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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I’m a 9. And a Turtle.

I’m a 9 on the Enneagram. The Enneagram is a model of human personality using nine interconnected personality types. (See more here: The Enneagram Institute.)

Nines are accepting, trusting, and stable. They are usually creative, optimistic, and supportive. They want everything to go smoothly and be without conflict. They typically have problems with inertia and stubbornness. (from the Enneagram Institute)

Years ago, in a day-long workshop led by my friends, Kim and Donna, I visualized my Totem Animal during a guided meditation. I’ve lived with rheumatoid arthritis in my body for almost 30 years so I hoped for something graceful and fast like a gazelle or a cheetah. I got Turtle.  (Here’s a blog post about this: Turtle or Gazelle.)

Turtle lives a slow and steady life of non-doing, one day at a time – not reacting, simply accepting and moving on in its natural rhythm. Turtle naturally withdraws and goes within when in turmoil. It does not need to learn the importance of this focusing inward, it naturally knows. (from whats-your-sign.com/animal-symbolism)

I had outpatient hernia surgery the end of August. Not such a big deal compared to some of my surgeries, but it still involved general anesthesia and an incision. I stopped taking the immune suppressant drug that keeps my arthritis under control because it makes me a very slow healer.

I was supposed to rest, right? I am really good at resting.

Inertia (Enneagram 9) +

Withdrawing into my shell when vulnerable (Turtle) +

Introvert +

Life-long Reader =

a rather happy camper, once the pain eased up.

The problem came when I got the okay to start my medicine again and resume normal activities.  Remember inertia from science class? It’s the resistance of any physical object to changes to its speed, direction or state of rest. In other words a body at rest tends to stay at rest. This body does. I enjoy doing nothing but reading and sipping on a cup of tea.

The retired man I live with and at least one of my daughters don’t have that gene. They got the one his mother passed on–always needing to be doing something.  Thank God.

Surely there are people who live somewhere in the middle of that continuum. Not in my house. The retired man I live with has 2 speeds–doing or dozing. I have one speed–slow, with rest stops.

I’m workin’ on it. (See this blog post: I’m Workin’ On It.)

I’ve made lunch dates with friends, enough that my checking account looks like I eat out all the time. I’ve gone back to water exercise. I’m writing this blog post.

I start in a 4-week small group at church tonight about white privilege. I’m president-elect of the Board of Directors for a local non-profit and I spent a long time on the phone this morning with our new Executive Director.

I live a quiet life, by choice. It works for me. I’ve learned the difference between isolation and solitude. Like most of us, I strive for balance. I want to choose to resist living inside my shell. Some days that’s easier than others.

Want to meet for coffee or lunch?

 

 

 

 

Elf on Vacation

Maggie popped into the kitchen from the garage wearing her Frozen (a link) pajamas made like thermal long underwear and sleep-fuzzed hair. The picture of Elsa that covered her chest was faded and the elastic at her ankles was loose. Favorites do wear out.

Maggie brought her parents to go to church with us on Easter Sunday. Her mother took her to go to the bathroom and change clothes. She looked like an angel when she came back. She wore a long white dress made of soft cotton with pastel smocking around the neck and little puff sleeves. White tights, white patent leather mary janes with rhinestones on the strap and brushed hair with a big white bow completed the look.

I was stunned. I looked at her mother and asked, “Did she want to wear that?” Her mother gave me a look and said, “We had a long talk before we left.”

You see, even before Miss Maggie turned 4 in January, she had strong feelings about what she wanted to wear. (She goes to a Montessori preschool and they talk about “strong feelings”–what you and I might call pissed-off-ness or stubbornness.) Her school encourages parents to let kids pick their own clothes, which can result in some interesting combinations.

I’m looking at a printed picture of Maggie posing as “Elf on Vacation,” as one of her teachers labeled her look. Imagine this on a slender 3-year-old whose hair was slow to grow and looks like very blond mullet (a link): a pair of red tights with white horizontal stripes from the thigh to the ankle that end in a thicker green stripe edged with red-and-white-polka-dot ruffles. On top she wears a short sleeved t-shirt tie-died in bright primary colors. She hold an orange tote bag in one hand and added a pair of too-small pink sunglasses to complete the outfit. She posed with her left hand propped on a wall and her left foot nonchalantly crossed over in front of the right one. She looks COOL.

I love her spirit and how she knows what she wants. I tell her mother that her independence and spunk will be good things eventually. Right now their mornings can be a bit intense, with strong feelings on both sides. I admire her mother for letting her go to school as she wants, even if she is wearing a sleeveless dress and the temperature won’t be above 40. She adds a sweater to her school bag and off they go.

What would you wear if you knew no one would criticize or laugh at you?

Does your outside match your inside?

We play many roles and wear many masks. A friend gave me an excerpt titled “Please Hear What I’m Not Saying” from a book called Healing the Child Within by Charles Whitfield, PhD. ( a link) Here’s some of it:

Don’t be fooled by  me. Don’t be fooled by the face I wear. For I wear a mask, a thousand masks, masks that I’m afraid to take off, and none of them is me. Pretending is an art that’s second nature to me, but don’t be fooled…

I give you the impression that I’m secure, that all is sunny and unruffled with me, within as well as without, that confidence is my name and coolness is my game, that the water’s calm and I’m in command, and that I need no one. But don’t believe me…

Beneath my mask lie confusion and fear and aloneness…

I panic at the thought of my weakness and fear being exposed….

I’m afraid you’ll think less of me, that you’ll laugh, and your laugh would kill me…

I don’t like to hide…I want to be genuine and spontaneous and me…

Each time you’re kind and gentle and encouraging, each time you try to understand because you really care, my heart begins to grow wings, very small wings, very feeble wings, but wings!

Who am I, you may wonder? I am someone you know very well. For I am every man you meet and I am every woman you meet.

I’m sad that no one encouraged me to be more like Maggie as Elf on Vacation. I don’t want to wear wear red tights with white horizontal stripes around my thighs (no!!), but I’d like to be more outrageous than a black t-shirt and jeans sometimes.

I take off my mask more willingly when I remember that I am a Child of God. That means I’m okay. I’m good enough. God loves us because of our quirks, not in spite of them. We are made in God’s image. What amazing quirks God must have!

Will You Still Love Me When I’m 64?

I had a birthday this week. I’m 64. Every time I say or think 64, that Beatles song cranks up in my head. I wonder if that’ll happen for the whole year.

When my dad was 64, he lived in a nursing home. He was an alcoholic and an insulin-dependent diabetic who fell, broke his hip and went through DT’s in the hospital which caused wildly unstable blood sugar. So instead of surgery, he spent 6 weeks in traction in the hospital. He had a stroke  while in traction and never went back home. He spent the next 7 years in a wheelchair in nursing homes, slowly deteriorating mentally until there were no shreds left of the dynamic salesman he had been. He was 69 when he died after another srroke.

When my mother was 64, she lived alone, visited my dad every day and barely ate. I think she was anorexic most of  my life. (Thank you, Jackie Kennedy.) She fell while having a stoke, broke a hip and ended up in the same nursing home as my father. She was there, using a wheelchair, for 3 years. He died first.  She eventually stopped eating completely and died a few months after dad at barely 70.

I had pneumonia a few weeks ago. I complained to one of my daughters that I had no appetite and no energy. She told me I had to eat so I didn’t end up a frail old lady like Grandma.

I want to make a sign to hang in my office–the word FRAIL in big black letters circled in red with a diagonal line through the word FRAIL.

I stopped drinking years ago because I didn’t want to turn into my dad. He was an unhappy man who emotionally abused my mother. I’m not like that.

Right before I got sick, I made an appointment with a trainer to begin to recapture some of the strength I’ve lost during the last 2 1/2 years of one surgery after another. I am embarrassed by my lack of fitness, no matter how many times I tell myself I’ve done the best I could.

I’ve read Brene Brown books about shame and resilience. I’m still ashamed. (If you haven’t read her, you might try one from the library. Or listen to her TED talk. You won’t be sorry.)

I hate the idea of being seen as weak or incompetent. I know I can be emotionally strong and resilient. I will try to tap into that strength to have the will to patiently and kindly build my physical strength. I wish I thought it would be fun. I do think it is necessary. I don’t want to be frail like my mom.

A friend shared this poem with me recently. It’s by Jan Richardson from a book called Circle of Grace.

Blessing of the Body

This blessing takes

one look at you

and all it can say is

holy.

Holy hands.

Holy face.

Holy feet.

Holy everything

in between

 

Holy even in pain.

Holy even when weary.

In brokenness, holy.

In shame, holy still.

Holy in delight.

Holy in distress.

Holy when being born.

Holy when we lay it down

at the hour of our death.

 

So, friend,

open your eyes

(holy eyes).

For one moment

see what this blessing sees,

this blessing that knows

how you have been formed

and knit together

in wonder and

in love.

 

Welcome this blessing

that folds its hands

in prayer

when it meets you;

receive this blessing

that wants to kneel

in reverence

before you—

you who are

temple,

sanctuary,

home for God

in this world.

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.

 

 

 

 

 

 

 

 

 

Then and Now?

THEN

I chose not to go back to work as a special ed teacher after my first daughter was born in November, 1977.

At the height of the women’s lib movement, that choice felt sort of radical. Also, old-fashioned and embarrassing. No young woman (I was 25) wanted to turn into her mother.

I was breastfeeding and co-sleeping. A hippie mom, my kids say now. A good and trusted friend offered to keep my baby (for pay) while I worked. My husband was running a delivery route for Dolley Madison cakes (remember Zingers?), so we were far from rich.

In the end, we made the right choice for us, with the understanding we could change our minds if necessary. We didn’t.

My daughters went to school with and were friends with kids who were the first generation to grow up in daycare. I remember thinking, “It will be interesting to watch these kids grow up.”

NOW

This summer an article appeared in our local newspaper titled, “Need a Hug? It’ll Cost You” about a young woman who opened a busness called NC Cuddles (nccuddles.com). She offers platonic cuddling services–

Hugs, Cuddles, Snuggles and Handholding. We want you to feel loved, accepted, and that you matter to someone without feeling guilty, obligated or ashamed. (quote from their website)

The frequently asked questions section describes services for children–

We offer fully clothed, mothering cuddle sessions. We will hold, nurture, work with your child or children to give the physical contact that they need to become well rounded, happy adults. We will gladly work with children with disabilities to include autism. If you are not a touchy, feely, parent but want your child to feel that warmth, we will gladly love, cuddle, snuggle and hold them till their hearts content! (quote from website)

A connection between then and now? Maybe.

My knee-jerk reaction to NC Cuddles was “You’ve got to be kidding.” Then compassion kicked in. I thought about how appealing this might be to a lonely man or woman.

The walls around my physical space are too high to consider a stranger hugging me or even holding my hands. A woman I know says some of us were raised by and turned into “The Frozen People.” I learned to hug non-family people in my 30’s in 12-step rooms.

The kid services at NC Cuddles feel especially icky to me. We worked so hard to teach our kids about not letting strangers touch them. We talked about good touch and bad touch and the uh-oh feeling in your tummy that lets you know something is wrong. How do you explain to kids that these strangers are ok, but others are not?

New on the NC Cuddles website–

Sadly, NCCUDDLES, LLC will be closed indefinitely. Effective 10-14-15

It is unfortunate and we recommend that if you have family that need someone to visit with them, please consider http://www.visitingangels.com

If you are single, alone, or lonely seek out others!

There are local events placed on meetup.com regularly.

I guess I wasn’t the only one to get the uh-oh feeling.

Give Up or Surrender?

I just about ran out of pluck.

And gumption.

And grit.

I’ve had 6 surgeries in the last year and a half, some bigger than others, but all required some rest and recovery time.  My muscles atrophied from all the sitting.  It’s harder for me to move around easily. Then I took a trip and came home worn out and sick with bronchitis.

After a long day of consciously feeling the fear of not getting better and staying weak and fragile, I realized I had a choice. I could give up or I could surrender to reality and begin the work to get better. Giving up looked easier.

Giving up means admitting defeat. It’s saying, “I have lost, there’s no sense in trying anymore.” Surrender means stopping the fight against forces you cannot control. Surrender allows you to reserve your energy for later. It’s the process of letting go. It does not mean giving up. (Teresa Bruni)

I surrendered. I asked–well, begged–God to help me find my pluck and gumption and grit again.

The difference between surrender and giving up is the difference between suffering (giving up) and being at peace (surrender). It is the difference between being lost and finding your way.  (Tim Custis)

I remembered what I hear in 12-step meetings:  Do the next right thing. Keep putting one foot in front of the other.

And from Anne Lamott:  Right foot, left foot, right foot, breathe.

Giving up is resistance to what is. Surrender is acceptance of what is. Giving up says “No” to life (you curl up in a ball on the bed). Surrender says “Yes” to life (you hold your arms wide open ready to receive). Giving up moves you away from God. Surrender moves you closer to God.  (Tim Custis)

I exercise in the pool again. I ride the exercise bike in the basement. I lead with my weaker leg when I go up the stairs from the basement. I bought some new shoes (Hey, girl’s gotta do what a girl’s gotta do) that work with my new orthotics so I can walk outside.

I’m not angry at God anymore. I had to feel the anger and tell God I was angry before I could let go of it.

There is no hope in giving up. It’s a dark, miserable place to be.

God and I are buddies again.

I have hope again.

And pluck.

And gumption.

And grit.

Thank God.

And I Have Good Coverage

I’m not the first.

I won’t be the last.

I’m going to vent about the medical insurance situation in this country.

I have good coverage–AARP Medicare Complete issued through United Health Care.

Yesterday I spent 1 hour and 48 minutes with my cell phone connected to my medical insurance customer service number.  A lot of that time was spent on hold. My battery went down from 72% to 33%.

I ended up as frustrated at the end as I was after the initial 20 minutes on hold before I talked to a live person.  I eventually yelled at that live person.  I never do that. I’m not proud of myself.

I’m not going to try to explain to you what the issue was.  I could, but I’d just relive the anger from yesterday and you don’t really care anyway.  I wouldn’t if you were telling me the story.

Here’s my take on this:

1.  Customer service people are doing the best they can with the training they have.  I get that. But they are not medically trained.  They are trained to follow the directions on a computer screen.  They need pieces of information to fill in the blanks on their screens.  Many of us don’t have short answers that fit in the blanks on their screens.

2.  So they keep asking the same questions and we keep giving them the same answers that don’t fit.  Then we get put on hold “for a few minutes.” I asked my live person to please come back to me. He said he would.  He did.

3.  Then came another set of questions.  My answers still didn’t really fit in the blanks.  They were about the same as my original answers.  Then I went on hold again.

4.  Next, I got “conferenced-in” with another live person.  Three of us were on the line together.  More questions.  More time on hold.

5.  The second live person came back and told me they would be contacting the doctor’s office and would approve or disapprove within 72 hours.

6.  Approval or disapproval wouldn’t answer my original question.  For that, we wait for the claim to be filed and for the insurance to pay their part.  Then we can appeal the part we’re required to pay.  That should be easy to resolve.   And why couldn’t they just tell me that at the beginning?

I am a liberal Democrat.  I am glad people can get insurance now, thanks to Obamacare.

But the same screwball insurance companies are making decisions about my medical care, not my highly-qualified doctors.

AND THIS IS NOT WORKING!!

Okay, thanks.  I needed to get that out.

 

 

 

 

 

 

 

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.”)