My New Standard

Creating My New Normal

Author: Jenny Ingles

As She Lay Dying

Her dying is far enough away yet still so fresh in my mind. It’s been nearly 6 months since my mother-in-law entered the final stages of pancreatic cancer. She had “battled” it for nearly 6 years and was all but a medical mystery. Countless people have recounted painful experiences of loved ones who, after their initial diagnosis with pancreatic cancer, succumbed to the disease 6 months or 6 weeks later. Their decline was rapid and horrific. My mother-in-law; however, plugged along year after year without much significant decline. She was a candidate for and underwent a Whipple Procedure which removed her pancreas and much of the surrounding area of her bowel and stomach. After that she did a single round of chemotherapy before deciding that she didn’t want to do it any longer. She only had one more round of chemotherapy 4 years later – and that nearly killed her. For 6 years, she basically did nothing. She didn’t eat well and she cared little for controlling her diabetes, coronary artery disease or any of her other significant health problems. She pretended that nothing had happened. Call it denial, faith or whatever, it baffled (and hurt) all those I met who had loved ones try everything and still die painful, quick deaths.

It was a Tuesday. A beautiful Tuesday. That morning my husband and I prophetically discussed his mother and our desire to talk to her about her funeral wishes and religious (if any) desires. My husband set off to work and I set off half way across the state to a doctor’s appointment with the Littles. I was about an hour from home when my brother-in-law’s girlfriend called me. Although she had a wonderful dinner with her sister the night before, my mother-in-law was in terrible condition. In less than 24 hours she went from having dinner with her sister to a coma. It was that fast. She flew through an intense journey that started at ‘every-day-life’ and ended with her asking the priest we brought over to baptize and confirm her. It was emotional and surreal. The religious rights ended and she went into a coma. The priest left. Her sisters left. All that was left was a woman in a coma. A woman for whom, on one hand, I disliked to my core and on the other, I loved to my core. There she lay. Dying.

And this is where it begins. For two years, my mother-in-law had lived with my brother-in-law and his girlfriend. It was in their home that she lay. My husband, brother-in-law, his girlfriend and I were now her nurses. The four of us were thrust into the responsibility of caring for someone who just 24 hours earlier was capable of caring for herself (apart from cooking and keeping track of medications). Not one of us had any experience changing diapers, bathing an adult or administering medications. We were not prepared for the gut-wrenching details of death. For 13 days, we ran shifts caring for her. Some days it took all four of us. Other days, just two. But there she lay. Dying.

For 13 days we drove back and forth from our home to theirs. It was in those days, and in reliving those days in my memory for the past 6 months, that I have begun to grasp what truly lived in my heart versus what I wish lived in my heart. She was my mother-in-law for 10 years, and anyone that has known me for more than six and a half seconds knows that my relationship with her was tumultuous, at best. We agreed on exactly three things. One, we both loved my husband. Two, we both loved my children. Three, we both loved wandering around old car shows. Everything else was an exasperating attempt on both our parts to be cordial to the other. My pride wants to insist that she was a wretched soul that couldn’t be reasoned with, but the reality is that my soul probably had more to do with the hostility than I am able (or willing) to recognize.

The first day or two after slipping into the coma, I saw her in pain. It was a particularly brutal pain that I won’t describe out of respect for her. Upon reflection, I’m not sure if it was a physical, spiritual or emotional pain, but it was intense; and heart-wrenching. In addition to providing typical, palliative care I prayed. I prayed a lot. I prayed for God to take her and stop the pain. But take her, He did not. Those first few days dragged on into a week. All the signs of death that you can find on the Internet, she had. And per the ever-knowing Internet, most people die 4 to 7 days after this part of the dying process starts. Surely this was it. But day 7 came and day 7 went, and there she lay. Dying.

It was on day 8 that I started to lose it. Day 7 was that straw that attacked the camel and managed to snap his spine. I had expected it to be over in 7 days. The Internet said it would, Hospice thought it would and I just assumed it would. But like the woman herself, the length of the process would mystify me.

I had been praying. I was still praying. I wanted the whole thing to end. She had made several miraculous recoveries, but this time was going to be different. She was actively dying. It was the end of day 8 and I was sitting in her room watching her breathe. Any moment those short, shallow breathes might stop and she would be gone. For an hour I watched her breathe and I prayed they would stop. I prayed that her pain and suffering would end. But I also knew that those prayers were masking a deep desire that I had. I desired for it to end for me. I wanted to go back to my farm and my chickens. I wanted to pick apples. I wanted to can tomatoes. I wanted to change baby diapers and sit in my comfortable home. I didn’t want to take care of her anymore. One day was fine, two days was fine, three days was okay, but here I was, eight days into something that I did not want to do. I wanted her to die because I was tired of caring for her. All the horrible things that she had done to me came flooding back and I was mad at her for dragging this out. As these thoughts whispered through my ears, I was overwhelmed with guilt. This was no longer about caring for someone in their last days and hours, it was about how caring for her would make me look and feel. Despite the guilt, I lingered in the thoughts. I had, after all, put up with a lot of nonsense from her. I had, after all, been with her for 8 days. I had, after all, put up all the right appearances. It was time for her to go. It’s not like I was wishing for something that wasn’t going to happen anyway. I clung to those justifications and left. At that moment I deliberately turned away from the person I wanted to be and embraced the person I despised in myself.

Day 9 came and day 9 went. My heart was hardened from disdain with the situation and I stopped praying. Day 10 came and day 10 went and I became bitter. Is she going to live like this forever? Am I destined to spend a month, 6 months, a year driving back and forth to administer suppositories and change her diapers? I was tired. We were all tired. But despite the exhaustion, my ever-optimistic husband tried to rally the group and stoically lead us into self-denial for his beloved mother. But it was useless. The longer it dragged on, the more I despaired that it wouldn’t end. I realize now how incredibly cruel and insensitive I had been to his needs at that time. Not only was his mother dying, but his support network was crumbling. I was there physically and I was saying all the right things, but the man knows my heart. And my heart was hard and cold.

Day 11 came and the Hospice bath aid arrived at lunch-time. It was at that time that my mother-in-law awoke, sat up in bed and asked for something to drink. She drank half a cup of orange juice and spent a half an hour chatting the bath aid’s ear off. Stunned. Shocked. Perplexed. I cannot find a word to describe the astonishment that I felt. And while I wanted to rejoice in the miraculous turn-around, my hardened heart wondered if this was going to prolong the process even further. Perhaps, maybe, she would even make a full recovery and go back to her previous state of existing with cancer. I shuddered. Sadly, instead of taking advantage of those precious final moments with her, I hid from her. I didn’t want her to see through my facade and know that I was done with the whole process. Done with her. After the bath aid left, I went to check on her. She was in a coma again. If I hadn’t witnessed her sit up in bed and start talking, I would have never known that it had happened. But I did know. And guilt started to prick at my heart to see if there was any softness left. But there was not. The caring, nurturing heart that had arrived 11 days earlier had solidified, encasing cynicism and bitterness inside it. I was sliding down that rabbit hole again. The one that only rabbits live in. Where you abandon your values and cave into emotions. And as I made the trip down the hole, there she lay. Dying.

Day 12 came. The pattern of driving back and forth, caring for her and waiting for her to die was ordinary now. I’ve heard that it takes 21 days to make a habit. I would venture to say that it takes far less. This driving, caring, waiting routine that I was in was habit. And like any habit, once it’s formed, you lose sight of the original context as to why it started in the first place. Just 12 days earlier, I had rushed there. Not for some glory or to be able to taut a martyrdom for caring for someone that I had long had a difficult relationship. My original intent was to be with her, to let her know that I cared, to hold her, to love her and to walk with her through the most difficult days of her life. But in 12 days I had gone from good intent, to self-absorbed woe is me, to habit. The woe is me was gone and the habit was now there. Somehow, overnight, the heaviness lifted and my heart started to soften again. It was somehow different though. I had resolved to my new habit and new reality and I was getting ready to plan my life around it. I went into her room and apologized for being a jerk, not just for the past 5 days, but for the past 10 years. Then I left. Day 12 went. And there she lay. Dying.

It was a Sunday morning. It was day 13. We did our normal Sunday routine of going to church, then to Sunday school and then home for the kids to nap. We discussed going to see her. It was, after all, habit. Ultimately, we decided to stay home. We decided that part of this new normal would be taking time off from the drive, care, wait habit. So, we watched the Lions lose at football (which is a habit that the Lions have unfortunately developed) and we ate dinner. Then we got the call. She had died. Just as quickly as it began, it ended. There were no “signs” that it was going to happen. She had all the “signs” for 10 days. It just, happened. And I felt nothing. I felt no joy, no sorrow, no relief, no justification. I felt nothing.

We had already planned the funeral during the waiting process, so all that was left was to execute the plan. And we did. The four of us just did what we said we were going to do. And while the others grieved in their own ways, I felt nothing. It wasn’t a numbness, it was a nothingness. I still, 6 months later, feel nothing. In reflecting on the whole process, I realize that as she lay dying, part of me was going with her. All those years of animosity were coming to light. All the things that I had convinced myself that I had forgiven lay dormant inside, and the drawn-out process provided me just enough time to truly forgive her (and myself) for all those years. Had she died on day 11 (or even 12), then I probably still would have not forgiven.  I realize now that I didn’t walk into a situation that hardened my heart. I walked into a situation with an already hardened heart that had been hidden beneath beating muscle. Some might say that I was grieving. I would say that I was forgiving. The self-righteous, stubbornness in me that wanted to pretend I had already forgiven was being dragged through the actual process to its conclusion. So, as she lay dying, I was forgiving.

Stupid Happens

Do you have that friend that stupid happens to?  I’m not talking about the reap what you sow kind of stupid.  I’m talking about the you step out your front door to go to work when a raccoon jumps out from a bush and attacks your leg so you spend the whole morning in the ER getting rabies shots kind of stupid.  A lot of people consider me that friend.  Stupid just happens.  I also have that friend.  So when the two of us hang out, really stupid things happen.  You know, like when you’re together because it’s her wedding day and you’re running late to the ceremony because some random town decides to have a random parade on a random day in August.  Then you end up being 45 minutes late because you have to watch a procession of girl scouts, fire trucks and wiener dogs.  Stupid.

Stupid seems to be following me around lately, so I’ve been thinking a lot about it.  Of the people that I know who suffer from an inordinate amount of dumb things happening, the majority of them also tend to have serious things going on all the time.  A child with a disability, a chronic illness, random surgeries, loved ones dying or some other such chronic stress is usually simmering underneath a barrage of random stupidity.  They also tend to laugh at those little things that get thrown at them.  Truly, though, how “little” is getting attacked by a raccoon or running late to your wedding?  Most women would melt down at such a tragedy, but not my friend.  In the face of all the other things that she’s dealt with, a rabies shot and a slightly postponed wedding is not the end of the world.  Although it’s cliche, it does seem that the enormity of a situation truly is dependent upon how you respond to it.

Amidst what appears to be a never-ending slew of stuff happening, I find time to laugh at most of the situations.  It’s a coping mechanism, I suppose.  Otherwise, I think I’d just have a nervous breakdown.  And although I sometimes find myself at the brink of doing that creepy laugh/cry thing that people in the movies do just prior to going on a killing spree, I am mostly put together.  I’ve learned to compartmentalize things that happen in life.  I’ve decided that everything falls into at least one of three categories.

  1.  Stupid Things.  These things are stupid and usually funny.  These include things like getting locked in a chicken coop for 45 minutes on a dark, dreary night with no one around to hear you scream.  Ask me how I know what this feels like…
  2. Tragic Things.  These are usually not funny things.  These include the death of a loved one, a loss of a job or some other jarring event in life.
  3. Life-Altering Things.  These things necessitate a change in your daily routine.

I’ve found that sometimes these categories overlap.  Recently my cat took a 25 mile trip in the undercarriage of our truck only to emerge completely unscathed.  This is both stupid and life-altering.  It’s stupid because it is.  It’s life-altering because now every time my husband or I wants to leave the house, we have to do a cat check to make sure he’s not hiding in the undercarriage.  My routine changed and it’s stupid.

I’ve also discovered that Tragic Things are not necessarily life-altering.  My grandfather passed away recently.  I miss him with all my heart and I love him beyond words; however, my daily life has not changed in the slightest.  In addition, there are Tragic Things that temporarily alter life.  My mother-in-law is currently at the end stage of cancer and we make the 45 minute trip at least once a day to help with her care.  Life is different now, but eventually we will get back into our daily routine.  We will grieve and be sad, but we will still have our routine.

The thing I think I have the biggest problem with is the truly life-altering stuff.  My daughter recently developed severe food allergies and we’ve had to revamp how we cook, what we eat, where we eat and make sure that we carry an Epi-Pen everywhere.  Life is different.  It’s not funny or stupid.  It’s not tragic because she’s going to live a normal, healthy life.  It’s just a different life than we had three weeks ago.  It’s stressful, but totally manageable.

I was talking to a friend about the insanity that I call my life and he said, “your life is so tragic.”  I thought about it and I could not disagree more.  It might be stressful, but for the most part it’s just changing all of the time.  For me, that is not a tragedy.  For him, it is a tragedy.  Just like the person who would be devastated about being late to her wedding, my friend and I recorded the whole event and laughed.  It’s a perspective thing.

Unbeknownst to me, one of the characteristics that keeps me upbeat is the ability to find the absurdity of a situation and just laugh.  When stupid happens, that’s really all you can do.  So when stupid happens to you, stand back and laugh!


 

What Has Been Asked of You is Tremendous

I was lost in my thoughts and staring out the window of the Ronald McDonald House (RMH).  For those of you who have never lived in a RMH before, I sincerely hope that you never have to.  RMH is a guest house for families that have children in Intensive Care at the hospital.  This was our second RMH room in a week as our newborn son bounced from hospital to hospital, fighting to live.

There’s an indescribable loneliness involved with that degree of helplessness.  My husband was working and staying at our house with our 17-month-old daughter during the week, so I spent most days either sitting in the NICU or sitting in my guest room.  I had become eerily familiar with the view from my room.  Although the employees and volunteers at Ronald McDonald did everything they could to make my room “homey”, there’s something amiss at the sight of a cold, brick hospital looming outside.

So there I sat in my dark and lonely thoughts.  Where will we bury him?  Who will get his organs?  Did we double check that we can even donate his organs now that he’s had so many blood transfusions?  What if I’d insisted on progesterone shots?  What if I’d insisted on steroid shots?  I thought there was a less than 5% chance anything could go wrong.  The darkness inside the mind is, well, desperate, to put it mildly.

As I followed my thoughts further and further down the rabbit hole, the sound of an email coming in snapped me back into reality.  My phone that used to buzz and ding primarily for work related inquiries was suddenly a hub of activity for concerned family and friends.  So an email coming in wasn’t unusual, but this email was different.  Embedded within words of empathy was a phrase that touched me so deeply that it has become the cornerstone for all my suffering.  It simply read, “What has been asked of you is tremendous.”

There was no call to action or an attempt to mitigate the pain.  My friend wasn’t trying to give me hope or somehow make it okay.  It was an acknowledgement that what was happening royally sucked.  It was permission to be in pain and to feel grief.  Our culture has a tendency to look for solutions for everything and to try and find a bright side to all bad things.  And while I wholeheartedly agree that good things do often come from suffering, the suffering is often unbearable at the time.  I appreciated everyone who took time to reach out to my family during those days, but there’s just something about the cliché “his suffering will be gone if he does pass” that stings so bitterly when you’re looking at your child through a Plexiglas box with tubes sticking out all over his tiny body.  The knowledge that someone will “be in a better place” or “have no more suffering” may be true, but it doesn’t fill the lungs with air that are gasping to breathe.

Permission.  Friend, you can feel this way.  You can ask why.  You can hurt.  What has been asked of you is tremendous.  Whether it’s watching your child dying, the pain of burying a parent or spouse, the loss of your health, infertility or the crumbling of a marriage that once held such hope, it’s okay to suffer; to just exist for the moment.  The coping and healing that eventually must begin does not have to be now.

When I contemplate something tremendous, I think of a mountain or other such great obstacle.  There is a progression that must be followed in order to conquer it.  You cannot start at the top of a mountain and say that you conquered it.  You must scale.  Likewise, you cannot stand at the top of a mountain and look down at others who are still climbing and expect them to be where you are at.  In that same scope of thought, not every mountain has the same enormity as the next.  How can I compare watching my child dying to the mother in the NICU who’s holding her dead child?  I don’t understand her pain and I never will because it is specific to her.  What was asked of her was tremendous.

I also cannot compare how I react to how another person reacts in a similar situation.  I remember sitting at the funeral of a beautiful 5-month-old baby who had died of SIDS.  My daughter was 4 months old at the time so the death of this little baby terrified me and made me weep bitterly for his parents.  His mother sent an email out thanking everyone for their support during their suffering.  In it, she said “while our prayers were not answered, another mother’s prayers were.”  They had donated their son’s organs and his organs had already been transplanted into another baby.  She was gracious and reassuring.  As my husband and I discussed donating our son’s organs, that sentence kept running through my head.  And I hated it.  I deliberately refused to allow that grace into my heart.  And I felt guilty about it.  I compared myself to that mother.  Looking back at the situation, there was no comparison to be made.  I don’t know how she felt as she held her dying child.  What was asked of her was tremendous.

That phrase was sent to me nearly 2 years ago and the memories of my son in the NICU are distant, but ever-still poignant.  And when I look into my son’s eyes there is a gratefulness that I feel as I stand on the top of that mountain.  But now I climb a new one.  A different one.  And this one, too, is tremendous.

A chronic illness is met with grief.  A dear friend recently said to me, “It’s a loss, Jenny.  All loss causes grief.”  And she was correct.  There is so much loss when you have a chronic illness.  There’s the loss of both freedom and planning.  “Bad” days pop up at the most inopportune times.  There’s the loss of ability and strength.  There’s the loss of feeling well.  Those dark thoughts begin to creep in.  What if I hadn’t done this or done that?  How come that magic diet worked for her but not me?  If I feel half way decent tomorrow, then I’m going to get 10 projects done.  You begin to travel down that rabbit hole.  And it’s lonely down there because, let’s face it, rabbits live in rabbit holes.  People don’t.

In the suffering of this grief, I have yet again found deep comfort in the phrase “what has been asked of you is tremendous.”  Permission.  I can be sad about not feeling well.  I can be sad that I missed a lot of fun things with my kids this summer.  I can hurt.  I will climb this mountain as well, but I’m not going to pretend it doesn’t exist.  It does.

We all have our own sufferings.  They are tremendous in their own right, and it’s okay to just grieve for a while.  Contrary to the “we must fix it now” culture, we can find peace in knowing that “what has been asked of you is tremendous.”

The Meter Theory: Creating My New Standard

I was recently searching the Internet for ways of managing this new standard that I am trying to accustom myself to, when I ran across a beautifully written story about a young woman living with Lupus.  In her story, The Spoon Theory, she illustrates her daily life to a close friend by using spoons as a metaphor for her energy (or lack thereof).  She starts each day with a finite amount of spoons.  Some days she has more, some days she has less.  Each task in her daily routine costs her a “spoon” and, at the end of the day, she usually has fewer spoons than she has tasks.

I shared this story with my husband in an attempt to help him understand what I was going through and why I was suddenly “slacking off” on my daily tasks.  He sat there for a moment before finally looking at me and saying, “I get this. It makes sense, but it’s lacking something very important.  This doesn’t show the whole picture of how what you’re going through affects the family.” “Let’s change it up,” he said.  “Pretend that instead of spoons, you start the day with a bag of quarters.  These quarters represent your  energy.  Depending on what you ate the day before and other factors, you start with a different amount of quarters each day.   And every where you turn there are ‘parking’ meters.  There’s a dishwasher meter, and a makeup meter and a work meter and a cooking meter.  Each meter costs a different amount of quarters.  A makeup meter might only cost one quarter, but a weed-the-garden meter costs 3 quarters on a normal day and 6 on a hot day.  You get it?”  “Yes,” I said, “But that’s not all that different than her story.”

“Ahhh, but this is where it changes,” he mused.  “You see, I also start the day with a bag of quarters.  And so do the kids.  And your ‘meters’ are not necessarily yours alone.  While the makeup meter is yours, we share the dishwasher, laundry, poopy diaper,  walk-the-dog meters and all the other household and financial meters.  I used to be able to count on you to put quarters in the meters.  But now, I can’t.  The dishwasher, for example, has to be unloaded in the morning, loaded after lunch, unloaded before dinner and then loaded again after dinner.  If that’s a quarter each time we touch it, then we have to spend 4 quarters a day just on the dishes.  I used to put a quarter in in the morning and you would put one in after lunch, before dinner and again after dinner.  You used to put three quarters a day in the dishwasher meter.  Now, I’m lucky if you can put one in.  Many days you have to choose between putting quarters in the laundry, cooking, work and dishwasher meters.  Obviously we need money and we have to eat, so the dishwasher and laundry meters aren’t being fed most days.”  “I know,” I agreed sadly.

“So,” he continued, “I now come home to a meter that’s expired.  If you didn’t unload the dishwasher before dinner and load it again after dinner, then when we come down to make breakfast the next day there are no dishes to eat on, no pots to cook with and ants.  That’s happened several times this year.  Now I have choices to make.  I have to pick which meters to feed.  And although I might have enough quarters to feed them, I don’t have enough time.  I have to choose between the mow-the-grass, walk-the-dogs, laundry, dishwasher, home repairs,  and relationship meters.”  “Relationship meters,” I queried? “Absolutely,” he exclaimed!  “When we have meters expiring all over the house and everyone is stressed out, you and I start bickering.  The kids see that and they get whiny.  We start bickering more because the kids are annoying us, and the whole thing starts getting out of control.  If I don’t play with the kids or eat dinner with the family to reconnect, then those meters are going to expire.  And we can’t have that.”

We stared at each other.  It was abundantly clear that this illness was affecting the whole family.  That my new standard wasn’t my standard.  It was our standard.  “What do we do,” I asked?  He didn’t know.  We didn’t know.  And while we didn’t solve the meter issue at that moment, at least we built a common language.  If I told him I was running low on quarters or that the baby’s meter was set to expire, then we could tackle the problem together.  Instead of running around alone and trying to feed meters that the other person didn’t know existed, we were in it together.  We’re building our new standard together.

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