Nike is back with a new shoe following the same disability-acessible model that made a splash over summer.
In July 2015, Nike and professional basketball player LeBron James debuted an incredible new shoe with a special zip-up technology that allowed people with disabilities to put on and fasten up the shoe themselves. A special edition of the Nike LeBron Soldier 8, the shoe was inspired by a teenager named Matthew Walzer who lives with cerebral palsy and wrote a letter to Nike asking the company to consider developing a shoe designed for people who have trouble tying shoelaces.
The second installment follows closely on the previous model with it being slip-on style and featuring straps to enhance the fit. There is a new added zip construction on the side that wraps around the heel and connects to the upper strap. As of right now there are two new colors, according to Kicks On Fire, a website about shoes. It will debut in Spring 2016 and hit retail stores soon after that.
There is an old saying I’m often reminded of since living with chronic illness: “Your struggle today is your strength tomorrow.” While I believe this statement can be true sometimes, unfortunately strength does not always seem to swoop in on autopilot when someone lives with chronic illness.
A chronic, incurable illness can leave you feeling broken, tired, concerned and vacant. Consider that some people also have more than one illness. I’m not a person who feels strong in many ways. Many believe those in chronic pain must be strong in order to live with pain on a longterm scale. I have just always seen it as coping because it is the only choice I am given, not necessarily as strength.
Inner strength, whether we are aware of its presence or not, is something we depend on in great amounts to get us through the week. Yet there have been occasions over my decade of being chronically ill, which for the most part has been spent housebound, that I’ve just wanted to throw in the towel and give up. It’s not a good way to think because it can unfortunately turn you toward a hopeless mindset. However, I would be fibbing if I said I had not questioned it at times.
When you live with a rare, incurable illness, you often feel like you are continuously revisiting parts of your life. Although you are faced with many new hurdles to cross, you are frequently reminded of the every day struggles, too. It can begin to feel like you are on a constant treadmill of worry, concern, fear, positivity and negativity.
The longer I have lived with chronic illness, the more I have found myself questioning and trying to understand why this has been my lifestyle for over a decade, one that every day never ceases to amaze me in many ways. I question how illnesses can be so persistent and disruptive of my lifestyle, and how life can change dramatically when you lose your health.
Having a chronic illness and disability makes the fight even harder. The fight to live over existing. The fight to get through any big or small occasion, any social event and anything that can bring you great joy. It can feel like there is always an obstacle lying in the way, usually in the large shape of an illness that in no way decreases or disappears for you to go about your business. However, we do not have much choice about our genetics or the illnesses within our bodies, so we can only get on with it day by day.
Over the last few weeks, I have highly doubted my strength, even the smallest ounce, and without this you usually end up feeling incredibly defeated. When pain levels reach maximum exposure and you struggle to handle this lifestyle, the fear that already exists in your mind becomes your worst enemy. It escalates, causing you to question almost everything from your present to your future, when really we don’t know what tomorrow holds. I have accepted it will most likely contain pain, but I don’t know if that’s the pessimistic side of me.
Strength never seems apparent on my lowest days because my pain feels like it defeats me. Yet it’s there, in all of us. It is what keeps us going, fighting and breathing. It makes us try again even when we feel like it may be impossible. We don’t know what the future has in store for any of us. Add pain to the equation, and you could have fear about the future, but ultimately, you can also cling to the smallest flame of hope. That flame might die, but something will reignite the spark you can cling to.
Perhaps you hit many brick walls along the way that can deeply hurt you. This is inevitable because nothing is smooth sailing, especially in illness. However, these occasions also add to your resilience. Fall down seven times, stand up eight, as they say. I do not necessarily think this setback I’ve experienced is a bad thing. It can be distressing, but it can also prove that I can slowly come out of the other side. I know to expect its reoccurrence, yet I am also reassured these periods of time do not last so deeply forever. I accept that grieving and feeling defeated become two constant attributes in living my life with multiple, chronic illnesses. This time has allowed me to reevaluate my mindset and readjust my sails to face the strong force of wind that is longterm illness once again.
People with chronic illnesses of course look to doctors for guidance as they navigate their medical journeys. The right doctor (who’s not always easy to find!) can be a source of support and encouragement beyond their expected medical duties.
3. “‘You know your body better than anyone else, and don’t let someone tell you that you don’t. If you tell me something is wrong, then something is wrong, and we will work to figure it out.’ — his response during our first meeting after having spent 10 years trying to find a doctor who listened and believed my symptoms… turns out it was never just in my head like my previous doctor told me.” — Tabitha Hodges
4. “‘If you play the comparison game, you will lose every time. Someone out there always has it worse, and someone out there always has it better. Your reality is your reality. Don’t compare.’” — Delaina Conour
5. “Neurologist’s comforting words: ‘Everyone needs a reason to get up in the morning. You can find yours.’” — Laurie Ann Marrano-Johnson
6. “‘You need to be your own health advocate. That is your full-time job right now. And you’re doing a fantastic job.’” — Laura McGinnis
7. “‘Set realistic and achievable goals, then make sure you acknowledge how well you have done when you achieve them.’” — Nicky Treagus
8. “‘You need to put as much effort into yourself that you put into helping others, because you are worth it.’” — Katie Hirsch
9. “My surgeon once told me, ‘It doesn’t hurt to try.’ I’ve used this advice a variety of times when trying something in my life that I’m not supposed to be able to do because of my disease.” — Patricia Chamberlain
10. “Keep a journal of everything that happens and report any changes.” — Lauren Komo
11. “Doctor told me when my body says ‘Sleep,’ do it. Don’t worry about keeping a routine. It’s let me be able to do more because I know when to stop.” — Sonya Vermillion
12. “‘I know it’s hard. I know sometimes you feel like it isn’t worthwhile to keep trying. But you have done and are doing amazing things with your life… and that matters. You matter. Please keep fighting for you.’” — Selena Marie Wilson
13. “‘You’ve been through the ringer but you’ve made it this far. Now isn’t the time to give up. I think your break is just around the corner.’” — Diana Castaldini
14. “‘You are still the same person you were before, maybe just a little slower.’ From my rheumatologist. He was right — a week later I signed up for the 2001 Honolulu marathon. I walked it — and was the last person to finish in 10 hours and 56 minutes. I called Dr. Lawson from the finish line.” — Stephanie DeNicola Turner
15. “‘Pace yourself. This one is tough, but you eventually learn your limits. The key is to rest when you need to and not push yourself too hard.’” — Hannah Mason
16. “‘Let go of people who only want to be part of your life when you’re healthy. You need people who support you in the best of times and the worst of times, not just when it’s time for them.’” — Felicia Renee
17. “‘Find a thing to do each day that brings you happiness, even if it’s a little thing like complimenting someone or watching your favorite TV show.’” — Becky Rider
What’s a piece of non-medical advice your doctor gave that really helped you? Let us know in the comments.
Nicholas and Jesse Faris’ 2-year-old daughter Brooklyn has Alagille syndrome, and as a result of the rare genetic disorder, Brooklyn was experiencing liver failure and in dire need of a transplant.
After a year of waiting, the family, who live in Memphis, received the call they’d been waiting for: A liver was available in Chicago, reported WREG Memphis. The surgery had to be performed within 24 hours of the organ donation, but when a snow storm hit Chicago on Wednesday, more than 1,300 flights were cancelled, and the family was unable to book tickets.
The family posted messages on social media asking for help, and according to Fox 13 Memphis, FedEx stepped in. FedEx, based in Memphis, flew the Faris family to Chicago on one of the company’s private cargo planes, and then transported them to the hospital.
“When we learned of the extraordinary circumstances and extreme urgency of the situation with Brooklyn, we knew we had to do something,” Patrick Fitzgerald, Senior Vice President of Integrated Marketing and Communications at FedEx Services, told The Mighty. “Thankfully, we had the network and resources available to make it happen for this family in our hometown of Memphis. The entire FedEx family is pulling for a quick and full recovery for Brooklyn.”
The past 24 hours have been UNREAL. There are so many amazing, good, kind people in this world. Memphis has come together in the most amazing way for Brooklyn. Over 1,300 Chicago flights were canceled due to weather. Planes could not land… Except FedEx planes. So FedEx flew Brooklyn there — for FREE. Today we pray for a successful surgery. We pray for a rapid recovery. We pray for years of good health for Brooklyn. And we pray for comfort and grace to fall on the family that is mourning the loss of this brave person who has given sweet B the biggest gift.
Brooklyn went into surgery prep around 10 a.m. on Thursday, and by 1:30 p.m. the family revealed the medical team was in the process of taking out Brooklyn’s old liver. The family added on their Facebook page, “FedEx. You have outdone yourself,” and explained that they’ll now be able to use the funds they’ve raised for expenses “besides chartering an emergency flight at 1 a.m.”
*UPDATE**It’s GO TIME everyone! The Faris family just received the call. THE CALL. There is a liver waiting for Brooklyn in Chicago today. Prayers for the family’s travel are very appreciated! If you’ve already donated to COTA on behalf of Brooklyn—please consider giving a little more. If you’ve shared the link to the website and the video—PLEASE SHARE AGAIN! Memphis has been so incredibly generous to the Faris family and now the real need begins. Let’s see sweet Brooklyn all the way through! Today we pray for Brooklyn’s healing and we praise God for all He is doing! http://www.cotaforbrooklynf.com/
“Stop staring! It’s rude,” the embarrassed mom loudly whispers to her daughter before she drags her away from us. My daughter Campbell, who is in a wheelchair, is fortunately looking elsewhere at the time.
I just stand and watch the situation unfold and observe the child as she looks at her mom with a guilty face and then mutters, “I’m sorry,” before turning back once more to look at us.
“Don’t be sorry,” I silently think to myself, “It’s OK to look. Once you get to know her, she’s not so different from you.”
I smile at her, and for a moment she returns the smile. There is a small connection forming.
“What’s wrong with her?” she asks, looking halfway between her mom and myself.
I want to answer her, “It’s OK to ask,” but I don’t get the chance.
Her mom averts her eyes from us and pulls her away even further, making it impossible for me to hear what she is saying.
Maybe she wants to know how old Campbell is or her favorite color. Maybe she wants to know if she likes Taylor Swift or Selena Gomez.
This isn’t an uncommon experience. Sometimes it might not be as obvious. It may just be the mom whose child is looking at Campbell in the waiting room at the pediatrician’s office, who smiles politely at us before she picks her up and moves across the room.
I smile back but silently think, “I wish you had stayed.”
Another missed opportunity.
In general, many of us are taught not to stare. Especially if it is at someone who appears “different.” We are told it is rude.
But are we really sending the right message?
As the mother of a child with a craniofacial condition who also happens to be in a wheelchair, I say “no.”
I think by telling our children not to look at people who seem “different” or to ask questions, we make those people stand out even more.
Children are naturally curious and ask questions. Let them. You may be surprised that most of the time, it might be a wonderful learning experience, maybe even making them a new friend.
Just recently, a spunky, blonde 8-year-old girl approached us at an archery tournament. We were standing in line at the concessions and she had been staring at us for a while before she started asking questions.
“Why is she in a wheelchair?”
I explained that Campbell can’t walk and has to use a wheelchair to move around. Then I showed her how the wheels on her chair light up, which she thought was super cool.
“Hey, look, my shoes light up, too!” she said excitedly as I smiled at the similarity.
“Are her legs broken? Because I broke mine last year and had to wear a cast. It was really hard to walk.”
I explained that her legs were not broken but she was born this way. And even though she can’t walk, she can get around with her wheelchair.
“That’s so cool. Can she go really fast like I do on my bike?”
I laughed a little before I told her how her brother enjoys pushing her fast, especially in the grocery store.
“Oh, I’m sorry,” she said with a look of pity on her face. I was a little confused before I realized what she was talking about.
She patted Campbell on the shoulder and said, “It’s OK. I’ve got a big brother, too. He drives me nuts!”
Then she asked if it was OK to push her as we made our way closer to the concession stand. I agreed while I listened to her ask Campbell, “Hey, do you like Taylor Swift? Because I love her.”
Campbell nodded her head excitedly, and I confirmed that yes, she does like Taylor Swift. They both smiled at each other as the little girl pulled out her phone and started playing “Shake It Off.”
I stood there for awhile watching these two little girls listen to song after song, smiling and laughing, the little girl pushing Campbell’s chair to light up the front wheels as her shoes did the same.
I was thankful she had taken the time to stop and ask questions about Campbell even if it started with a stare.
I smiled and brushed away a tear, silently thinking, “They really aren’t so different after all.”
The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Thanks so much for chasing me down to my salon after I parked and chiding me for parking in a space that “actual handicap people could use” — all while I was getting my eyebrows done.
Thanks for giving me the perfect opportunity to show you my heart monitor and explain my heart condition and why my doctor prescribed me a handicapped placard so I don’t pass out. Yet you still tried to argue after this because I “look healthy.”
Thanks for giving me an opportunity to show grace and grow in patience, but also speak truth and stand up for myself.
But overall, thank you for giving me a reason to speak out.
I’m sick of being quiet about this. You actually said what I believe a lot of people are silently thinking when I’m in a wheelchair at the airport, when I have to lie down when I don’t feel well and when I have to use handicapped parking so I can actually go to church. The only thing that can match how poor I feel on a regular basis is the feeling of dozens of people staring at you, wondering if you are “faking it.”
Thanks for also giving me the opportunity to share why judging people with disability stickers or people in wheelchairs who “look healthy” is not OK. Just because I don’t have a cane or am not “obviously” disabled doesn’t mean I’m any less so.
Our jobs aren’t to judge whether someone has a legitimate illness or disability — that’s a doctor’s job. So everyone, let’s be kind to each other. The world will be a much better place for it.
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.