"I lost my fear. I became very, very, very aware of my mortality," she says. "There's just now. And I can't put stuff off."

Keeping busy has become a survival tactic in a very real way.

A common misunderstanding about spinal-cord injuries is that you lose all feeling below the injured area. Not so, Longdon says. She feels pain almost constantly — intense, burning pain called neuropathy. Drugs don't work; neither does alcohol. The only thing that works, she says, is to keep really, really busy.

Jamie Peachey
Days before their injuries, Rueckert and Longdon taught martial arts to children in a village in Fiji.
Courtesy of Jennifer Longdon
Days before their injuries, Rueckert and Longdon taught martial arts to children in a village in Fiji.

She's got that one down.


Her day begins as it does for most of us — with coffee and Facebook. But first, Jennifer Longdon has to get out of bed.

She rises at 5 — always has.

"Honestly, as soon as I snap my eyes open, I try to figure out how I am," she says.

If you were to list the worst things about her spinal-cord injury, Longdon says, not being able to walk wouldn't even make her top 10. Her morning routine explains that pretty well.

She checks to be sure her legs didn't spasm in the night (which could mean broken bones she can't feel) and, in the winter, throws on a hat and scarf because her body doesn't regulate temperature well anymore.

She throws the covers off completely, careful not to trap herself, and pushes aside the pillows she's arranged around her body. Then, she must negotiate with her dog, Pearl, who has a habit of trapping her in bed — sometimes because she can sense better than Longdon when something's not right with her master's health.

She grabs the sheets, pulls hard into a sitting position. She lifts her butt, pulls it over, then her legs one at a time. She throws the covers back over the warm spot so Pearl isn't tempted (the dog is not allowed underneath) and picks up a mirror to check for pressure wounds on her skin.

She scoots into her wheelchair and heads to the bathroom.

"I go to the toilet. I do what everyone else does — except, for me, it involves rubber gloves and lubricant."

She works her way into her shower chair, then back to bed to dry off and put on lotion. She stretches — really important. Then she gets dressed, putting her legs straight in front of her and rolling to get her pants on.

"On a good day, I can do it in three rolls," she says. A bad day it takes five or six. Sitting up to snap on a bra is an extra challenge.

"I'm a bowling ball on top of a wet noodle," she says ruefully. In the early days, she had to nap a lot.

Then it's time for shoes.

She used to love shoes. Now she hates them. They must be flat, accommodate swelling. They can't fly off. She's tried double-stick tape and once, for a special occasion, duct tape, which can get dangerous if you don't remove it carefully. She says she's given up on fancy shoes; pretty earrings and makeup — when she's going out, anyway — make up for them.

By now it's 7, and it's time for coffee. She makes half a pot, eats breakfast (Longdon admits to a sweet tooth, so it might be a piece of leftover limoncello Bundt cake) and opens the laptop.

Her foray into social media began with a community website that offers medical advice for people with spinal-cord injuries. Then she joined Facebook to play Scrabble with her "Care Cure" friends — and it took off from there.

"Facebook is a drug. I can quit it anytime. It's a beer on Saturday; next thing you know, it's a six-pack a night."

She does get un-friended. "I am an acquired taste," she says.

Longdon does a lot of advocacy for people with disabilities. And she also works on gun-control measures, particularly since the 2011 shooting of Congresswoman Gabby Giffords in Tucson and last year's Newtown school massacre in Connecticut.

She's testified against measures to increase access to guns and supports universal background checks, but she does not take it as far as you might expect, given her personal experience.

"I don't think we should ban guns. Not at all," she says.

Not handguns, anyway.

"You should not be able to put 11 holes in a first-grader," she says. In any human being, she adds.

She was shot by a handgun, and now, she admits, when she sees one, it's like looking at a black widow or a scorpion. She talks about how hard it was to tell her story at the Legislature last year during the guns-on-campus debate. She got upset and went out to the hallway. A police officer there to testify came out to comfort her.

She shakes her head. Cops are the ones who have it hard, she says.

"You know," I say, "you don't have to do this. You don't have to put yourself in such painful positions."

Longdon says, "Yeah, I do," looking away, her eyes filling. She looks back.

"Yeah, I do."

It's not just a matter of being busy. Maybe it's the failed marriage and rough times with her son (Matt is now a journalism student at ASU and the two do have a relationship) or gratitude for survival. Certainly, it has something to do with the friends who showed her kindness after she was injured. Longdon feels compelled to help others. At first, she couldn't do much, she says; she cut her hair and gave it to Locks of Love, the organization that makes wigs for cancer patients. As she got stronger — and more vocal — it's grown into positions with titles: chair of the Mayor's Commission on Disability Issues and board member (among others) of the Statewide Independent Living Council and Arizonans for Gun Safety. One of her favorite gigs: touring other people with disabilities around the state capitol, teaching them how to advocate for themselves.

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5 comments
Pat Elliott
Pat Elliott

Fantastic. We need to see more stories like this and hear from more journalists like Amy Silverman who can tackle difficult topics with sensitivity and accuracy.

Saracat
Saracat

Jen is one of the most incredible people I have ever met. Her courage and compassion are an inspiration and her sense of humor is hilarious

stefnj2000
stefnj2000

Jennifer is the epitome of strength and resilience. She is an inspiration to many and a true voice for wheelchair users, those with spinal cord injuries and others.

This article takes us into her life in the most intimate of ways. She allows us to know what her struggles are and that they don't stop her from countless hours volunteering and committees. I am proud to be a Phoenician with Jennifer Longdon.

kennedymsw
kennedymsw

Wonderful article and a great spokesperson and advocate for so many people and causes.  I hope Jennifer does run for office she needs a larger platform than facebook. 

donnagratehouse
donnagratehouse

Jennifer Longdon is the coolest person ever. I'm honored to know her. 

Great piece, Amy. One of your best. 

 
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