Here, There and Everywhere

Posts tagged ‘miracle’

Don’t Die!

From Angie’s Diary. Excerpt from Good Grief: Love, Loss and Laughter by Gabriel Constans.

Don’t Die!

I fell in love with Robin the first day we met. She was playing her role, as a recently admitted hospice patient, with great style and flair, while I lumbered through my part as the experienced “seasoned” social worker.

She wasn’t nominated for an Academy Award and didn’t give a damn about her looks. Her body looked like a skeleton with a layer of skin painted on with a thick brush. A blue and green scarf covered her almond-shaped, balding head. Her eyes sparkled like diamonds and her smile hung in the air like the Cheshire cat.

She had a warmth and graciousness that the worst ravages of metastatic breast cancer could not hide. Entering her small, low-income apartment by the sea, felt like entering a sanctuary or coming home for the holidays.

Her one-woman play about a terminal disease had about a two year run.

She talked openly about dying, but more about living. She wasn’t afraid of death, but she loved life. She loved her mother, her boyfriend, her family and friends. She loved music, art, beauty and nature. She was thirty-eight years old and she wanted to live until she was an old woman with grandchildren. She kept waiting for a new treatment, another remission, some kind of hope or miracle. It almost came twice.

An experimental trial with a new drug regime was supposed to be available through her HMO but kept getting put off, then delayed, eventually fizzling away into the land of false promises. Then came the dream of a cure with Angiostatin and similar therapies, which exploded across the media and public airwaves as “extremely hopeful cures for cancer tumors.” Again she was told of some local trials and assured that she was eligible to participate, but this too seemed to fade into oblivion as time slipped by, leaving her to use whatever means she had at her disposal – blood transfusions, medications, hospitalization, intravenous therapy, diet, herbs, detoxification, prayer, meditation, visualization – she tried it all, but the cancer kept chipping away.

STORIES CONCLUSION AT ANGIE’S DIARY

Just Around The Corner

Excerpt from Good Grief: Love, Loss and Laughter
by Gabriel Constans.

Just Around The Corner: Hope and Healing

I fell in love with Robin the first day we met. She was playing her role, as a recently admitted hospice patient, with great style and flair, while I lumbered through my part as the experienced “seasoned” social worker.

She wasn’t nominated for an Academy Award and didn’t give a damn about her looks. Her body looked like a skeleton with a layer of skin painted on with a thick brush. A blue and green scarf covered her almond-shaped, balding head. Her eyes sparkled like diamonds and her smile hung in the air like the Cheshire cat.

She had a warmth and graciousness that the worst ravages of metastatic breast cancer could not hide. Entering her small, low-income apartment by the sea, felt like entering a sanctuary or coming home for the holidays.

Her one-woman play about a terminal disease had about a two year run.

She talked openly about dying, but more about living. She wasn’t afraid of death, but she loved life. She loved her mother, her boyfriend, her family and friends. She loved music, art, beauty and nature. She was thirty-eight years old and she wanted to live until she was an old woman with grandchildren. She kept waiting for a new treatment, another remission, some kind of hope or miracle. It almost came twice.

An experimental trial with a new drug regime was supposed to be available through her HMO but kept getting put off, then delayed, eventually fizzling away into the land of false promises. Then came the dream of a cure with Angiostatin and similar therapies, which exploded across the media and public airwaves as “extremely hopeful cures for cancer tumors.” Again she was told of some local trials and assured that she was eligible to participate, but this too seemed to fade into oblivion as time slipped by, leaving her to use whatever means she had at her disposal – blood transfusions, medications, hospitalization, intravenous therapy, diet, herbs, detoxification, prayer, meditation, visualization – she tried it all, but the cancer kept chipping away.

She went to the hospital for one final assault, then returned home. It was a glorious Indian Summer when I saw her for the last time. I knocked on her weathered door, heard her call out “Come in.” and entered her tiny sunlit living room, which was also her bedroom, library and dining area.

Moving towards the head of her hospital bed, I saw that she’d been through the ringer and was losing ground fast. Her face was black, blue and yellow, as if she’d just been in a bar room brawl. Her skin was almost translucent, stretched over her frame like a sheet of white plastic. Her arms were as thin as straws and she struggled to breathe deeply. In spite of her frailty and obvious diminishing returns, her eyes still danced and she spoke vibrantly about life and healing.

“I hope my life made a difference,” she said softly.

“You know it has,” I reassured. “You’ve given such love.”

“Yes, I guess so,” she said and touched my cheek gently with her fingers. “That’s been the best part.”

“What’s next?” I asked tentatively, wondering what she planned to do with her remaining days.

She turned away, looked out her large window and watched a mother and daughter lean against the cliff side railing, their hair blowing in the wind, the child laughing, screaming with delight. Without changing position, she replied, “I don’t know. What do you think?”

Part of me wanted to run. My many years of listening and learning how to be present seemed to slip out the door. “I don’t know,” I said lamely. “Part of me doesn’t want to believe this day has come.” I followed her gaze, not really focusing on anything. My hopeless grasping continued. “I don’t want you to die.”

“Nice thought,” she smiled, “but just a wee bit unrealistic.” She rolled her eyes and grinned with amusement.

“Yeah,” I blushed. “It’s just . . . I don’t know . . .” I struggled to find the right words then looked her way. “How do you let go of everything you’ve known with such dignity and grace?”

“I don’t have any choice,” she said without hesitation.

“I know we don’t always have a choice over what happens to us,” I blundered along, “but we have a choice in how we respond to what happens, don’t we? If I was in your position, I’d be screaming and yelling to my last breath.”

Without blinking, she reiterated, “Like I said, I don’t have a choice. This is who I am.”

Robin died two days later. She died like she lived, tenderly and peacefully. I, on the other hand, keep wailing away at the ravages of cancer, thinking I have more choices in life than are probable and hoping a cure for cancer is “just around the corner.”

MORE GOOD GRIEF: LOVE, LOSS AND LAUGHTER.

Hard Times Require Furious Dancing

Hard Times Require Furious Dancing by Alice Walker (New World Library, 2011). Reviewed by Gabriel Constans.

Alice Walker’s collection of heartfelt poems range from the long thoughtful The Taste of Grudge, to the shortest of the lot called One Earth, which reads like a Reggae mantra, “One Earth. One People. One Love.”

The last lines in her poem Watching You Hold Your Hatred are truth incarnate. “There is no graceful way to carry hatred. While hidden it is everywhere.”

There is also a beautiful poem about Myanmar (Burma) democracy advocate Aun San Suu Ky (who was imprisoned and under house arrest for most of the last 20 years). It is titled Loving Humans.

This work, which combines Ms. Walker’s experiences, observations and insights from the last several years, in response to personal and social unrest and conflict, are honest, forthright and tend to resonate with one’s head, heart and gut.

Without further denigrating this collection with my meager and shortsighted words, it is probably best to let the author speak for her self and share some of her humanity and wisdom.

THIS ROOM

This room
Is very powerful:
Buddha, golden,
Holding down one side;
The primordial
Great Mother, black,
Offering her
Bead
Of mitochondria
Holding down
The other.
My meditation
Chairs
Are made of wicker
A miracle
Crafted by
Human hands.
Human being
May I not
Forget you
In all
This talk
Of God.

MORE REVIEWS

My Son Ryan and AIDS

Excerpt from Don’t Just Sit There, Do Something! Grief’s Wake Up Call.

In 1984, one week before Christmas, Jeanne White was told that her son Ryan had contracted AIDS from a blood product he’d used to control his hemophilia. The doctors gave him six months to live. Struggling to make life as normal as possible for her thirteen-year-old son, she attempted to have him return to school as soon as possible. She did not realize the amount of fear and prejudice that would result when the school heard of his illness and refused to allow his return.

After numerous court battles, which brought he and his mother to national and international attention, Ryan was allowed back in school only to be inundated with hate, ignorance and abuse. As a result of their struggles Ryan was befriended by numerous celebrities such as Elton John, Michael Jackson and Phil Donahue and began to educate children and parents about AIDS by speaking at schools, appearing on numerous talk shows and news programs and having a movie about his life broadcast on national television. On April 11, 1990, five and a half years after his six-month prognosis, Ryan died. His funeral was one of the most publicized services of that decade.

Shortly after Ryan’s death his mother Jeanne, who had always been behind the scenes publicly, was asked by several senators to speak about Ryan to Congress in order to pass national legislation for AIDS education. She reluctantly agreed and was instantly thrown into the media spotlight. The bill, THE RYAN WHITE CARE ACT, was subsequently passed and Jeanne White became one of the most sought after speakers in the country. She founded the Ryan White Foundation and continues advocating for AIDS education and prevention with children, teenagers and their peers.

JEANNE WHITE:

A lot of times it takes a little push. Everybody likes feeling sorry for them selves over the death of a loved one. That’s kind of normal. With me it was Senator Kennedy and Senator Hatch who got me going and I fought it every step of the way. Ryan was always the public speaker not me.I was just following Ryan around. Senator Kennedy and Hatch had just named a bill after Ryan called the Ryan White Care Act and they wanted me to come to Washington DC. It was too soon. We had just buried Ryan two days before and they asked me to come anyway. They knew it was going to be hard, but they said, “You know, this is the first chance that we have of getting something done for people with AIDS.” They said, “Ryan’s death is so fresh on everybody’s mind, his illness and funeral was carried by every network for the last week and a half. This is the first chance of someone being in the public eye that takes the focus off the disease and puts it on to the fact that ‘anybody can get it.’”

I said, “Yes”. I said, “No”. I said, “I can’t, I really can’t. Ryan used to do that, not me.” On the second day people from Senator Kennedy’s staff called me again. They said, “Terry’s going to be there.” Terry and others had helped me through a lot of bad times. During all the years that Ryan fought AIDS the more people I knew that died of AIDS. And I had seen so many families just like me. Even though I didn’t want to get involved, so many people helped me that I kind of felt like I owed it to them. Then Senator Hatch called me and said, “You know, we’re not going to take ‘no’ for an answer. I have twenty-three senators lined up for you. All we want you to do is tell what it’s like to watch your son live and die with this disease.”

So I went to Washington and I’m so glad I did. It made me feel good. I didn’t feel I did great, not like I wanted to. I could have done better but I knew I was sincere in what I felt and said. After that, people wouldn’t let me stop.

Phil Donahue, who was a pallbearer at Ryan’s funeral, has become a very good friend of the family. When he was in the hospital visiting Ryan he noticed all the mail and could not believe how much was pouring in. He took a bunch of the letters back to New York with him and called saying, “Do you realize these letters are all from kids?!” I said, “Well yeah, that’s who generally wrote Ryan.” He said, “Jeannie, you’ve got to continue this work. You’ve got to answer this mail.” Phil said, “I’ll hire you an assistant.” There were over sixty thousand letters! Phil kept his word and with the help of Marlo Thomas and the St. Jude volunteers, they were able to find a lady that lived close by.

I was so impressed with Ryan, so proud of him. Sometimes I’d think, “Golly, is he really my son?” To me he was just my little kid, but to the nation, he was this celebrity and hero. I hated to even think that I could follow him, his impact was so great and people listened. When I speak I’m always a nervous wreck, even though I’ve been doing it now for years. I’ve messed up a lot, but I’m me. When I introduce myself I say, “I’m just a mom. I’m a mom just like your mom and because of this misunderstood disease called AIDS, my life changed overnight.” I say a prayer every time I go out. I say, “Lord, please help me to get through this. Help me educate these young people. Help me make a difference in their lives with my story.” Then I say, “Ryan, please be there with me.” Then I have this kind of surge that goes through me and I feel like its Ryan saying, “OK, Mom, I’m with you.”

I think we’ve made a lot of progress. By “we” I mean everybody who has committed so hard to fighting this disease with education and through therapy and drugs and medical treatment. I think we’ve come a long way. The people who have to be commended the most are the people that are not here. Their lives had to be lost for us to get where we are today, to show compassion. Even though I’m tired I’m still doing it because of the Terry Burns, the Mike Callums and the family members that I’ve seen.

One day we were riding in the van and Ryan reached over and grabbed my hand and started swinging it. I looked over and said, “OK, what do you want?” He said, “I don’t want anything.” “Come on Ryan, what do you want?” I continued. He replied, “Can’t a son hold his mother’s hand? ” I said, “Come on, you really don’t want anything?” “Mom, I just want to say thank you for standing by me, for always being there for me.”

I remember that moment when I speak to teenagers. You know, we always think everybody’s going to be here tomorrow, but one day you’re going to wake up and somebody’s not going to be there. I say, “You might think this stupid old lady up here doesn’t know what she’s talking about, but I do. The next time you go home from school, even if you think it’s the corniest thing you’ve ever done, write a letter to your parents. If you think you’re real cool and you can’t go up and hug them around their neck and say, ‘Mom. Dad. Thank you. I love you.’ Then write a note and put it on their pillow. Do something so that you’ll never be sorry.”

It would have been easy to be mad all the time at the people who ridiculed us, who discriminated against us, but we had to put our lives in perspective and look at what was really important and what wasn’t. Everybody saw on the news that it was this fight for Ryan to go to school, but the number one priority in our life was keeping him healthy. Second, was keeping my job at General Motors, because we had great insurance and it paid for all his medical bills. And the third part was my daughter Andrea, keeping us together as a family.

At first, it’s like, “Why?” Everybody wants to know why. Why wasn’t he given a miracle? All my life I was taught if you pray hard enough, if you believed hard enough, that you would get a miracle and you could never doubt that or you wouldn’t get one. I never thought Ryan was going to die. I just couldn’t quite understand that. I thought nobody had more people praying over them than Ryan did. I prayed, “Lord, wouldn’t it be nice to show this kid a miracle in front of the whole nation.” Everybody knew he’s lived with AIDS for five and half years. He’d been in and out of hospitals. He’s been blind twice. I mean, this kid had a heck of a life, why couldn’t he be given a miracle? When he died, it was like, “Why? What more could we have done?”

When he died I was really taken aback. I started questioning my faith. I think that’s normal. I mean, I started wondering if there really is a god? How does God let things like this happen? I see people around me all the time asking that question. “Why do young kids have to die?” I mean, anybody really, lots of other good people have died too. So then I started trying to find reasons.

After awhile it started to get clearer. “Look at all the things he’s done in his short life. He’s educated so many people. Wouldn’t we all like to say we had accomplished as much as this kid did in only 18 years?!”

I tell the kids that when I get to heaven I’m going to be angry. I hope the Lord forgives me for being angry, but I’m going to say, “Why did you have to take Ryan?” Then I say, “You know what I think he’s going to say? He’s going to say, ‘You know what, he was only supposed to live three to six months. I gave you five and a half years and you’re still not happy.’” Maybe I got a miracle. We had quite a few Christmases that we never thought we were going to have.

I didn’t want to lose my faith. I was mad at my faith. I was mad at my church. I was mad at my religion. I was mad at God. But I wanted to find a reason. I eventually started seeing things around me like the Ryan White Care Act and Elton John go through rehabilitation and get off of drugs and alcohol and I thought, “My goodness, Ryan touched more lives than I ever knew. Perhaps those people got miracles and they don’t know it.”

Michael (Jackson) was a real good friend of Ryan’s. When Michael called Ryan in the hospital once, Elton said, “With all the money that’s in this room, we can’t bring this boy back to life.” That was a real big realization to Elton . . . that he had all the money in the world, he had everything he could ever buy, but he could not buy his health. That’s why he entered rehab. When Michael called me after Ryan died, just to see how I was doing, I said, “I’m doing OK but what made you and Ryan so close?” When Michael would call, they would have long phone conversations. He said, “You know, most people can’t get over the awe of who I am, so nobody can ever act normal around me. Ryan knew how I wanted to be treated, because that’s how he wanted to be treated. I can’t trust anyone because everybody always wants something from me.” He could tell Ryan anything and Ryan wasn’t going to go blab it or tell it, you know. “I promised Ryan he could be in my next video and now that he’s gone I want to do a video for him.” He made a video called Going Too Soon, which was about Ryan.

It’s hard to talk about death. I didn’t want to talk about it because I didn’t really think he was going to die. I can remember him saying what he wanted to be buried in. I told him I really didn’t want to talk about it but he went on anyway, “I know you like me in a tux but I don’t want to buried in one.” I said, “OK, Ryan, what do you want?” I mean, it’s like, I’d say anything to get this conversation over with. He says, “I want to be buried in my Guess jeans, my red T&C (Town and Country) shirt, my Air Jordan’s and my Jean jacket.” He pauses, as I’m fading out, then says, “You know how people are when they’re lying in a casket and everybody is watching their eyes to see if their eyes move? I want my sunglasses on and I want to be buried in my boxer shorts.” “Your boxer shorts?” I exclaimed. He’d just switched from wearing briefs to boxer shorts and really liked them. “Why your boxer shorts?” I deadpanned. “You know that hernia I got? I want to make sure I . . .” He had a hernia that they couldn’t operate on because he had no platelets. “I want to make sure I’m comfortable.” And I thought, ‘Well, if you’re dead, I mean . . .’ “OK, just talk,” Ryan said. “You know, as a mom.”

One of the best things after Ryan died was when people talked about him. I think it was also good for me to get involved in something I truly believed in, doing something, instead of sitting at home feeling sorry for myself. That’s the easy way to go . . . feeling sorry for yourself. People didn’t let me, although that’s what I probably would have done if not pushed. But people were always talking about Ryan and people still do and that kind of keeps him alive within me.

CONTINUED

Baby Wreaks Havoc

Having a newborn wreaks havoc on two aspects of daily life I used to take for granted sex and sleep. I would give my life savings for one night of either after our son was born.

The reality of a baby taking control of our lives around the clock had crossed my mind but never stopped to linger until the first week of shock had passed with our new son, Shona.

Sleep deprivation is a killer. Night after night, every two to three hours, the call of the wild shrieks from the crib, “Whaaaaaa.”

“No. It can’t be!” I exclaim. “Not again! We just fell asleep! I can hardly move.”

As I roll out of bed, hit my knee on the desk and grope my way through the dark, I remind myself that I wanted this experience. I asked for it and there’s no turning back.

How could anyone in their right mind choose this nightly torture? Nobody put a gun to my head, promised me riches or threatened to blow up my house. This had surely been a conscious decision, although it must have been made while I was in a coma or under general anesthetic!

As I turn the corner to enter the baby’s room, I slam my nose into the door I thought was open. I swear loudly.

“Whaaaaaa.”

“Hold on, I’m coming,” I groan.

Entering the room I quickly turn on the soft light and see my son’s arms flailing in the air as his tiny little mouth roars his need for attention like a ferocious lion. He grabs my finger with his waving hand and tries to suck on it. While picking him up I realize how small and fragile his body is and recall that his screaming is the only thing he can do to ask for help.

Cradling this sweet precious babe silently in my arms while he stares blissfully into my eyes soon releases any anger or frustration I was previously feeling. I whisper to myself, “How could I ever doubt the desire to create this amazing miracle?!”

After a diaper change and 30 minutes of rocking, I lay him back down to sleep with the hope that he’ll be knocked out for at least 48 hours. Why not dream for a miracle? I never get enough sleep anymore to really dream anyway.

By the time I’ve navigated my way back to bed I’m fully awake. Looking over at the clock I discover it’s 3 a.m., only about three hours before I need to get up for work. I glance over at my beautiful wife, Audrey, who is breathing loudly in the land of Nod. As I turn off the light and stare into the darkness, I begin to wonder if this madness will ever end.

Three months go by and nothing has changed. Not only is sleep a vague memory, but sex seems to have also disappeared down a long dark tunnel.

It’s 10 p.m. and Shona has finally fallen asleep. Audrey slowly undresses, slips into bed and beckons me with an alluring glance of desire and warmth. As we begin to lovingly caress one another, a slow fog of fatigue fills our bodies and without so much as a sigh we’re both gone, not from ecstasy, but exhaustion. The next sound we hear is not the anticipated joy of climax but a loud cry waking us from our unintended sleep.

Eight days pass. (Yes, I counted). It’s Saturday. Shona has gone to bed. We both took a nap earlier in the day and are anxious to co-mingle our bodies with pleasure. We finally feel that we have some energy for one another and are determined to not let anything come between us. That was the plan.

We begin one passionate kiss after another when I suddenly sense that Audrey’s mind has drifted away. I take a deep breath and apprehensively ask her what she’s thinking about. She nervously says, “Do you think he’s OK? He hasn’t cried in a long time.”

“Yes, I’m sure he’s just fine,” I reply and begin kissing her passionately with greater urgency. Again she stops and says, “I’m going to go check on him real quick. I’ll be right back.” While she’s gone to the other room I feel myself beginning to implode with frustration and resentment. “What about me? What about my needs?” I begin to feel sad and sorry for myself. She jumps back into bed and reassures me that our child is just fine and he’s, “soooooo cute.”

Time goes by and Audrey is surrounding my body when she suddenly exclaims, “Stop. That hurts!” We both look at each other in amazement. We didn’t expect this. Her muscles haven’t recovered from the trauma of birth and it’s too uncomfortable to continue. She’s just as disappointed as I am and we console one another with hugs and kisses.

Weeks go by. We attempt a variety of sexual activities but nothing seems to ease the pain except time. Finally, after three months of no sleep or sexual connection, a miracle happens!

It’s a Thursday night. A night I’ll never forget. For some reason known only to the baby gods, Shona goes to sleep at 8 p.m. and sleeps until 8 a.m. the following morning! Audrey’s body is fully recovered and we gently make love for the first time without any discomfort or pain.

What a thrill. It almost feels like The First Time all over again. My faith in life slowly returns from months of male postpartum depression. There is hope after all. It is possible to give birth, have a child and time for yourself and your partner. Patience, understanding and commitment to making it work eventually pans out.

Like the song from the movie Casablanca says, “You must remember this. A kiss is just a kiss. A sigh is just a sigh. The fundamental rules apply . . . as time goes by.”

So, when your tiny tot is screaming, you’re not sure if you’re awake or asleep and you think your partner has taken vows of celibacy, stop and remind yourself that this too shall pass. As sure as the sun comes up in the morning your baby will one day sleep through the night and the precious intimacy and joy of sex will flow again.

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