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)

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.

The Retired Man I Live With

He retired 3 years ago.  I knew it would be an adjustment for both of us.

We worked together for the first year or so of his business.  I learned he has ADD.  He learned I don’t like to be ordered around.  We are both oldest children and both like to be in charge.  It did not go well.

The retired man I live with is always “doing.” His retirement hobby is puttering.  He loads and unloads the dishwasher, vacuums up the clumps of dog hair Sydney drops this time of year, and often fixes dinner.  Our yard is beautiful.  He painted the upstairs bathroom and put in new stick-on tile flooring.  He does his own laundry.

He takes care of me on days when my rheumatoid arthritis acts up or zaps my energy.  He has patience I never expected.  I feel loved.

His busy energy permeates my house and makes me crazy.

I am an introvert who requires solitude and quiet.  I never had long-term sadness about the “empty nest.”  They didn’t go far and I enjoyed the empty house while Mike worked.

I miss my empty house.  I miss my solitude and quiet.

I am spoiled rotten by the retired man I live with and I complain that he is always around.

Okay.  I know.  The only thing I have control over is myself.  And I’m better than I used to be at having the wisdom to know what I can change and what I cannot.

I’ve known the retired man I live with for 40 (!!) years.  He is not going to change.

I’ve never liked those little iPod ear-bud things.  But I think I’ll try being like a teenager and play some mellow music I like and tune out the active energy seeping up the stairs to my office.  I might even stuff a towel in the space between the door bottom and the floor, like you’re supposed to do if there’s a fire.

Got any other suggestions?

Bite Me

I bit my fingernails for many years.  We moved every couple of years (4 elementary schools, 1 junior high, 2 high schools).  I was an introvert and a driven over-achiever.  I finally quit in my early 20′s because I wanted a picture of our new wedding rings the day we got married.  Of course, by then I was smoking cigarettes, so that helped.

I’ve never been comfortable with long fingernails.  They don’t feel natural.  And I don’t really see the point of fingernail polish.  It just gets chipped on me.

Several years ago, I worked with a pottery teacher.  I messed up a pot once with my fingernails.  After that I cut them really short.  I still do.  And I don’t polish them, except for my daughters’ weddings.

My toenails are another story.  Because of the arthritis in my hands, I used to cut my toenails so badly that twice I had ingrown toenails.  The podiatrist told me I should get pedicures.  I asked if insurance would pay for it.  It doesn’t.  It should–it’s cheaper than what the podiatrist had to do.  So now I have beautiful toenails with polish (red for the holidays).  Doctor’s orders.

The human body has a few flaws, I think.  Knees are a weak point, easily worn out or injured.  Hair turning gray seems pointless.  Joints wearing out even if you eat right and exercise is kind of unfair.  But fingernails and toenails?  Why do they have to keep growing?

I have a list of questions in my head that I’m saving to ask God when I die.  Why did my sister die at 18?  What about congenital heart defects?  Mental illness?  Hitler?  War? Cancer? AIDS?  Also, I’m compiling a list of body parts that need to evolve some more (see above).

I say that heaven will be knowing “Why?”.

A friend says maybe heaven will be not needing to know.

Skin of an Elephant

We are creatures who live in a single skin throughout our lives.  Our own consciousness is embodied in a skin that grows wrinkly over time.  Our aging is obvious, no matter how much we try to resist it.

Our nearest cousins in terms of mammalian skin are elephants.

Can we be at home in our own skins, our own bodies, adjusting to the changes the various seasons of life bring to us?                                      Dwight Judy

Elephant skin?  Really??

Remember playing with the loose skin on your grandmother’s hand?  Or her floppy, un-toned triceps?

I have the hand skin thing.  I say it’s due to medication but it’s probably age-related.  And the triceps?  My trainer keeps trying different ways to work on them.

I can’t hold onto hand weights because my arthritis has damaged my wrists and fingers.  She talked me into buying black suede weight-lifting gloves.  Do they go with grey hair and black crop pants?

I sat at the bank drive-through today watching a young woman’s hand go back and forth.  It was all smooth and tan.  I looked at my own hands.

I remembered.

How many cloth diapers did they dunk?  How many sticky faces and hands and dirty feet did they bathe? How many tears did they wipe?

My hands don’t care what they look like.  They just try to do what I ask.  And I’m grateful.

My Trainers

I changed gyms and paid for one-on-one hours with a trainer.  I got Jodi.  She’s 25 (sigh) and kind.  She challenges me, but she listens when I describe how my body works.

I’ve written before about having rheumatoid arthritis (click on Rheumatoid Arthritis in the cloud of words down below on the right).  Life can be a challenge some days.

So can an 18-month-old granddaughter.  Someone asked me yesterday if she’s walking.  I said, “No, she runs.”  She’s not chubby anymore, but she is solid.  And sometimes squirmy.

So Jodi helps me strengthen my upper body and core.  And we do cardio stuff.  Ever try an elliptical machine?  I am awed by people who do it for a long time.  An hour?? My goal is to move beyond 5 minutes.

Humility and a sense of humor go to the gym with me.  (There’s a fine line between humor and self-denigration.)  I am grateful for all my body can do.  Jodi pushes me past stopping just because I want to.

I led a writing group at a drop-in center for people who are HIV-positive yesterday.  The prompt was a quote from an article by Nancy Copeland-Payton in Presence (the journal of Spiritual Directors International.)

It’s a roller coaster.  I didn’t buy a ticket, never wanted a ride…the illness will keep recurring and I will die of it.

Who am I…?  I’m no longer the person who used to be in control, who had energy to take care of tasks and other people.  Rather, I’m the one who needs care.  I’m the one who is vulnerable.  This is not an identity I choose.  Buried inside are losses that need to be cried out.  This is a long mourning process.

I finally let go of my control and let myself be vulnerable and cared for by others.  When I learn to receive their care with profound gratitude, I receive the greatest gift.  I realize how much I am loved.  It’s extraordinary.  This love lets me be even more vulnerable.

While we wrote I played a Kenny G CD (they like soft jazz).  As we finished, we listened to the music and rested.

I wrote a whiny page about not liking roller coasters and not wanting to be vulnerable.  They wrote and shared about God’s love and how their disease saved them from drugs and a wasted life and changed them for the better.  I didn’t want to share mine.

The last song we listened to (not planned by me) was Louis Armstrong singing “It’s A Wonderful Life”.  They sang along and smiled when it ended.

Amazing grace, again.

No, You Can’t!

Remember what 15 felt like?

“Can I...?”  “No, you can’t.”

“I want to…”  “No you can’t.”

“May I please…?”  “No.”

“Why not??”

I feel like that.  It’s my body saying “No, you can’t.”  And inside I’m screaming “Why not??”.

My rheumatoid arthritis flared up all week.  It was mid-90′s hot.  And humid.  I wanted to drive 4 hours to a weekend retreat for people who are HIV-positive from all over the southeast.  Only the dining room is air-conditioned at the rustic retreat center and the paths between buildings are uneven and unpaved.

“I can’t,” I told the director of the day center where I volunteer.  “I can do hot or pain, but not both.”

I’ve read several books lately about our bodies and our spirituality.  I see layers of metaphors in my decision to take care of myself.

I allowed myself to be sad for a day or so.  Limitations frustrate me.  And I realize some of the changes in my body can’t be fixed or reversed.  My granddaughter, at 15 months, can almost outrun me.  More metaphors.

I’m not what I thought I’d be at this point in my life.  (Is anyone?)  So I pray for willingness and acceptance.  And the continuing ability to laugh!