Ms. Wheelchair USA 2015-2016
By Nicky Williams Dexter
A message from Nicky about the Spotlight series: “Feeling connected to others living with FSHD has been a blessing to me these past 10 years, and now I want to share my amazing FSHer friends with you! This series will introduce you to incredible stories and people who live with FSHD. If you would like to suggest an individual to profile, or would like to write for this series, please email the FSH Society. I hope that through these profiles you will gain a fuller appreciation for the individuals in our community.
If you haven’t heard of MS. Wheelchair USA 2015 and FSHer Skylar Conover, you are missing out. There is a reason why I chose her to be my very first official FSHer spotlight profile. She is such a genuine friend with a sunny personality that so many of us connect with. When it comes to advocacy for the disabled community, her voice is powerful.
When we first became friends, I marveled at her ability to speak to others in a positive light that would encourage them on their road to independence. She advocates for those in our community to live life to their fullest potential. Her message is this can be achieved with the aid of adaptive equipment, when the time is right.
She is a great role model for how to use tools and equipment to move forward and be as active and capable as she can be, throughout the different stages of progression with her FSHD. Even when she could still get up on her feet and wobble around, she never hesitated to look to manual and power wheelchairs to empower her to live the best and most active life that she could. Having options allows for more chances to say yes, and a more able and active life.
Skylar’s journey to find a diagnosis and gain confidence in living with FSHD, was not an easy one. Skylar’s mother had been adopted and so the medical history on her mother’s side was not available to their family. When Skylar first manifested symptoms during her teens, her family did not realize that the FSHD gene had been inherited and passed down from her mother.
Like so many others in our community, she went to multiple doctors seeking answers. She even had a doctor brush aside her issues as the behavior of a middle child seeking to gain attention. “It was really hard and frustrating knowing that something was wrong, but not knowing what it was,” Skylar says of her experience.
“It wasn’t until March 2005, when I was a freshman in high school, that I had a total body spasm in class. I was then care flighted to Dallas Children’s Hospital where I saw the chief of neurology, who happened to specialize in muscular dystrophy,” Skylar recalls. There, she finally got the answer that she had been waiting for, that her symptoms had a cause, that she had FSH muscular dystrophy. Finally, she received validation for the symptoms that she knew were not in her head.
Skylar went through a tough few years during the years surrounding her diagnosis. She was struggling with her self-image, and with having to quit all of her after school activities. She was changing, and so was her life. It was a hard thing to adjust to. She was suffering with intense shoulder pain and would choose to stay home and rest, rather than leave the house to have fun.
Through all this, Skylar’s family was right by her side, dealing with their own issues that having a loved one with FSHD can bring. Her mother wrestled with feelings of blame and guilt, like so many parents do who have passed the gene onto their children. Her siblings adapted and modified their relationships based on the issues that FSHD brought. Her older sister adapted to become her protector; always shielding her from others or overcompensating for the negative things that Skylar had to endure because of the FSHD. The family had a hard time coming to terms with their feelings and adjusting to the new normal of Skylar being someone with a disability, and what that meant, for all of them.
“The advice that I would give others who are working through their diagnosis, is to process what it means by talking about it, and to grieve with the whole family,” Skylar says. She reminds us that FSHD affects the whole family, not just the individual who is diagnosed with it.
“I also think that people who have been diagnosed and their families should not be shy away from being involved in the FSHD and disabled community.” Skylar urges that this is the best way to stay connected and gain value from the information that is shared within the community. There is nothing more limiting than isolation from information and community, she says. The family can play an important role in helping the newly diagnosed FSHer stay connected.
Now, some 13 years after her diagnosis, Skylar can say with conviction that she is grateful for her FSHD. It has helped mold and shape her into the lovely woman that she is today. There were low times in Skylar’s teens, when she struggled with self-doubt and a negative self-image, and had even attempted suicide a couple times. But in looking back, Skylar sees how the things that have truly made her happy have manifested in her life because of and in spite of the FSHD.
In 2015 Skylar Conover was crowned Ms. Wheelchair USA and used her platform to urge others to ‘Alter Attitudes to Conquer Change.’ (See related story.)
“So many people focus on accessibility barriers, but we have to change people’s attitudes regarding those with disabilities if we are to make progress. Everyone needs to feel that people with disabilities deserve to access public places like anyone else,” she says as she reminisces on how she came to embrace her platform.
Skylar says her mission is to educate communities and raise awareness for the acceptance and consideration of people with disabilities (both visible or invisible) as valuable parts of every community, worthy of equal access and opportunities and treatment. This was her message when she traveled the USA during her Ms. Wheelchair USA year, and she continues to focus on spreading the word.
The needs of the disabled continues to be a subject that many communities tend to avoid. But with more and more people in the disabled community speaking out and using moments to educate their local communities, many are becoming more aware that things need to change for equal access and opportunity; and change starts with attitude.
These days we find Skylar Conover being the best mommy to two amazing little boys and still advocating to the community about the tools available to them to live out a better quality of life. She recently just got a new service dog, Hedda, that has helped her keep her independence. She keeps urging others to seek out the tools and adaptive equipment that can let them live their best life.
“There are so many options for equipment and technologies that can help our lives be more independent and help us not to rely on other people so much. Finding all the adaptive equipment that is best for you is the best thing you can do for yourself,” Skylar wants to remind the FSHD community.
Being a new parent with two young stepsons has been a challenge, but one of the most rewarding experiences of her life. She realizes that people look at her out in public in her wheelchair with her boys as though she is an inadequate parent, or are surprised that she has a family. She says that although it may take her longer to do things with her boys, the values and lessons that she instills in them because of who she is, a parent with FSHD, are invaluable. She feels that she is raising little gentlemen who consider others and think to do something kind for those that struggle.
“People see you in public in a wheelchair with two kids, and wonder how can you be a parent to these boys?” Skylar observes. “They think that you couldn’t possibly be a good parent with a disability, and that is so far from the truth. Just because we have a disability and use a wheelchair, doesn’t mean that we can’t take care of kids and provide them with what they need in life. For children, the most important thing that they can get in life is love and support and encouragement; and we can provide all of that from a wheelchair to our children. Having a disability doesn’t keep me from giving that to my boys.”
Skylar says as a parent with FSHD, it takes her longer to get things done, and she may need a little more help, but she knows that this does not limit her boys in any way. In fact, it teaches them to have consideration for others, and Skylar is grateful for the teachable moments that she can provide her children because of her FSHD.
She reminds the community that “many of us do struggle with self-doubt and negative feelings, and we get inside our heads every time our body changes and every time we go through a declining stage with our disease. I still have times where I get in that head space, but then I remind myself that is okay to mourn and grieve the ability that I have lost. This is how I adapt and I go on living my life. The world doesn’t stop because my life has changed.”
Skylar urges all of the FSHers to come to a place within themselves where they know they are just as important as everyone else and to not be afraid of seeking out help and support when they need it.
“When I first was diagnosed I was very hesitant to get involved in the disabled and FSHD communities but getting involved was the best thing for me. It made me realize that I wasn’t alone and that there were people out there just like me having the same struggles that I was having,” she says.
If there is anything other members from the FSHD community can take from Skylar Conover’s story, it is that we are not alone. Seeking out connections to others like us can be so therapeutic and beneficial. Skylar continues to be a voice and an advocate within the disabled community and strives to help alter perceptions and attitudes about what it means to be a strong, confident FSHer. Even though Skylar has retired her Ms. Wheelchair USA crown and taken over the car pool lane with her minivan, she remains a great example of an FSHer living their best life.