those distressed rebar rods that come to the surface as we excavate for new construction. Makes an interesting table base.