THE MAN WHO (NEVER) CAME FOR DINNER

An open letter to Arizona Senator Jeff Flake

 

Dear Mr. Flake,

I’m not sure how I, a little old lady in a wheelchair, became such a menace that the entrances to your building were blockaded when a group of moms impacted by gun violence announced we’d be coming.

It was the invitation to dinner. Wasn’t it?

The gun lobby has had access to discuss the issue of gun violence; they’ve donated more than $360,000 to your campaigns. I want equal access.

Nine years ago, I was shot in the back and paralyzed. David, my fiancé, was shot 3 times – one of those .45 caliber bullets roared through his skull leaving him blind and with a significant brain injury that stole the essence of who he was.

Now I pore through studies, reports, and news stories. I talk to cops, victims, families, offenders, medical personnel and gun owners. You might be surprised to know that I own guns although it’s only been the last few months that I’ve been back to the range. I found my competitive spirit alive and well along with my aim. I am a strong supporter of the Second Amendment and an equally strong supporter of sensible gun reform.

There’s something you need to know about my shooting: my fiancé was armed at the time… Yes, a good guy with a gun…

After other requests to meet with you went unanswered, I, along with 21 other families touched by gun violence in Arizona, sent emails (followed up by faxes, phone calls and snail mail) sharing our stories and invitations to a private dinner. This wasn’t a trick. We hoped that one of our stories might move you to accept this genuine offer. Our invitations haven’t even received a form-written “no thank you.”  

I planned a great low-key evening; no media, no cameras or recorders. (OK, I’d ask for a photo with you and yes, I’d post that to Facebook afterward.) You are sincerely welcomed into my home.

First, you’d meet Pearl, my service dog, the diva who makes my independent life possible and Porter, my service-dog-in- training.

Compared to my pre-injury life, my home is now small and informal. Sometimes that still embarrasses me. You can’t help but notice my lowered counters and ramped doorways; these modifications ensure my independence. Many people are initially ill-at-ease; unsure how my new life works. It’s ok to ask about my modifications, some of them are cool.

Everything would be tasty but humble. Maybe we’d start with my jalapeño hummus; everyone compliments that dish. Do you like spicy food?

With dinner ready, I’d ask you to carry the hottest and heaviest dishes because it’s hard for me to push my wheelchair with my hands full. I hope you’d bless our meal and conversation Mr. Flake. I’m not a believer but I am a respecter of faith. I know faith is important to you.

We’d talk about our families; your 5 children, my son who now has to worry about his college debt because of money taken from his college savings to pay my medical bills.

I’d tell you about the night of the shooting. David and I were holding hands and making wedding plans when 5 shots rang out. My son was rushed from his bed to a trauma room that reeked of blood and antiseptic to say goodbye to his dying mother. When I finally awoke to learn I was paralyzed, he was holding my hand. He was twelve. No child should ever have to be that strong or brave.

You and David have a lot in common with your love of fitness. David changed our community using martial arts as a vehicle to help shape kids others had given up on. Initially, I spoon-fed him, shaved him, soothed his nightmares and narrated the darkness in which he now lives. My own healing and adjustment to paralysis was so much harder without David’s steadiness.

I’d make a wisecrack to lighten the mood because I hate when things get too dark.

Then, I’d ask why, if you had reservations, you didn’t collaborate to change the Toomey-Manchin amendment so you could sign it.

You already know that conservative polls show more than 75% of Americans support UBCs. The majority of polls put that number at 90% for Arizona, including 84% of gun owners.

I’d share stories of survivors who might never have experienced gun violence if the offender had to undergo a background check – especially those who experienced gun violence as a result of repeat domestic violence.

I believe UBCs might have prevented our shooting.

Do you know, Mr. Flake, that every day 260 people are shot; 84 of those people – 8 of whom are children- die? When we frame our gun reform discussions solely around horrific mass shootings, as tragic as they are, we miss the day-to-day public health crisis happening across our nation.

You and I agree that gun violence won’t be fixed by a single solution. We need a broad discussion from mental health solutions to military-style weapons and high-capacity clips and the federal law on straw purchases and gun trafficking that could make Arizona’s border safer. A federal law on straw purchases might have stopped Newtown, and probably Columbine.

We’d touch on Tucson and Gabby.

My friends involved in the Tucson shooting note that you drove so fast from Mesa that Gabby’s folks from Sonoita arrived after you.

They’ve recounted how much your presence meant in those first hours of shock and horror. They’re confused that you saw so much death and devastation first-hand yet stand silent on gun violence.

Over dessert, I’d ask for your pledge to redraft bipartisan legislation. For Gabby – for whom you broke a land speed record racing to her side- and for people like me and my son, and all the lives shattered by gun violence.

We’d part with a warm handshake and I hope an agreement to continue a dialogue on this issue and work to a compromise.

But, that dinner didn’t happen.

Each day you ignore the conversation, another 260 Americans are shot. One day, another horrific mass shooting will occur that shocks us into demanding action. We’ll wonder why it’s still not done. While you’ve talked about “the beauty of a six-year term,” we who lose family members or our health and vitality to gun violence don’t forget.

Do I in my wheelchair remain one of the most dangerous people in Arizona, worthy of barricades and chains to try to keep me away? Most legislators find it far easier to stick to the stairs. I’m easy to avoid that way and you get the cardio.

My invitation to join me for a meal and discussion of sensible gun reform remains on the table. I hope you’ll see I pose no threat— other than to your toes— and accept this genuine offer.

In the Interest of Fairness

Typical Sunday morning around here; the doors are open, coffee brewed, music floats through the air and I’m hunched over my keyboard. I look up at the sound of a boot scrape and there he is at my door; unexpected and uninvited but as always, welcome. Pearl beats me to the door. She’s making her happy sound winding around his legs like a cat. He’s become one of her favorite humans.

We laugh and joke as he puts a couple of grocery bags on the counter. “What is that?” I ask. He waves it off “You need to eat before you go see the French guys.” I have an interview with a correspondent from Radio France to talk about gun violence.

He called me early this morning and we’ve already had a long conversation that involved a lecture when I confessed I’d been so busy lately that I have forgotten to eat a couple of times.

He changes the subject by encouraging Pearl to jump up. She places a paw on each shoulder and they spent a minute with their heads bowed together. “You taking care of our girl, Miss Pearl? Yeah, she’s a lot of work for you isn’t she?” He commiserates with Pearl all the while scratching and hugging her. She adores him.

“I wish you wouldn’t encourage that” I scold “She’ll think it’s ok and knock someone over some day.”

He only has eyes for Pearl “You wouldn’t do that. Would you Pearly-Pie? Ok, your mom says you have to get down. Go blame her.” He laughs as Pearl stares deeply in his eyes and then snorts and lets go of his shoulders and settles back on the ground. I scowl and mutter “you’re spoiling her.” He climbs over her to get to me “Baby, that ship has sailed. She’s a diva dog alright.”

He comes to my good side, bends down and wraps his arms around me and kisses my forehead. “Hello gorgeous!” He starts to let go but grabs me tighter. “mmmm you smell good.” He buries his nose into my neck and breathes deep and then places a soft kiss there. He scoops me out of my chair and I gasp in surprise and tighten my arms around his neck as he dances around to the music. “Don’t worry baby, I’ve got you.” He smiles into my eyes “I’d never hurt you. You know that, right?” He rearranges me gently in my chair and makes sure I’m secure before completely letting go then brushes a rebel curl of still-damp hair away from my cheek letting it coil around his finger for just a second before letting go. My shaky hands fumble to gather up the errant strands and force them all back into a pony tail.

“Oh my god, I knew you’d be drinking crappy coffee.” He picks up my cup, sniffs it suspiciously and dumps it in the sink over my protest, reaches for the French press and starts water to boil for ‘real’ coffee. As he helps himself to my kitchen, he asks if I have finished the press release I need to get written this morning. I tell him I’m still on it but almost finished. He turns off the burner under the water. “Come on Pearly let’s go run.” He grabs her ball from the drawer and she prances excitedly. As he straightens he leans in close and murmurs against my ear “twenty minutes angel – finish up. We’ll be back.” And they’re gone.

I smile and hum a little as I hurry to finish the press release. Having a deadline is always helpful. I carefully proof it one more time before I send it off. I turn the burner back on and head out the door to go retrieve them from the park but they’re coming up the sidewalk right on cue.

A very satisfied Pearl heads straight for her water and laps it up greedily, then she plops on the cool stone with a happy sigh. We laugh at her antics.

He moves around my kitchen – throws a couple of potatoes in the microwave, turns on the oven to heat, grinds coffee beans for the French press, all the while speaking with a comically exaggerated French accent in honor of my upcoming interview. I cannot help but to be charmed by the goofiness.

He mocks my nearly-empty refrigerator; I’ve been too busy to shop lately. He fusses about my workload and while he dices onions and peppers starts another conversation about how I need to slow down. He pushes the tomatoes and a knife toward me and we turn on the Sunday morning political shows offering our own color commentary as we prepare breakfast together. We speculate on the next few weeks in Arizona from bathroom bills to gun legislation. The kitchen smells of bacon and fresh chopped veggies. He pours a drizzle of olive oil in a pan and starts his frittata.

Our conversation flows from wisecracks to thoughtful commentary to double entrendre and back. He’s boldly flirtatious today. We’ve never been here before and I am nervous. I haven’t had a romantic relationship since my injury. Frankly, I’ve never been able to imagine a man finding me attractive, so I always assume all interest is platonic.

We talk about the transit study, yesterday’s workshop and the concert that followed. He tells me more about his weekend. By tacit agreement, we’ve been very discrete about our growing friendship. We’re both single but our roles in the community will cause some chatter if we were to start a relationship.

We’ve been friends for a very long time. A few weeks ago, there was a shift. He started calling me. First on a matter that we both touched on, then just to talk. I’ve welcomed the attention. I mention a name in relation to some work I’m doing. “Good gawd woman! You and your ‘little brother’ collection. Can you even name two men you’re not mothering?” I’m not sure how to reply so I just shrug and reach for my coffee. He gets up to check the frittata in the oven. As he passes behind me, he lightly brushes my neck with his fingers. I shiver and he laughs “You’re beautiful.” The intimacy intimidates me. I just don’t know what comes next.

My phone rings, it’s the reporter. We work out the details for our interview. We’ll meet at the Japanese Friendship Garden. The interview will take about an hour. He suggests he’ll tag along and when the interview is over, we can enjoy the park and then go find a patio for a glass of wine. I make him promise to stay out of my line of sight during the interview; he unsettles me and makes me nervous.

The frittata cools on the counter while I gather dishes together. He produces flowers out of the frig and a chew treat for Pearl. I’m delighted by the bouquet. He pulls a vase out of the cabinet. I arrange the flowers and put them in the middle of the table. It feels like he’s always been here.

I lean over to hug him, he catches me and holds me there for a moment and stares into my eyes. He traces my cheek with the back of his hand and gently kisses me. My head explodes and I am engulfed by his presence – the warmth of his skin, his scent, the slight taste of coffee still on his lips, the strength in his arms. I open my eyes with a sigh.

“I wish you weren’t paralyzed” he blurts out. I raise my eyebrows questioningly, that’s some timing there. “I’m right there with you” I respond with a sad smile.

He reaches for his coffee and traces the rim of his cup before he takes a big gulp. “You ready for more?” He points to my cup. I nod. What just happened here? The mood shifted. He fusses with coffee for a minute and then announces that the frittata is probably cool enough to eat. I cut it and serve it onto plates and he starts talking about people we both know. I’m feeling off balance and a little ashamed, I’ve done something wrong but I don’t know what it is. I follow him into the conversation as we eat.

“Woman, you look tired” he declares. I admit that my schedule has been over extended lately and volunteer that I would enjoy a down day if I could make one happen. He studies me for a minute. I look down and push my food around.

“Asking you to try to keep up with an able bodied man would be unfair to you” he says out of nowhere.

My head snaps like I’ve been slapped “Excuse me?”

Surely, I’ve misheard.

He stammers “well, it’s just that… I think it would hurt to… umm. Hurt to watch someone live an active life from the sidelines, like sports and hiking and stuff.”

My mouth has gone dry and tastes bitter. I wonder if I’m going to throw up. “What happened to ‘it would take two people to keep up with you’ from a few minutes ago?” Anger is rising and I am working to remain calm. I need to hear him out.

“I’m sorry Jen. Now I know why you don’t date. It is very complicated with the wheelchair and all.” He puts his napkin on the table. I can only stare at him. Tears are stinging my eyes. My mouth tries to work but my brain seems frozen. Sentences will not form. We stare at each other – searching.

He gestures at the clock “ You’ve got to get ready.” I’m numb. I nod robotically. “I’ll clean up” he says.

“No.” My voice gets stronger. I wonder what I’m going to say. “No. You won’t. … I think you should probably get going. I’ll clean up.” He braces his hands on the counter for a second. I think he’s about to say something but he shakes it off.

“OK” He says quietly and in the silence, my heart shatters.

“You should take those flowers too.”

He flinches and starts to speak, to justify his position. I get it but I don’t want to hear it. I put my hand up and turn my head. The first fat tear falls out of my eye and down my cheek. I don’t want to cry in front of him. “Please. Leave.”

He stands up and walks toward the door. As he passes my back he hesitates a second. “I love you Jen. I’m sorry. I just can’t.” He kisses the top of my head, inhales deeply and walks straight out the door. I can’t move until long after I’ve heard his car drive away.

“It just wouldn’t be fair to you Jen” ricochets through my brain, bouncing off every synapse. I clean up the dishes through a haze of tears; bringing order to my thoughts while I bring order to the kitchen. I somehow manage to show up on time for my interview.

“It just wouldn’t be fair to you Jen”

I stay busy all afternoon and into the evening but still, it tramples it’s dirty feet through my brain unbidden. The look on his face. The taste of his kiss. “It just wouldn’t be fair to you Jen” It draws me out of my sleep. It sits with me at breakfast. It flirts with a corner of my brain during my conference call.

We’ll encounter each other as we move through our circles. I’ll smile and quip and try not to remember the burn of his kiss on my neck. In time, he too will develop ‘brother status’ and my heart will remember its place in this world. I won’t venture out of it again.

“It just wouldn’t be fair to you Jen.” How very noble of him.

Sunday Thoughts

Mass shootings are horrible. No doubt. No argument. They are clearly the work of the most disturbed among us.

They do not tell the whole story. Thus, we should not frame this entire discussion about gun violence on mass shootings. How could we ever predict such incomprehensible tragedy?

But, if we choose to; if we are brave enough; we can look at the aspects of gun violence that we can impact.

Every day in the US, the death toll is the equivalent of 3 “Auroras” — roughly 34 people murdered by guns.

Road rage, domestic violence, shooting the neighbor in the course of an argument…Can we explore this intersection? Violence and impulse?

We need to consider how this nation treats our mentally ill. Absolutely. But every country has citizens who are mentally ill; some have good systems for addressing mental health, some not. None of them have the murder rate we do. None have the frequency of mass killings we do.

We need to address our ready access to firearms. NO NOT A BAN. No reasonable person is suggesting a ban so just stop it.
Gun owners (me among them) need to step up and ensure our weapons are appropriately secured. Sure, yours is and so is mine but too many of them are not.
Very few murders are the result of criminal masterminds. There is no illegal gun factory cranking out illegal firearms. Almost exclusively, every firearm starts out legitimate. They find their way into the illegal market when they are lost, stolen or simply acquired through straw purchase. We can agree to fix this can we not?
Background checks. Mandatory safety training. Micro-etched ammunition. How does any of that truly infringe on the right to bear arms?

Acts of Domestic Terror

I wrote this piece in August, just after the mass-shooting in NYC. I just never found a right time to post it. In light of yet another spate of senseless violence, I simply do not know what else to say. Each day in the US, 34 people die as a result of gun violence. Is it any less heinous when these deaths happen one at a time rather than in a “news-worthy” mass shooting?

Wake up. Force my contracted legs to straighten and stretch for 30 minutes, so perhaps I can stave off the muscle contractions that are strong enough to break yet another bone that I won’t be able to feel. Wiggle across the bed and transfer to my shower chair. Roll over the toilet, then across the room into the shower. Wheel back to the bed, park, and transfer back onto it to dry myself off.  Wiggle and log-roll into my clothes and put on my shoes. Then transfer into my wheelchair to get started on my day.

I’ve been awake now for 90 minutes or so. Coffee, make-up and bed-making have yet to occur. All my mornings begin this way, with the work of preparing the paralyzed lower two-thirds of my body for the normal process of daily living. Before my injury, this was maybe a 15-minute process, now it takes between one and three hours a day, depending on my health.

The television is always on for background noise, tuned to a news station to help me pass the time during what has become a mind-numbing routine.  But this morning, in the regular flow of stock prices, weather reports and campaign updates, comes news of yet another mass shooting. This is what, the fourth, the fifth since the Aurora shootings in late July? I’ve lost track. Mass shootings have become so common that it seems they hardly even change the story rotation unless the details are particularly salacious.

Apparently, though, I don’t need to worry:  The talking head assures me that today’s shootings are not believed to be an act of terrorism.

I should feel better, I suppose, knowing that these people were not killed as part of an international political statement. But I doubt that brings much comfort to their grieving families. And I ponder this: Are we any less terrorized by these random people who have guns and personal, sometimes deranged, agendas?

I know terror. I felt it when random bullets pierced the vehicle in which I was riding nearly eight years ago. I’m still haunted by the image of the car window slowly shattering, David’s hand reaching out, the smell of our blood and the final, effervescent tingle of sensation from my toes up:  my nervous system’s frantic, unanswered SOS to my brain as my spinal cord disconnected.

My family and my friends know terror. They felt it when they learned I had been shot in the back, my fiancé shot in the head, and our survival uncertain.

I can only imagine the terror in Tucson that Saturday morning last year, when blood and cries and random bullets were seemingly everywhere. Or the terror in the Aurora movie theater at midnight, where 12 died and dozens were hurt; or in the Wisconsin temple two weeks later, where six died, or the 10 people shot near the Empire State building in New York City just 5 days later, or the 19 hurt in an overnight rash of shootings in Chicago hours before that. Imagine all the dreaded phone calls going out to the families of the victims, confirming their worst fears. That is indeed terror.

Even if none of the incidents can properly be termed “an act of terrorism.”

We have become so inured to gun violence that we now require higher body counts, younger victims or assailants who shock us in some new way for an incident to break into our consciousness.  It is as though being able to write these events off as random or “crazy” makes us feel insulated, safer.

Or does it?

People now arm themselves routinely for trips to the grocery store and outings in their own communities because they believe they could be the next victim of gun violence. Think about that: we consider our own communities so dangerous that we need to be constantly armed. These mass shootings may not be “acts of terrorism,” but aren’t we being held hostage just the same? They may be random, but are they really unpredictable in a country where isolated or mentally ill individuals constantly slip through our social safety nets but have easy access to firearms?

I am the victim of gun violence. I am also a gun owner. I don’t want to ban guns. I want to have a conversation about where the edges are.

How many bullets is it reasonable to carry around? Is it a clip of 9? A magazine of 100? Are there individuals who should not be allowed to possess firearms in our society? How do we identify them? Should there be minimum training requirements for those seeking the right to carry a concealed weapon? Should there be some national uniformity in our gun laws? Are there weapons that should be restricted from civilian ownership?  Does an AK-47 legally strapped to the back of some average Joe in downtown Phoenix constitute the “well-regulated militia” protected in the Second Amendment?

Most people believe there is room for moderation of our gun policies. Many agree that individuals who are known to be mentally ill should not possess firearms. Many agree there are places where firearms do not mix with the venue: bars, sporting events or court rooms, for example.

Our political leaders live in a state of fear of being targeted by supporters of the NRA for elimination from office. As long as the gun lobby continues to hold our legislatures – and even some of our media — hostage to its own agenda, we’ll never have these conversations. Why do we allow our nation to be bullied this way?

In the weeks and months and years post- 9/11, we told ourselves that if we allowed fear to rule us and change our way of life, the terrorists would have won. But when our leaders are not angry enough to stop the epidemic of violence, when the gun lobby protects the gun manufacturers and their stockholders more robustly than it does the citizenry, and when the conversation about all of it can’t even remain civil, the argument can be made that the terror has indeed won. The specific incidents may be domestic, rather than international, acts; but they are terror all the same. And while an armed society could indeed be a polite society, as the adage suggests, there was nothing at all polite about the bullet in my spine.

Christina Taylor-Greene, who was 9 when she was shot and killed in Tucson, had gone to a Safeway to meet a congresswoman. Veronica Moser-Sullivan, who was 6 when she was shot and killed in Aurora, had gone to see a movie. When exactly did they give up their rights to life, liberty and the pursuit of happiness?

You have the right to carry a gun. But what happens when your right to carry a gun intersects with my right to an intact spinal cord?

SCI and the Big C

I pull the door closed behind me and sit in the dark for just a minute thinking that I should go back inside, climb into my still-warm bed and pull the covers up to my nose and start over. Then I plug my ear-buds in and Don Henley and I take off for the nearly two mile push to the hospital.

November mornings can be cool by Phoenix standards. As I pass under the streetlights, I can see my breath. It’s such a rare occurrence here that I make a point of exhaling a big cloud under each light. The chill is welcome against the heat of the workout. I quietly hum along with Don and concentrate on the pavement in front of me. Push by push, I’m drawing closer to the place I don’t want to be.

Half a dozen songs later, the double doors whoosh open and I glide up to the reception desk. My rolling meditation has been successful. My breath is slightly labored from the exercise but my mind is calm. I wish the man behind the desk a good morning and introduce myself. “I’m Jennifer Longdon. I have a biopsy scheduled this morning.”

The “hurry up and wait” begins. I’m registered, change into a hospital gown and assessed. The IV only takes two pokes. Now that I’m prepped the nurse offers to get my companion from the waiting room. She’s startled when I tell her I’m alone. I assure her that I’ve arranged for transportation home and I give her the paper with the transport number and my info; I’ll be too drugged up to manage that myself when we’re through here. I plug in my earbuds, close my eyes and wait.

I don’t have to be alone. There are any number of people I could have asked to come with me. But then they’d be sitting here, trying to look calm while we make small talk or worry silently together. I’ve caused enough drama in my friends’ lives with my spinal cord injury. I just want to get through this and know what I’m talking about before I bring any more worry to my loved ones.

My doc comes in to say hello and go over the procedure. There are 2 sites we’re going to biopsy today. I like him. More importantly, I think I trust him. My paralysis and lack of sensation and other “normal” indicators complicate this diagnosis.

My inability to get onto an exam table at my PCP’s office, the difficulty in positioning me for standardized testing, the general wheelchair inaccessibility of medicine, finding an oncologist who will take a person with my history as a patient and my Medicare has added to the delay and the layers of angst.

It’s time.

As they wheel me back my nurse looks concerned. I joke “I can’t have cancer; I have a spinal cord injury. There’s a lifetime cap on tragedy. Right?” No one ever gets my humor. She gets a panicked look that I might seriously believe that. I smile and pat her hand. “It’s going to be fine. Either way. It’ll be ok.” I give her my iPod and glasses for safe keeping.

I’m finally positioned on the table. The room is cold. I’m staring up at a woodland mural on the light cover over my head. It’s supposed to be soothing. I focus on my breathing and stare at the mural. I try to identify the variety of trees; is that one an elm or a locust? They’re not at all alike but I can’t remember which is which right now.

My doc comes in, gives me an elbow bump of hello and then I’m unaware. As a precaution against autonomic dysreflexia, my doctor has decided to use twilight sedation.

When I wake up, my hands are folded around the call button. Don Henley’s crooning in my ears. I’d mentioned to the nurse that I hate the sounds of the hospital. She gave me my iPod to wake up to. My wheelchair is tucked out of the way across the tiny room. There’s always a moment of panic when I’m alone and my chair is out of reach. I don’t like feeling marooned. I close my eyes again, focus on my breathing and wait. The doc comes in, checks the bandages and my chart, tells me in a measured voice that there was a third site that he biopsied “just to be prudent.”

Suddenly, there it is.

I may have cancer.

No amount of mental discipline can make that go away. If it’s true; and that’s still an “if,” what does it mean to me?

I live a life with paralysis. Can I cope with cancer too? Is it treatable? Do I want to be treated? Is my life, in its current pain-filled form, worth prolonging? Am I willing to fight for even one more day? Would dying from cancer; if I have cancer and if I were dying; be preferable to dying from age in this paralyzed body?

I’m incapable of vomiting; those muscles are paralyzed, will that make chemo better or worse? How will chemotherapy impact my bones already savaged by fractures and osteoporosis? Even as fit as I am, there are times I’m not strong enough to push past obstacles or take on tasks. How will I manage in a weakened state of being? How will I get my sickened, weakened body to the toilet or to the kitchen? Having spent time in a nursing home, I refuse to ever return to one.

Finally, an aspect of my life that has nothing to do with SCI. Or does it? Could this cancer, if it is cancer, have been caused by all the xrays I’ve had post-injury? If I could feel those affected lymph nodes, would I have caught this sooner? If I were capable of getting on and off of an exam table, would I have gotten a more thorough exam earlier? Would it matter?

When this is over, where do I throw my time and energy? Continue on with SCI research advocacy or work to correct these access issues that allow a person living with paralysis to slip through the cracks?

What kind of crazy universe is this?

Can I really have cancer?

I have more questions than answers right now. So for now, I wait.

And try to remember to breathe.

Rest in Peace Preston Longino

I’ve been traveling. While I was gone I received an email via this blog informing me that Preston Longino had passed. I am bereft.

Preston started as just “some guy.” A guy who became my friend. A guy who made the world a little better every day. You know, the ordinary guy that you don’t fully appreciate as extraordinary until he’s gone. I will miss you Preston.

We met when KPHO’s Catherine Anaya did a 3-part story about me and my fundraising efforts through the Rock N Roll marathon. Cath is an elite runner; I was doing the half marathon in my regular chair. The first segment of Catherine’s story ran on a Tuesday in November of 2009. Preston saw it and contacted Cath. Together, they plotted a gift; a racing wheelchair that they believed would make my marathon more enjoyable for me. But, in their research, they learned that I’d tried various racing chairs and never did adjust to them well.

Thus, I had an opportunity to meet this person who had wanted to remain an anonymous benefactor.

Preston still wanted to make a gift. I suggested that he donate a “club” chair to a local group but that didn’t speak to him. So, in the end, Preston asked if he could donate a light-weight crème de la crème wheelchair directly to me. And wow what a chair he gave me. A top-end chair I could never afford and insurance would never approve. I could not have been more surprised.

Preston and I met over coffee and started a friendship. For a long time, we talked daily, sometimes for hours; a mix of current events, daily life and political views. We could not have been more different. I think the things we shared in common were our devotion to our children, a cynical view of humanity and a willingness to argue.

Oh how he loved to talk about his daughter, Christie. His pride in her accomplishments, his devotion was ever-present in any conversation with Preston. She was the center of his universe. While she was away at school, I always knew when he had just talked to her or she was coming home; he was always more animated. Sometimes I felt as though I knew her too, just from his conversations.

Preston was at Mile 9, my toughest mile, that marathon year. He had made a HUGE sign to encourage me knowing that this was the mile I feared. I worried that mile could defeat me. Preston’s sign, his presence and his smile carried me straight up that hill. He was there to celebrate with me afterward.

Soon after, my custom-fit titanium chair with upgraded push rims and special seating was ready. He was there when I received it. Then he asked if I wanted him to go away. He didn’t want me to feel obligated to a friendship because of his generosity. Preston was never an obligation, he was a delight.

As time marched on, he dreamt aloud about one day being able to retire, leave the rat race and live full-time among his friends up north. He loved the snow and the quiet and the rural nature of the White Mountains. Then one day, he was able to follow that dream. He moved north permanently. We continued to talk almost daily by phone, hours and hours. His joy was contagious. He wanted to take pictures, learn to draw, tinker. I sent him a sketch pad and pencil set. We talked how “someday” I would come visit. The city mouse and the country mouse we would laugh. He would tease me about being too urban. I would tease back about the lack of lattes and paved pathways.

Simultaneously, we had health setbacks. He had heart issues. I have a spinal cord injury. We both struggled and fussed at each other. Our calls became sporadic. One day we squabbled as usual over something I can’t even remember but I’ll suppose it was politics. This time neither of us picked up the phone the next day.

Days stretched into weeks and then calling became a thing. I didn’t know how to pick the phone and just say hello. I was certain he never wanted to hear from me again. Months later I sent a very casual email but he didn’t respond. I let it go. Then, with phone changes and computer crashes, I lost his contact info.

But Preston would return to my thoughts from time-to-time when there was an interesting political turn of events or I would get out my sketch pad or when my very special wheelchair would make a difference, I would think of Preston.

Now he’s gone.

Why the hell did I not try harder to reconnect? There was always “someday” and now there isn’t.

Preston Longino was a hell of a man. He had a huge spirit and a love of history. He was ethical, generous and kind. He was smart and quick and sharp. I enjoyed every minute.

I am struck by the irony that his spiritual heart was strong in directly inverse portion to his physical heart. I pray his final days were spent in the place he loved with the people he loved.

I’m sorry Preston. I hope you forgave me. I will miss you my friend.

Rest well Preston Longino. You left quite a mark.

2012 ADA Awards and Recognition Ceremony for the City of Phoenix

Aside

Today, we celebrated the 2012 ADA Awards and Recognition Ceremony for the City of Phoenix. We had a great turnout and participation. Mayor Greg Stanton and City Manager, David Cavazos gave remarks and I was proud to offer our keynote speech today.

Perhaps my favorite part of the day was meeting our MCDI grant recipients and learning how the grants have impacted their lives. It was great to also meet many of our ACE volunteers who patrol the City’s parking lots to ensure that accessible parking spots are available for those who need them.

Since I’ve been asked by those unable to attend, following is the text of my keynote today.

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I want to first acknowledge and thank so many of the people who have made today possible…

Outback Steakhouse who generously donated today’s refreshments and Event Coordinator Robert Turtula

The EOD staff who worked on this event tireless and graciously:

Marquita Beene
Reyna Rodriguez
Jennifer Battaglia
Maria Fruciano

The MCDI Commissions who served on the event planning committee:

Larry Clausen

Rafael Figueroa

Kai Willow Kaemmerer

Erica McFadden

Jean Moriki

Jason Stokes

Of course Mayor Greg Stanton, City Manager, David Cavazos, EOD Director Lionel Lyons, and the entire City staff who make this event and day-to-day life in the city of Phoenix possible. And, my dear friend and our emcee for today, KPHO Channel 5’s three-time Emmy-award winning weekday anchor, Catherine Anaya.

October is National Disability Employment Awareness Month and this year’s theme; “A Strong Workforce is an Inclusive Workforce:  What Can You Do?”  promotes the benefits of a diverse workforce that includes workers with disabilities, who represent a highly skilled talent pool. More than 30% of the residents of our city have a disability. I am proud of the commitments that our city leaders have made to universal access and inclusion.

However, nationally; more than 59% of people with disabilities who are able to work cannot find jobs. Those who are employed are more likely to be under-employed than their able-bodied peers. Perhaps this explains why people with disabilities are significantly more likely to start their own successful businesses and create jobs for others.

Here’s the good news: Year-by-year, month-by-month, person-by-person, through awareness campaigns like this event, removal of barriers both physical and social, and inclusion commitments that’s all changing.

While introducing this year’s initiative, Senator Tom Harkin said: “It is time to take the next step, to open wide the doors to the workplace for our citizens with disabilities. In doing so, we will increase our workforce diversity; tap into a valuable, talented, under-utilized population, and marshal all of our available resources to maintain America’s leadership in the global economy.”

The City of Phoenix has already embraced this philosophy. As a disability advocate and Chair of MCDI, I make it a point to look for examples of inclusion in my everyday life. I am proud of my city when I see a workstation configured for an employee who uses a wheelchair, communication technology for an employee to assist with verbal communication, ASL interpreters at City events, captioning on videos and live streaming of city meetings and events to ensure the greatest possible access just to name a few.

And in the private sector, companies like Outback, Safeway, Walgreens, Lowe’s and Best Buy have shown that it’s possible to employ people with disabilities in a manner that spurs innovation, improves morale, increases productivity, lowers turnover, and improves the company’s bottom line.

The City of Phoenix is a rich tapestry of diversity. Due to the relative youth of our urban development, we are also very much a post-ADA city with a growing post-ADA workforce. By continuing to lead through example, Phoenix encourages other municipalities as well as private sector business to tap into this fertile pool of under-utilized talent.

So, back to today’s theme, what can you do? Examine the practices and assumptions of your organization for outdated and inaccurate portrayals of individuals with disabilities.  Stay vigilant to physical barriers and practices that prohibit full inclusion. And most important of all, see us for who we truly are: PEOPLE with disabilities.