My Walk with AIDS

On a Friday night over a week ago, I stood under a tent in a large urban park at a memorial service for no one in particular and for every one on this planet. I held the microphone in my hand and began. Began again. To tell my story of AIDS.

On a Friday night over a week ago, I stood under a tent in a large urban park at a memorial service for no one in particular and for every one on this planet. I held the microphone in my hand and began. Began again. To tell my story of AIDS.

Friday night was a small candlelight ceremony for those who have been lost to HIV/AIDS in our community, and they were celebrated that evening by those under the tent. But I have lost no one. No one I can hold up a photo for. No one I can memorialize on a T-shirt, flag or banner.

I held that microphone as tightly as I hold my son. That was who I was fighting for, I said. Sixteen years ago, I held a newborn boy in my arms as I volunteered for the first time along the route of the AIDS Walk. Months before he was born, a friend had asked me to help. Standing in the grass on a spring morning sounded magical to me in my eighth month of pregnancy. When the day arrived, it was dreamlike. Me, my husband, my new son – all sporting little red ribbons and helping a band entertain walkers and enthusiastic runners in the sun.

Last year's Walk.
Last year’s Walk.

Every year since, I have worked on the Walk and moved up through the volunteer ranks. Route helper, volunteer coordinator, project coordinator, special event committee person, steering committee member, Walk co-chair. Every year since that first one, I’ve had a little hand in mine or a little head in my eyesight on Walk day. My son has never missed a Walk and now joins me as a full-fledged committee member on one event. Walk day is a family reunion for all of us.

My story is short and simple. I desire deeply a world without AIDS for my son. For all sons and daughters and mothers and fathers. Sisters. Brothers. A world free of stigma and hate. Pointed fingers and whispered admonishments will be behind us. Every year I renew my commitment to making that world come to be.

d walking with flags

This year I stood in the light rain as my son walked by me carrying a dated memorial flag representing the 25 years of the AIDS Walk. Three long blocks later, I looked up, and there was my niece sporting a flag of her own. This one held the name of someone who no longer walks. She carried it to its final place with the others in a circle of flags that every one of the 2,000+ walkers walked by. My tears were easily covered by Mother Nature’s water show.

Beanie and her flag

They are my future and my chance to live in an AIDS free world. They’ve never known one.

I believe that they will.

Sloane

 

My niece in her AIDS Walk hat.
My niece in her AIDS Walk hat.

 

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Springtime Hello

My husband and I owned a home before the one we live in now. But to my father’s father, this is our first home. The other one was “nothing but air, really.” When we purchased the house we live in now, my grandfather practically rejoiced.

My husband and I owned a home before the one we live in now. But to my father’s father, this is our first home. The other one was “nothing but air, really.”

It was a condo in a converted warehouse downtown. The first such condos in Kansas City. We were practically pioneers! But to the midwestern farmer, a large space without bedroom walls four stories in the air isn’t something you own, is it? I called all of my grandparents when we closed on the condo because I was so proud. I owned something, and this, I felt, was something they could embrace with me.

Three of them did. One, not so much. He would call it “my apartment” while he and my Grandma Ginny made themselves comfortable on our sofa. I would smile and begin to tell him all about condo rules and association dues, beautification committees and other details. He looked at me with incredible blue eyes like I was speaking in tongues.

I moved on.

My grandmother loved the loft. She loved everything about her grandchildren, whether it involved property ownership or not. She clearly got the idea of how a loft was less work and less maintenance – snow removal, house painting, etc. – and I think it excited her a little. They had worked hard all of their lives on their home and properties. Our loft was a new concept, not only to them but to many Americans, and she sparkled while asking all about it and what we planned to do.

bridal wreath bush

When we purchased the house we live in now – the one with the yard work, the roof repairs, the exterior paint jobs – my grandfather practically rejoiced. This he could understand. We owned the actual dirt our house stood on. It was built of wood and stone and brick and it was solid. The neighbors weren’t on top of us or below us. They were a secure distance away.

My grandmother couldn’t wait to see the house. She waited until all our “pretties” were in place – which means she gave us about two weeks to get settled – and then they arrived. I was so terribly excited because they had agreed to spend the night – something they had never done at the loft, although my grandmother had wanted to. The lack of interior walls threw my grandpa for a loop.

In the back of the pick-up truck, under a cotton sheet and inside an old pickle bucket, was a collection of sticks with small green leaves on them stuck in crumbly mud. It was fall when they arrived, so these sticks were moving towards being done with the growing season. They looked sad and a wee bit pathetic. Until earlier that day, it had been part of a larger bush near their home in mid-Missouri.

My grandfather hauled them out and walked with me around “the property” to find a place to plant “this bush”. I was intrigued because what I saw in the bucket looked like what we had spent most of a week tearing out of our plot. Junk. Detritus. Weeds.

bridal wreath back corner

It wasn’t any of that. It was what my grandmother called a “bridal wreath bush. You’ll see what I mean next spring.”

I trusted them both in their ability to grow things. They were farmers, for goodness’ sake. So, I let my grandfather pick a spot in the far end of the back yard up in a raised bed. It made him happy. A little bit of run-off and a good spot not to “gather up too much late afternoon sun.”

And it has stayed there for almost twenty years, only getting bigger and needing no maintenance. My grandparents are gone now, but every spring I go out and tell them hello. This year, like every spring in the past, they were delighted to see me, and they put on quite a show.

Sloane

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Not A Green Thumb

I do not have a green thumb. I’m pretty sure I don’t want to grow one either. I have watched my mother for years grow great things and enjoy it. I was raised helping her – alongside my sisters and father – make things bloom and prosper.

I do not have a green thumb. I’m pretty sure I don’t want to grow one either. I have watched my mother for years grow great things and enjoy it. I was raised helping her – alongside my sisters and father – make things bloom and prosper. I can also remember a killer breakout from the poison ivy infestation we attempted to quash at one of my childhood homes. I grew up with lovely surroundings, and I currently keep a lovely yard, but it is not labor intensive. We planted things 20 years ago when we moved in that have only flourished under our huge trees – vinca, hosta, lily of the valley, turf fescue.

Crocus blooming in Sloane's yard.

But I digress. Today, in my own yard, these sweet babies were waiting when I came home from an early meeting. These glorious bulbs that my husband and I planted long before our son was in our world were coming to life. Long ago, we got a mixed bulk bag of crocus bulbs from somewhere. Probably the hardware store. And, on a weekend when my grandparents were in town, we planted them. I turned to my Grandma, my mother’s mom, and asked if she had any pointers for planting. “Yes. Plant them deep and where you’d like a little surprise.”

Crocus bunch in Sloane's yard.

So we did. Some went in the front yard in the grassy part. Some went in a side bed that follows the driveway. They bloom every year and the come up in batches. A synchronized dance. The yellow ones are fearless and have been known to poke up through snow. Deep purple and bright purple will follow within a few weeks and the whole show ends with white. This can last for a month.

I am surprised every time.

Sloane

p.s. If you desire to read more about my abundant gardening skills, click here.

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Health and the Human Heart

Yesterday I walked into Truman Hospital for the first time in 16 years – since the night my youngest sister died with dignity in their care. I haven’t been ignoring the place. I just haven’t had a reason to stop in.

Yesterday I walked into Truman Hospital for the first time in 16 years – since the night my youngest sister died with dignity in their care. I haven’t been ignoring the place. I just haven’t had a reason to stop in.

You see, I have health insurance, a part of group healthcare from Taylor Benefits Insurance, and no recent need for hospital care. So as not to be confusing, my sister may very well have had health insurance but her auto accident placed her in their amazing hospital by proximity. It was her closest and best hope.

I went to Truman to show my support for the health levy campaign, which Kansas City voters will vote on in April. I wanted very much to stand there with my friends from the Kansas City CARE Clinic and continue to share with the world the need for safety net providers and all that they offer to those without insurance. Truman Medical Center is another place where those without insurance can always find care. Always. Politics is a funny business and has never had a big place in this blog I share with my sister. If you want to know more, click here.

On my walk alone back from the board room, I was transfixed by the art in the hallways, waiting rooms and sky walks. Gorgeous. They were all well lit and very, very pleasing. Wood cuts, prints, water colors, pastels. Wonderful. I have a true love of public art and tried to take time to absorb. But I needed to get back to work.

I made myself exit through the emergency waiting room. Our family was never made to wait the night my sister died – we were swiftly escorted back to a room without her in it. I did not dwell in the daylight, but I did take a moment to take in the art, the upholstered chairs, the seating arrangements, and the kind staff. Good things, sad things, and amazing things happen every day in the buildings on Hospital Hill, and I found myself there on one of those days with a full heart.

I left, got in my car, and pulled half a block down the street to take in, again, one of my favorite pieces of public art in Kansas City.

Old Sign

It reads: “The quality of mercy is not strained. It droppeth as the gentle rain from heaven upon the place beneath. It is twice blessed. It blesses him that gives and him that takes.”

It stops me in my tracks every time. What started as decorative architecture has a home in front of one of Kansas City’s premier care facilities. Yesterday I walked even closer to it than I ever have. I noticed the chisel marks near the 5 on the “1905” curving edge. A human may very well have carved this piece that hung over Kansas City General Hospital all those years ago.

How fitting.

Sloane

p.s. I am including a closer view below. You can’t see the chisel marks, but you can read the words and see better the carving and design. This is on Holmes right before you get to 20th Street.

close-up of General Hospital sign

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Slow and Steady

I should have never cracked the car window. Dang this unseasonably warm weather. Sixty degrees in February. With time, being able to catch gulps of fresh air would be a blessing.

I watched the door of the ice cream shop as my husband ran in to get a coffee drink, and I watched a woman with a walker walk out.

I should have never cracked the car window. Dang this unseasonably warm weather. Sixty degrees in February. With time, being able to catch gulps of fresh air would be a blessing.

I watched the door of the ice cream shop as my husband ran in to get a coffee drink, and I watched a woman with a walker walk out. She was escorted by her son and his wife. She had all the makings of a woman who has come to terms with her older status and her condition. Bright, clean tennis balls adorned the front two supports, and sturdy sneakers held her in place. Her steps were slow and purposeful, bone and muscle clearly full of the memories of a few steps previously misplaced.

She was over 80, if she was a day. Well-groomed. Tidy. And the man, who I took to be her son, was my father’s age. 60s. Established. Comfortable in his life. The woman with them was his age, but he was the direct link to the walker, I surmised. All wore wedding rings, but the deep relationships ran beyond the binding of gold.

My grandmother at a great STUFF party in 2001.
My grandmother at a STUFF party in 2001.

I saw them coming towards the car next to mine, and I decided that pulling back a bit to give them room would be so helpful. The tail end of my sedan was pretty much protected by the monster SUV idling to my right. A distant memory reminded me that you need room to maneuver a car door, a human and a walker. You need space and time and patience.

When my dad’s mother was in the last few years of her life, she was relegated to a walker. She took to it pretty well. She was a joyous and happy woman most of her life, and what would be a set-back to many just kept her moving, which kept her happy. What I remember most about this time was the feeling in myself that it was time for me to slow down, too. Rushing through life needed to abate, and I needed to watch more and see more. I had to be missing things by not standing still a bit. By not waiting. My time with her was clearly running shorter, and I learned much from her final years about myself and my family. Some of us couldn’t wait to ditch her walker at the restaurant after getting her settled. Some of us would apologize to others in public for our speed, even if we weren’t impeding their progress. I noticed strangers would occasionally have trouble making eye contact with me, as if my grandmother’s limited ability was a freak show they shouldn’t be watching. On several occasions, my grandmother would start to make conversation with an able-bodied stranger, and they seemed shocked that she could speak clearly!

My grandmother holding my newborn niece in 2005.
My niece and her great grandmother in 2005.

Much came flooding back to me as I watched this group leave the ice cream store while adjusting my car’s position. Tears came to me slowly, and I was transported back to a cool, brisk day several years ago when I took my grandmother out for her last Coke and short walk. Within 24 hours, the beginning of her end would start, and she would soon take me on a journey that would eventually end at her graveside.

Birthday party hats on my son, my niece and my Grandma.
My son, niece and grandmother in 2007 at my grandmother’s birthday party.

When the stranger had his mother seated in the front seat of his car, he and his female companion walked toward the back of their car, and he said to me, through my open window, “Thank you very much. That was kind of you.” I was barely able to choke out the part about how it was the least that I could do.

“I remember it all so vividly,” is what I told them from behind my sunglasses. And I do.

Sloane

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Packing It All Away

I was packing the last two boxes of holiday decorations. I save the packing of the ornaments for last. They usually come off the trees on a Sunday, migrate to the dining room table for removal of the hooks, and, a few days later, I start putting them back into the tissue paper they hailed from just a month and a half before.

I was packing the last two boxes of holiday decorations. I save the packing of the ornaments for last. They usually come off the trees on a Sunday, migrate to the dining room table for removal of the hooks, and, a few days later, I start putting them back into the tissue paper they hailed from just a month and a half before.

I was putting the finishing layers – three per box – into both boxes at once and said to my husband and son, “If I dropped dead tomorrow, you guys would never open these again, would you?” They were only one room away, clicking busily on their computers, when the dove-tailed answers hit. “No.” Maybe one of them mumbled, “Probably not.”

These boxes hold memories. When I unpack them right after Thanksgiving, they rest on the dining room table – out of their protective wraps – while I stare at them and repair unglued joints. I remember tiny hands that made some, and this year I revisited memories of a long gone sister and the two things I have that she made as a child. I walk leisurely down memory lane during the busiest month of my year.

A few days later, when the three of us go to hang them all, I take a few minutes to point out several to my son that have real significance – my grandmother’s stitches, my great-aunt’s crochet work, his grandfather’s paint strokes, and his aunt’s ability with clay. I try not to overwhelm and have learned that four shout outs one night a year is the maximum for possible retention.

 

I don’t really know if the boxes would ever be opened by the two men I live with. A woman would open them if left in her care. She would wait a year. Or more. Then, one cold morning, she would brace herself with a box of tissues and her courage and rip those suckers open. She would visit each piece like a tongue lingers on tooth pain. Delicately, so as not to wince, moan or cry out.

I packed it all away. Again. The entire process is cathartic to me. I have many people to visit with at my dining table all year long at a myriad of events, celebrations and holidays. But the places and the people I can’t have back come delicately to me in December in the form of pinecones, angels, dogs, and snowmen. I touch them all. Hang them up to breathe. Live with them. Then, I let them go.

Sloane

p.s. Full disclosure: This is not our tree featured with my son and me in the photo. This tree graces the lobby at The Rep every year during the seasonal run of “A Christmas Carol”. We visit it.

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Child Labor

They start by just sleeping in their car carriers. Under the desk. Behind the counter. In the office. They come to work and they do little.

They start by just sleeping in their car carriers. Under the desk. Behind the counter. In the office. They come to work and they do little.

Then, they play. They play with their own toys, they play with the office supplies, and maybe, just maybe, they play shop with us. They nap, they nosh.

Then, around five years old, they want something “real” to do. Labeling, stickering, sorting. Doesn’t matter, just as long as it’s what we’re doing. It’s for short periods of time so that the playing can continue.

 

At seven, they want a timesheet. It not about the money – there are child labor laws! – it’s about being like the other employees and doing “real work”. Not like the stuff they did at five. This time the labeling needs to be on product, the stickering needs to be on real file folders, and the sorting becomes filing into the file cabinets. Real numbers, Labor Law Compliance Center labor posters, the full alphabet, and goals.

This week my niece filled out a timesheet that brought tears to me eyes. They grow up too fast. But it was the little parts of this one that got me. Her nickname, my nickname, the day of the week, and the fact that she got it approved by her mother. Their childhood goes by so fast, and I can’t speak for my sister but having the children at work with you alleviates huge piles of mother guilt when you feel pulled in multiple directions. It’s not all bad and more than a little bit of fun. You laugh more, you walk up the street for ice cream and popcorn, and you remember – and feel deeply – what a family business really is.

The law be damned. They just want to be like their mothers.Sloane

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The First Cold Day

The children were turning blue in front of our eyes. The same parents that had previously over-dressed them for every snow day were just standing there watching them smile and freeze.

The children were turning blue in front of our eyes. The same parents that had previously over-dressed them for every snow day were just standing there watching them smile and freeze. The same parents that despised making them put coats on over their tiny costumes on brisk Halloween nights in years past. These same parents held cameras aloft and captured all the smiles on film.

I was one of those parents. It seemed like just yesterday I had begged him to get out of the pool because his lips were blue and he was causing ripples just standing still. “No Mom. I’m fffine,” as the sun nestled in tighter behind the clouds. Yet here I was bearing witness to his male friends holding back the shivers while the females of the bunch pulled their uncovered legs a little closer together under short skirts. It was my son’s second Homecoming Dance. Who was I to be the voice of reason and therefore the party-pooper. The “Weird Mom”.

Their lips were almost to chattering, and the cameras clicked along. Yet they ran to the rented bus and its awating warmth when it pulled up.

Then they left us on the lawn of the art museum to find our own way.

Sloane

p.s. That’s mine. Third from the right.

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Home Alone

God save me from my memories.

Tonight was a gift that has come along so seldom in the last 15 years that I was giddy with the possibilities. The husband at work for a client. The kid off at a dance and after parties.

God save me from my memories.

Tonight was a gift that has come along so seldom in the last 15 years that I was giddy with the possibilities. The husband at work for a client. The kid off at a dance and after parties.  I didn’t know when the man would be home, but the boy’s pickup wasn’t until 1am. A day of work and volunteering behind me, and an evening to myself. Alone. In my home alone. Nirvana.

Maybe catching up on my reading. Maybe writing a bit from the notes I gathered at my writing group on Friday. Maybe learning to use the remote and watching an old movie. Maybe remembering the huge dust monster found in my closet/dressing room/office earlier this morning while digging the boots out.

Guess which one won?

Here I am at 10pm on a Saturday night. Battling the vacuum attachments was work enough, but the flood of memories from the handbags, totes and clutches almost took me down.

What in the hell is wrong with me? I can clean out a child’s room quickly. I can make happy work of an over-packed junk drawer. I can sort through the “dump pile” of weekly mail swiftly. I can make tough decisions about what goes and what stays in every room in the house except the one that is solely mine. My dressing room and office.

This pile of incredibly dusty and seldom used bags turned into a hike through Mizzou (early ’80s), a trip to a national political convention (mid ’80s), a trip with my toddler to the zoo in St. Louis (late ’90s), a first-time handbag purchase from a street vendor in New York (early ’90s), and a talk with my grandmother (seemingly yesterday). I stood there vacuuming them all – with the brush attachment and working up a marginal sweat – telling myself that this was it. This was finally the day to rid myself of cotton duck cloth and/or leather that hadn’t held a school book, diaper, notebook, badge or swimsuit in over 10 years.

Then I folded them neatly into a dust-resistant plastic bin and put them away on the highest shelf of my closet.

For another day.

Sloane

p.s. Of course it turned into a larger project that encompassed the entire closet. Silly girl. What was I thinking?

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Big Trees are Magic

Friday morning I sat on my back deck and looked for places to plant a tree on our postage stamp lot in mid-town.

Friday morning I sat on my back deck and looked for places to plant a tree on our postage stamp lot in mid-town. Mowing takes our son all of 15 minutes – front and back – because trees, bedding and produce gardens dot the property. Grass is not our top producer of mulch. Leaves are.

We live with three large trees. Trees that tower over the house, and the house stands at three stories tall. Majestic specimens all: oak, maple and hackberry. Mature trees. Trees that knock our use of air conditioning back a bit. I have told my husband many times that when even one of these trees leaves us, I’m calling the movers.

In the last week, two different neighbors have cut down same-size trees. Big ones. Upon seeing their removal – even if watching tree removal after a storm actually, my chest got tight. My palms ached a bit and I beat back tears. I have yet to dig down too deep on these physical reactions to loss to understand myself. Maybe I don’t want to. All I know is that within 24 hours of the second loss I was sitting and looking at my yard, thinking about planting a tree. I felt we needed another. Not we the people in my house, but we the planet.

I guess I’m a tree hugger. Big trees are magic to me. I can remember lying under the huge oak at one of my childhood homes. If offered a wide and dense canopy. I would look up and I was protected by a big green tent. If I heard something overhead or wondered about the sky, I would have to get up and walk away from the tree to see anything at all. Hearing was possible; sight was not.

I have spent the years since I was a political consultant trying to beat back agressive or fevered tendencies in my words and actions. I like to think I’ve calmed a bit. But on the issue of trees, knee jerk reactions are clearly on the rise.

Sloane

 

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Copyright Casey Simmons and S. Sloane Simmons. People who steal other people's words & thoughts are asshats. Don't be an asshat.