From the Far Side of a Stroke

I am one of the lucky ones.

I had a stroke on December 14, 2019, (maybe because of Afib that I didn’t know about until 3 days before the stroke when I had cataract surgery).

I was home alone and my phone was in another room.  I fell and ended up on the thick rug under the dining room table and couldn’t get up. My left arm, hand and leg were sort of out of my control, but I could think straight. I skootched on my back to where I remembered my phone was. That took maybe 20 minutes. I’ll explain later why time mattered.

I called the retired man I live with instead of 911 because I didn’t want the EMT’s to break down the door and let the dog out. (Dumb logic. Call 911. Time matters.) He was home in 10 minutes and called 911.

Here is why time matters if someone is having a stroke. There is a drug, TPA, called “the clot buster,” that can break up the clot that is blocking blood flow to the brain. It must be given by IV within 3-4 hours of the beginning of the stroke. The protocol requires a brain CT scan and/or head MRI before it can be given to be sure the stroke is caused by a clot and not a brain bleed.

After a brain CT scan and a head MRI, I was given TPA. Before the drug took effect no one could understand my speech and I couldn’t control my left arm and hand. Within a couple of hours, my speech was normal and my left side was getting better.

I was one of the lucky ones.

After  2 days in Neurology ICU and a week on the Rehab Unit of the hospital, I am pretty much good as before.

A few things I’ve learned:

1. If you are alone, have your phone close enough to touch–in a pocket, in your bra or underwear or in a pouch hung around your neck (someone please design and market these!)
2. If you are alone and  think you are or might be having a stroke, call 911 FIRST, even if you know they’ll break down the locked front door and freak out the dog. THEN call your significant other.
3. Every minute matters if you’re having a stroke. There is a drug called TPA (see link above) that could save your life and/or the function of your brain and body. But you have to get it within 3-4 hours of the start of the stroke. That includes time for the ambulance to come and take you to the hospital, get you into the ER, and get a CT scan of your head and/or get an MRI of your brain. Not all strokes qualify for TPA. These tests help doctors know who is eligible.
4. CALL 911 FIRST. Even if you can’t talk, they’ll figure it out.
5. If you have a stroke, let people know and ask them to pray for you. I did. And I could feel those prayers surrounding me and holding me up. Hard to describe and impossible to explain, but it did help, tremendously. Thank you, friends.
6. Those Life Alert things with the commercial (“I’ve fallen and I can’t get up!”) we all laughed at when we were younger aren’t a joke. Give it some serious consideration. I did, in the hospital. I now have an Apple Watch, thanks to the retired man I live with. I bought Apple Watch for Dummies, but all I can do so far is make a call, answer a call, read a text or email. Most of the time.
7. My present lack of strength and stamina are mostly because I rarely exercised before the stroke. Didn’t like it, didn’t want to, so I didn’t. Don’t be like me. Go for a walk. Often. Aging will go better that way.
8. I’m not sure how much of my current limitations are from before the stroke or if they are complicated by subtle stroke deficits. I do know they won’t get better without more effort and discipline from me. If you’d like to still pray for me, that’d be helpful and appreciated.

I am one of the lucky ones. I did get TPA in time apparently to stop the stroke. One thing I read said 1 in 10 people are cured by TPA. I think I got close.

I am very grateful.

 

 

Advertisement

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!

Women and Clothes

Where were you in 1966-67?

I was a freshman at Centerville (Ohio) High School, just south of Dayton. The fashion of the day was short skirts with pantihose or knee socks. No pants allowed for girls.

The high school had two buildings–the old junior high (they built a new middle school) and the newer high school building. The football stadium was in between the buildings. I don’t remember how long we had between classes, but it was barely enough for those of us who had classes in both buildings. Long enough for our legs to freeze in the winter!

I read a book recently called Women and Clothes, a collection of essays and responses to a long questionnaire. It was surprisingly interesting.

It triggered memories like our ridiculous short skirts.  Why were we not allowed to wear pants? Short skirts blowing in the cold winter wind surely weren’t more lady-like.  I remember one English class where our desks were in two sections, facing each other.  I am sure many a boy was distracted staring straight at our short skirts.  I finally got to wear pants to school in the spring of my senior year in high school, 1970.  Yay for Women’s Liberation and the power of petitions!

When I went to UNC-Chapel Hill in the fall of 1970, I wore nothing but blue jeans.  I had a maroon turtleneck bodysuit (remember the shirts that snapped in the crotch like baby clothes?) that I wore constantly one winter with a pair of bell bottoms embellished with crochet trim at the hem and some flowers I embroidered on the legs with yarn.  I held onto those jeans for a long, long time.  When my girls got old enough to want to wear them, I couldn’t find them.

At some point in the late 1990’s, I bought a black two-piece dress–my first grownup little black dress. It was lined and made of crepe with a slightly flared black skirt and a matching sleeveless shell top.  It fit.  It was the right length.  It could go a lot of places. I wore it several times to go out to nice restaurants when my daughter was in college in Washington, DC, and I always felt good in it.  Then I gained enough weight that the dress was a size too small.  I gave it away.  I still miss that dress and how I felt when I wore it.

I can only wear skirts and dresses in warm weather now.  I can’t pull up tights anymore because of the arthritis in my hands.  I love the way skirts and tights look.  And I liked how tights made my legs and butt feel firm.  I miss that feeling.

My daughters came of age in the late 1980’s and early 1990’s.  My older daughter and I clashed for weeks over Guess jeans when she was in middle school.  I refused to pay what I considered an absurd price for that red and white triangle on the back pocket (see it here).  I never did.  These days, she’s Maggie’s mom and buys designer holiday dresses at consignment stores and then resells them when she’s done with them.

When my younger daughter was in kindergarten, she decided she needed a pair of hot pink Chuck Taylor high top (click here) shoes.  Why??  I found imitation ones at Kmart and bought a hot pink pair and a turquoise pair.  She would wear one of each.  I would never wear anything that out of the norm, then or now, but I loved that she did! These days, she is Adaline’s mom and delights in picking out funky outfits for her to wear to school.  I buy Adaline crazy patterned leggings. Her mom sends me pictures of Adaline’s outfits.

Women and Clothes asked women about having “a style.” I wondered–do I have a style? A lot of days I dress like I did in college: jeans, a t-shirt, a sweater, and clogs. Is that an appropriate style for a woman about to turn 63?  I do consistently like clothes from Jjill (click here for their website). They are casually chic, I guess, made from soft, natural fabrics. They have good sales!

I don’t think about clothes much anymore. I know what I like.  I know what I feel good in.  I know what’s flattering. I want to be comfortable.  And I’m not really trying to attract attention anymore.

I just don’t want to be a frump!

 

I Need a New Beach

I said goodbye to my brother last week.  Well, really, I said goodbye to Carolina Beach last week.  Before he died in July, 2013, my brother worked and lived around Carolina Beach for about 30 years. So, many years ago, when I decided to run away from home, I ran to Carolina Beach, 4 hours down I40.

I had never been on my own.  I went to college 25 miles from home, met the retired man I now live with at 20, married him at 22 and had 2 kids by age 27.  I chose to be a 30-something stay-at-home mom of 2 little girls with a husband who was gone overnight several nights a week.

I needed to go away alone every so often to find the Robin hidden inside the wife, mother, friend, volunteer, room mother, and Sunday School teacher.

I felt safe at Carolina Beach.  My brother worked on a charter fishing boat, but he showed me where a couple of his friends worked if I needed help. I knew where the police station was and he knew some of the officers.  He pointed me to a safe motel, where I could get an affordable oceanfront room.

I discovered that the ocean fed my spirit and my soul.  I could rest there. Carolina Beach became my “thin place”–a place where the barrier between me and God became permeable.  I found Robin.

Last week I spent 2 nights in an oceanfront room.  I couldn’t rest.  I couldn’t feel God. I missed my brother.

Down one street was the motel he and his wife managed in the 1980’s.  Down the street behind McDonald’s and Hardees,  the charter fishing boats docked in their designated spaces.  I used to go watch when his boat came in and he cut up the fish they caught that day.  Near the boats was the diner where he took me to eat.  Across from the hotel, behind the pancake house, was one of the nice restaurants where I’d buy him dinner. It’s a seafood restaurant, but sometimes he’d order steak.  I’d laugh.

He always understood that I came to the beach to be alone.  He spent his days interacting with people and treasured his evenings alone.  We usually had dinner once or twice while I was there.  It took years for us to get comfortable enough with each other to sustain a conversation through a meal.

When he got cancer last year, he called me.  When he was admitted to the hospital, a week before he died, he asked me to come.  I was with him when he died.  I’m grateful now for all those uncomfortable dinners.

One day soon, my daughters and their families will join me and the retired man I live with for one last visit to Carolina Beach.  We will pour his ashes in the ocean and say goodbye.

I need a new beach.  Someplace where I can rest.  And tend my soul.

 

Does It Matter?

Human bodies are complex and mysterious and keep on changing.

Some of the early stuff I expected–periods and cramps (and sometimes being glad when they appeared), groping of various parts by others, and complexion issues like pimples and eventually laugh lines.

As I passed 40 and 50 and approached and passed 60, surprises popped up.

During the time I colored my hair brown, I started seeing grey hairs in my eyebrows.  I used Just for Men Mustache and Beard dye to color them, even though the box said not to.  Now, with grey hair on my head, I can see some brown.  But I didn’t know my eyebrow hairs would get sparse.  I don’t know what to do about that, other than not look at them.

A couple of years ago I read in a women’s magazine about all the things plastic surgery can fix.  One was saggy eyelids.  That day I looked in the mirror–I had saggy eyelids!  Now I notice every time I put on mascara.

I’ve always known about cellulite on the backs of my thighs.  Everyone deals with that, right?  I didn’t know that my leg skin would sag.  I laugh and blame it on gravity, but really I am fascinated and horrified each time I look in the mirror in my underwear.  Do I think it might go away while I sleep?

Then we get to the whole menopause transition thing.  My 1st hot flash hit on a hot August day while I helped my youngest child pack for her first semester of college.  Not the last time I saw a connection to emotional stress.  They lasted for years.

For about 3 years during that time, I exhibited intermittent, long-lasting PMS symptoms.  My husband said I was nuts and I thought for a long time he made it up or at least exaggerated.  He was right.  I was an emotional bomb that could go off at any moment.  It helped to have friends going through the same stuff.  After a hysterectomy, the passage of time and some estrogen therapy, I settled back into my normal level of volatility and drama.

My 90-year-old aunt is here visiting us.  She flew–alone–from Iowa to NC.  She calls it “the trip from hell.”  She had a delay on the first leg, a missed connection in Detroit, a later flight that sat 2 hours on the tarmac because they couldn’t unhook some tether, and a twenty-minute wait for a parking spot at the Raleigh airport.  Original arrival time was 7:30 pm.  We finally saw her come up the hall toward us about 11:30 pm.  We got to our house after 1:00 am.  She was in better shape than either of us.  (We were up way past our bedtime!)

All the way home, she told us about the nice people she met along the way who helped her and talked with her.  She believes that there is something of God in each of us (she is a lifelong Quaker) and that most people are basically good.  And with that attitude, they are.  Her life, like all of us, has had tragedies and difficulties and challenges.  She sees the glass as half-full and each day as full of possibilities.

Acceptance of things as they are is a life-long challenge.  The older I get the easier it is to laugh and surrender my need to control.  Maybe by 90, I’ll get the hang of it.

I’ve had a cancer scare.  Saggy eyelids and leg skin and sparse eyebrows are irrelevant.  I’m here and I’m glad.  And I’ve got to quit looking in mirrors with my glasses on.

Vicks VapoRub and Dark Chocolate

I smeared Vick’s VapoRub on my chest and the bottoms of my feet, put on a pair of heavy socks, laid my head down on 2 pillows and tried to go to sleep.  Before bedtime I tried lemon/ginger tea with honey, straight teaspoons of honey, enough mentholyptus cough drops to make me anxious about my next dentist appointment, and several squares of dark chocolate.

Why not?

I had a bad cough from pneumonia, even after the antibiotic kicked in and I felt some better.  No cough medicine helped.

I googled People’s Pharmacy, a public radio show that originates down the road in Chapel Hill.  It’s a safe site for natural, old-wives-tale-type remedies.  I like to just wander through their website. Here is the link I found: People’s Pharmacy Cough Remedies.

That 1st night of Vick’s and ginger and chocolate I took no cough medicine.  I slept for 10 hours without much coughing.  My daughters with babies were jealous.  I tried all the remedies the next evening, too.  I coughed some.  Third night, I was no better than before the home remedies.  Did it work at all?  I’m really grateful for that one good night.

People cough everywhere I go.  We should all agree not to leave our houses for 2 weeks.  Buy groceries like it’s going to snow a foot or more. (That’s a BIG deal in NC.) Have on hand whatever you’re addicted to.  I think snow calls for Doritos and ice cream, myself.  Stock up on books and movies.  Then at a specific time on a specific day, the whole country shuts down.  We could all rest and get well and stop trading germs around.

Obviously I write as a 60-year old woman who lives in a big house with a retired man who takes naps and can cook.  I would never have suggested this when we had 2 little kids.  I don’t know what we’d do about the potential for child and spousal abuse.

Ok, I need to rethink this.  Maybe I’ll just quarantine myself.  You all do what you want, but don’t come to my house.

PS:  Vicks VapoRub was invented right here in Greensboro, NC, where I live.  Cool, huh?  Click here for more odd uses.

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?

Amma on the Move

1.  I drove at least 100 miles in SC and saw only one Obama yard sign.  I think Romney’s got SC.

2.  Myrtle Beach dozes at the end of October.  I saw lots of big hotel/resort complexes with nearly empty parking decks.  I’m glad I wasn’t reading a Stephen King novel.

3.  I drove 472 miles round trip by myself for a few days of solitude at the beach.  I tried to detach and disconnect from my iPhone and laptop. CNN captured me with pictures and news from Hurricane Sandy.  I turned them off some of the time, but not enough.  I read a whole book in 2 days, though.

4.  I enjoyed filling up my Prius next to a big Chevy truck.  South Carolina gas costs a lot less than North Carolina gas.  NC has smoother roads.  I’ll pay the extra tax.

5.  The airport operated from 6:00 am to 9:30 pm daily.  (I thought airports on the east coast were shut down.) I was under the flight path for some big jets.  They came in bunches of 3-4 in a row.  Did you know Myrtle Beach has an international airport?

6.  Thanks to Yelp and my GPS, I found a nice natural food store in Myrtle Beach–Bay Naturals Healthy Market and Kitchen.

7.  You can find a beachware store with cheap t-shirts, hoodies and beach towels on almost every block of King’s Highway–Wings, Whales or Eagles across the street from each for miles.  No left turns necessary.  They all look the same.  Do they all belong to one company?

8.  I wanted to stop at “Fat Man’s Dream Dogs and Cream”, but it wasn’t open yet.  “Mammy’s Kitchen” was open down the road.  I didn’t stop.

9.  All hotel rooms should have a cushy comfortable chair, preferably with an ottoman.  My room had a small table with 2 straight chairs and 2 beds to sit on.  My back and my rear end forced me to alternate and I was never really comfortable until I turned off the light to sleep.

10. Black Ankle Road is an exit in NC on Hwy 220.  I looked up the origin of that one on Wikipedia:

The origin of the name Black Ankle is from the late 1920s or early 1930s when gold was discovered in 1928 near Franklin Mountain. Many people came to the area to try to make their fortune in the mine or to be laborers and make a decent living. About once a week, in the evenings after the working day was over, the miners would all climb on the back of a truck or trailer and ride to Star, Ether or Steeds to restock on supplies they may need to get them through another week. In the area where the Franklin Mountain (Blackankle Gold Mine) is located, the soil is very dark, rich and fertile. These miners almost always were shoeless when they went into town and the black dirt from the area, mixed with a little water, made their feet discolored and dark. Everywhere the miners went, people would see the feet of the visitors and say “Here comes the blackanklers.” It was soon after the discovery of gold that Black Ankle, from the miners with dirty feet, got its name.

Who knew?

11.  When I got home, the retired man I live with was watching CNN and using Google maps on his iPad to locate Hoboken, NJ.  Imagine saying that 5 or 10 years ago.

12.  Independent travel is a fun adventure.  Home is safe and warm and has my bed and pillow and the retired man I live with.  I’m grateful for both.

Baby Bad Ass

I started calling her that shortly after she was born.  It still fits.

Last week I wrote about my granddaughter having heart surgery on September 27.  She did and after a rough first 24 hours, she improves each day.  Today, Sunday, she moved out of ICU, her parents could finally hold her and she is able to nurse on demand.  Last I heard, she was sleeping in her mama’s arms.

Once again, I am amazed at the toll emotional stress takes on my body.  So I rested and napped and read the paper today.  Tomorrow I hope to hold my brave and strong granddaughter.  And her mom and dad.

We are so very grateful for family, friends, medical professionals and medical insurance.  We feel surrounded by all that is good.  Thank God.

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.