Tag Archives: CurePity
One thing most people probably don’t know about me is that I’m a huge Lady Gaga fan. Growing up with cerebral palsy, I hit a point when I realized that I was “different” from other people. Even if no one told me directly, I always felt like an outcast. In school, I was in all mainstream classes and tried my hardest to prove myself. Needless to say, I graduated high school in 2012 with a cumulative GPA of about 3.2. It was my way to say “I told you so” and reject pity.
Another thing most people don’t know is that I also went through times of doubt where I would let pity get the best of me. I would often pray to God, sobbing, and saying, Why did you make me this way? Why am I here? What is my purpose?
Then one night, a breakthrough. The sobs stopped. I was physically incapable of crying. I truly believe God answered my prayers that night. As started to learn more about the world’s biggest pop star, I felt closer to her than one would imagine even though we hadn’t ever met (yet!)
As soon as I found out that Lady Gaga’s Born This Way Ball tour was coming to St. Paul, I knew I had to get tickets. I was determined to see one of my personal role models in the flesh. In December, I decided to write an e-mail to her management on impulse asking about a possible meet and greet, thinking nothing of it. They probably get hundreds of e-mails a day, I thought. I’ll never get a reply.
Lo and behold, on February 4th, two days before the concert, I got an e-mail saying that a documentary was being filmed about Lady Gaga’s Born This Way Foundation and they thought that I was a perfect candidate. You know those crazy, awesome dreams that you always wake up from before the really good part happens? I thought this was some kind of crazy dream; a prank. Regardless, we corresponded back and forth through e-mail and Trevor, a man who heads up the production team, stated that they wanted to come out to my house for filming.
During the interview, they asked about my life story and struggles. I spilled my guts. I thought I looked horrible on camera, but they said I was great. After the nearly two hour interview, they stated that we needed to be to the Xcel Energy Center at about 3:30 so that they could film us around Lady Gaga’s Born Brave Bus/Tailgate – a place for her fans to go to get help with various issues in addition to meeting other fans in a fun and safe environment. The camera crews said we could do whatever we wanted, so my friends and I just walked (or in my case, rolled) around a bit until they said it was time to go inside of the actual Born Brave Bus for filming.
Before we knew it, screams erupted. Gaga! Gaga! Gaga! The Lady herself walked in to greet both myself and my friend Brandon. We hugged, and she asked us how we were, to which I simply said “I am awesome right now.”
It was at that point that I wanted to cut to the chase and tell Gaga about the absolutely incredible work that Gillette does for thousands of kids just like myself. For months, I thought about the amazing impact that even local sports players have created by spreading the CurePity movement. I wanted to take it to a whole new level, and the wheels in my head were always spinning – Lady Gaga would be the perfect person for this CurePity pledge. I need to get it to her somehow. Which is exactly what I did.
I proceeded to say something along the lines of “Gaga, I don’t know if it’s too much work, but there’s something I’d like to tell you about. The hospital that I go to – Gillette – treats kids just like me from all over the world right here in St. Paul. They also have a campaign called CurePity, which basically means rejecting pity for those with disabilities and empower them instead.”
I then brought CurePity.org up on my phone. Lady Gaga couldn’t sign it right then and there, but she did completely support the movement as well as the hospital’s work. She then said something like:
When most fans come to me, all they want to know is about me, or my music. But all you want me to do is sign this. I think that’s so beautiful and inspiring. When people see this, I think it will have the potential to empower a lot of people and change people’s lives.
Lady Gaga is completely genuine and hands down one of the nicest people ever. Not only that, but she gave me a shout out during her song “Born This Way” – more specifically with the lyrics, “no matter if life’s disabilities/left you outcast bullied or teased/rejoice and love yourself today/cause baby you were Born This Way.” In addition to the two hours we spent before the show, we also got to go backstage after where we spent another hour with her. It was one of the coolest experiences of my life, and making her aware of Gillette’s incredible work was just icing on the cake!
Unfortunately for Miss Gaga, she had to cancel her tour as a result of a hip injury and subsequent surgery. She called me personally last night and said, “Hi Emma! This is Gaga. I just wanted to call you and tell you that I really screwed up my hip after a show. I’m on crutches and occasionally in a wheelchair right now, but I’m doing okay. Thank you so much for making me brave and be sure to tell your friends that I love them. I want to see you again as soon as possible!”
I also asked Gaga personally about the follow up interview – it’s still on as soon as she can make it!
Christmas morning 2011, my water broke one week early, sending us scurrying to the hospital at 2 am and leaving behind our 2-year-old son with neighbors. Four hours later, as the rest of the world was waking up and opening their gifts, my husband and I delivered ours–Kendall Christine.
She was healthy and we celebrated our Christmas blessing–my heart was full of contentment and happiness only a newborn baby girl could fill.
Then the next day, a pediatrician came in with the blow. The “birthmark” on the top of Kendall’s head was actually a congenital nevus. Being in mama-heaven, this news didn’t faze me at first. Seeing my lack of concern, the pediatrician proceeded to tell me this is a big deal and we need a biopsy to make sure it’s not cancerous.
I thought, wait a minute now, don’t go throwing that “c” word into things. Life is perfect, can’t you see? Leave us alone. Go away.
But it didn’t and it wouldn’t.
For me, pity began 6 weeks later with our first visit to see Dr. Wood. This was a defining moment, as I became aware that her nevus was an issue and that it would not be an easy or simple task to remove it. He explained to us the tissue expansion process, which entailed inserting an expander underneath the skin on her scalp and slowly, over the course of many months, injecting this with saline and stretching the skin to a large size. This newly-stretched skin would be used to cover where the mole was once it was removed.
Kendall seemed so fragile and I honestly couldn’t wrap my mind around the reality of this process, but Dr. Wood’s experience and confidence put me at ease. He recommended that we begin tissue expansion once she reached 9-months of age. We considered the options and made the decision to proceed–plans for October 15th were underway.
You could say that preparing for Kendall’s first surgery was much like training for a marathon–a marathon filled with obstacles and hurdles, that is. I knew going into it that I would have to pace myself, that this wasn’t a quick sprint and that we needed to find endurance for the long haul.
I had stayed strong and fought off pity pretty well–right up until the second I laid eyes on my daughter after her surgery. It consumed me in ways that I wasn’t prepared for, yelling at me your daughter looks different, and this isn’t fair!
Those first few days and weeks were painful–painful in ways that I can’t explain or am too embarrassed to tell. Pity told me different wasn’t as good and even different is just plain ugly. People’s doting words of beautiful quickly turned into looks of concerns and questions. I felt like I was constantly fighting off anger and tears that Kendall had to endure all of this and that we were in this situation.
We had a battle, me and pity.
When our 2-year-old son saw Kendall for the first time post-surgery, he looked at her with his big-brown saucer eyes in great concern. We explained to him that he could no longer play rough with sister and that she had an “owie” on her head that he couldn’t touch. I thought he would be upset or lose interest playing with her.
He just looked at me and asked, Can I kiss her?
This was the beginning of a new attitude for me, defining my own views on what beautiful and happiness mean. I was no longer seeking the world’s acceptance or approval because, as my son reminded me, she is already perfect. My perception began to change and over the next month, pity was replaced with confidence–a confidence that told me I was strong, that we were lucky to be in this treatable situation and to take this challenge and to turn it into something positive.
You see, pity did nothing but cripple me. It threatened to paralyze me and prevent me from making the positive response my daughter needed. Only by conquering my own pity was I able to provide strength for my daughter.
I gained confidence as I realized the things I once concerned myself with were no longer important. People’s words or reactions no longer mattered to me. I was reminded that I was being strong and bearing the burden for my daughter so she wouldn’t have to. And I realized that this process was a defining time for our family, but that it didn’t define who we are.
The past three months have involved weekly injections at Gillette Children’s to enlarge Kendall’s expander. I can’t say enough good things about the medical team that surrounded us–they have made this process smoother and easier in every way possible. The fourth floor has been a place of transformation for our family–physically and mentally. Doctors, nurses and other parents look into my child’s eyes and see that she is beautiful. It has been empowering and enabled me to shed my fear of judgment from others, along with judgment from myself.
I have such respect for the children that we see each week and deep admiration for the parents by their side. Whether a child is facing long or short term medical needs, life-changing or life-threatening, I believe what every parent wants is for their child to feel loved and accepted–to know that they can live and thrive through their uniqueness in this world.
Now here we are, in the last stretch of Kendall’s medical marathon. I once thought this journey was about crossing the finish line, but now realize it is about deciding to run.
The Cure Pity campaign gave me the strength and confidence to share Kendall’s journey. When the day comes, I’m excited to tell her how brave she was through all of this, how she rocked our world that Christmas morning and how she continues to teach us valuable lessons about the important things in life.
I hope that when you look at Kendall, you see past the bump and notice her gorgeous deep blue eyes and pink cabbage patch lips. I hope you see a one-year-old who is on the verge of walking, filled with a passion and determination in everything that she does. Ultimately, I hope you are able to look past the differences and see her through the eyes of a 2-year-old.
When Tasha Schuh noticed the Facebook page for Ms. Wheelchair USA, she clicked “Like” and thought little more about it.
“Some of my caregivers said, ‘You should get involved,’ Schuh recalls. “But I’m not the pageant type.” She was already busy, writing a book about her life after an accident paralyzed her from the chest down. In addition, she gives motivational speeches and volunteers as a mentor for people who’ve recently sustained spinal cord injuries.
It’s been a long journey since, a month before her 17th birthday, Schuh stepped backward on a high school stage—not realizing someone had opened a trap door. She fell 16 feet, breaking her neck and damaging her spinal cord on the cement floor.
“I know what it’s like to feel hopeless and want to quit,” Schuh recalls. “I got involved with Ms. Wheelchair USA because its vision isn’t about beauty. It’s about what women can accomplish in a wheelchair.”
A year after seeing that Facebook page, Schuh filled out a 20-page application for Ms. Wisconsin USA. She won the title on the strength of her application, then traveled to Ohio for a five-day national pageant. “It was amazing,” she says. “I got to meet wonderful women who had dreams and goals just like I did, whose stories were equally inspirational.” The contestants attended workshops about accessibility, advocacy and other disability issues. They made blankets to donate, attended a swing dance and interviewed with judges.
Each contestant gave a speech focusing on their “platform”—the main idea they were promoting—and on what they would do if selected. “My platform was the power of a positive attitude,” Schuh says. “When they said my name, at the end of all the awards, I was shocked—and so honored to be taking home the crown.”
Since the pageant, Schuh has appeared on news and talk shows throughout the U.S. “So many opportunities have opened up for me because of the title,” she says. Recently, she was named 2012 American Rehabilitation Champion by the Foundation for Physical Medicine and Rehabilitation. She’s finishing her book and planning her wedding.
“My dream is to give hope to people by telling my story,” she says. “Attitude is huge. It’s so easy to focus on what you’ve lost, but we all have things we can be thankful for. Air to breathe. Hot running water. Freedom in America. It didn’t happen overnight, but when I stopped thinking of what I lost, I started living a life that’s good. Now I’m happier than I’ve ever been.”
Tasha Schuh’s book, My Last Step Backward, will be available soon. Check her website, http://tashaschuh.com, for more information.
On Monday, November 5, the Gillette Children’s Specialty Healthcare’s Duluth Clinic held a celebration to mark its 13th anniversary of offering specialty services to northern Minnesota children and families. To help raise awareness about the Gillette Duluth Clinic and to champion Gillette’s CurePity movement, the celebration included a media tour of Duluth print, TV and radio outlets, as well as the Great Lakes Aquarium. Duluth’s Mayor Don Ness proclaimed November 5, 2012 as “CurePity Day” in Duluth.
The public and media were invited to the Gillette Duluth Clinic’s event program that highlighted the clinic’s history and specialty services, a patient family sharing their experiences of services provided at the Gillette Duluth Clinic, an overview of the CurePity movement and a plaque presentation by the Duluth Area Chamber of Commerce Ambassadors. After the program, guests enjoyed light refreshments and were invited to sign the CurePity Pledge.
‘At Imation, we place a special emphasis on assisting great community causes. When i heard about the pledge to help improve the lives of children who have disabilities, I immediately wanted to support it’.
Imation is a Twin Cities-based based global storage and data security company. Our broad customer base spans commercial, government and retail markets in more than 100 companies worldwide. Our portfolio includes tiered storage and security offerings for business, and products designed to manage audio and video information in the home. Imation, TDK Life on Record, XtremeMac and Memorex are among our well recognized brands. Imation is committed to enhancing the communities in which we live and work, and we are proud of our employees’ dedication to volunteerism and community involvement.
Former Gillette patients Justin Zook of Plymouth, Anna Eames of Golden Valley and Jon Rydberg of Oakdale signed the pledge to CurePity prior to leaving for the 2012 Paralympics in London in August.
Zook won a gold medal and set a world record in the men’s swimming S10 100-meter backstroke. Eames, who was co-captain of the women’s swim team, anchored the 400-meter freestyle women’s swimming relay team and received a silver medal. Rydberg participated in the men’s wheelchair tennis singles and doubles, but did not receive a medal.
Why did these athletes take the pledge to CurePity? Children who have disabilities don’t need pity. They need hope, expert medical care and a world that gives them a chance. In short, they need people like you.
When you pledge to CurePity, you promise to reject pity and take action to improve the lives and health of children who have disabilities. Join these talented athletes and sign the CurePity pledge today!