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The Blessing of Misery

March 3, 2015

Had a beautiful talk with a friend last night.

A new lesson. He was telling me about how badly his family fought after his grandfather died. Over money and “stuff.” Ironically we too were in the midst of an argument. I was in pain from chronic illness and a sever concussion (damn dog and tile floor while trying to ge to bathroom).

What seemed most interesting to me is that all of the people who fought over “grandad’s” money are all deceased. And what’s left?

The stuff? The money?

Again, ironically, I totally agreed with my friend about choosing love, compassion, and kindness over stuff. Crap. Rusting, molten, maggot-infested crap.

That’s really all we have. Here.

Jesus said something about that.

And our argument? Me feeling wounded and wanting compassion. He feeling helpless because he couldn’t “fix” it.

Damn, how easy it is for us to spiral into negativity? And yet, I can’t help but believe there is a better way. A way of love. A way of compassion.

A way of selflessness that brings pure joy.

And so, despite the pain, the illness, the loneliness of not being able to connect with a friend. I choose love. I choose to make a meatloaf sandwhich at 1:00 am to feed a friend.

Love is more powerful than money. More powerful than stuff. It just is.

And how in the world could I possibly know that if I hadn’t survived (or am trying to) misery?

Perhaps the things that hurt us most are our greatest teachers.

Love.

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MRI Torture and Enhanced Interrogation

January 2, 2015

I am amazingly awesome. And I can prove it. I went to NW Hospital today, escorted by my two best friends. I was vomiting. I started vomiting at 7:15 am. Filled up my vomit cup in 45 minutes with bile. Nothing in my stomach. Same thing. Every day. Only today I couldn’t take my medicine because I had to fast for the MRI.

Vomit. Convulsions. Pain.

And at 10:30 I crawled to the car, shaking, weak, crying. The pain.

At the hospital, I sat. Waiting. A vomit bag from the ER in my lap. Waiting for an MRI. The last of three tests my new doctor ordered to try and find out what is wrong with my GI system.
I was at first angry and angst. I’m so tired of this illness. But I remembered to cut some roses for Linda, the secretary in radiology who I’ve talked to three times. It’s the New Year, and it is my last test. So I wanted to give her something for her kindness. My act of kindness for the day. I cannot give that up. I do it for Charlie and my Teachers.

When they called my name, I didn’t speak a word to my dear friends. I couldn’t even look at them. Because I was scared. I was scared and scared to cry. If you haven’t had an MRI, you wouldn’t understand. If you haven’t been in a plane crash you wouldn’t understand. But I knew what was coming. A tube. A confined tube with loud noises like gunfire. Here’s where it gets fun.
Female nurse (amazing woman) says she’s going to start my IV; pokes a needle in my arm. Male nurse (quick witted son of gun), starts strapping something around my stomach.
To the male nurse: “What are you doing?”

Female nurse: “It’s all a part of the torture.”

Me: “It’s NOT torture! It’s enhanced interrogation!”

Male nurse: “Just wait a moment while I go get the rectal feeding device.”

Laughing so hard I almost pull out the IV.

“Don’t let him near me!” I say.

Female nurse: “I got this, dear.”

We’re all laughing when they start to put me in the MRI tube. I scream. LET ME OUT!
And they do. She says to me, “Can we do this today?” She is holding my hand. I find out later she is a sister biker.

I say, “Yes.”

And into the tube I go. Eyes closed. Breathing. Meditating. I could tell that the camera was connected to the strap across my stomach, and I practiced pranayama. Breathing. Gun shot. Breath. Gun shot. Breath.

Forty minutes later, I hear her voice. “You did great. We’re done.” I push the panic button they had given me over and over, and the male nurse comes in laughing. I did it. Forty minutes not moving. Breathing. AND I made both of them laugh again.

It was a brilliant performance.

We get to make choices. To love and to laugh or to hurt and hurt. I choose LOVE and laughter. For today. Yes, there are tears. Lots of them. But the love remains. And to those who care enough to read this. I LOVE YOU.

And to the folks at NW Medical. Love Love Love!

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Love

December 5, 2014

Love isn’t some crazy emotion that involves sex and desire. Just isn’t. Love is holding the hand of a dying friend. Love is giving without want or need in return. Love is an emotion that human beings must train themselves to do (most of us), because it patient and kind. Love is not jealous, nor angered. (1 Corinthians 13). And very few human beings I know can do it.

The crazy thing is that though most of us have been raised in a Judeo-Christian tradition, we still feel love as possession. I WANT seems to equal love in this culture. Or I NEED.

But in our hearts we know that is not love. That is desire. Ignorant desire.

During this time of illness and now serious violence inside my house with my two dogs, that love is something so much more. It’s the willingness to do what needs to be done to take care of another. Love is giving, sharing, willing.

For me, love is throwing myself on the floor in between two violent dogs, both of whom I love, and taking the bites. Love is teaching me in this situation that I have to sacrifice my own body to protect the beings I love. Because they don’t understand. They are both scared. They are both injured. And, yes, so am I. But I care so little about the later. Take this body. It is not me.

I will use this body to do whatever I can to protect those I love. I hope this doesn’t sound radical. It’s not. I am a peaceful person. But when violence erupts; I will throw myself in the middle. I will take on the pain. That’s how bodhisattva’s roll. I wish I could find and hug the next suicide bomber. I wish I could hold him or her with arms of compassion so that s/he would know true love before they died.

The hardest thing for me is accepting that same kind of love. It is so much easier to give than to receive. And perhaps there is a reason for that. We are better people when we give, when we help, when we sacrifice for another.

So how strange it is, then, for me to find myself in a position of need. This badass country girl who was raided riding horses, being beaten, being broken, and killing live-stock  on a farm— needing help? No fucking way. And yet, here I am, with my vomit cup. Unwilling to eat unless someone forces me (or tempts me). And I want to die.

The only thing keeping me alive is love. Given and received.

Peace. Love.

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Listen

December 3, 2014

Listen.

A great Beatle’s song. “Listen, do you want to know a secret? Do you promise not to tell? . . .”
“Closer. Let me whisper in your ear.”

And that song was playing in my heart this morning when I woke up. It took only fifteen minutes for the vomiting to start. I now keep a pitcher by my bed for just these occasions. I wake. I pray. I meditate. And I listen to the rolling thunder in my stomach as it starts to strike.

I have had nothing to eat or drink in over eight hours and yet I am able to produce at least a pint of bile vomit. And I listen. To the convulsions, to the sickness.

I listen to a body in pain. It has so much to teach me. It teaches me humility, and strength. No one can live like this. No one. And yet . . . I do. Every day. And so I know it is possible to rise above the reality of this hell realm and still love.

So I ask you to listen.

Because whatever it is that is hurting you in this moment, is your greatest teacher.

Believe me. I know.

Love.

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Chair 28

November 30, 2014

November 16, 2014

Chair 28

(Note: It took a while to post this because I wasn’t sure I wanted to be so raw and honest with the world.  But I decided tonight it was a story that needed to be told. Too many people suffer.  And, of all things, I offer this as an offering to Peace Officers who work so hard to help people.)

I read a story in the news this morning about two a.m. Stressful events in life negatively affect the brain, causing long-term damage. Really? Who would have guessed? One stressful event can change brain chemistry. I’m not complaining here, just EXplaining. I survived child abuse and rape as a minor and managed to go forward and earn my PhD. I survived a plane crash and went on to become a scholar of eastern wisdom and meditation. I survived the death of my son, 20 years old, and continued to teach. I survived breast cancer and managed to tend to my husband, a Vietnam Marine Vet and 30 years with  AZ DPS,  to his last day as he died of colon cancer. I held his hand as he died. I have been violently ill, probably from stress, since then. Brain damage? Ya think? Probably.

Even given my stubbornness to overcome these events and continue to live, I am broken. Over and over again.

Here’s one thing I DO NOT need: to be handcuffed and incarcerated.

Because despite all of these atrocities, I have NOT committed a crime—at least not in many years. Sure, I swiped some cash from my boss when I was a teenager. I have since paid it back. I have driven after drinking a little too much—never again. I have committed myself to the vows of a bodhisattva (someone who does not violate the ten commandments and loves others as much as themselves, just like Jesus Christ, though I do not claim to be so noble—but I try.)

It is now nearly three a.m. I am drinking whiskey and smoking a cigarette. Go ahead and judge me, and stop reading now if you prefer.

Ever read the short story, “The Yellow Wallpaper?” If so, you’ll better understand this post. If not, perhaps you should check it out. Women in our culture and in our world have been horribly abused. Years and years, every day. Probably every minute. Because we live in a misogynist world. Period. No need to even discuss equal pay or sexual abuse. Medicare pays for penis pumps—seriously—and the Supreme Court has said women don’t deserve contraceptives.

I only mention this because 80 percent of the people I spent last weekend with were women. And because I was assaulted by two male sheriff officers.

And here’s why: I want to die. Seriously, I don’t want to live in this world anymore. I’ve seen too much pain, too much suffering, and have been chronically ill for over a year with an un-diagnosable illness that causes me to vomit violently most days for over two hours. It is debilitating, exhausting, painful.

And yet, I wake up every—whenever, at least a few times a day, and tend to two rescued dogs, I manage to pay bills and my financial life. I manage to keep my house clean (with the help of my sister, Monica). I manage to love and share light as much as I can. As the Beatles so perfectly said, “I get by with a little help from my friends.” That’s all I can do. I cooked for Uncle Harvey this week. I do what I can. When I can.

And yet—it’s still true. I want to die. Why? Because the pain of my life is unbearable. I challenge you to think of surviving just one or two or three of my experiences—losing a child and a spouse, surviving cancer and having your breasts amputated, living through a plane crash, being injured and watching people die, holding the leg of a man bleeding out in the middle of a horrific storm and managing to save his life while watching a twelve-year old girl burn to death. Just imagine.

Perhaps I should get to Chair 28.

It is now three fifteen a.m. Still drinking whiskey and smoking. I am bruised from head to toe, literally. I have scratches and bruises on my face, my arms, my legs, my feet. I won’t even go out to the grocery store because I’m so embarrassed, humiliated, depressed. I look like someone who has been dragged behind a truck in gravel. And that’s how I got to chair 28.

I’m only writing this, though it is truly humiliating to me, because I love you. LOVE YOU.

Last week, I learned that my adopted Uncle Harvey was dying. I knew this, of course—we all have to face that. But I am not ready for another death. I am not strong enough to be with him every minute and hold his hand, as I want to do—as I did with my husband, Charlie. He is every bit as good of a man as Charlie was. Volunteered for the army near the end of WWII, cared for his ailing wife for over 20 years, worked an honorable job in the mines that probably caused his illness, and was kind. I love him.

I went to visit him last week in the nursing home. Held his hand. Talked. Laughed. Cried.

On Friday, I was terribly sick. I was drinking whiskey, which is the only thing that stops my vomiting (go back to judgment if you want, but it’s true). I called to talk with Harvey. He told me, in his weakened voice that I was a good person, that he loved me, that I was his hero.

HIS hero? This man who has done so much? No way. I am not a hero. I am a sick person who is just trying to be good enough not to go to hell. Seriously.

And so I ended the conversation and started to cry. All of the world’s pain collapsed upon me. I wanted to die. I would never—could NEVER kill myself. As I said, I’m committed to not harming myself or others because of my beliefs. But that doesn’t stop the emotions, the feelings. It just means I won’t act upon them. Never. Ever.

One of my dearest friends was here visiting me. Another friend was on the phone. I was honest. I wanted to die in that moment.

I took out the gun from my dresser drawer. I knew it was not loaded, but I checked again. Clip empty, chamber empty. The gun was given to my by my late husband. And I wanted to die.

I shot at the floor five times. No bullets; no ammo. I made sure. Again, I was just in pain. Sad. Suffering.

My girlfriend was with me. She was hysterical. I was sad. I was not suicidal.

I pointed the gun at my head and pulled the trigger. Of course nothing happened. I had made sure of that. I was drunk. (Dear Lord, this is such a humiliating confession—I pray it helps one other person.)

I pulled the trigger over and over. I knew it wouldn’t kill me. I wanted to die, but I honestly believe I could never do that to my family and my friends. I may be sick—and there is nothing I can do about that. But I WILL survive. Somehow. Hopefully with a little help from my friends.

My friend was now in total panic. I had no lethal weapon. I was not hurting myself or anyone else. I was just expressing the pain I felt.

But the phone call was made. (Using passive tense intentionally.)

911

Almost four a.m. now. I should be sleeping. I cannot.

And I could not sleep that day, which is what I was I trying to do. When I get overwhelmingly sad, I try to sleep. But my talk with Harvey made me so sad and so angst with this realm of pain that I could do nothing but cry and pull that damned trigger.

Cops are on the way.

My friend left me alone to talk to the dispatcher. She went outside. I wanted to find her. I needed someone to be with me, and I knew that.

I have about 12 brick steps leading up to my front door. I went out, searching for her, and stumbled, wearing only my bathrobe, I stumbled. I fell hard, down the stairs. Bruising my face, arms, legs, and back. All the while crying out my friend’s name. I just wanted to be loved. Ever feel that? Yeah, me too.

But now the cops have arrived. My friend is up at the end of the driveway. They won’t let me talk with her. I spend 20 minutes talking with a sheriff deputy.

Yes, I have a gun. Yes it is in the house. No, it is not loaded. No, there is no ammunition in the house. I am bleeding and bruised. This is not acknowledged.

Next comes handcuffs. Put on my wrists behind my back so hard they cut my skin. I am hurt by the fall down the stairs, so the deputy literally throws me into the back of his car. On top of the cuffs behind my back. They bite harder and I cry. I cry for twenty minutes while driven to Kino Psych ward.

I am a prisoner.

I end up in seat 28.

I talked with a psychiatrist that night. He agreed I was not a threat to myself or anyone else. I was not a criminal. I was just sad. I was heart broken. I was grieving. But because of Arizona law he could not release me. I was a prisoner for being sad.

And you know what? All you need to do is call 911 right now, and I will be imprisoned again, against my will. Because I have no rights. No Miranda. No arrest. My house was searched, my property seized. All with NO crime. And no search warrant.

Yes, I was sad. Yes, I wanted to die. Did I have a loaded weapon? No. Did I threaten anyone else? No. Did I commit a crime? NO!

I wasn’t taken to jail. I was taken to a much worse place. The CIC, Crisis Intervention Complex. Where people are treated like criminals, but worse. Guards watch your every move. You can’t enter the bathroom without escort. And you can have no personal belongings. There are no beds, only chairs. Men and women are in the same room. Of course, most of us were women. But the men were scary.

I befriended the guards and the “technicians.” I know how to play this game. I want to be safe. I was vomiting so violently at one point, the guard on duty left the bathroom unlocked for me. Such a beautiful kindness.

I was in chair 28. I was a prisoner in the United States without having committed a crime. This is WRONG. It’s just wrong.

People who suffer from mental illness should NOT be treated like criminals. I should have been at home with my pups watching stupid TV shows. I should be free. But instead, I spent almost 24 hours in chair 28. I did not sleep. I did not eat. I grieved. And I helped people. The woman next to me, the crazy girl, the guard. I will go this week and donate books to the ward. Those people need love and education, NOT punishment. I will try to volunteer to teach there.

But one thing.  Next time someone tries to put me in handcuffs without any reason, I will fight.  Freedom is more important.  And yet, given the current legal system, I will probably end up first in the CIC and then in jail.

I share this humiliating story because the mental health system in this country is horrid.  And if you or anyone you know suffers from mental illness, whether from DNA or life’s beatings—please treat them (including you) with kindness.

We can create a better system for dealing with those who are suffering.  I’m not talking about the criminally insane—I’m talking about people who are sad or stressed, and who need help.

This story is my first contribution.  Let’s work to stop this abuse.

(Side note—all the doctors, nurses, and technicians at the facility were kind.  Actually the psychiatrists I talked with agreed with me that the system is terribly broken. But what to do with a friend who is sad, wanting to die?  HUG THEM!)

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The Coconut Story

November 10, 2014

The Coconut Story

Usually this blog is focused on life lessons, but this post is just comical relief (kind of).

First the back-story. (And if you’re interested in a funny ending, you gotta go through this part.)

It all begins with my friends in Vancouver, Canada. Their aunt, Lisle, and uncle, Harvey, live in Tucson. They would come spend time at least three times a year to visit, as Lisle and Harvey have no family in Tucson. Lisle had a stroke about 25 years ago. Harvey was working at the mines in Morenci, but wanted to take care of Lisle at home. She was completely paralyzed on her right side and needed a wheel chair, help washing, help dressing—help with everything including eating.

Harvey was able to retire to take care of her full time. He did this for 20 years. He had no idea how to cook or bake so Lisle taught him. He told me how he would try to follow the recipes but would run from the kitchen to the living room to get Lisle’s advice and suggestions. He became very skilled at cooking Japanese food, German food, and baking amazing desserts. Lisle is Japanese/German so Harvey had to learn both. She also loved sweets, hence the baking. (They met in Japan as Harvey VOLUNTEERED to join the Army during WWII and served in Japan).

As Harvey aged, talking care of Lisle became more and more difficult. His health began to fail him, but still he kept her at home and tended to her needs. Finally, he became so frail from age and the responsibilities of taking care of her that he had to admit Lisle to a nursing home. He visited her three times a week, always taking a homemade meal and sweet, and they talked every day on the phone.

Then Harvey got pneumonia—bad pneumonia. He was hospitalized. His niece and nephew came immediately from Canada to help him. But while they were here, they had to make plans because they were about to go into a three-year silent retreat as a part of their religious practice, which meant they would not be able to come visit Uncle Harvey for three years. We were good friends, and they asked me a huge favor. “Can you help Uncle Harvey? He can’t drive right now, so he just needs help getting up to see Lisle once a week, but he can still walk and take care of himself at home.” He had also hired a housekeeper who came to help him two or three times a week.

Well of course I said, “yes.” Especially after I met this precious man and learned his story. I was healthy, happy, in a wonderful relationship with Charlie, who also being a veteran and a kind man, offered to help me and encouraged me to care for Harvey, which I did with pleasure.

By the time I met Harvey he was very weak, on constant oxygen, and occasionally needed a wheel chair. After talking with him the first day that I met him at his home I wrote a full-page note that said, “In case of emergency call Julia Hilton!” with my phone number and taped it to his door. That note is still there.

And so began our friendship. I would go once a week, pick up Harvey, stop at Burger King (Harvey was no longer cooking), buy one Jr. Whopper and one small fry that he and Lisle would share. He fed her a bite, took one, fed her a French fry, then ate one. It was one of the most loving things I’ve ever seen.

I believe it was during this time that I fell in love with Uncle Harvey and adopted him officially into my family. He was honest, kind, giving, loving. He always wanted me to stop and fill up my gas tank with his credit card. We fought over that, and I usually won. But occasionally I gave in because it meant so much for him to be honorable.

Then I started visiting him once a week in addition to our trips to see Lisle. He told me much how he loved to bake but was too weak to do it anymore. I asked him to teach me. At first he said no. “You’re just asking that to make me feel better.”

“No, Harvey, seriously. I’m a great cook, but I can’t bake a frozen pie! Seriously, please teach me,” I replied.

And so we had a new plan. Once a week to see Lisle and once a week to bake. He sat on a stool in his kitchen, breathing heavily even with his oxygen. I read the recipe book, and he instructed me as I did the work. We made the BEST plum cake ever. We made pies and cookies. We had such fun. He thought I was coming over just to be nice to him, but as is often the case, my taking care of him was as good for me as it was for him.

Two years in a row Charlie and I cooked a special Christmas Eve dinner for Harvey and Lisle and delivered it together on the one special night she stayed at home every year. Harvey had to have a caregiver stay when Lisle spent that one precious night at home because he was too weak to care for her.

The last was Christmas Eve of 2012. Charlie was diagnosed with stage-four colon cancer in February 2012. I continued to visit Harvey and Lisle until early 2013 until Charlie became too sick to be left alone. I was afraid he would fall because the chemo was causing such nerve damage to his legs and feet. And then came my breast cancer diagnosis in January of 2013 with surgery scheduled for April. Charlie was dying, and I couldn’t help Harvey at that time. I found a really nice woman who Harvey hired to drive him to see her once a week, and once a week she would help Harvey bring her home for a day visit.

I kept in touch by phone on occasion, but my life the year of 2013, dealing with breast cancer, losing my husband to cancer, and then getting some weird sickness that I continue to deal with—Harvey and I lost touch. I couldn’t help him, and I felt terrible, but I had so much pain in my own life.

So we didn’t talk most of 2013 and 2014. Then I got an email from my friend in Canada. They finished retreat and she was coming to see Harvey! I was so happy. And, as a side note, I have been feeling a little better. I’m not sick EVERY day any more. And this makes me think that my doctors might have been right. I might have just been so beaten down by illness and grief that my body was expressing them through horrible GI issues. Maybe. When my friend arrived in town, she told me Harvey was terribly sick (at this point he had a caregiver living with him full time). I went to visit him last Tuesday. Thursday he was admitted to a hospice care home. He is dying.

I promise this story will have a funny ending, but most life events have a hint of sadness and pain.

We have no idea how long he has to live. But hospice gives him less than six months. So I need to go see him in the hospice home. I brace myself. Memories of Charlie in home hospice, the hospital bed, the IVs, the oxygen flood my mind. I’m terrified to walk into this place.

But this is Harvey. My dear Uncle Harvey. And if I missed a chance to see him one last time, I’d never be able to forgive myself. I happened to be quite sick that morning, but I didn’t care. If I had to go throw up in the bathroom, so be it.

I arrived Friday about ten in the morning. When I walked in the room, Harvey was sleeping. I sat next to him and held his hand. He opened his eyes, and the biggest smile came over his precious face.

“It’s YOU!” he said.

“Of course it’s me, handsome! Thanks for moving closer to my neighborhood!” While Lisle is in Oro Valle they placed Harvey on the NE side of Tucson so he’s very close to me.

We chatted for two hours, reminiscing about our baking escapades, talking about Lisle, talking about life. It was beautiful. And he reminded me about how well he made coconut pie. He never taught me that one, so I asked him. It’s the easiest dessert he makes, he told me. Premade crumb crust, pudding, fresh ground coconut. He tells me every store sells ripe coconut already extracted in the veggy section. And, as my baking teacher, he tells me how much better fresh coconut is than the dried stuff.

Now things get funny. I didn’t say anything, but on my way home (while I was bawling my eyes out at having to see Uncle Harvey like that and remembering Charlie), I stop at Safeway. I find the piecrust, find the pudding, get coconut milk, and then head to the veggy section. I ask the guy there, “do you sell fresh coconut?” He picks up a whole coconut and says, “right here!”

“No,” I say. “The kind that’s already been cut out.

“Oh, that’s in the baking section, the dried kind.”

“No. I need fresh coconut that’s already been removed from the shell.”

“We don’t carry that.”

Okay, no problem. I take the real coconut from his hand and figure I can deal with a coconut! “These are ripe, yes? They’re not ‘young’ coconuts?”

“No ma’am, they’re ripe.”

Okay great, I buy the coconut and my other goods and off to home I go.

So I wake up the next morning with one major goal. I will make Harvey a homemade coconut pie with fresh coconut. This was about ten a.m. after my morning chores.

The battle begins.

Seriously, the label on the damn coconut says “Easy to Open! ‘Eyes’ are precut for easy access to ‘milk,’ puncture with a dull knife. Drain milk. Then use a cleaver to gently tap the scored cut.” I think the word easy was used at least three times.

Round One: I take a normal steak knife and try to push it in one of the “eyes.” Coconut breaks my damned knife after about 10 attempts to stab through the hole. I lose.

Round Two: I get my Marine boot knife and stab the damn thing. Score! I win.

Round Three: I start draining the “milk” but it’s not milk, it’s water. Coconut water means a young, un-ripened coconut. I get a nice drink of fresh coconut water in preparation for round four. This one I called a tie.

Round Four: I begin “tapping the scored line” as per directions with my sharpened cleaver. Soon I’m banging it so hard I’m worried I’ll break the kitchen counter. So I go outside with my precious coconut and beat the hell of it with my cleaver on the bricks. I score!

Round Five: I try to scoop out the coconut meat. It’s very hard and almost impossible to get out. Yep, young coconut. It’s hard and tasteless. Worthless for my precious coconut pie. I lose.

All of this effort to make an authentic coconut pie for Harvey, and I still end up using canned coconut milk and dried shredded coconut.

I’m not sure if this story has a moral. But Harvey and I had a good laugh about it. The nurses appreciated getting all but Harvey’s piece of the pie. And I still have all my fingers. So maybe it was a win after all.

And maybe there is a moral to the story. Love wins.

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About me

October 1, 2014

October 1, 2014
Finding a New “Normal”
I know it’s a cliché, “a new normal.” But it fits.
We do this all our lives. I have found a new normal after numerous life events, none so life-changing as the one I’m going through now, which I hope you’ll stick around to read . . . but first I go back.

I had to find a new normal when I was the first person in my family to go to university. It was a scary and formidable place filled with privileged kids and a few like myself, a country girl raised on a farm—more comfortable with animals than I was people. At times I felt so alienated by my academic surroundings that I hid in the stairwell of the physics building, feeling alone and unworthy. I remember crying in the basement of the math department, a young woman in the 80s trying to get a degree in science. Often I was the only woman in my classes.
Perhaps that’s why I found solace in my mandatory humanity classes and ended up changing my degree program to writing, which included classes in Women’s Studies. I was less alone there.
A new normal.
When I decided to go to graduate school, another new normal. I chose a writing/teaching program that was predominantly female and had numerous female professors. I felt safe and challenged both. I was thrilled to learn.
Then came graduation with a PhD and a job offer from a university in Kentucky. I became a “professor.” A new normal I tried to live up to. I really loved to teach. I moved to Little Rock the next year and joined a writing department. Loved my job, loved my life. I started a small business. I was happy, healthy, excited about each new day.
This is important because it relates to the present.
In Little Rock, I woke each morning, readied my son for school while I baked quiche for the café I had opened and managed while not teaching, drove to campus to teach and work, picked my son up from school, returned to the café where my son did his homework, and I worked until closing time. Returned home. Sometimes I enjoyed a day off—but not often. I was engaged. I was living. I was doing. And I think I was happy most of the time.

Then came the next transition. A plane crash. American Airlines flight 1420. It tore my world apart. I became depressed, psychotic, and delusional. I was hospitalized. I was fired. I lost my business.
Then started a ten year search for sanity, which included Buddhist studies, meditation practice, yoga training. A new normal. Healthy living, active exercise, learning. Again, I was in love with live, engaged, and excited about possibilities.
Then my son died. MRSA, pneumonia. He died at the age of 20. How does a mother deal with that? She makes a new normal. A normal without her son.
Then she falls in love. She falls in love with a long-time friend who’s son is a drug addict. She tries desperately to help her new love/husband save his son, whom she’s known for over 20 years. And then he dies of a drug overdose at age 22. A new normal.
No children. Just my husband and I, trying and succeeding at living a life of gratitude in honor of those we lost. Seriously, we were succeeding. Every night we would toast to the sky, to the stars, to our lost children, and to all the world. We celebrated life.
And then came the cancer diagnosis. My husband was dying of stage-four colon cancer. And it was my job to see him through it. A new normal. My normal became the chemo ward at the VA, medication supervision, cleaning bloody stools . . . it was a job I loved and hated at the same time. But it became my new normal until . . .
I was diagnosed with breast cancer in January 2013. And with much hope (because very few people in my extended family had died of cancer) I took a BRCA test. The test came back positive. I have a gene that predisposes me to breast, ovarian, and colon cancer. I had a double mastectomy in April. Charlie died in August. I had a hysterectomy in December. All sad and difficult, but still not what this new normal is about.
On Labor Day weekend 2013, still reeling from the death of my husband, I fell ill. I thought I had the flu. I spent the weekend in bed, alone. I was alone. I was scared. I was in pain from my second breast surgery the week before. I thought it was the flu.
The sickness, mostly vomiting and diarrhea, continued. In the second week of September 2013, I started seeking medical help.
My search has included: traditional medical testing, acupuncture, psychological evaluation, more medical testing, drugs (taken and given up), spiritual healing, any fucking thing I could find. I was called “hysterical” by one doctor who could not explain my illness.
I have not given up. And I guess I’m writing this mostly as a confession to my family, friends, and meditation students. Because I am still sick. Horribly sick. I either spend the first few hours of my day vomiting or on the toilet with sever diarrhea. After which I am so exhausted it’s difficult to engage in life the way “normal” people do. Seriously, can you imagine having the flu for over a year? Can you imagine spending your first two hours of the day vomiting? Can you imagine diarrhea for five hours every morning?
So this is my new normal.
I have tried so hard to find answers (and will continue to). I’m still going through testing—I can’t tell you how much blood has been drawn from my veins in search of a diagnosis. I’ve given stool, urine, blood to the almighty medical system that returns results of “normal.
But I live in a new normal. I live in a normal of chronic abdominal pain, nausea, and diarrhea.
I know there are people out there—family, friends, students—who feel like I’m “letting them down” because I’m not “available” to them as I would like to be. But this is my new normal. A chronic illness that I cannot control and that has yet to be diagnosed. I promise I will keep searching, both physically and spiritually, to find a cure, to get better, to change my “normal.” But for now, this is where I am.
Sometimes I run to the toilet not knowing which end of my body to empty first. Vomiting and diarrhea. It’s insane. It’s my reality. It has been my reality for one year and 31 days.
I want to thank to the bottom of my heart those few people who understand how painful this new reality is for me.
And I want to beg humanity to understand that physical illness doesn’t mean we don’t care or don’t want to help. It means we can’t. Chronic physical illness is a prison. And I am trapped in it.
Yet, I am not discouraged or disappointed. This is my lesson. This is my new school. My new normal. And I will do what I can because of and despite it.
Love Love Love.

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