I Love Being Amma

I last posted original writing on this blog a year and a half ago. In that year and a half I had one medical issue after another–surgeries, infection, medication side effects, changes in my arthritis treatment, depression, and midway through all of it we downsized from our big house to a 3 bedroom apartment. Now I have days with little pain, no stairs and plenty of energy.

I am grateful.

And ready to focus on the world around me, not on myself.

My grandchildren, Adaline, Maggie, and Atticus have kept me going through all this time. They are 8, 6, and 6 (cousins, not twins). They’re all in public school  and thriving.

Let me tell you a story that shows why they could make me laugh (SUCH good medicine) when nothing much could.

One day last year, they were all here at our place with Adaline and Atticus’s mom. Atticus was in the living room playing with these discs you build stuff with (Brain Flakes) and the girls asked if they could go back in the guest room and play on the computer. The retired man I live with got them going and we adults were able to sit and converse for a while.

The girls were giggling–how nice they were having fun together! They called Atticus back to see something. Even nicer, right? They were all laughing in a way that caught my daughter’s and my attention. “Maybe we should check on them, she said.” She went back and called to us.

We all 6 huddled around the computer. I started giggling along with the kids. Adaline and Atticus’s mom tried not to. Grandpa Mike was kind of horrified but laughing at the same time.

Adaline, who was 7 and in 1st grade was learning to spell phonetically. So she googled “poop,” a favorite topic of conversation for all 3 kids. They found “The Poopy Song” on You Tube. (click The Poopy Song.)

I guess I have a very immature sense of humor. I thought it was hilarious. My daughter tried to get them to stop it. I wanted to hear the whole thing. 2 more of their parents came in shortly after. Maggie’s dad is much more proper than the rest rest of us. We all took them back to see it.

Now 8 of us huddled around the computer and watched it. Maggie’s mom didn’t know whether to laugh or cry, I think, and kept checking for Maggie’s dad’s reaction. I’m not sure he could breathe. He really was appalled, but realized he was outnumbered and left the room.

I LOVE being a grandparent.

(Update 7-27-2018: At our house today they found another giggle-inducing song about farting. Let One Go, based on the Frozen song “Let It Go.” They could be finding worse.)

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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

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.

 

 

 

 

 

 

 

 

 

Finding Hope Under the Blanket

The retired man I live with walked into the den recently and said, “Ten years ago you had cancer. Now you have 3 grandchildren. It’s all going to be okay.”

I was in a dark place that day, a place I called depression. A few weeks later, my therapist called it grief.

In the last 2 years, my brother (the last of my family of origin) died, and I had 6 surgeries, most complicated by very slow healing due to immune-suppressant drugs for rheumatoid arthritis. I had reason to be in a dark place. But I didn’t label it grief until my therapist did.

There’s a difference, for me, between depression and grief. Depression feels endless and hopeless. Grief, on the other hand, is a recognition of loss, a process that I can move through. There is hope in that.

My friend, Kim, a former Hospice grief counselor, said that grief and depression can feel the same. For me, both involve emotional and physical fatigue that makes any kind of movement challenging. Inertia settles over me like a blanket and I become comfortable there.

I don’t drink anymore and depression kills my appetite so I don’t stress-eat. I use reading as my numbing-agent, my drug of choice.  I can tune out any feelings or circumstances if I have something to read. Inertia looks okay if I’m reading, right?

My family valued good grades and achievement and emotional control. I need to feel competent. So, in my head, my physical limitations become defects, which makes me defective, not competent. And so I am grieving the loss of my competent self.

My therapist helped me see that maybe I’m wrong. Maybe I don’t tell myself the truth.

I’ve been dealt a hand of cards that includes physical limitations, but I can find competence within those limitations. I tell myself I have strengths and talents that are still available to me, no matter how well I walk or balance on one foot. Sometimes I believe that.

I’m not sure just when the window opened on my dark place and started letting some light in. I became willing to change, to move out of the comfortable, dark place under that warm blanket of inertia into a new place of acceptance and hope. I became willing to do the hard work of growth.

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

It’s rained here for a week and a half with a couple more days of showers to come. The temperature has dropped into the 50’s. A week ago, I had to stop one of my arthritis medications because of possible side effects. Between the no-medication and the weather, my whole body feels stiff and achy.

But I’m okay in that. A bit whiny at times, but not rooted in a chair with a book. In a bit, I’ll go to a recovery group at Higher Ground, the drop-in house for people who are HIV positive. This afternoon I’ll go sit with a Hospice patient for a couple of hours to give the caregiver a break. Tomorrow morning I’ll go to an AA meeting and then out to lunch with a woman I sponsor.

I’m grateful today for the energy to push through the remnants of grief and the physical challenges of the day. It helps to focus on the needs of others.

I look for balance between denial and being overwhelmed. Denial sends me back to my chair with a book. Overwhelmed takes all my energy and I care about nothing. Balance says, “Okay, today I hurt, but I can go sit in a chair and listen to others just as easily as I can take root in my lonely chair at home”.

Balance requires mindfulness, acceptance, gratitude and hard work paired with surrender to what is.

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

Snapshot

I forget sometimes that other people read what I write on this blog. Or maybe I underestimate the impact of my words.

My cousin lives in Minneapolis. We’re not particularly close, although we care about each other. We talk a few times a year. I talk to his mother, my aunt, more often and she keeps us up-to-date on each other.

He texted my husband recently to find out if I was okay. He and my aunt saw my last blog post about being depressed and isolated (see it here) and were worried about me.

I called him back the next day and assured him I was okay, though still somewhat depressed. I think I sounded kind of perky. I tried to. Was that dishonest? I don’t think so. I am okay and also depressed.

Or maybe my therapist is right–I’m grieving. My brother died July 12, 2013. Since he died two years ago, I’ve had one medical issue after another, barely healing from one surgery before needing the next. I told my therapist it feels like emotional PTSD. My friend, Kim, a grief counselor, tells me the symptoms of grief are the same as depression symptoms. Oh. How do I know the difference? Does it matter?

My grief is bigger than my brother dying. I miss having a body that I don’t have to think about. I miss being able to chase after my grandchildren. Adaline asked me to jump with her the other day. I told her I couldn’t really jump. “Oh, you can’t do that anymore, Amma?” she said. I wanted to cry. I was angry because I had to add jumping to my list of things I can’t do. I felt old.

I started this blog when I had one grandchild, Adaline. I wanted her to know me as a person with feelings and fears and hopes and problems. Now I have 2 more grandchildren–Maggie and Atticus. And I still write so they will have a way to know me when I’m not around anymore. I’m getting to know me better, too.

I’m sorry that I worried my aunt and my cousin. I write these posts as the spirit moves me and they reflect the moment that I’m in. Two hours after I finish, I might be far beyond those particular concerns and feelings. But my written words stay in that moment.

Each blog post is just a snapshot, a captured moment in my life.

I think I should write more on days I feel good!

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.”)

From My Slightly ADD Brain

1.  My new antidepressant and my not-quite-as-new drug for rheumatoid arthritis are working together to get me back to “ME.”  I feel like Robin again and I’m very grateful.  A friend told me yesterday she was glad I was back.  I said, “Me, too.”  I told my therapist I thought I might be on a “pink cloud” and she asked if I meant euphoria.  I said, “Yes!” and that I was afraid it wouldn’t last.  She said she thought maybe I just felt good and I said, “Oh, you mean I’ve reached a level like normal?” She said, “Yes” and we both laughed really hard.  I look back now at how I felt in December and January and recognize I have an illness that, untreated, depresses my spirit and takes away all joy.  I choose today to do all I can not to live that way.  I choose to step fully into each unique day..

2.  My current book is “This Is The Story of A Happy Marriage” by Ann Patchett.  It’s a collection of essays by a novelist.  She writes some about writing and a lot about her life.  I love to read how she puts words together.  In the essay that gave the book its title, she describes the deterioration of one of her marriages.  A friend asked her, “Does your husband make you a better person?  Are you smarter, kinder, more generous, more compassionate, a better writer?  Does he make you better?”

3.  As I get some older–I’m 62 today–I have less physical and emotional energy.  I treasure my energy on any given day.  I had none when my depression was at its worst.  It varies now from day to day.   I think I will use the questions below when I need to choose how to use my time and energy:

Will _____ make you a better person?  Will you be smarter, kinder, more generous, more compassionate, a better writer?  Will ______ make you better?

4.  A week ago we had an ice storm.  Actually, we had a sleet-snow-freezing rain storm that took away the power of 143,000 in our county alone.  The retired man I live with and I lost our electricity for 34 hours, but we have gas logs and a small generator to power tv and lights and the microwave.  Our daughter, son-in-law and their chatty 4-year-old and their constantly moving almost-two year old endured 4 days.  My daughter sounded worse each day in the very brief conversations we had because she had to turn on the car to charge the phone.  She got excited about doing laundry when it finally came back on.

5.  Afterward, we talked about those days without tv, internet, iPad and readily available phone.  Besides the quiet, she noticed her kids playing together more.  She read.  And they all cuddled a lot because the house was colder inside than it was outside some of those days.  Maybe we should have national No Electricity Weekend each spring and fall, with a guarantee of a high temperature between 63 and 78 and no rain so we can go outside.  I bet we’d all read more, play together more, and cuddle more.

6.  I googled “how to be a friend” recently because I’ve been thinking about how I would like to be a better friend to some people I really like, like Kim and Lisa.  My google choices included: how to be friends with a guy, with a girl, with a friend who is sick, with a friend who is depressed and how to be a friend with benefits.  (Google that yourself if you’re not sure what that means, Aunt Nadine.)  I looked at the friends with benefits one, of course.  It was a slide show format that wouldn’t go past #4 (of 10) for me.  I’m not sure what that meant.  The 1st 5 links for “how to be a friend” were from wikihow.com, amazon, selfstairway.com (?), tinybuddha.com, and realsimple.com.  I clicked on tinybuddha.com (here’s the link) and got a list of 25 suggestions that were actually quite good, though not really anything I didn’t already know.

7.  I noticed a behavior pattern of mine while on my “how to be a friend” internet journey.  I’m quite good at finding sources of information about how and why to do stuff (meditate, exercise, pray, write, be a friend/parent/grandparent, eat more fruits and vegetables, not eat sugar) and I enjoy learning, but there is a disconnect in my brain between learning and doing.

8.  I’m going to read about motivation and procrastination.  I’ll get back to you.

A Buddhist Nun Told Me To Chill

Pain in my feet might help.

I had foot surgery a little over a week ago.  General anesthesia, both feet, outpatient surgery.  The hope was to repair or modify some of the damage from 26 years of rheumatoid arthritis so I can walk better.

The challenge is not walking on them now.  Since the first couple of days I’ve had no pain so I was up and moving around.  I saw drainage on one of the bandages four days after surgery, went to see the doctor and was told to stop walking on my feet so they could heal.  To the bathroom or to get something to eat is okay.  Sitting with feet up on the ottoman is good.  Lying on the couch is better.  For the next week and a half.

I started a 3-year-term on a non-profit’s board of directors this month.  Triad Health Project provides HIV/AIDS services, education and support to those infected and affected by the virus.  I got involved as a volunteer in the mid-90’s.  You know that Bucket List thing?  I always wanted to say, “I’m on a Board of Directors.”

Last month, I missed the social get-to-know-each-other gathering at a wine bar because I had horrible back spasms.  Now this month, the first for-real meeting, I have healing feet so I can’t go again.

With all my free time, I am reading Living Beautifully with Uncertainty and Change by Pema Chodron, an American Buddhist nun.  This morning I read about how we get caught up in 8 worldly concerns:  pleasure and pain, gain and loss, fame and disgrace, praise and blame.  While I was reading, the other track in my brain was struggling with whether/how to get to the 5:30 THP board meeting.  (It gets busy inside my head.)

I am used to being the good kid.  I generally follow through on commitments and am pleasant and helpful to have around.  My reputation matters to me.  A lot.

I do not like that my disease may shape others’ first impression of me.  I want to be seen as competent.  Not needy, not vulnerable, not disabled.

Pema Chodron says, “If we don’t act on our craving for pleasure or our fear of pain, we’re left in the wide-open, unpredictable middle.  The instruction is to rest in that vulnerable place, to rest in that in-between state, to not hunker down and stay fixed in our belief systems but to take a fresh look with a wider perspective.  The truth is we’re always in some kind of in-between state, always in process…When we’re present with the dynamic quality of our lives, we’re also present with impermanence, uncertainty and change.”

I think that means I’m not in control.

She describes three commitments or vows Buddhists take.  First, the commitment to cause no harm.  Second, the commitment to take care of one another.  Third, the commitment to embrace the world just as it is.

I emailed the THP director and told her I would not be at the meeting.  (Do no harm to myself.)  I want to be able to help with the big fundraiser in early Dec. If I let my feet heal, I’ll help more. (Take care of one another.)  As my brother used to say, “It is what it is.”  (Embrace the world just as it is.)

I will be present to the discomfort that washes over me every time I imagine my empty chair at the THP conference table.

Sometimes doing the right thing doesn’t feel good.