The Valley of the shadow (so blind to see…)

[Note: I went back and forth on whether to post this, but I finally decided to do it.]

I’m writing this on the eve of the one year anniversary of my mother’s death and reflecting on where I was a year ago compared to now. So much has changed, and yet so much is the same. Isn’t that always the case?

The biggest shift has been in how I feel and react. Last year, I was incredibly stressed out. I didn’t want to be, but I was. I remember sitting in the Zen garden outside of the Yoga Hut, listening to the breeze in the trees and tolerating the heat because it was the only quiet, serene place I could find. I sat there deeply breathing in and out, grounding myself, and intentionally registering every sound that I heard. My home (including my own beautiful backyard garden) was “ground zero” for chaos and stress, but the Yoga Hut offered me a place where I could meditate without being bothered by people who were creating drama and conflict.

zen garden

zen garden

Now I’m sitting in my living room and typing. I couldn’t do that a year ago. I rarely sat in my living room because I would have been interrupted by a nurse, or if there was no nurse present, I wanted to be sitting by Mom in her room. The night before Mom passed away, I did sleep on the couch, though, when I finally went to sleep. I didn’t want to go across the house to my bedroom because I wanted to stay as close as possible. I stayed up for as long as I could muster, but I finally had to sleep a little.

And then when I woke up, I was angry because a hospice nurse had arrived early to take over from the night nurse (a woman who had been with us for a couple of years). I didn’t know the hospice nurse–had never met her–and I felt like she was invading our space. She was incredibly sensitive to our needs, though, and after she had oriented herself to our space, she sat on the sofa, in the exact spot where I am right now, so that I could have time alone with Mom.

goodbye kiss

Goodbye kiss

I think that the biggest frustration was that I felt like I had very little control over what was going on in my home. And yet, in reality, I had far more control than I had ever wanted. You see…this is something that I haven’t talked about publicly…I decided which day my mother would die on. It seems surreal to type that, even now. I didn’t really decide because she could have died at any point in the three years and eight months (to the day) that she lived on a ventilator.

I remember Thanksgiving Day in 2007 when I performed CPR on her. As she was lying there unresponsive, I thought to myself, “She’s not dying. She’ll die if I don’t do something, but she’s not dying on her own.” She wasn’t breathing, but she didn’t seem like she was dying. I didn’t feel like her spirit was leaving her body. It’s hard to explain, but that’s how I felt. She came back that day and went on to live several more years in a condition that very few people survive long-term…on a ventilator.

after the trach

After the trach

There were other close calls, like the time that I used a machine to suction blood that was spewing out of her trach like Old Faithful. Yeah, that’s how I described it to the 911 dispatcher who fielded the emergency call, seeing as how I didn’t know the clinical term “hemoptysis.” By the time the first responders arrived, Old Faithful had stopped, and Mom was stable for the next few days. Then she developed a blood clot in her lung from the blood that had finally dried up. I watched her pulmonologist vacuum that thing out with a bronchoscope, as I stood there in the ICU giving him updates about her oxygen saturation level. That was a long night.

Even then, I didn’t feel like she was dying. I don’t know why Mom couldn’t die on her own, but for whatever reason, she couldn’t. In the final days of her life, she had developed what appeared to be sepsis (a bacterial infection that has moved to the bloodstream and proceeds to attack every cell of the body), but still she held on. I say “she,” but it was her incredibly strong vital organs. Mom wanted to be free of this world, but her body wouldn’t let her.

I prayed and prayed that God would take her. I didn’t like the responsibility of having to decide when to discontinue life support, but it became increasingly apparent that I would have to make such a decision. I thought back to my junior year of high school when the spring debate topic was “Resolved: That the right to die is equal to the right to life.” I won the semifinals round at the regional tournament by pouncing on my opponent Meredith after baiting her into saying that, for her, a “quality” life meant having “two closets of clothes, parents who loved her, and lots of friends.” Mom had all those things. But, of course, how could your average middle-class 17-year old know what “right to die” really meant?

Dr. Kevorkian. Physician assisted suicide. Oh, I get it now. I understand why more than half of patients with ALS considered that option, according to one survey. It really doesn’t get much worse, in terms of diseases, than losing all ability to move, swallow, and eventually to breathe.

In high school, it was a philosophical discussion. Never in a million years could I have imagined how that topic would relate to my own life. I sure am glad that I had the opportunity to explore it as a teenager, though, because I’d spent quite a bit of time researching both sides of the issue. And then when the Terri Schiavo story made headlines, I became mildly obsessed with the daily developments. Mom and I talked a lot about the case–it was before Mom became ill–and she said that she would not want to be kept alive if diagnosed as being in a persistent vegetative state.

I Googled Terri Schiavo just now and looked at some of the pictures of her. She looks familiar to me, almost like I knew her. Not because I actually encountered her, but because I know the look of someone who is being kept alive by machines. Mom and I didn’t understand what a feeding tube was back then (for those who don’t know the backstory, Terri died after her husband had her feeding tube removed, in spite of legal challenges by Terri’s parents), but I learned when one was surgically placed in Mom. Removal of a feeding tube in a terminal patient is not nearly as dramatic as the Schiavo case made it sound. But that’s another blog.

ICU at home

ICU at home…with the dog

Back to Mom, I don’t think of her situation as being a “right to die.” That phrase sounds simplistic in light of the complexities of her condition. She was already dying. It wasn’t an “if” but a “when.” And really, that’s true of us all. We will all die at some point, no matter what we do to postpone it. In Mom’s case, death was far more imminent. She had a terminal disease, and without the ventilator, she couldn’t survive more than a few minutes.

Well, I say that, but it’s not entirely true. After prayerful consideration and long discussions with family, healthcare providers, pastors, and very close family friends, we decided to disconnect the ventilator on June 7th of last year. I say “we,” but technically it was me. I had the sole legal authority to direct hospice to discontinue life support. They could have challenged me, I guess, but as Power of Attorney, I was the one whom Mom had entrusted with life and death matters. And that terrified me.

No one signs up for that early on in life. I certainly didn’t aspire to having that kind of power when I was young. And even as an adult, I tried everything to avoid making that decision. I stalled…I prayed for God not to place me in that position…but eventually I realized that God wasn’t going to intervene as a deus ex machina and rescue Mom (or me) from the situation. That’s not how God works. Mom was dying, but she couldn’t die. And in the meantime, she was suffering in ways that I can’t begin to imagine as she lay in bed wishing that she could be done with it all.

To be clear, Mom died naturally. It’s illegal in the state of Texas–and in most of the country–to perform assisted suicide. Mom was given Ativan and morphine to make her comfortable, but the dosage was not lethal. I knew from past experience that Mom would go to sleep after receiving 1 milligram of Ativan, but that certainly wouldn’t kill her.

So the doctor and nurse administered the comfort medications before the doctor disconnected the ventilator. Mom looked so peaceful when we started the process because she was finally being relieved of her horrible disease. Yes, she had personally chosen the ventilator–it wasn’t my decision–but we had no idea she would survive that long on it. Most people don’t even survive a year.

Now as I think back on those last few days, I’m glad that I finally accepted the role that Mom had entrusted me to fulfill. The one thing that I have never wanted to be remotely responsible for–another person’s death–was the one thing that I had to make a decision about. I know that I wasn’t really responsible for Mom’s death–the disease was. And I also know that I performed life-saving emergency techniques on several occasions over the course of her illness. All the same, I really didn’t want to have to request the removal of life support.

The alternative, however, was much worse. Sepsis is no picnic, especially with a patient who does not respond to any antibiotics. I feel the need to make that qualification because, for those who might at some point have a loved one who develops sepsis, it is treatable under most circumstances if caught early enough (before septic shock kicks in). Antibiotics can be pretty amazing. In Mom’s case, she had four different antibiotic-resistant infections that had been camping out in her body for quite some time, and she was no longer benefiting from treatment. Blasting her with antibiotics would make her weaker, not stronger, and she was tired of it.

Ironically, even though I didn’t want to make a decision, I realize that one of my biggest fears was averted by the discontinuation of life support. During the time that Mom lived here at home with me, I worried that I wouldn’t be here when she passed away. It kept me from venturing very far from home, especially for extended periods of time. I rarely left Denton because I wanted to be able to rush back at a moment’s notice if necessary.

I remembered speeding to Houston as my grandmother was on her deathbed and hoping that I would make it in time, back in 2006. My mother (who hadn’t become ill yet) told my grandmother to hold on because I was on my way. And she did. I sat with her for quite some time before she passed.

The lesson in all of this is that we can’t control everything. My friend Ben Riggs told me last fall that control is an illusion, and the feeling of being out of control is not real because “control” does not exist. What a profound thought!

So I didn’t really have control over when Mom died. And I didn’t have control over whether or not I was present as she passed away. But somehow or another, I was there, holding her hand, telling her that I loved her (my very last words to her), and knowing that she died as peacefully as possible under the circumstances. She was calm…serene…and she knew that she was loved. Isn’t that all that any of us can ask for?

This was a gift to us in the midst of a cruel disease. It’s not something that everyone in this world receives. Somehow we have to make sense of that. Again, control is an illusion. Mom’s death was choreographed in a way–timed down to the hour so that we could ensure that the pathologist would be able to harvest her tissue and organs for donation to a research hospital that (unbeknownst to us at the time) would discover something in Mom that has impacted research into neurological diseases more generally.

I was actually on the phone with the pathologist less than an hour before Mom’s vent was disconnected because I was so worried about making sure everything was lined up. The research donation had been my other big fear because, as something of a researcher myself, I knew how important it was to get the best possible specimen.

With all of that in mind, when I think back on Mom’s illness–and her death–I feel calm and at peace. I learned so much during those years, and more than anything, I learned that everything will work out somehow. Some things worked out the way I wanted them to, such as Mom’s actual passing (well, not the way I thought that I wanted, but the way I ultimately needed) and the tissue donation, while the bigger things weren’t so great. I wouldn’t wish a motor neuron disease on anyone…and I mean anyone…not even the most vicious and cruel people on this planet.

But in spite of that, I do know that I felt more love during the past few years than I ever could have imagined. I miss my mother sometimes…when I really think about it…but I am eternally thankful for what we were given. I have no regrets, and I am incredibly thankful for the “life beyond death” that I’ve been exploring in the past year.

Life before the disease

Life before life ever after…in Hawaii a year before the disease