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.

 

 

 

 

 

 

 

 

 

Published in: on November 17, 2015 at 11:42 am  Comments (6)  
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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?”

 

 

 

From Cracks In the Writer’s Block Wall

1.  I don’t like to go inside to the prescription counter at the drugstore for my refills because that’s where all the sick people congregate. I’m not a germ-a-phobe, but I do try to be sensible.  Today, though, the drive-thru closed for remodeling. Only two people stood ahead of me in line and neither one coughed. Thank you, God. The woman at the head of the line had a problem so I had time to look at all the magazine covers under the counter.  Cosmopolitan screamed “BEST SEX EVER!!” in gigantic letters right next to Weight Watchers and Cooking Light.  I used to read Cosmopolitan before I had kids.  I remember not wanting my mother to see it, but today’s cover goes way beyond trashy to inappropriate. I’m quite sure I’m not in their demographic anymore.

2.  As I drove out of the drugstore parking lot, I looked at the Hardees next door. A big sign promoted a “Fried Bologna and Velveeta Biscuit.” I had to read it twice to be sure I saw it right.  Yes, my friends, I do live in the South.  True confession–I was tempted to try one. Bologna and cheese sandwich (not on white bread anymore) with potato chips on the side is one of my comfort foods. What? Don’t you have a secret junky comfort food?

3.  The retired man I live with felt crummy yesterday and again this morning.  Nothing serious, although any amount of illness is serious in his world.  He can’t usually just sit around and do nothing so by this morning he needed a project.  We are members of the Apple cult–laptops, phones, iPod, iPad and we use AppleTV for streaming Netflix, etc.  He decided he wanted all the music in his iTunes account to be in the AppleTV thing so he could play music through the television.  (Why?) He did it, after he finally got the right password for iTunes. The Cloud is a powerful and spooky mystery.

4.  A while back, my family discussed inner age vs chronological age. At the time we ranged in age from about 30 to late 50’s. The young ones thought of themselves as close to their chronological age. I was at the other end of the age range and thought of myself as about 35. These days, at 62, I feel more like mid-40’s inside. I liked my 40’s—some maturity (and sobriety) and wisdom but still plenty of energy. I developed spunk and comfort with being myself. I still have those characteristics inside, including a somewhat warped sense of humor, but my body has slowed down. I know what I like and need and I appreciate the good things in my life. Time with my grandchildren makes anything negative disappear. Their delight at all the world offers them feeds my soul. And when they get grumpy or poopy, I can give them back.

5.  Because of damage from years of rheumatoid arthritis,  I periodically search for comfortable, attractive (or at least not ugly) shoes.  I came across a blog recently called Barking Dog Shoes (barkingdogshoes.com). The blogger, Kirsten Borrink, has reviewed over 1000 pairs of shoes since 2007! Lately I’ve been looking for a walking shoe so I can walk outside.  I’ve tried more than a few, but nothing just right yet.  (Hint: if you order shoes online, you can wear them inside a bit and still return them for a full refund.  Try to stay on rugs or carpet.) On the desk beside me is an ad I tore out of the Arthritis Today magazine for Gravity Defier.  G-Defy, they call it.  “Science in every pair!” “Feel weightless!” Here’s how I know I’m an optimist–I’ll probably order a pair.  They just might be the ones.  Kind of like trying to find the perfect pair of jeans for a 62-year-old body. Must be out there somewhere, right?

6.  Most of the public schools in our county started today. (Some magnet schools run on other calendars.) Adaline started 4-year-old preschool today, too, at the same place she went last year.  Her mom posted a picture on Facebook. At 4, Adaline knows how to “work it” for the camera.  Cute, but a bit unnerving.  She wore a purple jumper with a big turquoise peace sign on it.  Back when I was wearing peace signs (late 60’s and into the 70’s) I didn’t imagine my grandchild wearing one the 1st day of school! Does that mean 80’s hair is in her future?

7.  I drew from both Cosmo and Arthritis Today for this post.  I think that adds up to groovy grey-haired grandma! (told you I had a warped sense of humor.)

 

Published in: on August 25, 2014 at 5:10 pm  Comments (7)  
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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 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.

P’ease Pick Me Up

  “Amma, p’ease pick me up,” pleads Adaline.

But I must say,

“Can’t do it, my sweet girl.

Do you want to climb up on the couch and we can

eat some blueberries?”

F–k, I say in my head.

God help me.

Give me

hands, my hands that work.

I am Amma,

just as I am.

Kristin needs help.  She doesn’t ask.

Loss.

Love.

Maggie I can still pick up,

now, today.

Oh, please, will someone give me Atticus?

Quit trying?  Never, not ever.

Relaxation and

recuperation, they come later.

Stephanie worries.

She sees me struggle.

Tuesday I will play with them

under the trees outside.

Voices will sing and we will laugh.

Wednesday I will rest and maybe hurt.

X-rays of my hands and wrists and spine

yell at me to be careful.

Zebras at the zoo?  Let’s go!

(This is an alpha-poem (look at the first letter of each line) started during a workshop titled “Writing Through Grief and Loss” led by Ray McGinnis, author of Writing the Sacred)

Published in: on February 5, 2013 at 1:59 pm  Comments (11)  
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Disabled

I asked the Social Security Administration of the US government to label me “disabled.”  The application process left me drained and depressed.

I listed my “Physical and Mental Conditions,” 6 of them.  I listed my “Doctors and Other Healthcare Professionals,” 5 of them.  I listed my “Medicines'”, 7 prescriptions.

The paralegal at the attorney’s office helped me with the last section, “Remarks.”  She asked questions, I talked about what all I can’t do, she suggested more specific words and she typed it into the application.  Here is what she wrote:

I can only walk 5-10 minutes due to joint deformities due to my Rheumatoid Arthritis.  I do not have an even, steady gait and use a cane at times as my doctor recommended.  This has caused me to have intermittent back aches.  I cannot stand long for the same reason.  I drop things a lot due to the weakness and deformities in my hands and fingers and cannot lift more than 10 pounds and even then I have to use both hands.  I have loss of dexterity and some of the joints are frozen in my hands.  I can’t do cross stitch anymore, either.  I cook much less now as I can’t safely lift heavy pots and pans nor stand very long.  I have trouble changing the sheets on the bed and I can’t clean my bathroom.  Even though I had non-Hodgkins lymphoma in the past, I no longer have any limitations or symptoms for that.  I started having Vertigo a few weeks ago and my heads spins when it hits.  In my latest blood work I was anemic.  I am fatigued easily now.

Wouldn’t you be depressed?  I was upset for a couple of days.  Then I listed things I CAN do.

I am resilient and strong and creatively adaptable.

I thank my husband for helping me when I ask and never complaining.  (Although he said one time if I have another knee replacement he might not be my primary caregiver.  The first one was rough.)  I thank him for not offering to help all the time.  He sits back and watches me struggle with tasks of daily living.  He says okay when I want to travel by myself (even the time after the cancer diagnosis when I told him I wanted to go to Paris by myself, which I did in 2006.)  I know he worries, but he doesn’t burden me with those thoughts.

I am grateful for my daughters who cheer me on, give me shit when that’s appropriate and worry together behind my back. I hope I model fierce, not stupid, independence.

I am grateful for my grandchildren,  my joy and reasons to take care of myself.  They know me only as I am today. I can’t lift them up by myself, though I can hold a sleeping baby for hours and cuddle on the couch really well.  I can’t change diapers anymore (hee hee) and everyone is okay with that.

I thank God for my family, friends and therapist who keep me functional and medical science for the medications and doctors and nurses who ease my discomfort.

I recognize that the people I know who are HIV positive teach me about acceptance, letting go, the power of faith, and living with pain in all its forms.

I am who I am because of my challenges, my limitations, and the lessons to be learned from them.

The letter from the Social Security Administration came last week.  “You are entitled to monthly disability benefits.  We found that you became disabled under our rules on March 31, 2009.”  (I wasn’t disabled on March 29?)

I shouted to my husband, “I qualified for disability!”  “Congratulations,” he said and we high-fived.

Is that something to celebrate?

I choose, most of the time, to celebrate and be proud of what I can do today.  I certainly get frustrated and upset at times.  I say bad words and even let myself cry a bit.  That’s just okay, as my friend Jan says.

We all have choices.  I choose to keep going, laugh as much as possible, and try to ask for help when it’s wise to do so.

The US Government says I am disabled.  I say, not really.  Who ya gonna believe?

Oh Say Can You See–From Below?

Crowds are hard for me.  I have a mild claustrophobia–I need to know I can get out, get to an exit.  I’m short and can’t stand on my tiptoes anymore, so I can’t ever see much beyond my body space.

When we went to Washington, DC, in January, 1993, for Bill Clinton’s Pre-Inauguration, I upset my family when I refused to push up into the crowd to get closer to the concert and speeches.  I told them to go ahead and I would wait by the big tree and they could find me afterward.  My daughters, 12 and 14, started walking off.  (Surprise.) My husband called them back, asking me if I was sure I couldn’t go closer.  He told them we all needed to stay together.  The girls glared at me.  We could kind of see everything on one of the big screens.

My friend Sarah asked me to go see Michelle Obama at UNC-Greensboro.  She lives within walking distance (for her not me) of Fleming Gym.  After some discussion of my limitations, (we needed to walk about 5 blocks and then stand for several hours) she offered to push me in a wheelchair.  She offered because she wanted me to go.  I was humbled by her generosity.  I really wanted to go so I swallowed my pride and said yes.

Sarah and I started on our Michelle Obama adventure.  The doors opened at 11:00, we got there at 11:10 (she was to speak at 1:15) and got into the line for disabled people.  They let all of us in first and guided us to a section to the right of the stage.  The other line stretched for blocks in the hot sun. Sarah and I ended up in the front row. She sat in a chair beside my wheelchair.  A railing, 10 feet of floor and a (female!) Secret Service agent separated us from the stage.  All the people outside our “fence” had to stand crowded together and many couldn’t see well.

I felt guilty.  I knew I couldn’t walk 5 blocks and then stand on my own for several hours. But I don’t usually think of myself as disabled so I felt like a cheater.  Until the end.

After her speech, Michelle Obama came down from the stage and started working her way around, shaking hands with the volunteers who had special tickets to be up close.  When people figured out she was headed for our section, they slipped under the little barrier and filled in the small open space in front of the wheelchairs.  Four rows of people slid in front of me.

I felt my mild claustrophobia stirring– I sat in my wheelchair, completely surrounded by standing people.  They stepped over my foot rests (almost falling on me) and rarely even looked down at me or spoke.  A few said “I’m sorry” but they still stood in front of me.  Rude.  I saw the top of Michelle Obama’s hair and her bald Secret Service agent’s head.

Ride in a wheelchair sometime in a public place.  You’ll see our world in a very different way–from below.  You will be invisible to many other people.

I learned curb cuts and level sidewalks and automatic door openers matter.  A lot.

So do compassion and courtesy and genuine concern for others.

Living Beyond the Warranty

Last week I wrote about my ailing computer.  It ran really slow and I was afraid it had early-onset dementia and would lose its memory.  Which contains a lot of my memory.

My computer and I are reunited.  It has a new hard drive.  Its memory is intact.  Now I can’t connect to iTunes. I need to connect to sync my iPhone calendar to my iCal (calendar) on my computer.  (That sounds ridiculous, doesn’t it?)

I see a pattern.  I increasingly rely on my tech-toys to back up my memory.  I’m okay with that. Really, it’s kind of cool.

Now I need a new hard drive for my body.  I celebrated my 60th birthday in March.  And, as a cancer survivor, I am grateful for every day.  However.  My parts are wearing out and beyond the warranty.  I don’t think I have enough time left to replace them one by one.

After 25 years of rheumatoid arthritis, I have artificial joints in my knuckles on one hand and a left knee replacement.  I set off the metal detector the last time I flew.  No one cared about my official card from DePuy describing my titanium knee.  I had to go into the total-body scanner.  On the inside I giggled about the poor guy in some little room who had to look at my body unfiltered by clothes.

I miss being independent.  My damaged hands frustrate me daily.  Now I’m anemic and so I have limited energy each day.  I choose my activities carefully.  I drive myself around town and go most anyplace I want, but I get tired and I feel very vulnerable in parking lots.

I want to replace everything at once.  A new hard drive rejuvenated my computer without losing any memory.  A rejuvenated Robin with intact memories and no loss of hard-won wisdom?  Perfect.

What would I do?

I’d pick up each grandchild with no fear of dropping or hurting them.

I’d swim laps without hanging on the wall to catch my breath.

I’d get on an airplane and fly to NYC or Paris.  Alone.

I’d clean my house all by myself.  (maybe!)

Or I could just accept the body I have and be grateful for medical science and my own determination and resilience.

I could find joy in each day and learn to ask for the help I need when I need it.

And pray.

Computer Down!

My laptop got sick.  I took it to the computer-fixers.  It lived with them for almost a week.  I missed my friend, my buddy.

I know now how much I look at Facebook (embarrassing) and how often I go to Google to look something up.  It’s kind of like forgetting your watch if you always wear a watch–you learn how many times you look at your wrist.

What a marvelous excuse for not writing anything for my blog or my writing group.  I couldn’t write on Mike’s laptop or iPad.  It felt wrong to my hands.  I needed my own computer.

I did read a lot.  The Greensboro News and Record, O Magazine, Time magazine, and a parenting book called Love and Logic.

I always read at least part of any childcare book I might give my daughters.  If I don’t like what it has to say why would I give it to them?

A young friend recommended Love and Logic along with The Happiest Toddler on the Block.  Love and Logic passed my tests.  I’ll let you know about the one with the dopey title.

The retired man I live with bought this laptop for me a few years ago.  Rheumatoid arthritis chewed up the joints in my hands and wrists enough that I can’t lift or hold much weight at all.  I love it.  It’s very thin and light, I can carry it around and it fits in the Vera Bradley backpack purse.  My hands and it know how to work together.

When it started to run slooowly, I took it to IT Worx. On Friday the 13th.

It needed a new hard drive.  We had an Apple Care warranty good until July 17.  The little dent on the side negated the warranty.  No kidding.  (I dropped it.  More than once.)

Now you know why I don’t pick up babies after about 10 pounds.  They dent. They have no warranty.

I’m sure I’d lose my Amma privileges if I dropped one of them.