Today Is World AIDS Day

Did you know that?

December 1 is still World AIDS Day.  There still is no cure.  People still get sick and die because of HIV/AIDS.

People are also living much longer and are taking medicines that really do help slow the progress of the disease.

The drugs that work are very expensive and state and federal programs that help pay for them are in danger of being cut.

Sometimes the side effects and the dosing schedule are so difficult and intolerable that folks stop taking the drugs.

I spend a lot of time helping out at Higher Ground, a day center for people who are HIV positive.   It is a free-standing program of Triad Health Project, the local HIV/AIDS service organization.  Three days a week, every week, local churches and other groups provide lunch for 25-40 hungry clients and volunteers and the one paid staff person who tends the souls and cleans the toilets for all who come through the doors.

Higher Ground is a place of acceptance for many who have been turned away by family, churches, and friends.  Believe me when I say, God is in this place and miracles do happen here.  Like crack addicts who are able to stay clean and have their own apartments for the first time in their adult lives thanks to case managers at Triad Health Project and the support and love of peers at Higher Ground.  Or men like my friend Bill who has been HIV positive since the 1980’s.  He had a leg amputated above the knee a while back because of HIV complications and was back at “The House” a few weeks later, smiling.  Many volunteers over the years, from high school students to those of us with gray hair, have been profoundly touched by the courage and faith of the men and women who pass through Higher Ground.

Did you know all this was still happening?

Today, there is much more hope.  But AIDS is not gone.  If you can, please donate your time and/or money to a local AIDS service organization (see below).  They still need you.

Triad Health Project’s vision statement:

We will stand together for as long as it takes until HIV/AIDS is no more, promoting enlightenment, dignity, acceptance, understanding, and love; demonstrating that we are not only enduring this epidemic, but also prevailing over it.

Still.

Originally published December 1, 2010

Link to donate to Triad Health Project:  https://triadhealthproject.salsalabs.org/donate/index.html

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Brave Heart

Adaline, my 6-year-old granddaughter, jumped off the diving board at their neighborhood pool for the first time last Saturday, paddled to the ladder by herself, got out and said “That was awesome! Can I do it again?” And she did, many times. (Her mother was in the water close by.)

She also tried diving a couple of times and, of course, belly flopped. We adults all flinched, but she thought that was awesome, too.

Do you remember that feeling of accomplishment when you tried something new and did it? Maybe riding a bike or roller skating? Hitting a baseball or kicking a soccer goal for the first time? Playing a song on the piano or the the violin?

When was the last time you tried something new? When was the last time you were that excited and proud of yourself?

When was the last time you tried something new, belly flopped, and still thought it was fun?

At what point in life do we begin to censor ourselves? To protect ourselves from embarrassment or judgment? To care more about what other people think than about the thrill of just trying?

Who decides what is success and what is failure?

I don’t have all those answers.

What I do know is that as I’ve gotten older, I care less about what other people think and more about figuring out what feels right for me.

I was the “good girl,” the responsible kid, the rule-follower most of my life. I was teacher’s pet in 5th grade. (Please teachers, don’t ever do that to a kid.) I started to move out of that role in my 40’s and 50’s. I developed a smart-ass sense of humor that not everyone gets to hear. I found a faith that gives me confidence to be my real self. I try new things that feel a bit risky.

When I decided to stop coloring my gray hair in my 50’s, I felt daring and different in a good way. Then a few years later, I got purple and red glasses. They go with my hair. I like to to shake things up occasionally, do the unexpected.

My next challenge to myself is starting a writing group at the local day center for the homeless. I’m nervous, but excited. My friend, Shana, who works there, says I’ll be fine. What I know now that I didn’t 20 years ago is if I’m not fine, I can stop. It’s a volunteer job, my choice.

There is freedom in knowing I have choices in my life. I can take care of myself and be available for others, too.

I like being older these days. I like being a “wise elder” with younger people. After church yesterday, a young dad told me he still uses a suggestion I made at a Parents of Teens workshop a couple of years ago. That feels wonderful!

I hope Adaline always remembers that glow of accomplishment, especially when hard things come along, like multiplication and fractions and fickle friends. If she can jump off a diving board into water where she can’t touch the bottom at 6 years old, she can do anything!

I want to be like Adaline when I grow up.

 

 

 

I’ll Be Okay

A month ago, I wrote about learning the difference between depression and grief in “Finding Hope Under the Blanket.”

My description of grieving the loss of my young, functional body left out an event that triggered anger and envy. I got an announcement that a woman I know at church, a long-time hospital chaplain, was to be ordained as a Minister of Spiritual Direction.

My immediate reaction was intense. I looked back over 28 years with rheumatoid arthritis and saw how it limited my choices and opportunities.

I cried. I rarely cry, so that alone got the attention of the retired man I live with.

And me.

My whole being, body and soul, was sad and angry.

I wrote in my journal. I carried those intense feelings around for a couple of weeks before I talked to a trusted friend and my spiritual director. All that helped and the intensity of my feelings lessened slowly.

Last Sunday, I sat in church lost in a spectacular piece of music performed by our choir and organist. Out of nowhere, the thought popped into my head–without the arthritis, would you have the faith that your spiritual journey has led you to? Would you ever have considered any form of ministry?

No.

I started in AA a few months before my arthritis was diagnosed. Both are chronic illnesses and they have intertwined in my faith journey for the last 28 years. The 12 steps (12 Steps), particularly 1-3, 10, and 11, were my introduction to a template for a personal relationship with a Higher Power.

I am grateful for the many gifts of my spiritual journey. Sometimes I tell God I think I’ve learned enough and he can ease up on my challenges now. Then I have a special moment like last Sunday and I know God still has much to teach me.

Would I prefer a less painful way to learn? Hell, yes. But I don’t think it works that way.

I learned over these years how to do hard stuff. And deep inside me, in my soul, I believe that whatever comes, I can be okay if I remember to ask God for help.

In “Finding Hope Under the Blanket,” I wrote

Without words, my spirit reached out to God and grace made the difference…

Many times lately, my prayer is simply, “Help me.” And that is enough.

 

 

 

 

 

 

 

 

 

A Turtle Creates a Village

God, I offer myself to You–

to build with me and to do with me as You will.

Relieve me of the bondage of self,

that I may better do Your will.

Take away my difficulties, that victory over them

may bear witness to those I would help

of Your power, Your love, and Your way of life.

May I do Your will always.

(3rd Step Prayer from Alcoholics Anonymous)

I sat quietly with this prayer daily, starting in January, 2005.  It took the place of resolutions.

In late February, 2005, I found an odd lump in my groin.

On April 15, 2005, I was diagnosed with cancer–non-Hodgkins Lymphoma.

I had 2 malignant lymph nodes, but no symptoms and I felt fine.  After tests, the treatment plan was “watch and wait.” That took a while to accept. God and the doctor and I have “watched and waited” for almost 10 years.  Still no symptoms and no treatments. Dr Sherrill says at each checkup, “It’s still in remission.”

Go back and read that prayer again.  I’ll wait.

I started writing emails to a group of spiritual friends shortly after I was diagnosed with cancer.  I didn’t want to talk about it much, but I wanted people to pray for me and I felt compelled to share what happened and how I dealt with it, including my faith journey.

I’ve written before about being an introvert and a turtle.  When things get hard, I pull into my shell.  I’ve learned, though, that I can invite people in through my writing.  And I often feel pushed to write for this blog by a powerful and irresistible force.  I can resist for a while, but God starts writing in my head and it doesn’t go away.

This piece started forming in my head a couple of weeks ago.  I had cervical fusion surgery on December 2, 2014, to correct a place at the top of my spine that moved to a dangerous position because of damage from my rheumatoid arthritis.  A piece of my spine was impinging on my spinal column at the very top.  A fall or car accident could have ended my ability to breathe.

I’ve had several other surgeries, including a total knee, in the past 10 years, but nothing scared me like this one. It was “a big surgery,” Dr. Pool, the neurosurgeon told us. I asked the retired man I live with the morning of the surgery not to let them keep me alive on a ventilator if things went wrong.

The first couple of weeks after this surgery were very hard–lots of pain. I was grateful to be whole and breathing and alive.

Before the surgery, I started another email list of pray-ers.  And once again I could feel the power of the prayers. I don’t know how to explain that, but I know it’s real. I felt surrounded and encircled by God.

I try to tell God that I’ve fulfilled my 3rd Step Prayer obligations.  10 years is enough of this “take away my difficulties so I can show how God works in my life” stuff.  But more challenges come.

With each surgery, each setback, each test of patience and hope, I learn again that things will change.  And it’s all a bit easier when I remember God is with me. Not everything can be fixed completely. Sometimes it’s just different. Then I figure out how to live with it and keep going as best I can.

If I ever write a memoir, I think I’ll title it “Okay, God, Now What?”

 

 

 

I Thank You, God, For The Wonder of My Being (a psalm)

My God,

All those years it didn’t show and no one had to know.

Pain, yes, but no one can see another’s pain.

Now, some days I limp or have use my cane,

Food falls off my fork. I wear my napkin like a bib.

I ask for help and grind my teeth behind the smile.

Must I say “No, I can’t” after “Yes, I can”?

“Can we reschedule? I’m in the hospital.”

“I can’t help–my back is in spasms.”

“I can’t come–it’s a bad arthritis flare.”

My God,

I’m tired.

I’m humbled.

I’m embarrassed.

I want to be whole and healthy,

I want to walk for miles on Your green and flowering earth,

Or just to move more easily.

I want a simple boo-boo to simply heal.

Instead a hole in my elbow requires surgeons and stitches,

Bandages that won’t stay on and packing with silver

And lots of poking with the wooden end of a Q-tip.

An infection requires 3 days of IV vancomycin in room 1342

And 8 days of cleocin pills 3 times a day with lots of yogurt.

All because the dog tripped me months ago

And when I fell I banged my elbow.

I feel fragile these days.

My soul is weary.

I feel ashamed

Of illness, of frailty, of looking older than I am,

Of vulnerability, of dependence, of need, of fear.

My soul cries out to You

Help me!

And so the word “Acceptance” appears on the blackboard in my brain

As I lie in the MRI machine with my face 2 inches from the rounded wall

And my ankle is stretched in a way it doesn’t go

That makes it still hurt a week later.

And so in an article in an email,

I read about Passivity:

The less I do, the less I commit, the less I expect of myself,

The less I’ll disappoint or feel incompetent.

I know why I sit.

And so I read about Resilience:

The ability of something to return to its original form

After being pulled, stretched, pressed, bent.

 Terry reads “Still I Rise” by Maya Angelou as liturgy Sunday.

“Just like the moon and the suns,

With the certainty of tides,

Just like hopes spring high,

Still I rise…

Leaving nights of terror and fear

I rise

Into a daybreak that’s wondrously clear…”

And so I walk for 15 minutes at Bicentennial Garden

And I hear the birds and see the flowers

And look into the eyes of other walkers.

I receive the smiles and greetings of those I pass.

I gather in Your beauty,

Revel in Your gentle breeze,

Feel the muscles in my legs move

And send blessings to my malformed feet.

I move out into Your Grace.

And so I say “Yes” when my daughter says “I need you.”

I say “Yes, I can do that today.”

And so I will drive to Raleigh to be with Maggie,

The embodiment of Your joy and wonder and love.

My God, I thank you.

My Spirit thanks you.

My Soul is full of Your Grace.

 

(The title is from a chant by Isabella Bates on the CD “Sound Faith.”)

A Good Man Gone

My brother, Jim Reaugh, died July 12, 2013, with dignity and grace.  For 3 weeks before he died, he drove himself to the hospital for radiation. He was hospitalized on July 5 for extreme shortness of breath. A day later, they began treating him for heart arrhythmia.  When transferred to the ICU he said he wanted to be DNR–do not resuscitate.  He said no to any further treatment, including chemotherapy. He was very clear that he was ready to go.  He transferred to a Hospice facility a couple of days before he died.  The staff there kept him as comfortable as possible.  My husband and I were with him through that last week and as he died.

Jim was a fiercely independent, gentle soul.  He DID NOT want to need help of any kind.  He lived alone, had no wife or kids. He did hard physical work for over 20 years.  He still had friends from high school and others he got to know later.  He didn’t share much about his illness with anyone.  We didn’t know the extent of it until he went to Hospice.  It was in his brain, his lungs, the cavity around the lungs and most of the bones in his body.  It’s hard to imagine the pain he lived with the last month of his life.  He was strong and stubborn.

He told me he was afraid after he was admitted to the hospital.  We all knew the likely progression of his illness thanks to the internet. It would be bad and probably fatal.  After the DNR decision, I never saw anger and I never saw fear.  He seemed to be at peace.

He died on his terms and when he decided to go. I am so grateful for Hospice’s assistance.

I admire his courage.

I am proud to be his sister.

I ‘tuck.

I’m stuck.  Or as Adaline used to say, “I ‘tuck.”  I’ve been ‘tuck for weeks.  Not able to write.  Not able to plan much beyond today.  Wondering what I am supposed to be doing and how to get to the point of doing…anything.

I know that sounds like depression, but this time I felt more lost than depressed.  I asked God for some kind of sign or message.  Nothing.  Besides feeling stuck.

Slowly, the light started to go on inside my brain.  I spend a lot of my time waiting for the next disaster/crisis/time of need.  On hold. Stuck. ‘Tuck.

Last year, in 2012, I lived that way.  We quickly went from one grandchild to three.  Maggie was born in January, 90 minutes away, to Stephanie and Will, and had 2 open-heart heart surgeries by the time she was 9 months old.   Adaline turned 2 in February and welcomed (?) baby brother, Atticus, in April. With Kristin and Josh, their parents, they moved 30 minutes away a few months later.

Our daughters took turns with disaster/crisis/time of need.  I gave up hope of planning anything more than a day or two in the future.  The retired man I live with and I turned 61 and 60.  We tried to spread ourselves, like a spoonful of peanut butter on bread, as far as possible, but we got thinned out at the edges.

2013–they are all healthy and well!  Or at least living in a normal state of sleep-deprivation with joy and wonder, colds and ear infections, crawling and walking, eating solids, talking, tantrums,  toilet training, and sibling rivalry.

I still live each day with hyper-vigilance and concern.  Ok, worry.  I am stuck, waiting for trouble or need.

You know what, I don’t have to live like this anymore!

On May 9, 2013, I celebrate 26 years of sobriety.  26 years, one day at a time, of no alcohol or inappropriate drugs.  Today I am a recovering, not cured, alcoholic and I’ve learned a few things:

I am a beloved Child of God.  And therefore, I have worth.

God and AA  and Al Anon help me stay sober.

I can’t control anything except my thoughts and actions.

Everyone I cross paths with is also a beloved Child of God, doing the best they can.  They each have a Higher Power who watches over them.  That Higher Power is not and never will be me.

There’s freedom in letting go of protecting others from pain and hard stuff that I can’t stop anyway.  I learned how to deal with pain and hard stuff one step at a time, one day at a time, asking for help from God and family and friends.  I can’t stop the pain and hard stuff in my daughters’ lives.  I hate that, but they have their own lessons to learn, if I stay out of the way.

I’m writing now.  I have ideas for how to use my freed-up time.

God says, “Go for it.  They will be okay.”

Movin’ On

I don’t do resolutions anymore.  They’re always the same anyway.  Eat better.  Move my body more.  Take time for myself.  Stand up straight and do right.  Don’t lie.  Don’t cheat.  Don’t be afraid.

I do reflect on the year just past, though.

January 11, 2012:  Our 2nd grandchild (Margaret Jane–Maggie) was born.

February 25, 2012 (and all year long!):  Our first grandchild (Adaline) was 2.

April 2, 2012:  Our 3rd grandchild (Atticus), Adaline’s little brother, was born.

March and September, 2012:  Maggie had 2 heart surgeries and is all fixed and just like any other delightful almost-one-year-old.  (Thank you, Dr. Mill, at UNC Children’s Hospital!)

April-December 31, 2012 (and forever):  Adaline and Atticus pushed their parents to new levels of love, patience, and sleep deprivation.

January 1-December 31, 2012 (and as long as we live):  We loved them all.

2012 stretched and challenged me physically, emotionally, and spiritually.

So what were the gifts in this full year?

I have 3 healthy, happy, amazing grandchildren!  Christmas 2011 we had one.  Now we have 3.  Mind boggling and tiring and such fun, all at the same time.

I finally forgave myself for not being a “good enough” mother.  My daughters showed me that I WAS a good enough mom and that each day with two  little ones was hard.  A wound I carried in my heart for a long time starting healing.

I have 2 amazing, strong, loving daughters who are much better mothers than I was.  Luckily, we all mostly agree on how to parent.  My younger daughter, mother of 2, coaches her older sister and tells her, “It will get better.”

My husband and I learned to be more gentle with each other.  He is a good father and the best grandfather.  We are aware of time passing and our bodies changing and a drive to miss nothing!  We take care of each other.

I watch how we help our girls (both are close by) and I am painfully aware that my parents were never able to give me the same support and presence.  Now I know how much they missed and I am sad for all of us.

I value friends (and a therapist) who let me be honest and vulnerable.  I cannot do the hard stuff alone.  I tried that this year…again…and it didn’t work…again.

In 2012, I lost a sense of balance between my needs and my family’s needs.  In 2013, I want to do better.  I want to take care of myself, physically, emotionally, and spiritually.  I want to be alive for a long time!

I want to keep learning and growing and stretching and trying new things.  I want to play with my grandchildren.  Their laughs make everything else in the world go away and I am in the moment.  That’s the best gift of all.

I am very grateful.  Many times I had the sense that all of us were held in God’s (roomy) lap.  We were surrounded by prayers and we felt the strength and support and love of our community.

I’m not the same person I was on January 1, 2012.  Are you?  Is anyone?

UNSHAKEABLE LOVE, BROKEN HEARTS AND PRAYER

(for Sarah, Nadine, Betty, Judy, Kay and too many others)

Yesterday, a young man killed his mother and then drove to the school where she taught kindergarten and killed 20 kids ages 5-10.

Why?

How could anyone do that?

I’m kind of glad I don’t understand.  I don’t want his actions to make sense to me.  I don’t want my brain to work that way.

I have more than one friend whose adult sons and daughters live with mental illness.  Sometimes medications help, sometimes they don’t and sometimes they just make people feel weird and they don’t take them.  Sometimes nothing helps.

My friends, their moms, are left with unshakeable love, a broken heart and prayer.

My cousin spent 20 years wandering the country in the grips of schizophrenia.  His illness began in his mid-twenties.  My aunt and uncle knew of no way to help and were afraid to tell their friends.  For most of his years of wandering, my aunt and uncle didn’t know if he was alive or dead. *

They were left with unshakeable love, broken hearts, and prayer.

My friend has spent thousands of dollars trying to find help for her daughter’s bi-polar illness.  No combination of medications works well or for long.  Her daughter, now in her 30’s, lived on the streets at times and now lives with her mom and her teenage daughter in a big house in a beautiful neighborhood near the university.  My friend has legal custody of her granddaughter.

She is left with unshakeable love, a broken heart and prayer.

Last winter, as I sat in front of my gas log fireplace and listened to freezing rain, I wondered about a man I know who had no home.  He was unable to manage an apartment, bills, and grocery shopping, although he wanted to.  He hated going to the shelter.  It’s hard to sleep in a room full of not-so-clean, snoring, farting, crying men who at any moment might start yelling or take your shoes or go through your stuff.  Many of their brains don’t work right.  They are ill.

I learned not to blame.  Schizophrenia and bi-polar illness are diseases of the brain, as surely as my rheumatoid arthritis is a disease of my joints.  I’m lucky.  My medications work.  I have medical insurance to help me pay for non-generic prescriptions and doctor visits and surgeries.  I know people who have no money and no insurance.  They don’t get better.

Mental illness is a powerful force.  It is real.  Medication may or may not help.  Crack and heroin are easier to get and seem to help.  Then they create another set of problems.

Even doctors and physician’s assistants and nurses who really care run out of things to try.

I guess they, too, are left with broken hearts and prayer.

We need to do better.  The mentally ill man (boy, really), begging on the corner of Madison Drive and Market Street is someone’s son or brother.  Yes, maybe he’ll take your $2.00 and buy beer or cheap school wine instead of food.  Why not?  It lessens the pain and stops the questions, for a moment.

Why would anyone walk into an elementary school and kill 20 little boys and girls?  I don’t know.

I do know he was once a baby boy, just like my cousin, just like my grandson.  A child of God, just like all of us.

Jesus said we are to feed the hungry and clothe the naked.  Some of us need more and we are failing them and their parents and brothers and cousins and daughters.

Surely we can offer more than unshakeable love, broken hearts and prayer.

*My cousin, in his 50’s, is okay today, living in an assisted living apartment and helped by an exceptional support agency in Minneapolis, where his brother lives.  My aunt knows that today he is safe and warm.  She is one of the lucky moms.

Have You a Wound to Heal?

(A poem by Macrina Wiederkehr)

Once there was a wound

It was no ordinary wound

It was my wound

We had lived together long.

I yearned to be free of this wound

I wanted the bleeding to stop

Yet if the truth be known

I felt a strange kind of  gratitude

for this wound

It had made me

tremendously open to grace

vulnerable to God’s mercy.

A beautiful believing in me

    that I have named Faith

    kept growing, daring me

    to reach for what I could not see.

This wound had made me open.

I was ready for grace

And so one day, I reached.

There I was thick in the crowd

    bleeding and believing

    and I reached.

At first I reached

    for what I could see

    the fringe of a garment,

But my reaching didn’t stop there

    for Someone reached back into me.

A grace I couldn’t see

    flowed through me.

A power I didn’t understand

    began to fill the depths of me.

Trembling I was called forth

    to claim my wholeness.

The bleeding had left me.

The believing remained

And strange as this may sound

I have never lost my gratitude

    for the wound

    that made me so open

    to grace.

(From Prayers of Your Heart:  Prayers and Reflections)