What does it mean to be alive?

My mother-in-law refused to die. She didn’t seem to get that simply being alive and living were two separate things. Life is more than your heart beating, your blood circulating, your breath coming in and going out like the tide. Life is more than simply existing, simply enduring.

I’m not sure what she was looking for, but I know that she didn’t find it.

The doctors had done all they could, but the cancer had done more. It had won the battle, even the war, but she wasn’t pulling out, wasn’t flying the white flag. She was held hostage to it but wouldn’t admit it. In the end, she was reduced to a sort of half-life, a half existence. A life that was the opposite of full.

She was alive, barely. She had so much pride that she didn’t ask for help even when it came to getting food. After she died, we found frozen dinners in her house and nothing homemade. We found receipts for a personal shopper from Publix. She’d rather ask strangers for help then ask her family. She’d rather hobble along pretending, trying to make do for as long as possible in adverse circumstances.

For some, this was admirable, but not for me. For me it was a sad way to die, a desperate attempt to hold on – but for what? A cure, a miracle? It was as if she thought that she was going to do the healing, that she thought that if she held on just a little longer that she would outlast the disease.

Her death was the same. So much struggle. So much fight. She lasted five days when the nurses thought she would only last five hours. It was an ugly death. It brought no grace or comfort to the family to see her struggle so much.

It had been a year and a half after her diagnosis that she finally died. A year and a half of tests and experiments, a year and a half of pain and struggle. She didn’t plan well. She didn’t budget her time or her energy. She didn’t do anything on her bucket list. She hadn’t even thought about it at all until I asked.

I don’t know if she didn’t know – if she was simply ignorant of the slow decline that cancer brings, of how it steals your abilities and independence bit by bit, piece by piece. Cancer takes all your pieces off the board one by one and doesn’t give them back. Cancer doesn’t play fair. When it got down to the very end she still wouldn’t let go. She was still fighting against this adversary. But she wasn’t fighting death by living. She was just enduring.

We don’t bring ourselves into this world, and we don’t take ourselves out. It is not for us to determine the length of our days. We have some control over how well we will live in terms of taking care of our bodies, but we have little control over how long we will live. Any moment our heart can stop beating. Any moment a blood vessel can break. Any moment we can choke on something and die suddenly, quickly, quietly.

Our lives are not our own.

If God was going to provide a miracle, then God didn’t need her to fight so hard to stay alive in the middle of so much pain, so much suffering. God gave her over seventy years of life and she had little to show for it. God gave her a year and a half after her diagnosis and all she did was hold on, in some desperate appeal for more.

More of what? Life for the sake of being alive?

If someone gives you a gift, they expect you to use it. You aren’t going to get a second gift if you refuse to open and use the first one. You certainly won’t get another if you don’t say thank you for the first one.

Why would God grant more life to someone who has chosen not to live it at all?

Reprogram Your Self

A multi-leveled artwork, 20 x 16. Smaller canvases affixed to larger.

Text is from “Sri Isopanisad” by A.C. Bhaktivedanta Swami Prabhupada.

Paper, acrylic paint, matte medium, decoupage glue, dragonfly wing, unknown insect wing, rhinestones, holograms from Visa credit cards, bits from a computer.

I may or may not include the words “Reprogram Your Self” at a later date on the piece – depends on if I can find a good font. Or if I feel brave enough to hand-paint it.

Background of canvas was painted the weekend my mother-in-law was dying. It symbolizes the transition from material to spiritual space.

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Please contact me if you are interested in purchasing this one of a kind artwork.

Poem – Plates

I opened the box
from my mother in law,
the heavy brown cardboard, the crisp pale paper inside.
She’d been dead a month by this time
but she knew it was coming
so there’d been time to prepare.

Every plate
every bowl
every cup
even the gravy boat
she had wrapped
herself
one
by
one

and placed carefully in this box.

She knew
that this was the last time
she would see these dishes,
these dishes that we had used
as a family
for Christmas
for Easter
for Thanksgiving
every year.

She knew
this was the end
that there would be no more holidays
for her.

We’ll continue
in our fashion
in our own new way
without her
but with her plates
so lovingly
and so carefully
wrapped.

Watch it.

There is a difference between living and being alive.

watch1

My mother-in-law had at least 20 different watches that we have found after she died. Some were separated from their wristbands. She still had them, along with the pins that would have held them together.

None of them were working.

watch2

All these watches to keep the time, and she wasn’t mindful of it. All these watches to keep time, and she still wasted it.

Her obituary was sad. It was almost shorter than the dash between her birth and death dates. The list of who survived her was longer than the list of her accomplishments. The fact that she outlasted the doctor’s estimate for her to die was prominent.

So she was alive, but what did she do with her life?

This piece speaks to my frustration with her having 70 years of life and nothing to show for it. This piece speaks to my anger that my parents died young and didn’t have time to enjoy the life of retirement. This piece speaks to my doubling-up of my activities so I don’t waste time.

I’m mindful of how short life is.

Too many people these days seem to think there is a “reset” button on life, and there isn’t. They seem to think that life is like the seasons – that there will be a spring after the winter. While I’m part of a faith tradition that believes in the afterlife, I’d like to not find out I’m wrong. I want to have a life before the afterlife.

This is why I write, and create. This is why I wake up early. This is why I take classes that are hard and read books to learn how to help. I don’t want to just have been alive, taking up space. I don’t want to wait until I retire to live.

These watches remind me to be watchful.

The artwork is made using an 11×14 canvas, acrylic paint, matte medium, decoupage glue, five watches, and 11 color copied images of watches, all from the collection of my mother-in-law.

Who you gonna call?

When my father died there wasn’t a list of all his friends. He was very proud of the fact that he was able to memorize everybody’s address and phone number. But that didn’t do me any good when it was time to call them after he died. I had to go by the Christmas card list that my mom had. From that, I was able to look up some people’s phone numbers by calling directory assistance. This was 20 years ago.

Now of course you can look people up online. But sometimes that comes with a charge. It’ll get you near where you want to go but it won’t get you all the information. Perhaps there are privacy issues. Perhaps it is greed. Either way, it is annoying.

Now that my mother-in-law has died we have a list of all of their friends and relations to contact. But it turns out their list is not up to date. We can’t ask my father-in-law what the numbers are because he has dementia.

We don’t have some of the correct numbers because people have dropped their home phone line and gone to using a cell phone. And those you can’t look up online. We’ve even thought of using the cell phones of my parents in law to see if they had the new numbers saved there. No luck.

I’m starting to think that if they didn’t have the right phone number then maybe that person wasn’t that close.

Perhaps it is a good idea for me to start writing down my list of all the people I would like to come to my funeral, or at least to know that I have died.

It may seem strange, but sometimes the only way I have found out that someone has died is through Facebook. It’s the modern way of telling people what’s going on. Nobody reads the obituaries anymore. Nobody subscribes to the newspaper.

We have constructed our lives with emails and texts, and our computers and phones are password protected. How is anyone going to know who to call? Bills are sent electronically to email inboxes, and paid online with passwords and log-ins. How are our survivors going to know how to take care of our estate?

A difficult situation has become even harder because of modern conveniences.

It is hard enough to grieve. It is almost impossible to grieve and handle an estate at the same time. Nothing is normal, and then there is something really hard to do on top of that. Unraveling someone’s life is weird, and strange. It is like you are erasing a life, account number by account number.

Poem – middle

I hate the middle bits
the in-between
the waiting.

I like starting school
and graduation
but not all the days
of work
in between.

I like getting a tattoo
and having one
but not the middle bit,
the healing time.

I hate this waiting
for her to die
from her cancer.
Each phone call, each text
could be the one
to say
she’s passed.

Life on pause,
in the middle,
isn’t a life
at all.

But it is the middle that
gets to the end.

It is the middle that is
the reason
for the beginning.

It is the waiting that
seasons the sauce.

Babies take
nine months,
not just for them
but also for us
to get ready
in body, mind, and soul.
If nothing else to make a room
ready.

We need these transitions,
these spaces between,
these middle bits.

They aren’t in the way.

They are the way.

You have to ask.

I don’t want to go to the hospital to watch my mother in law die. I will if I have to. I will if I’m asked. But I’m not going to second-guess my husband. I’ve spent ten years trying to guess what he wants, and doing things for him without him asking because it seemed like he needed me to. He seems to appreciate it, but I don’t think it is doing him or me any favors.

I’ve stood on this one.

Now may not be the nicest time to insist that he “use his words” but now is the time. He has to learn how to find his own voice, to know what he wants, and to ask for it. He also has to know how to say no to people and make decisions.

Part of making decisions is making bad decisions and standing behind them.

He’s made a hard decision recently, and we all supported him. Now it seems like he is going back on it, so he’s losing ground. Waffling, second and third guessing himself is part of his family inheritance. He’s going to lose face over this, and that is going to crush him. Yet another failure to add to the pile. I’m afraid that he’ll never stand up and make a hard decision again.

In part I’ve stayed away because I don’t want him to lean on me. I want him to stand on his own and make the hard decisions. I want him to grow up. I want him to become an adult. Having to ask other people’s opinions and approval all the time is not a sign of maturity.

This was going to be his crucible, his make-it-or-break-it moment.

I feel helpless, waiting around the house. I’ve done rituals and said prayers. I’ve done what I can to process this experience in a safe way so that it doesn’t hurt me. It is bringing back some memories from when my Mom died.

It has been since Wednesday night. Chaos, crisis, upset. Panic mode, emergency time. It is Sunday now, and she’s still alive, barely. I’m a little angry at her now, and I feel very selfish about it. She’s wasted our long weekend off together. Sure, there is some kindness in all this happening during non-work time, but it is still vexing.

This isn’t kind to say at all.

And it is very honest.

This isn’t life, her hanging on. It wasn’t life before, either. Home decorating isn’t giving back to the world. Vanity, selfish, image conscious – both of them. They just amplified each other’s narcissism until it became pathological. There was nobody to say “No”, so the psychic disease grew.

Her sons have spent more time with her now than she ever spent with them when they needed her. They’ve made sure she was better treated than she ever cared for them.

She wasn’t bad, or evil, but she wasn’t good either.

What an ugly death, and a bad situation. What a terrible legacy to leave.

And I’m angry at the medical establishment – we show more mercy to dogs.

Half life

We’ve all been living a kind of half life recently in my family. For the last few days, we’ve been waiting for a member of the family to die. What the nurses thought would be minutes or hours has turned into days.

There is no hope of a cure.

This isn’t life, and it wasn’t one before that.

Life is more than being alive. It is about being independent and about giving back. It is about being generous with your time and your talents. It is about having enough to keep yourself going and more to help others with.

Whether you are old and on your death bed, or you are in the prime of your life, the same rules apply.

I think about the story I read in “All Creatures Great and Small” about the vet who went to put down a farm dog. He’d gotten very sick and was suffering. He’d reached the end of his usefulness. The vet gave him the medicine, and after a day, he wasn’t dead. He was recovered. He needed some time to sleep deeply, and then he pulled through and was his old self again. He was back on the farm, working, in a matter of days.

I think about the person I knew in high school who was miserable and tried to kill himself. He didn’t succeed. He ended up damaging himself just enough that he had to be put into a nursing home. He never was able to take care of himself again. He required constant care. His bad situation got worse.

I think about a lady I know who is pregnant. Her belly is so big it looks like she is carrying a one year old. She should have given birth weeks ago. She’s tried everything to get the process started.

I think about the story I read in “Spiritual Midwifery” about a lady who was having a hard time giving birth. The midwives asked her if there was anything she was worried about, anything that might be preventing the baby from coming. The mother was worried about the father being a good provider. After they had a talk about it, she relaxed and opened up and the baby came. It needed to know it had a safe place to come to.

Why am I talking about birth while I am talking about death? Because they are the same in many ways. They are a transition, and they can’t be hurried. Well, you can give medicine to speed up contractions, and you can do a C-section. But generally, those happen once the labor process has already started, and that you have to wait for.

We’ve all put our lives on pause recently, some of us more than others. It has been a sort of negative holiday. Clothes aren’t being washed. Dishes aren’t being done, cooking happens in spurts. Meals are on the go. Naps take precedence over actual sleeping. Trips away from the house are short, and the phone is always on.

With a baby not coming, with a family member not dying, it is all a huge wait. It is delaying the inevitable. Waiting until the time is right just makes it harder on everybody else.

Maybe it isn’t about her, but about us. Maybe we aren’t ready for it. You never are, really. It is going to be a big mess to undo all of this once she dies. But her delaying it isn’t going to make it easier. If she somehow makes it out of the hospital, she can’t live on her own. She’s proven that in the past few months. There is only so much money to pay for caregivers. There is only so much time that can be taken away from work before they start to think about firing you.

It is selfish of her to hang on.

This sounds very mean and heartless.

In the past few days I’ve really been angry with her for not accepting that she is dying, for not accepting “what is”. Meanwhile, I’ve not been accepting “what is” – because “what is” is what is happening right now. This in between state, this flux, this not going on to the next step, is what is.

Do I want her to die for her sake, or for ours? Maybe a little of both.

Recovery, auto-pilot, and Jesus

I keep trying to worm out of being a servant of Jesus.

So, should I visit my mother-in-law, who is in the hospital? Jesus says yes, that is on the list of things I should do. No question about it.

But what if I really don’t like her very much? Jesus says to love your enemies.

What if I just intend to visit? Nope, doesn’t count. He’s pretty firm about this.

And I say that isn’t fair. It doesn’t take my feelings and needs into account. She’s really not that easy for me to be around. It isn’t her physical sickness that is the problem. It is her life-sickness, and I don’t mean the fact that she is dying. I mean the fact that she never lived.

I’m not very good around people with problems. Sadly, that is a lot of people. I can barely put up with my own problems, much less carry someone else’s. I have taken classes on how to be around sick people in a healthy way – a way that is safe for them and for me. I still don’t know what I’m doing.

Sometimes sickness isn’t just germs. Sometimes it still spreads anyway. Sometimes a person’s mental sickness can drag you down just as surely as a drowning person is a danger to a lifeguard.

I “hide” people from my newsfeed on Facebook who are very needy and broken. I can’t read about their constant boyfriend troubles, or addictive behavior, or sinus headaches. I think, save the whining for something real, like a broken leg or a divorce. Constant complaining isn’t something I can handle.

If a friend is constantly saying how drunk they are or how they couldn’t stop themselves from eating a whole bag of Lay’s sour cream and onion potato chips and two Oreo Blizzards from Dairy Queen, they get hidden. I don’t want to read this. Because the next posts are always about how sad they are that they have gained weight, and they don’t have a boyfriend, and they feel miserable.

I can’t watch people drown.

It reminds me too much of myself.

I remember those days. I remember feeling lost and stuck in that cycle. I remember feeling like life just happened to me, that I was a passive agent. I remember not liking myself very much.

I’m grateful that I started to wake up and take care of myself. I’m grateful that I learned what it took to build up my flame.

I’m far enough into my recovery that there isn’t a great risk (there is always a risk, don’t fool yourself) of a relapse. Recovery isn’t just about getting over abusing drugs. It is about getting over abusing the gift that is life. Not exercising, eating poorly, feeling like life just happens to you – these are all addictive, mal-adaptive behaviors. These are all ways of not dealing with the situation at hand, and the situation is life.

Someone who is new into recovery can’t really go into a bar safely. Someone who is long in their recovery could go in for a bit, but there is still a risk of taking a drink.

Being around needy, broken people is my bar.

I want to fix them. I feel helpless watching them fail and fall. I offer advice, and they don’t want it, they ignore it, they get angry at me. I want them to be free of their pain. I want them to live.

My addiction is sometimes named codependency. It manifested as not taking care of myself. I smoked pot so I wouldn’t feel other people’s pain. I had started to take it into myself, to name their pain as my own.

Some people would say that my problem is that I’m empathetic. How is that different from codependency? If I feel that your feelings are my feelings – that isn’t just empathy. That is a lack of boundaries. That is codependency. Even if the other person isn’t “dependent” on a drug, you can still be codependent with them. If you feel like you are responsible for their feelings, happy or sad or in between, then you have a codependency problem, not an empathy problem.

Mislabeling someone as an “empath” just delays the healing, because the disease is misdiagnosed.

So back to whether I should visit my mother-in-law.

I want to rescue her, to give her healthy attitudes towards death. She’s dying, really. She may or may not have come to terms with this. I doubt it, having noticed her prescription for an anti-anxiety drug recently. Sadly, that is the Western medical way of dealing with anything – there’s a pill for it.

I was the one who counseled my Mom on death, who talked her through it. I was her midwife for death. Thankfully, God had lead me to read certain books the year before I needed them, before we even knew she was going to get sick. Thankfully, I had the balance in my head and in my life that I could talk her through how to land this plane that is life – how to land it safely on the ground and not crash.

Because that is what this is.

So many people fly through their lives on autopilot. They get in, and they go where everybody else is going because they haven’t thought about it. They do what everybody else is doing because they haven’t thought about it. Then, when things get so real that they can’t ignore them anymore, they go up to the cockpit and learn the pilot is gone.

They have to fly the plane themselves. And they don’t know how. They’ve spent their whole lives letting someone else fly their plane. Now it has gotten real, and now they are on their own.

They often freak out. Sometimes they manage to figure out how to work the radio and call for help. Nobody can fly their plane for them, but they can talk them through how to do it, as long as they are calm and focused.

Sometimes they have enough energy to fly on their own, to fly to safety. Sometimes they have enough energy, enough power, to fly anywhere they want.

But sometimes, the plane is almost out of fuel, and they have to land.

Death is landing. You can either do it easy or hard. You can coast in gently, or you can crash and burn.

I had to do this for my Mom. I had to talk her through this. I had to be the person in the radio tower. I had to because I lived with her. It affected me. Her freaking out spread a foul odor throughout the house, colored the air, set off air-raid sirens.

But this lady? I don’t see her. She isn’t here. I’d have to go into that battle-zone. I’d have to voluntarily enter into that lion’s den.

And she hasn’t called for me.

She cries that I don’t visit, but not to me. Other relatives think I should visit, should “make peace”, but she hasn’t asked me to visit. They don’t say anything to me, but to my husband. Nobody is talking to me. But that makes sense, because nobody has been listening to me all along anyway.

There isn’t a war. I just can’t be around this madness.

Over a year ago, when she was first diagnosed with pancreatic cancer, with a year at most left, I asked her what she wanted to do.

Her answer? “Live”.

I said “Of course, but that isn’t an option. Say you were going to go on a vacation for a week, and there were all sorts of things you wanted to do, but only time to do ten of them. You have to pick what you want to do. Your time is limited. Think about what are the most important things you want to do, and do them.”

There is a difference between being alive and living.

Her answer? She wanted to decorate the house. She’d spent her whole life decorating her house. There were over forty cans of paint left over – gallon cans – when she and her husband moved from Georgia to here.

I gave up.

Over seventy years old, and she has nothing to show for it.

What else does Jesus say? “Let the dead bury the dead.”

How NOT to do Pastoral Care.

There is a lady I know who took the same Pastoral Care class that I did. She is a nurse and goes to church regularly. She is certified as a minister in her church. She isn’t ordained, per se. I thought that she would know how to handle it when I told her some heavy news.

My mother-in-law is now in the hospital. She passed out and hit her head. Just days earlier she found out that her cancer had spread to her lungs. I know that means she has just a few months left.

I don’t want this lady to pray for her to live longer. That isn’t why I started to tell her what was going on. I thought we were friends, and in a way we are. She tells me heavy stuff and good stuff. She tells me about the important things going on in her life. We celebrate together and mourn together. But it really is that I celebrate and mourn with her, about her issues, and she doesn’t return the favor. It isn’t reciprocal.

One thing that you have to remember about Pastoral Care, about mindfully listening to someone while they are in a bad situation, is that it isn’t about you. You aren’t supposed to talk about your situation, or compare, or outclass. You can’t tell the other person a story of how it is worse for you or someone you know. That kind of “perspective” isn’t helpful and it isn’t kind. It is the exact opposite of what is necessary.

What is necessary is just listening, and I mean really listening fully. Not being distracted, not trying to leave, not looking around at your phone or watch. You can ask the other person how they feel about it, and you can say “Gosh that has to be hard” but that is about all you are allowed to say.

They just need a safe person to talk to – one who can handle this information in a way that is healthy for both people. A good listener is like Houdini once he had prepared. He could warm up his stomach muscles in just such a way and then anybody could punch him in the stomach as hard as they wanted and he’d be fine. He had trained himself how to do this. A good listener does the same. If they aren’t ready for it, a hard story can destroy them, so they have to train to be able to receive it. Taking a pastoral care class is part of this training.

I should have known better when I first started talking to her yesterday. Just after I reminded her that my mother in law has pancreatic cancer (not a pushover kind of cancer), she turned away and made some (unrelated) joke to the instructor of the class we were in. I felt slighted, but I decided to give her another chance.

When she turned back to me, I kept on with the story. I’m a bit torn about what to do because of the history of physical and mental abuse she allowed in her house. It is my father in law’s fault that the abuse happened, but it is her fault that it continued. They were both very immature when they got married. They are both still immature now, and they are in their 70s.

So some of the issue that I’m dealing with is how much are we supposed to get involved in this situation. You reap what you sow, right? But as a Christian, I’m supposed to forgive, right?

I just feel like if I pretend nothing happened, then I’m doing the same thing she did. I’m saying that it was OK. And it isn’t OK. Abuse is never OK, whether you are the one doing it or you are the one allowing it. By allowing it, you are sanctioning it.

So this lady, this minister, this person who has taken the same class I have and should know better, she starts telling me a story. Now, it isn’t a story about her, but it isn’t a helpful story. It isn’t enlightening, and it isn’t useful. It doesn’t tell me a way to deal with this situation. It actually makes me feel worse.

(Trigger warning)
(I didn’t get this warning when I got this story)
(Such is life)
It was a story about a couple that she knew in a nursing home. Both husband and wife were in separate rooms, and it was for a terrible reason. The husband was abusing his wife, sexually, and their children were OK with it. “She’s his wife” they’d say, as if that excuses rape.

(Warning over)

She went on and on with her story and I felt trapped. Finally it stopped and there was some silence. I digested this, still not knowing what to do about the situation I brought up, and feeling worse because of the story she told. Helpless. Raw. Frustrated. Dirty.

I digested this story and knew that my boundaries had been violated. I told her that I can’t handle those kinds of stories, and she apologized. She said she was a nurse and terrible things happen around and to nurses all the time.

She proceeded to tell me some of the horrible things that have happened. It got graphic.

Somehow her apology ended up being even worse than the reason for the apology.

She didn’t see the error of her way – she didn’t get that telling that kind of story to anybody isn’t a great idea. It is especially a bad idea if the person is experiencing a problem.

I can handle it. I’m pretty strong, emotionally. I’ve learned a lot about boundaries. I wonder about anybody else she might “help”, and how they will react.

I now know that I can’t trust her with anything heavy.
She’ll drop it on me.

The purpose of taking a pastoral care class, in fact, the purpose of being a minister, is to learn how to help people. It isn’t to carry someone else’s burdens for them. It is to carry them with them for a little while. When you do that, you make it a bit easier for them to see what they are supposed to do. When you do that, you give them a little breathing room.

You are never supposed to add to their burden.