Category Archives: Patience

Echoes of Mom’s suffering

My mom died at the end of 2006, just after her 60th birthday. She died of a rare kind of small intestine cancer, but actually she died of kidney failure as a result of starvation after her innards refused to pass food for a while. She died in the manner she chose; no feeding tubes, IV lines or other heroic measures; the DNR (do not resuscitate order) was signed and posted on the side of the refrigerator. At the very end, she was living on oxygen, whipped cream and morphine.

I find that her journey, and the role I played in it, have colored my relationships with all the people I care about. I began to ask myself, how would I respond to my loved ones’ choices about what they want out of life? When should I sit quietly and try to just be a good companion and when should I take an active role in trying to bring about healing? It is so hard to watch people suffer and not do something, and yet there are times when there really is nothing we can do.

One of the hardest things I had to learn with Mom was how to just be there for her while she went about the process of dying. I wanted to FIX her, I wanted to SOLVE something that had gone so terribly wrong. She couldn’t take in food, something was blocking the way, I had to find a solution…and then again, I couldn’t. I read piles of books and scanned Web sites looking for answers; I mentally checked off a list of things that could be done for her to make sure nothing was forgotten. The surgeon had done what he could. The hospital did what it could. Her regular doctor visited her home and did what he could. They were in charge of cutting, medicine, therapies. What role did that leave me, the untrained and unprepared daughter?

Deep in my bitterness, I realized I could stand there and wring my hands, I could watch her puke and waste, I could try again and again to serve her food and drinks that might, this time, make it all the way through to nourish her body. And yet that was the only role I could have – it was uniquely mine, as her daughter. She didn’t seem concerned about what could be done for her; she seemed to accept the situation as it was in each moment. When I finally confessed to her that I didn’t know how to help, that I wanted to be of service but didn’t know what to do, she smiled and said just by being there with her, I was helping. I did precious little during my visits with her that year; and yet she said how grateful she was that I did so much. Mostly I tried not to scream and cry and tear out my hair every minute of every day that I witnessed her being squeezed dry by this relentless cancer that had her in its grasp. Meanwhile she said gentle words to me and squeezed my hand.

Now someone close to me wants to be skinny so badly that she has eaten almost nothing in the last two weeks. She ended up at the emergency room with dehydration and signs of kidney stress. For a completely different reason, she had been eating almost nothing; and yet it felt to me the same. If you give up on food; if you tell your body that it doesn’t need food, eventually it will believe you and you won’t be able to feed it any longer. I don’t know at what point this happens, but the very thought scares me so much. Here I am again, standing by helplessly, once again in a minor role of providing occasional comfort. I know better than to think that I can FIX this. Healing can happen, but it has to come from her and won’t be instantaneous. But why would she take her life so lightly that she could risk it this way? How could someone so beautiful to me think of herself as anything less than?

Still, as I try to settle in to wait, I wonder if this is the same situation or not. Before, Mom was clearly dying and had come to terms with that. In that case, I rightly accepted her choice and helped her stay comfortable. In this case, this young lady is not my daughter and I have no decision making responsibility for her. I must accept that this is true too. My prayer is to gradually understand how I may help with this; not from arrogance or false desperation, but from a true desire to be of service if my service is beneficial in some way. To feel this way, and be standing outside looking in, is the most painful thing I have ever experienced. This is life – there are so many things we are unable to change, such as illness and death; other people’s minds, the laws of our society, who our bosses are, and the weather.

My personal challenge is to find a way to accept those things and do what I can without succumbing to the temptation to give up and run off. That’s the faulty logic that if I can’t fix it, then I am going to get as far away from it as I can so that I might ignore it. But I  cannot ever escape my own desire to make something better melded with my knowledge that there is very little I can actually do. That will follow me everywhere I go, because it’s embedded in my personality, my soul, my life’s path. I will encounter these helpless situations again and again as people and creatures I love suffer hurts and illnesses; what then is my role, and how will I be content with it?

What would a day without expectations be?

Okay, maybe that concept is a little too abstract even for the most “zen” among us, but let’s try this:

What if we picked a day and, when asked for our preference/order/decision on something that day, instead described the outcome we’d prefer in more general terms?

We could call it the Flexible Wish Day. Or maybe Surprise Me Day. What would you call it?

Here’s how such a day might play out:

I’d wake up in the morning and do the stuff everybody needs to do to get ready for work. Instead of selecting the exact shampoo I want, I’d grab whatever’s closest. Instead of worrying about my outfit, I’d close my eyes and grab a shirt from my wardrobe, then select stuff to wear with it that matches.

Walking the dog, I’d let her go where she wants, wherever that might lead us.

At work, instead of listing all my “to do” items and ranking them by urgency/priority, I’d jot down 2 or 3 things that are foremost in my mind and then think, how do I want my morning to feel? If creative, I’d work on the thing that helps me feel that way. If social, I’d work on an item that required collaboration. If detailed, I’d work on spreadsheets and stats.

Instead of planning ahead and packing a lunch, I’d go to the grocery/deli and pick whatever attracts my eye first, without further deliberation over price or nutrition. I’d eat it with care and enjoy any surprise it delivered.

For my afternoon, instead of being pulled from task to task by urgent emails, phone calls and in-person interruptions, I would stop answering the phone and email, put on my headphones, and think, how do I want my afternoon to feel? Then I’d pick one of my priorities and work on that.

On the way home, I’d put on my iPod and hit Shuffle, even though I have 20 carefully selected podcasts saved which are exactly long enough for my drive home. Whatever played, that would be groovy. At stop lights, instead of thinking how I can get in front of the slow guy, I would look around at the faces of the other drivers and see if anyone is doing anything interesting, or better yet, if anyone would like to smile back at me.

At home, when one of my peeps asks me what I want for dinner, I’d smile and say, surprise me! If that throws them, I’d breeze into the kitchen and randomly put my hand on a box in the pantry or an item in the fridge, saying, why don’t we do something with that? Or, if the mood suits, I would say, I don’t care what I eat but I would like something spicy. 🙂

Or maybe we decide to go to a restaurant, only this time I am driving and my family does not yet suspect I am having a Flexible Wishes Day – great fun! I drive randomly until some restaurant catches my eye. I apply no criteria whatsoever to making the choice. We go in, and the waiter asks what I would like. I ask what he would like to bring me. He tells me the specials. I say, I want something warm and crunchy. And wait. Whatever comes will be a surprise! Yes!

Afterwards, the kids want to play a game. I say okay, and they ask which game. I say, surprise me! And they do.