Autumn leaves (for everything there is a season)

I’ve finally decided to write about a topic that has been hard to formulate into words. This post might offend some people, but there’s nothing I can do about it. Everything I’m saying here is what I honestly feel, and this is not a topic that I want to debate or be “persuaded” to take a different position on.

[Note: this is indeed a sensitive topic, and if you are dealing with the recent or imminent death of a loved one, you might not want to continue reading.]

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A friend of mine is grieving the impending passing of her mother, and she expressed her frustrations about how our society treats our elders. In particular, she commented on how it’s illegal in most states to perform physician-assisted suicide, yet perfectly legal (and mandatory) to sit by watching a terminally ill patient struggle to eat, drink, or even breathe. Even if the patient would prefer the dignity of not being forced to go through that extended, difficult, pain-filled process.

I’ve written about my mother’s death, but there is so much more I’ve wanted to say, especially as time has given me the ability to detach a bit from the emotionality of our journey. I’m still incredibly grateful for the gift of spending Mom’s final years with her, but I have also wondered about how things would have been different if she had died sooner. This kind of self-reflection could be dismissed as “shoulda, woulda, coulda,” but I’ve still found it useful because it’s helped me to formulate a better sense of my own moral and ethical views.

To be blunt, I’ve questioned whether we made a responsible decision in allowing Mom to remain on the ventilator so long. I’m not writing this to seek other people’s approval (or disapproval) of that decision…I honestly don’t want or need that. In fact, I really, really don’t want to hear statements like, “You did the right thing,” or “You did the best you could.” Those conciliatory comments are right up there with “God is in control,” “There’s a bigger plan,” and that sort of thing. I don’t know many people who find comfort in those words.

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So back to the point: there are times when I wonder if we should have taken Mom off the vent sooner. When she first decided to go on the vent, we had no idea that she would survive for as long as she did. We were expecting maybe six months if we were lucky, and we learned the statistical prognosis that less than 50% of long-term vent patients survive for a full year.

Mom wanted more time for us all to adjust to the reality of her terminal illness, and she was especially concerned about how one particular family member would handle the situation. She felt that “buying time” for a few months would make a difference.

But once you’ve elected to go down that road, it’s really hard to slam on the brakes. For one thing, vent removal must be done by a doctor, and for another, it’s really hard to identify the circumstances under which such a drastic change should occur. There is an institutionalization of sorts that happens with long-term acute medical care, and it can shape our thought processes. I found it difficult to transition from life-saving “rescue” care to palliative care because the two are so different. Once we finally found a hospice agency that would take on Mom’s case, they were incredibly helpful in that regard, but we still also had non-hospice nurses in the home who struggled to accept the change in approach.

One of the biggest conflicts I’ve had is questioning whether the amount of money spent on Mom’s healthcare (I haven’t added up the numbers from Medicare and everything else, but I estimate that it was several million dollars) was a responsible use of limited resources.

This is where the issue gets emotional: what would we be willing to give up for the benefit of others?

I experience this from simultaneously different angles. I’m so thankful for my mother’s presence in my life, and we grew so much closer (even though we’d always been close) during her illness. But then I think about how that money could have been used to help hundreds or even thousands of children who have no real access to healthcare.

In high school, I participated in competitive debate, and this was a sub-issue of our debate topic one semester. I remember having very strong opinions on the issue and quoting everyone from Kant to Aristotle to Ayn Rand (those who know me now might be surprised to learn that I was an avid fan of hers in my younger days) to defend my views.

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But the challenge is that philosophy and politics can’t really answer these questions for us. Philosophers can ponder the meaning of life in an intellectual fashion without ever getting to the heart of the human condition. Then politicians invent ridiculous concepts like “death panels” to exploit the fears of a public that relies on the internet and cable news pundits in order to raise campaign funds and manipulate voters. They might even act righteously concerned about ensuring that everyone has access to healthcare, even if they can’t seem to offer any viable solutions that move beyond sound bytes. Yet, neither the philosophers nor the politicians usually address the experience of sitting with a loved one who is dying, or the process of accepting one’s own mortality. That’s left to the mystics, who are often viewed as a New Age threat by religious fundamentalists more concerned with “thou shalt nots” than with experiencing God in the world.

I started this post by saying that I don’t want this to turn into a conversation where people who haven’t been through my experience to try to persuade me to adopt a different opinion. Perhaps that’s because I hold seemingly contradictory positions on the matter, almost in tension with each other. The tension is good, though. It’s through the “in between” spaces that we grow, whereas absolutist-fixed attitudes have a tendency to collapse when faced with the complexities of life.

As we move forward with necessary discussions about healthcare policy (not just governmental policy or private insurance guidelines, but also how medical institutions and practitioners interact with patients and families), it would be beneficial to spend some time reflecting on our own attitudes about end-of-life care. It’s not fun or comfortable, but ignoring the issue won’t make it go away.

In one way, this means taking the emotion out of it (I’m speaking specifically about fear-based reactionary emotions). But it also involves sitting in the sometimes intense emotions of what it means to be a human being who can’t survive forever, questioning what exactly we’re clinging to in this world, while acknowledging that death and dying can be painful, difficult, and grief-filled. We also need to be mindful that everyone’s situation is different, and one person’s decision might not be the best option for others.

For me personally, it means evaluating whether I would want millions of dollars to be spent on my healthcare, at the expense of countless others who have been dismissed as “not important enough” to receive even basic care. My mother made the best decision she could under the circumstances. But I wonder if she would have made that same decision if we lived in a society that isn’t so scared to have deep discussions about our own mortality.

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Life among the ruins

A family I met last week in Haiti has changed my life. It’s hard to know yet how exactly this encounter will affect me because I’m still processing it, but I’d like to share the story as it is right now. This is just the beginning.

The Wesley Foundation work team from CU-Boulder that I traveled with spent the week at a clinic run by Partners in Development, a Boston-based non-profit whose mission is “to serve the poorest of the poor,” which is quite ambitious in a country that was already impoverished before the earthquake two years ago displaced countless people who are now living in tents where one-room homes without electricity or running water once stood. PID runs a clinic that provides free access to basic health care, a mobile clinic that reaches residents of a tent city about once a month, a child sponsorship program, and a small business loan program.

While the rest of the team was assisting with the construction of a new house, I stayed behind at the clinic because my still-recovering ankle wasn’t stable enough for me to be at the muddy worksite (it is, after all, rainy season). The director of PID learned that I had experience working with children and asked me to meet with a single mother whose two oldest sons were habitually stealing and staying out all night. The mother (I’ll call her Marie-Jean) was stressed out, neighbors were complaining, and there was nowhere to send the boys (I’ll call them Daniel and Josiah) in order to get them to start behaving better. My task was to attempt to learn why the boys were acting out. We weren’t sure if I would have any luck, but we figured it would be worth trying.

I had to work with a translator because my Creole is very limited, and the family doesn’t speak English. I started out by directly asking the boys why they were stealing, and the response was not at all what I expected: “I’m hungry and my stomach hurts,” Daniel said. “We don’t have anything to eat at home,” Josiah explained.

The vast majority of Haitians struggle to put food on the table, but I initially wondered if Marie-Jean was depriving the two older sons of meals because, from what I had heard from the director, she had expressed interest in placing them in an orphanage, which simply isn’t feasible, as the orphanages are still completely full in the aftermath of the earthquake. As for why the boys were running away from home, well, they knew that they would get in trouble when their mother found out they were stealing, so they would hide all night in fear.

Marie-Jean’s brows were permanently furrowed, and she looked terrified. She told me that she did not have any money, so she wasn’t always able to provide food for her five children. I thought back to a book I had recently read that asserted lack of money is not the biggest obstacle to overcoming poverty, and I started asking her about what resources she had in her life.

I learned that her husband had abandoned her and moved to another country before taking up with another woman, her parents had died, and her siblings lived so far away that she had no means to travel to see them. In other words, Marie-Jean was completely on her own without a family support network. Her three younger children need constant attention, so she doesn’t venture far from her home very often. At least she can occasionally visit with friends.

In the midst of this conversation, my brain was on overload trying to figure out what to say to the boys. How could I say, “Don’t steal. It’s wrong,” when they were literally stealing to survive? I felt like I was talking to a young Jean Valjean. They claimed to be stealing food and also money to buy something to eat, but I wondered if they were really stealing candy instead of nutritious food. But when I asked them what their favorite food was, one said “corn” and the other said “rice.” This…from a 12-year old and 10-year old! Where in the world was I? Oh right…Haiti.

I asked the boys what would motivate them to stop stealing, and Daniel said that he would be less likely to misbehave if he could go to church. He said that God could change his heart, and he would be able to endure being hungry. This was when I learned about yet another barrier in Haitian culture: church. You see, it’s not culturally acceptable to go to church in “regular” clothes. This is the one place where Haitians go all out and wear fancy attire, and while American churches have tended to become increasingly casual, churchgoers would be shunned if they showed up in clothing that was perceived as disrespectful or ir-reverent.

And, of course, Marie-Jean did not have the money to buy church clothes for her family. Nor did she have transportation to travel half an hour away to the nearest town whose stores and market sell this merchandise. It seemed surreal to me that money was standing between this family and their faith when Jesus was such an advocate for the poor. Plus, I couldn’t possibly tell a 12-year old boy that he should go to church because God would prefer for him to starve than to steal. Seriously. Surreal.

By this point, you might be wondering why I didn’t just offer to give them some food. This brings up yet another issue. I simply don’t have the personal resources to provide for everyone in the world (or Haiti…or just that village) who is hungry. It’s not like I could buy them a meal and then be done with it. This is chronic malnourishment and all the health complications that go along with long-term starvation.

And even if I could provide them with some food to solve the problem, well, I would be leaving Haiti in a few days, and PID would be left to cope with the aftermath when word got out that a “blanc” (white person) had been handing out food. One thing I’ve learned about visiting other countries is that it’s incredibly important to be mindful of the culture and not do anything that will create bigger problems.

I kept asking questions and trying to gather as much information as possible. I asked the boys how they felt about worrying their mother. They were ashamed and knew they were disappointing her. I asked Marie-Jean about what might make her situation better. She said that she would like to start a business selling food in front of her house because, even if she could find a job somewhere (there aren’t any), she would not be able to work away from home due to her younger children.

Now we were getting somewhere. The social worker for the clinic (a Haitian who had also benefited from the resources of PID) was present during this part of the conversation, and he might be able to come up with some ideas about how to proceed. In the meantime, I asked them if they could return the next day with all of the children. They agreed to, and then I hesitantly asked if they wanted to pray together. A resounding “yes.”

I say “hesitantly” because I made a vow a long time ago that I would not attempt to convert people to Christianity. Yes, you read that right. Some of you might have gasped and immediately started praying for my doomed soul, but the truth is that I don’t believe in classic evangelism. I’ve seen the dark side of this approach–African villages abandoned by missionaries who disrupt traditional family units (many of which are not nuclear families in the Western sense) and then leave the locals to fend for themselves when the mission appointment is finished. Faith is a lifelong journey, and conversion is not something that I think can happen in an isolated instant without continued followup in community-based relationship. Faith changes over time, and that’s OK…in fact, it’s probably desirable. Plus, I’ve seen God’s love in plenty of folks who aren’t Christian, I believe that salvation is universal, and the United Methodist Church (my denominational affiliation) overtly states that religious minorities should be respected.

So here I was sitting across the table from this family who probably hadn’t prayed with anyone non-blood relatedn quite some time, and I sensed that they craved a shared prayer. I offered it not because I wanted to convert them to Christianity (after all, they seemed pretty devout without my contribution) but because I was meeting them where they were, instead of where I was. Sure, I’d made a commitment not to proselytize or be “that” kind of Christian. But really, I wasn’t either of those things. I was trying to be present in a way that would be comforting to them. I was trying to model God’s love. 

They wanted me to lead the prayer, so I prayed for well-behaved children whose bellies were full of corn and rice, for a mother who wouldn’t have to worry about how to feed her children, and for peaceful souls who could have faith that God provides. I didn’t know if any of those things would ever come to pass, but I believed that it was possible for this one family to experience improved circumstances.

After the meeting, I reported to the director of PID about what I had learned. She responded that this was an “emergency situation” and that we should act fast before the boys had the chance to steal again. Alicia Fall, the director of Her Many Voices (the non-profit that coordinated our trip to Haiti) had brought quite a bit of non-perishable food that had originally been planned for our team members before we learned that our meals would be provided at the clinic site. PID was able to get food to Marie-Jean’s family by the end of the day, and the boys haven’t stolen since that first meeting last week!!!

I’ll tell you more about the subsequent visits with the family in future blog posts. In closing, I just want to say that I witnessed an amazing transformation in Marie-Jean and her children over the course of a few days. And as they transformed, I did as well. Sometimes in spite of my idealism that along with others I can help make the world a better place, my realism brings me down. I still can’t help but wonder about the hundreds of millions of other families who are in a similar situation. After all, almost a billion people in this world don’t have access to clean drinking water. And I can’t solve that problem alone. It’s too big. But our small work team, with the expertise of PID, has been able to help one of those families, and seeing them change so quickly has been quite incredible.

A tent city in Port-au-Prince

Homeless in the shadow of cathedral ruins