The Race for Edie!

$237,665 of $250,000 goal

Raised by 1,304 people in 20 months
Created May 20, 2017
Rosamund Else-Mitchell
on behalf of Edie Perkins
Our dear friend Edie Perkins is a one-of-a-kind person. She is a kind, adventurous, fiercely independent woman and athlete whose life changed irremediably in a few seconds as the sun rose over the ridge one morning a few weeks ago.

Edie needs our help now.

Last year, Edie moved from New York City to Los Angeles to pursue a new job opportunity and embrace the free-spirited, outdoor life that perfectly complements her passions: long-distance cycling and marathon running.

On April 20, 2017 while on a solo morning bike ride, Edie was hit head-on by an SUV. The driver was momentarily blinded by the sun. Edie broke seven vertebrae in her neck and back and 11 ribs; her legs were torn up, her spine crushed. Her bike helmet is in eight pieces; it is truly a miracle we still have her with us.

Since the accident she has had several emergency surgeries. Edie is currently paralyzed from the chest down as a result of her spinal cord injury. She still wears the metal halo brace, to help her heal. As she said, she is super-lucky to have "all her marbles".  And she really does.

Recovery from this kind of accident is often painful, lonely, and overwhelming. In addition to a daily regimen of PT, OT and other therapies, Edie is handling mountains of paper work, insurance claims, legal issues, and worrying who will care for her beloved cats. We expect her insurance settlement will barely cover a year of her recovery.  And her expenses mount by the day.

According to the Christopher & Dana Reeve Foundation, the yearly expense for someone with a spinal cord injury like Edie’s (paraplegia) is $113,423.  Many expenses and treatments are simply not covered at all: home modifications to accommodate a wheelchair; adapting a vehicle to be driven with hand controls; ongoing out-of-network healthcare needs; and the best rehab she can get.

If you know Edie you know she is dead set on 100% movement of her arms and hands and mastering that wheelchair (you know she will).  Every day she progesses a little further: pulling herself up in bed, getting in and out of a wheelchair.  Paralysis and no feeling in her core makes this unfathomably hard and slow work.  She's told us that every night she thinks about the increments of progress she is making.  It is her hope that one day she will be able to move to a rehab facility that specializes in spinal cord injuries.  After that she will move to a ‘transitional’ house where she will learn – living with others with similar injuries – how to regain her everyday freedom and independence: cooking, bathing, driving, and living her best life.

Reminder: we’re talking about Edie. Edie Perkins! The woman who some years ago got on her bicycle in Portland, Oregon one day then RODE TO BROOKLYN!!

We have all said it to each other since we heard about the accident: if anyone can do this, Edie can.  If anyone can face the hardest physical challenge of their life, Edie can.  If anyone can find the strength, Edie can.

Her grit and focus humbles us all.

Edie deserves the best.  We started this fund  because of you.  We created this fund in response to all the messages:  from those who have run with her, cycled with her, lived with her, worked with her, and loved her, and want to help.

Every single donation will go directly to Edie and will be used at her discretion for her recovery.  We want to ensure she gets the best from our health care system,  insurance company assistance, or a tricked-out racing wheelchair.  We are here to support her as she continues her long-held tradition of sailing out front, while we eat her dust, as she carries on with the determination we’ve come to expect.

We want to ensure that she has the best chance to recover to be her best body and best self.  It will be long; and it will be grueling.

Please show her the love. Donate Now.

Thank you for all the kindness, prayers, visits, and positive messages so many of you have sent and shared. to Edie.  Please keep up the missives of support and motivation to her.  She truly loves hearing from each of you.  We promise to keep you updated regularly on Edie’s progress.  We know how many people are rooting for her.

Let's do this and help Edie regain an independent, active, and beautiful life.

Your donation today will ensure that can happen.

With endless gratitude,

Rose Else-Mitchell, Kim Goodman, and Edie
XXX

roseoftheworld@hotmail.com
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Update 29
Posted by Rosamund Else-Mitchell
7 days ago
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Part 2/2:

Which brings me to where I am today: The Victory-by-Defeat-? phase. Victory is questionable. Defeat is not. The health issues are winning. My approach is that by raising the white flag, I will overcome them. It was when I got accepted into the NYC Marathon and when the Challenged Athletes Foundation (CAF) invited me to do (parts of) a ride on my handcycle from LA to San Diego, that I decided to start training despite feeling like crap. Remarkably, it made me feel better. I still had the issues, but I was able to put them aside while I did what I wanted to do. Distraction. It’s an amazing tactic. Having a goal and focusing on it helped me to see that I can live with these discomforts and still do what I want to do. And live the way I want to live. So that’s where I am today. Some days are more of a struggle than others. But all in all, it’s enabled me to do some pretty cool stuff.

The Highlights
Naples Half Marathon. In January I participated in my first handcycle race, a half marathon. It was awesome.
Driving. In February, I modified my old Honda Civic by adding hand controls. I’ve put more miles on my car in the last ten months as a paraplegic than in the previous seven years! (Probably cause I was on my bike or running all the time.)
First solo flight back to FL. Had a great visit with my parents and their (my) friends.
CAF Women’s Paratriathlon Training Camp. This was a life-altering event. One of the things that snapped me out of Phase II and propelled me to Phase III. I met ten women who, except for one other, had been living with SCIs for between three and 15 years. They zipped around in their chairs. Hopped in and out of cars. Raced. Cycled. Swam. Drove. Raised kids. Had boyfriends. I got to ask them questions. They told me how they coped. I learned that it could be done. I looked on with envy but also aspiration. I went home motivated.
NYC Trip. This, too, was life-changing. On the heals of the triathlon camp, I took my first solo trip (although I was rarely alone) to a big city. Staying in hotels. Navigating the streets. Trying to meet up with friends on time, but always being late. The beds in hotel rooms were too high. The benches in showers were so far away from shower controls that they couldn’t be reached. The bars were BEHIND the toilets rendering them useless. The sidewalks would come to an end with no curbs to roll down. I’d arrive at the bar, only to be greeted by a step. I’d go to friends’ houses and two people would need to carry me into the bathroom and plop me on a toilet. I felt defeated every where I went. I thought I was further along than I was. My confidence was shaken. I realized how ADA compliant Los Angeles is. How spoiled I’d become. Defeated as I felt, I went home determined not to be such a wuss.
Race for Edie. The reason for going to NYC was because one of my best friends, Amy May, rallied friends, co-workers, runners and cyclists to organize a fundraiser 5K race in my honor. Over 200 people came out. I saw so many old friends and acquaintances. So many people who cared. I was in awe. And a bit stunned by it all. It was moving beyond comprehension. And left me feeling lifted.
Trip to MA and NH. I went home over the summer and got more time with my parents, my east coast relatives and friends. I even got up to Sugar Hill, NH where my uncle built a ramp into our house so I could spend time in one of my favorite places and see relatives up there.
NYC Marathon. I went home from the (above mentioned) NYC trip, feeling filled with love and motivated by all that had happened in the previous month. I started training for the NYC marathon, which turned my mood around. It was then that I learned the power of distraction. Five months later, I was ready. Being back in NYC and racing the marathon was a thrill. I had run the course seven times before as a runner. Doing it in a handcycle and having so many friends cheering me on along the course, proud of how far I’d come, is too hard to describe. So I won’t.

The Lessons learned
Old adages really are true. Now I GET them though. On a whole new, profound, and clarity-inducing level. Oddly, I think I learned most of these while struggling to get on and off of toilets.

Breath. Breath, stay calm, focus, plan, breath. Here’s an example: I’m at all-day meeting for work and need to go to the bathroom. My colleagues are in a conference room waiting for me to get back to restart the meeting. I’m on the toilet and I can’t get my pants up. I know everyone is waiting for me. To pull up my pants, I need to grab the grab bar and roll to one side so that the leg/butt cheek is lifted off the seat and I can — with the other hand — pull the pant up a bit on that side. Then I roll to the other side by leaning on my wheelchair on opposite side of toilet. Same thing. I inch the pants up on that side. And so forth. Problem was, on this toilet — as with many others—, every time I roll to one side the seat slides with me. I can’t get the pants up. My instinct: Panic! Try to muscle them up. Stop thinking. Start sweating. Rush. Use force. Swear. Panic some more. Hmm. Despite that being my go-to approach, it doesn’t work. I’ve had to learn to stay calm. Envision success. Make a plan for getting there. Focus on the plan. And breath. Mindfulness. It really works! I need to practice this new skill about 100 times a day.

Focus on progress, not perfection. All the things I’ve had to learn to do —like transferring into my car, breaking apart my wheelchair and hoisting it over my body into the passenger seat — have been daunting. They seem impossible at first. Focusing on increments of progress rather than the distance to mastery, makes the learning process tolerable. Enjoyable, even. You really can do what you put your mind to. It just takes a lot of practice and commitment. But seeing the change happen is rewarding and motivating. Focus on the progress.

Be flexible and ready to adapt. This is what I took away from the NYC trip. Things are rarely going to be just-so. Being willing to adjust plans according to the circumstances is critical.

Find a community of peers, and learn from them (well, from each other). In many ways I feel like a child, still learning the skills I need to cope in the world around me. The problem is, unlike kids who have people everywhere to serve as models for doing basic things, like get in and out of cars or even just walk around, I don’t. Any time I’m at an event with other people with SCI, it’s amazing. Immediately we start sharing how we do everything from going to the bathroom, getting dressed, dealing with common medical issue. In just this short time, I’ve learned that having a community of peers is critical to navigating the world around me.

Love, relationships and time spent with family and friends is the most precious thing of all. One of the gifts of all of this is that in the last almost-two years, I’ve had more quality time with family and friends than I’d had in the previous 10 years combined. My relationships are deeper. I understand the importance of these relationships in a whole new way. Making the time for them and cherishing every minute is more of a priority now than it ever was.

I remain incredibly grateful to you, my friends, family, supporters, for all you have done for me. I’m in awe of how much care, concern and support you have shown. It lifts and it motivates me. Thank you. I wish you all the best for a healthy, rewarding and happy 2019!
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Update 28
Posted by Rosamund Else-Mitchell
7 days ago
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Edie has shared two updates about her progress and how she is doing today (we split to fit so read this one first). I could tell you that they are effortlessly inspiring and 'very Edie'. But you'll see for yourself. Please post and share. Rose & Kim Xx

Happy 2019!

In just a few months — on April 20 — I will hit the 2-year anniversary of my accident. That marks the beginning of Year 3. Thank god for that! All the spinal cord injury (SCI) vets say it takes three years to 1) adapt to your new body (“What? My calves are burning. Oh! Of course. That must mean my bladder is full.”); and 2) for your body to adapt to the frenzied, disrupted, messed up circuitry that goes from brain, to nerves, to muscles and back when your spinal cord is crushed. Year 2 has been many things, but it has not been easy. I thought I would take New Year’s Week to reflect on — and share — my ups, downs and lessons learned.

The year can be broken into three segments. The first, Mastering My ADLs (or, activities of daily living as they are known in the rehab therapy world). While infuriating and hard as hell, this phase was also rewarding. It’s when I got proficient at things like getting dressed, maneuvering my chair, transferring from chair to bed, using the toilet, cooking, cleaning. Tantrums were thrown, tears were shed. But I also noticed improvements. Daily. And nothing motivates like progress. So many firsts. All in all, it was a pretty rosy and rewarding time, filled with hope.

Then came the Just-Let-Me-Be-Paralyzed phase. Ugh. I started experiencing some of the negative physical side effects of having a spinal cord injury. It was one thing after another. Scoliosis-forming spasticity (many people with SCI get uncontrollable muscle spasms in the paralyzed parts of their bodies. In my case, I get them in my right hip and the right side of my abdomen. It is cinching me up in a C-shape, causing my spine and body to curve in an uncomfortable way). Constant incontinence-causing UTIs. Nerve pain. And a bloated, distended gut that still to this day won’t go away. Most people think the worst part of being paralyzed is not being able to walk. Understandable. But not so. It’s all the other stuff — bowel and bladder issues, an under-functioning digestive system, and living with chronic pain. Experiencing all these things after months of progress, made me feel like I was going backwards. Things got dark. I found myself in bed a lot. Waiting for it all to pass. It didn’t.
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Update 27
Posted by Rosamund Else-Mitchell
2 months ago
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It's been a long time since I updated this generous group of fans and friends of Edie. I am compelled to ask for your support -- in whatever way feels right -- for Edie. Because on Sunday 3rd November in New York City, Edie will do a remarkable thing. She will be running her 8th NYC marathon. With her hand cycle. She will be in Bib #347. Start time 8:52 am.

Revisiting the route, her athlete tribe, her friends and supporters and the turns in the road will be both strengthening and emotional.

Maybe you're on the supporter path already -- please look for her and shout her on. Maybe you've suddenly recalled how this story touched you. Either way, drop her a note, make a sign, send a hug to her through the universe, or make a donation here.

Edie has been keeping us up to date herself on Facebook. Her story has also featured in several media outlets with her desire to give back and work with other challenged athletes, and her advocacy for those who experience the world differently after SCI.

Edie! May your indomitable spirt drive you forward. We love you!
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Update 26
Posted by Rosamund Else-Mitchell
8 months ago
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It’s Tomorrow! Sign up to celebrate Edie and together Walk/Run a lovely Spring Morning in Prospect Park, Brooklyn

https://runsignup.com/Race/NY/Brooklyn/RaceforEdie
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$237,665 of $250,000 goal

Raised by 1,304 people in 20 months
Created May 20, 2017
Rosamund Else-Mitchell
on behalf of Edie Perkins
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