Being Mortal: A Reflection

I recently read a non-fiction book by surgeon Atul Gawande called, Being Mortal: Medicine and What Matters in the End. As someone who reads around 100 books every year, I can say that this is probably the most powerful book I have ever read. We will all get old and/or sick and die and so will our loved ones. It's not something we talk about much and are likely to avoid, but this book faces it head on. It asks and answers the tough questions. I highly recommend that everyone read his book. Here is my reflection in response to reading it:

I hadn't had a lot of experience with elderly care until I met my husband 6 years ago. My own grandparents had either died at home or passed away after only a relatively minimal stay in a nursing home-type setting. I was also in the neighborhood of 21 years old when the last of them passed on, so I can't say I was very present towards the end- preoccupied with college, dating, and being an emotional wreck.

I still remember one of the first times I visited my grandfather-in-law-to-be. It was a big dining hall full of lifeless beings, slumped over in their wheelchairs. My future husband and I were one of the very few visitors in the room. There was very minimal staffing, so if someone needed assistance eating (which was most of them), they simply sat there waiting until it was their turn, as the food grew cold. One elderly woman wailed loudly for God to please take her. No one seemed to take notice of this poor woman.

Now rewind a few years prior to that visit: Having worked a couple years in what was deemed "the Cadillac" of all group homes in the area, I had very strong feelings about how vulnerable people should be treated. "Bibs" were called "Shirt Savers," "Diapers" were called  "Briefs," and for a house of four residents, there were always at least two staff present. During my time there, we had all sorts of fun! I would bring over my record player (which my mom took home after her elementary school discontinued using them) and play soundtracks from my favorite musicals- South Pacific, The Sound of Music, and Fiddler on the Roof, to name a few. I would also read aloud classic children's literature like the Newbery Award winners, The Giver and Holes. We also went on field trips to the park, movies, bookstores, and restaurants (Places equipped with a blender were happy to puree meals for us). These people couldn't express themselves verbally, use the bathroom on their own, walk without assistance (if at all), hold jobs, or go to school. In spite of all those "disabilities," there was no doubt in my mind that we were creating a life worth living for these people. They laughed, they smiled, they touched our lives, and they became our friends. Employees actually fought over who got to work holidays, because it was always such a pleasure to make them special for the people in the home.

Back to Grandpa's nursing home: In the beginning, I would constantly scold my husband as to how he treated his Grandfather. He never meant harm, but he was still inadvertently treating him a bit child-like. I trained my husband on some alternative vocabulary that steered away from babyish language. I also urged him to explain to his grandpa what he was doing or going to do, so that he wasn't just shoving unrecognizable food into his mouth unexpectedly. Even though Parkinson's Disease had rendered him completely dependent, he still deserved respect and dignity.

The first time I saw that Grandpa's bed rail was zipper-tied in the "down" position, I was immediately alarmed and questioned the nurse on it. In my group home experience (and later, my x-ray experience), falls were a big deal and a huge liability. Bed rails were always up if the person was left alone or a fall risk. Unless you were young, able bodied, well balanced, had not fallen before, and were completely conscious and aware, then you were a fall risk. In my group home, that included everyone. In my hospital rotations in x-ray, that covered a majority of patients as well. So you can imagine that seeing a bed rail not only not being used, but tied down so that it couldn't be used, was alarming to me. Grandpa's nurse gave me some non-committal non-answer explanation, and I essentially dropped it. I convinced myself that I wasn't around for the past 80-something years of this man's life- so who was I to know anything about what was good for him?

When Grandpa later moved into a brand-spanking-new facility, I had high hopes. Finally maybe he could get out of that shit hole straight out of an old folks's version of One Flew Over the Cuckoo's Nest. It had large open spaces, private rooms including a bathroom, a ceiling based lift system, and walls with colors I imagined to be called "Forest Moss Green" and "Caribbean Beach Sand." All of it just fancy decorations masking the shit-hole-ness of the same old nursing home model. Staff was still severely limited, the food was still questionable, and my blood would boil every time I would see that Grandpa's false teeth or hearing aids were forgotten (yet again) to be put in. Whenever we came to visit, there was no one playing a game, doing a puzzle, listening to an audio book, or playing music. No one was ever walked (or rolled) outside. No one was ever doing anything except sitting or lying down in isolated silence.

I told myself that I would rather die than live like that. I was full of terror that someday I wouldn't be able to voice my opinion, that someday I would be trapped in a meaningless existence and there would be nothing I could do about it. If I was Grandpa, what would I want? Did he have any say in how he ended up living the way he lives now? If he could talk again, what would he say? Would he want to keep living? How much would he be willing to sacrifice to Parkinson's before he felt like it would be just too much? What would make life worth living in the first place? When is it okay to say enough is enough and let go? How did simply the act of "being alive" become the ultimate goal instead of "creating a life worth living"?

That line is different for everyone. I may not, in this life, know what Grandpa's feelings on the subject are, but I feel it is important for me to be able to answer those questions for myself. And I want to pose those questions to my husband, my parents, and my siblings, too. If anything were to happen to any of them (or myself), I want to be sure that our lives can end well, according to our wishes.

As someone who has experienced suicidal thinking and has attempted suicide on several occasions, I recognize that there is a line (or more of a vast grey area) between wanting to die out of depression and wanting to die because your body is falling apart and the suffering becomes unbearable. No, I don't want to get into an assisted suicide debate. That's not really what this is about. But there is a time when we all will have to decide: full code or DNR? ventilator or feeding tube? Medication or not? Chemo or nothing? At what point do the costs outweigh the benefit?

I'm not as scared about getting older anymore, because now I know that I do have choices and I can make them now.

Note: This topic will be continued in the next blog, "An Open Letter to my Nursing Home"

Holding on to Mental Illness

With only a month left to go, my year-long commitment to weekly DBT group and individual sessions is nearing an end. Part of me is desperate to be finished. I am eager to have more time to do the things I want instead of devoting it to therapy twice a week. I'll read tons more books, see more friends, go to movies, do more puzzles. However, that is where the excitement ends.

Depression and anxiety have been a part of my life for as long as I can remember. The therapy, the pills, the hospitalizations, the panic attacks are all constants that have followed me through life. They are this big squishy teddy bear that I keep near me everywhere I go. I feel comfortable with it in my arms. I don't know life without it. I don't understand how my life could ever be without it. What does that look like? Who does that make me? I wish it was clear cut: you either have cancer or you don't. There's no such thing as "sort of" having cancer. The ambiguity of mental illness frustrates and confuses me.

I've returned to weeping through therapy sessions, scared and unsure of the future. Desperate to have control over something in my life, I've amped-up my skin picking. Driving to therapy today, blood dripped a steady stream down my cheek, after I gouged out the sores that had barely begun to scab over from the last picking session.  Then before going in to my therapy session, I doused on the make-up to hide the aftermath. This version of ME I know and understand. I know how to pick and cry and panic and rage and alienate and sleep. Being a happy, healthy, awake, independent, active, involved individual is foreign and I am scared of it. I'm not sure if I can handle it. What if I try to take on too much and end up suicidal, back in the hospital, and starting again at square one? I am afraid that I will always be one step away from total destruction, but I don't know which step will hold the landmine.

If I take a higher level position in my career, will I crack under the pressure? If I start playing bass again and join an orchestra, will I feel crushed by the weight of the commitment? What am I capable of? Why should I believe that NOW I can handle life's challenges, that NOW will be different than the past?

Maybe I've gained more life skills than I give myself credit for. I know I need to trust in the skills I've been taught. I often chuckle to myself after a coworker faces a bitchy customer and I say something along the lines of, "You can't control other people's reactions, only yourself." I find myself parroting the life lessons I've acquired through this whole mental health journey.

I guess I don't have to figure it all out now. I still have a month left. And even after that, it's not like I have to quit cold turkey. I'll be able to hold on to the security blanket of periodic individual sessions for a while. I'm not sure how it's going to happen, but I need to let go of "mental illness" feeling like a defining feature of who I am, and allow myself to move on from that. If I didn't hold on to that label, what would I replace it with? Who would I want to be?