Category Archives: FIRST PERSON

GOOD FACE

What can you do? You gotta put a good face on a bad day, or it all goes to pot. Every evening, before bed, I thank God for the good, and I thank God for the bad, because I know it’s all a part of the whole.

You think it’s fun to have a disease that keeps eating away at your lady parts? To have all kinds of doctors and residents and even students and suchlike, all interested in getting a good look at your baby maker? Spread eagle on the table like the stories in the ladies magazines about the poor gals being kidnapped by aliens?

I’ve had a good run of it, and I’ve still had some good laughs, in spite of the pain. In spite of the surgeries. In spite of the steroids and the other medicines. But I admit it’s hard when you get a disease like this, because you’re not exactly going to walk around talking about it and sharing it at church. It’s called Paget’s but who cares? Nobody’s ever heard of it.

I married my husband when I was a young – fresh out of puberty. We had both just gotten our feathers. Two fledglings, fresh out of the nest, I guess you could say. But my, was he well built! Tall and strong, with every muscle in place. You know how some guys look silly with the boots and the silver buckle and the cowboy hat? He didn’t. He was made for the ranch. I looked up to him literally and physically, and I trusted him implicitly.

All I can say is some people looked sideways at us because we started young, but God is great, and He gave us time. Almost 50 years before this disease kicked in and changed our lives. I’m not the only one growing old, of course. He has a use a walker now, and they say he may end up in a wheelchair. I don’t know how I am going to be able to get him in and out of the bathtub, but I plan to have fun trying!

Remember, I tell younger people, for the days to come, when things get bad. I mean, irremediable. I mean, so bad that you know they are not going to get good again, not in this lifetime. You still have a heart? You still have breath? You still have a mouth? Then laugh. Laugh so you don’t cry. And keep on. Keep on laughing. Where there’s life, there’s hope, and when the hope is gone, oh well. There’s still laughter. And memories…

The dancing we did. The village dances where instead of lining up along the wall with the other girls, I just walked intertwined with my man, wrapped around him like a vine, my hand hooked into the back of his belt. His muscular arm slung around my neck so I was in the crook of his elbow and his hand hung right above my breast, just inches away, haha! I would keep laying my cheek upon his chest, just to feel his heartbeat through his white shirt. Strutting like two peacocks, we were. Well, I guess I was the peahen, but I sure felt like I could wag my little tailfeathers! Haha. And the music…

We’ve had a good run. Not everyone can say as much. We’ve had a good run and a good life with good memories. So would I wish this disease on my worst enemy? Well, haha, I might, but I don’t have any enemies. God has been too good to me for me to hate anyone else or wish them ill. So if a certain number of people just have to have this disease, and God says I can handle it better than the next gal, well, I trust God. And God trusts me. So I’m gonna have to handle it. That’s my view of things.

So some free advice from a old hag. Remember to thank God for the good. And remember to thank God for the bad. It’s all part of life. And you never know what’s coming around the bend. You don’t know what else might get laid upon your table. You don’t know when God might be letting you off easy. It could be a lot worse! You just don’t know! Just accept, and be glad.

LOOK UP!

So I was downtown in that area where there are a lot of stores, a lot of tourists, a lot of beggars, and a lot of that bad kind of business, if you know what I mean. Hardened people and drug dealers, people selling stolen goods, and worse. And I had just come out of a store and then this young man he starts glaring at me, and I think, oh no you don’t! Not with me, you young whippersnapper! I am not afraid! Don’t try it on with me! Ha!

So I just look right at him, and I tell him, “Don’t you look at me like that! Say your prayers instead because God loves you! Yes, Christ died to wash your sins clean on the cross on Calvary so pray – pray to Him!”

He quit glaring and took a step back and looked surprised, and a few of his comrades started to gather. I went on. “The lamb of God was sacrificed to show you the way to heaven, and yet you are an abomination in the sight of God, until you wash yourself clean of these sins! Stop what you are doing, young man, before it is too late. You think you have time to reform, but you don’t know what day is your last. God has counted every hair on your head and every day of your life!”

Then I realized that he didn’t actually speak my language and that was why he never answered me but just stared. And my English is just terrible because I was never able to go to school in my home country so I cannot read or write, but I tried to use sign language and the few words I could say, like God, and pointing up to the sky, and look for Him, meaning seek Him, and this guy and his friends all looked up at the high buildings, and I kept preaching as best I could. I was earnest. They seemed to be pointing at the birds so I kept yelling,”No birds! God! GOD!”

Then suddenly they are started laughing and I started laughing too and I said. “God! God!” And they said back, “Yeah, God! God!” And the one glaring guy with the baggy pants and his underwear showing he just kind of sidled up to me and patted my shoulder and said something like you’re alright, grandma or something encouraging like that, and I grabbed his arm by the elbow before he and his friends turned away, and I looked right in his eyes and I caught his eyes. And I swear a saw a glimmer – he smiled and he nodded. I hope God opens his heart soon and shows him a better path, and I pray for that boy, I pray that he will be saved.

My niece, she worries about me. She told me, “Auntie, you gotta understand, it’s like back home. You don’t mess with the gang members. You don’t harass the drug dealers. You don’t ask questions about the kids of the street, or intervene. It’s too dangerous. You could get killed!”

But I told her, “Honey, I am a warrior in the battle for souls. And just like any other warrior, I will go into danger. I am not afraid, because God is with me. No one can touch a hair on my head without God’s permission. Now, I can’t read the bible myself, but I have heard enough of it in church. Don’t you think that if I get killed fighting for God, that I will have a glorious place in heaven? So what is there to be afraid of, anyway? We’ve already made it through a civil war. This stuff is pretty easy.”

I am sorry to worry her, because she helped get me out of my country, but I have to do what I have to do. God willing, someday my son will be able to join me here, and we will have such a happy life, and I can finally relax. Until then, I will continue to help these young men wherever I find them, in the strong hope, the firm belief, that while I do God’s work here, God will in turn let someone help my son, and open his heart, on the other side of the globe, and bring him safely to me. From my lips to God’s Ears! God willing!

ASK GOD

Doctor, I know you are a scientist and an expert and all that, and of course that’s why I come to you. You know more about the lungs that anybody on my side of the state and that’s why they want me here. And I feel a little embarrassed to even bring this up, but it is weighing on me and I’d like to have an answer, if it doesn’t take too much of your time.

I promise I am using the inhaler, and taking my prescriptions, and I am not disrespecting the advice you gave my local doctor! Not at all. But one of my girlfriends took me to a traditional healer that she has worked with, and don’t worry! I am not taking any herbs or anything that could impact the plan of care you have. I don’t want you to get mad at me! But I want to be honest, and I have a question.

I don’t know if you know, but my son was killed at the apple orchard where he works. And it hit me really hard, because he is my only son and my baby. And no one can tell us why. No one knows He was just found dead, and they called us and we drove there, and then we saw him in a coffin, and he really was dead. It really was him. But no one knows why.

So I lost 27 pounds and I cried my eyes out and I am still crying and as you can see my eyes are like two red, burning holes in my face. I can’t believe I still have eyesight. And I have hardly slept for weeks. My daughters all scold me and tell me to buck up and see the positive. But what’s the positive? I have this lung thing, maybe from being slowly poisoned at work. And my husband is on dialysis, and I can’t even take care of myself, let alone him. And he won’t share my grief – he has just shut down.

And either one of us would have been happy to die instead of our son, even if we were healthy – that is what any parent would do – but God didn’t let us. And I wish I could ask God why, so I could understand. I know that God doesn’t do anything without a reason, and I know it is not my place to judge or question Him, but I just wonder. Why? Why did God drag my life out through all these years of harsh work, poverty and struggle, burdens at home, with false hopes? Longing for peace, longing for rest? And having it denied to me? Only to have my son killed, and we don’t know why.

Why did God let me outlive my only son, and lay this heavy burden of pain upon my heart – to crush me to the ground when I had hoped for rest and relief from these burdens? My kids are grown – the grand kids are coming – this is supposed to be the happiest time in a woman’s life. And then He takes my son – the apple of my eye, the one who always loved me best. He used to call me every single evening, just to say hi. I would sit on our porch and hear his voice. If you heard his voice, doctor – so soothing. Now I don’t want to go on the porch. I just pace inside our tiny trailer, back and forth those few steps like a caged rat. May God relieve me from my painful thoughts. From my pain.

Sorry to cry, and sorry to get off topic, doctor. I know your time is precious, and others wait eagerly for your fifteen minutes. But the traditional healer says that my worsening lung condition might not be just from the agricultural work. That it might be from my grief. And just like I cry tears from my eyes, she says that my lungs can cry and then they get congested, and that could be how I got the scar tissue, just like other wounds in our flesh will cause a scar, right? You must know all about this, more than I ever could. So my question is, do you have any treatment for grief? Because if I am crying into my lungs and causing scar tissue, I want to get the right treatment for that.

I don’t want much, not anymore. To be honest, all I hope to do at this point, doctor, is get strong enough so I can bury my husband. So I can live long enough to see him through his last illness. Then I will be ready to join my son in heaven, God willing. If you can lighten my burden, doctor, I would be so grateful. And you would be doing a good deed. I really do feel like my lungs are crying and sobbing, and I can feel that when I breathe. Perhaps you can hear it with your stethoscope. My lungs are choking on sobs, inconsolable. There must be something you can do. Is there a treatment for that? If not, would you allow me to take herbs from the healer? I mean no disrespect. But the pain is overwhelming.

DIE IN PEACE

Thank you for having this meeting. As you know, I tried to get unplugged last week, and my family pressured me to change my mind. They even brought the minister, supposedly to pray with me and comfort me, but really to pressure me to “keep trying, trust in God, and wait a bit longer,” but for what? I’ve been in the nursing home and now the hospital for almost a year now. What I am waiting for? And why do I have to stay plugged in? I want you – the hospital staff – to let me go, and not tell my family this time.

God didn’t put me on this breathing tube. You did. If we are going to say that every single thing that happens is God’s will, then that makes the civil war in my country, the death of my firstborn, the incarceration of my brother who was innocent – I don’t have the breath left for philosophy. In a word – I don’t believe in absolutes. Things are more complicated than that.

I am respectfully requesting that you tell me what my rights as a patient are. Do I have to stay on the breathing tube because my family wants me to? Do I have to let them visit, if I don’t want them to? Can you tell them what I am doing, or where I am if I change rooms, if I don’t want you to? Can I sign a Do Not Resuscitate Order, of the Physician’s what you call it, the POLST form again? Can you carry it through this time? Thank you.

I tried to explain to my grown kids. My disease is not going to get better. It is a progressive muscle wasting disease that will leave me drooling and maybe seizing in a bed or wheelchair. I am dying. I am losing function. I can no longer walk. I can no longer bathe myself. I can no longer breathe on my own. I can no longer process my own food, so I have to have a feeding tube, just to drag things out. They just talk about God – God – God. How is this God’s will? Why would God in His infinite mercy care if I take 10 years or 10 minutes to die from this disease? That’s insane.

And every word I say, on this breathing tube, feels like sandpaper in my throat, makes me feel like I am running out of oxygen, even if you turned it up. If it weren’t for the pain pills, I couldn’t even voice. One of the respiratory techs, about 13 years old, just said I’ll get used to it. I’d love to pop a hole in his throat and see what he says then. Because I won’t get used to it. It’s not going to get more comfortable. It’s going to get worse. I am dying. This physical therapy, “try to get your legs stronger!” – what’s it for? Get strong enough to have more muscle wasting? Slow it down – for what? I am not going to run a marathon and raise money to cure my disease. It’s just dragging out the inevitable.

The kids, they rush over here once a week, and they’re like, oh hi Dad – we love you Dad – keep trying! Keep fighting! God wants you to try! I guess they and their minister just got appointed God’s Special Helpers and nobody told me. Then they pull out their phones and play a game, or God knows what, looking up to make small talk, and then their hour is up, and it’s bye Dad, love you! You keep trying! You keep fighting! Fighting what? God’s will? Because according to them, it is God’s will that I have this cross to bear. And I should be humble and just take it. So who I am supposed to be fighting?

They want to just claim they follow the bible word for word, and they are so close to God they can actually tell me – the one in the patient bed – what God’s special plan is for me! Their own father! They know God’s plan! Which apparently is to lose all my abilities while using more and more technology. To lie in bed begging for a shower and being offered some powdered chemical in an aluminum cap that a patient tech will comb out, and then call that a hair wash? I cannot even brush my own teeth, for god’s sake! I cannot even clean my own bed sores, from needing diapers now, and when I ask the nurse she acted like I’m asking for a massage with a happy ending. I’m not! I want to be clean. My body is failing. I’m in pain. I’m trapped. I want out.

The kids tell me that what I want is a sin, thanks to their fanatic mother taking them to that church – that it is suicide. But “God’s will be done” applies equally to having a natural death. How is it suicide to stop using artificial measures to artificially extend my life? Is it suicide to not take a heart transplant? Is it suicide to quit chemotherapy if it’s not working and maybe killing you faster? Do we have some inherent duty to “keep fighting” our fate and to die with less dignity, less comfort, more pain, and more agony, drawing it out for weeks, months and years so our families can tell their friends we were good Christians?

It is comforting to think in absolutes. I understand them. It is comforting to say everything is black and white. I should know. I was a journalist, and people wanted set truths that they could repeat with confidence, even if these generalities and slogans by definition are bound to be wrong in many cases. They want certainty! They want “the” truth! And when I wrote what was difficult, and I questioned things, I was threatened with death. Because I scared the people who wanted absolutes. But life doesn’t deal in absolutes. Life is messy and complicated and painful and doubtful. I should know.

This is the last time in my life that I will speak. So I thank you for the care you have provided, and I make this last request, that you make sure you have what you need in writing. My wishes are that you move me to another room. Take me off the patient list, and don’t tell my family anything. Take all the tubes out of me and off of me. The feeding tube, the drainage tube, the breathing tube, everything. You can keep the IV for pain medications if you like. I don’t expect to last for long, but no matter how long it takes, at least I will be on my way out.

Die alone? Yes, I will die alone. Without a single loved one by my side. And I understand what you are saying, that it may take even a couple weeks, although I feel certain that it will be a matter of minutes. Would you want someone screaming and wailing at your bedside, saying you will rot in hell, demanding that you not go, when that is all you want to do? I am not killing myself. This disease is killing me. All I ask now is to die in peace. Of course I would love to have a loved one, anyone, who would sit by my bedside and comfort me at the end, but I don’t have anyone who loves me more than their love of being righteous in the eyes of their petty little God who would punish me eternally for choosing to let my disease run its course. So may I please sign whatever I need to sign, while I still can?

SAY WHEN

I’m sorry to complain. I am grateful for this opportunity to stay alive, and to have the gift of a donated liver. Someone lost a family member, and in their worst moment of grief, they were able to think about someone they don’t even know, and offer me a new chance to raise my daughter as a single father. Of course I am grateful. Of course. But I am still a grown man. And I don’t like being treated like a fractious child, and scolded for no good reason by the nurse, who is in too much of a hurry to do a good job.

I know you are busy here at the hospital, especially in this clinic, and I really do understand. There are so many people, some transplanted, some on the waitlist, some getting sicker, or rejecting an organ, some finding out that have some other health problems so they are about to get kicked off the waitlist, some changing insurance, and some reacting to medicine, or finding out they got a new disease with their new organ. And all the while, suddenly an organ gets flown here in a box of ice and someone like me is rushed to the operating room and the doctors leave the clinic to do the surgery, and other people come in to cover, and the nurses are running around to try and make it all work. I do get it.

And yet still, I am a grown man. I am responsible. I am following the medicine regime to the letter of the law. I am going to the lab every time as required. I am drinking a lot of water, having zero alcohol, resting when I can, eating healthy, taking walks every day, writing everything down, taking my blood pressure, checking my weight, all of it. I have never been late to an appointment. I come early. I have never given this nurse any reason to be frustrated with me. And yet today, she scolds me. She shows her anger and her frustration, but is that my fault?

All I asked was to have the next appointment be on a Monday if possible, because that is my day off, and she lit into me.

“You are NOT allowed to work until WE say when! WE will tell you when you can work! The NEXT appointment is supposed to be the one where the doctors decide if you are able to work! YOU don’t decide when to work! THAT’s not the DEAL! That’s not how it works! You are not following PROTOCOL! WHO told you you can work!?!” She stood with her hand on her ample hip, looking down at me, instead of sitting down like the doctor and interpreter always do, so they can look me in the eye, like equals.

“Mrs. Nurse,” I told her. “I understand your position, but please take a quick moment to understand mine. I will gladly tell you who told me to work. Our mutual friend Necessity told me to work. I am a single father – my wife was murdered and left me our baby girl, which is why I left my country, or I would not be here to bother you. She is 17 now, and she is going to high school and working as many hours as she can, but she cannot earn enough by herself to pay our rent.” The nurse started to interrupt, but I held up my hand. And although we were both then speaking at the same time, the interpreter very kindly kept saying what I was saying to the nurse.

“I cannot live under a bridge with my daughter. She needs a roof over her head. She needs to be safe. My motivation for having the transplant in the first place was to provide for my daughter. Her teachers say she is bright, and she wants to go to college and become a nurse. Do you think if she becomes homeless right when she is taking college exams and applying for college that will help her? I have to work and keep her housed and safe.”

The nurse just rolled her eyes. “I don’t have time for this. I’m in five rooms at once! I’m gonna write a note and tell your doctors that you went to work before you were approved. Go talk to the scheduler about your next appointment. You can go now,” she told me and then walked out. Luckily, the scheduler was more understanding, and I got my Monday appointment!

Again, I am deeply grateful for this opportunity. I understand they have recalcitrant patients whom they may need to speak sharply to. But I am not one of them. I understand why the nurse is frustrated. But I was lucky to get my job back, and I don’t want to lose it. My whole point in getting the new liver was to work as hard as I can so my daughter can have a better and longer life than her mother had. Do you know my wife only lived one more year than my daughter’s age right now? That was not a long life! I know my wife is watching me, and I don’t want to let her down. I want her to see our daughter in college, alive and well. That is what I am living for.

COMFORT

My greatest comfort is my God-given sense of humor. God made me a happy-go-lucky fellow who loves to work. Always cheerful, always joking. Some of the ladies at the packing plant get ticked, I will admit, because of my humor. But like I told the boss, I only tease the ones who show up five minutes late. The ones on time, I just welcome to work. But the stragglers have to take a hit. It’s my way of helping the boss remind the workers that five minutes early is a lot better than five minutes late, haha!

Yesterday a newlywed gal came rushing in five minutes late and I called across the packing plant, “What’s the matter, hon? Did you have trouble this morning because the bedsheets were stuck to you?” Well, they all know me, so she just waved me off and kept on running to her station. I am 82 years old so they take me with a grain of salt. You can’t teach an old dog new tricks, I told them.

My greatest pleasure in life is working. It has been the light of my life, the best thing I have known. The worst thing about this cancer is that they tell me I can’t work any more, that I won’t be able to go back. Work is all I’ve known. It’s what I was born for, and it’s what I enjoy. It’s like if you told my wife she was not allowed to spend any time with her grandkids. She would go crazy. Now she’s saying just take it easy. Stay home. Visit with your family. Yes, I love them. Of course I do. But I’m used to the pace and the flow of the packing plant. I’ve been there for 40 years, since I hurt my leg in a fall off a ladder and came in from the fields, you know what I mean? I was born to work. And I want to work.

Now the doctors are showing me these images and studies and saying the cancer is pretty much all over. Cannot be operated. No use with chemo. Nodules and lesions and what have you, all over the lungs and kidneys and wherever else. They talk about comfort measures. I told them, my only comfort is work. Just send me back to work. I don’t care how much I get paid. I can work for free. If I can’t work, I can’t relax. But they said no go. My working days are over. Well, I might have to get some chickens then just so I have something to do. Because I’ve gotta stay out of the wife’s hair somehow. She isn’t gonna want to see me moping around the house day and night. I mostly worked with women so I’m used to the hens, haha.

I wish some of my pals from work would come over and cheer me up, but the hours are long and they go home tired. I wouldn’t care if they teased me. I wouldn’t care if they joked around until I laughed so hard I almost cried. I wouldn’t care if they teased me kinda rough, you know, like you do when you really care about somebody. When you trust each other like siblings. The people at the packing plant, you know, they’ve gotten to be like family. I’m gonna miss them a lot. I wonder who they’ll have to roll their eyeballs at now. Probably nobody. I wonder if they’ll miss me. Because I’m sure gonna miss them, even the grumpy ones. To my dying day.

HOLE IN THE HEART

See, I have a hole in my heart, and God put it there for a reason. I don’t know the reason, but I was born with it. The doctors say it happens sometimes. And if you live way out in a remote area, like I did, no one finds out. You are just puny and weak and that’s just how you are, and nobody thinks about why or about trying to change it.

The doctor for my pregnancy told me that a whole bunch of women, especially from other countries but even from here, first find out they have a hole in their heart while they are pregnant. Because you have to make so much more blood and you are pumping blood into the baby and your heart suddenly gets too tired to do it, and then they do these studies and they see the hole.

So before I knew I was pregnant, I found out my husband was seeing a woman who works with us in the fields. My friends told me, and I confronted him. At first, he denied it, and then he got very angry and defensive. He started yelling at me, instead of taking any responsibility for what he had done. He even blamed ME for HIS cheating! He told me that I was unlovable and that it was my fault he cheated. He really did that.

At the moment of hearing those words, and seeing the disdain in his face, my eyes were opened, and I saw that there was something wrong with his heart. He was not loving. He was not true. He was sick somehow and not able to love like a real grownup. So I told him to move out. And he did. I was sad for a few weeks, thinking how unfair it was. Then I noticed I hadn’t had – you know – since he left. And I found out I was pregnant. So he left me something good.

They are going to monitor me very closely during the pregnancy to make sure my heart is handling the extra work, and they plan to repair the heart once the baby is born. Isn’t life strange? I found out about both of us having a hole in our hearts during this pregnancy. God put the hole in my heart, and God is making it possible to fix it. My husband told me I am unlovable, but I know that is not true, because God loves me.

I believe that the hole in my husband’s heart was placed there by the devil, not by God, and it is the devil who’s keeping it open, because my husband chooses sin over purity. I think his heart leaks and that is why his love runs out. And I don’t know who can fix it, unless he turns to God, which I don’t think he will. I wish he would, because he is still my child’s natural father. And it would be nice if we could respect him.

Some of my friends told me I should try to get him back, for the baby’s sake, but I told them no. No room in my heart for a cheater and a liar. Compassion, yes, forgiveness, yes, but love and respect – no. God can love him. I cannot. And maybe once my heart is fixed, God will put someone on my path who is more worthy of my love. This is my hope and my prayer.

DISDAIN

When love turns to disdain, there is truly nothing left.  Some men don’t seem to understand this.  Mine thought he could hide things from me, but even if I didn’t see his phone or his mail, I saw his heart.  I saw his expressions.  I saw his shame.   And I could see he was hiding things, and the more he hid, the more he got mad at me.  So transparent!  Like a child surprised when Mommy sees what he is up to.  Thinking he is so clever and sneaky.

He thought when I confronted him about his odd behavior, if he just yelled at me that I was crazy, jealous, making things up, that I would fall for it.  But I know him.  And I trust my judgment.  And he isn’t going to convince me that I am crazy.  A woman knows.  A woman knows.  I am not crazy.

So finally this woman shows up at the ranch, looking for him.  And before she can say much at all, he is yelling in her face, calling her all kinds of things, terrible things.  Kicking her off the ranch, not letting her stay and wait for the evening bus, making her walk for miles to get to the next town, while he is on his knees trying to hug me around the waist, and begging me to forgive him.   No.  No.

Like seeing him treat someone else bad will make me feel better about his betrayal.  Doesn’t he know me?  Didn’t he ever?   Like saying he is sorry is going to change one thing.  Or seeing that poor woman with her little plastic bag of her belongings, walking away on that dirt road.  Thinking she could trust him, like I did.  No.  No.

It is seven years later, and our kids are grown.  We are grandparents now.  And still he calls me, wants to come over.  Even now, when I am here in the US with my daughter.  Let’s try again, he says.  I made a mistake, he tells me.  But no.  When love turns to disdain, there is nothing left.  Truly.  I could not go back to him to save my life.  And I told him so.   Apple cider can turn to vinegar, I told him, but it will never turn back.  It will never turn back.