Alli Johnson Talks Self-Love and Living with Moebius

Alli Johnson said living with Moebius syndrome has been a difficult journey, but she has learned so much about self-love along the way.

Growing up with Moebius was really hard for Alli. She said the kids were very mean, ostracizing, and judgmental. Elementary and middle school were the hardest years for her. She was called “freak” and “the r word”. Kids imitated her speech impairment, and she was stared at a lot. She had a kid tell another kid not to talk to her because she wouldn’t understand what they were saying. One girl told her whole grade in middle school not to be her friend because she was a freak. And, Alli said, the list goes on.

Alli said she dealt with all that at the time by keeping her head down and somehow finding the strength to keep going. She said it hurt, and thinking about what her little self went through is heartbreaking.

But, she said she came out the other side and she’s stronger for it. Alli said, to be honest, she thinks everyone was so focused on her medical and physical health that they just didn’t have the capacity to see that she wasn’t okay. And she kept it to herself because she thinks some part of her knew that.

Alli did have a handful of kids, though, who she said saw Alli the person and not just the Moebius. She said she’s so grateful she had those special people in her life because it’s what kept her alive. She said she was also very fortunate to have such a great team of adults around her who saw her potential when she couldn’t see it and taught her the skills to be the successful woman she is today.

Alli said as much as she believes no child should have to experience what she did back then, it’s given her this incredible strength, perseverance and drive to live her life to the fullest.

Alli wants to acknowledge to those with Moebius who are being bullied how hard it is and how hurtful it is, and that she sees you, and is sending you love.

She suggests, if there’s a specific group of people who are bullying you, try not to interact with them. Or, if you’re in a place where you’re getting stared at a lot, if you can, just leave.

Also, she said think about going to therapy. She said she knows it’s scary to face all the hurt that’s happened or is happening, but it makes such a difference, and through that journey, you really find yourself. And once you know who you are, it’s really hard for people’s judgment or assumptions to get to you. Yes, it still stings, but then you remember, oh yeah, I’m awesome, and you move on.

Alli said most of all, surround yourself with people who see you and love you. Once you have those people in your life, all of the negativity gets significantly quieter.

And lastly, be yourself, don’t try to be like the “cool people”. She said she became friends with the closest friends she has today just by being herself. You’re very cool by shining your beautiful, unique light – trust her!

Having Moebius syndrome has affected Alli physically in a few different ways.

She has a speech impairment, which she said is probably the biggest obstacle she faces in life. She said having someone not understand her is probably the thing that still really gets to her. She just wants to scream, “I promise I’m speaking the same language if you’d just slow down and listen.”

Alli said it’s hard socially because she can’t just walk up to a group at a party and start a conversation. It’s hard when the only customer service is a phone number and you know that you’ll say four and they’ll think you’re saying three and you’ll have to say no the number that comes after that a ridiculous amount of times before they get it. It’s having to use an outline in every meeting so that people will get what’s needed for that meeting. It’s not getting the solo in choir, or a speaking part in the musical because the director is scared the audience won’t understand you. It’s being called Madison or Addison, when really your name is Allison.

But, she said, what it also does is weed out the people who don’t matter, and the people that do matter come closer and take the time to listen. She said some people won’t understand what she’s saying for the rest of her life, that’s just the cards she got dealt, but she will never let that stop her from being heard and seen because her voice matters.

Alli also had a trach from about a couple weeks after she was born until she was 9 years old to help her breathe. She and her parents just discovered that she could breathe without it, and the doctors agreed, so she got it removed. It does mean that she gets easily winded with physical activity, though.

Alli had a g-tube a month after she was born until she was 25 years old because she couldn’t swallow. Which meant she had to have formula through a tube to get her nutrition. 

At 21, she discovered she could eat orally and slowly started transitioning to eating orally full-time. She said her relationship with food has never been normal for her, as she feels sick very easily from food, and that goes for both formula and normal food. So, she’s struggled with being underweight since middle school, but she said all she can do is work on it and be disciplined.

Alli has a vision impairment, so her depth perception isn’t great. She said she struggles with stairs that aren’t clearly marked, curbs, weird, uneven sidewalks, or pretty much anything she could trip or fall over.

Having a visual impairment also means Alli can’t drive. She said she’s tried driving and took the driver’s test and failed. She then decided she would rather not drive and keep herself safe, and keep others on the road safe. She feels very lucky to live in the time of Uber and Lyft because that’s how she gets around if the bus can’t take her somewhere.

Alli also has muscle weakness in her hands, so getting almost anything open, buttons, snaps, zippers, etc., is difficult for her. But, she said the occupational therapy she got as a kid made a world of difference, and it’s the reason why she’s so independent today.

Alli said a difficulty that’s vulnerable and raw that she’s dealing with now (and thinks it’s important to talk about) is having dental issues. Having Moebius has made it so she has a small mouth, and is therefore prone to cavities. And when she switched to eating orally, within a few years, all her teeth had cavities. So, she has dealt with the pain, the embarrassment of losing teeth, and also fighting with doctors and insurance to help her with this. But, she’s finally started the process and said hopefully will have dental implants by the end of the year.

Alli said having Moebius has been challenging emotionally in that she has had depression and anxiety for almost 20 years now. She said she thinks it directly correlates with how awfully she was treated as a kid by the other kids she interacted with. She said when you feel so othered and like this gross monster no one wants to be friends with at a time that’s crucial for your development, that’s the kind of hurt that leaves a scar on your mind and your heart permanently.

But, as Alli has gotten older, she has worked on herself, gone to therapy and is on mental health medication. She said she’s really solid in who she is as a person and what she values in life, and that it has gotten so much better.

Alli has a Bachelor’s Degree in Journalism (with an emphasis in Public Relations) and a Master’s Degree in Rehabilitation Counseling.

She works as the Assistant Director of Accommodation and Accessibility Services for the University of Arkansas. Alli facilitates the student staff, staff, and faculty accommodation request process. Some examples of her duties are if someone requests needing extra breaks, if they need to have their supervisor put in writing what was talked about in their one on one meeting, or if they need to work remotely because they got injured and it impacts their mobility.

Alli’s office is also in charge of physical accessibility on campus. So, if an accessible door button isn’t working or if it snows and there’s ice that impacts accessibility on campus, it comes to their office, and then they work with facility maintenance to fix these issues. All accessibility related questions usually come to their office, and if they don’t handle them directly, they refer them to the right place that will.

Alli’s office also hosts National Disability Employment Awareness Month every October and puts on webinars that deal with different accessibility topics. In addition, they host an awards ceremony at the end of every October to recognize students, staff, and faculty who go the extra mile to make the University of Arkansas accessible for people with disabilities.

What Alli likes most about her job is helping make University jobs more accessible for people with disabilities and having some impact on making the campus of the University of Arkansas more physically accessible.

What she finds most challenging about her job is navigating the fact that when someone requests an accommodation at work, it isn’t automatically accepted. At the end of the day, the supervisor of the employee making the accommodation request gets to decide if they want to accept it or not. Alli said sometimes seeing supervisors say no and then having to tell the requester that, and seeing the aftermath of that, takes an emotional toll on her.

Alli said her job search / interviewing process has been challenging with having Moebius.

She said it was really hard to get her first part-time job the summer after high school. She said, for her, it really was about having those managers see her and not just see that she had Moebius.

As far as interviewing, Alli said she was very fortunate to have interview skills before she started job hunting.

She said being involved in 4-H helped. The organization offered pretty substantial trips to teens, but in order to go on the trip, you would have to go through an interview process. She said she had to go through that process probably every year of high school, so it was a skill she learned that a lot of people might not learn until they’re looking for their first job. She does remember being nervous about the hiring manager not understanding her, or her totally blanking on a question, though.

The biggest upset job search-wise for Alli was after she graduated with her Bachelor’s in Journalism. She had to move back home with her parents as she job-searched. She said for over a year she applied for over 100 jobs, and only got two interviews and zero job offers.

She said it just hit her one day, this obviously isn’t it, what’s my plan B. And as soon as she stopped looking, that’s when she had the light bulb come on…”I could totally be a vocational rehab counselor and do it a lot better than the counselors I had.” And thus started the journey of the career she has today.  

Alli’s advice for people with Moebius who are navigating the job search / interview process is, although she knows it’s hard when you’re nervous, just be yourself. She said every job she’s ever gotten was because she was authentic and made a genuine connection with the person hiring her.

She said always have go-to examples of past work that you can whip out, too. And, that gets a lot easier the more work experience you have. But, for those first-time people looking for jobs, use experiences you’ve had at school, or after-school activities. Alli, personally, was in musicals and stage crew. And, specifically for stage crew, you’re always problem-solving, which is typically a skill job interviewers are looking for.

Also, Alli said you have to believe you know what you’re talking about. Especially as people get into professional careers, you have to have the knowledge about the field. She said, yes, everyone who’s interviewing probably knows the same stuff, but it’s your confidence, it’s your delivery, and it’s having your own special view/spin on things, and that comes from just being yourself.

Alli said self-love is a lifelong journey. She really struggled to love herself as a kid and a young adult.

She said when you are born into a world where just doing the basic physical things is a challenge, and then add on all the judgment, underestimation, and assumptions from others, for her personally, it made her hate herself and hate having Moebius. And when you live with that hate, you’re mad the majority of the time. And it’s exhausting, and living with Moebius is already hard enough as it is. 

And so she thinks it took until high school to be like, yes, my life is really hard, but I have all these great people and have had all these great experiences, and if I keep being mad, I’m taking all of that for granted. And, she said, to be honest, she faked it until she made it. Her posting motivational posts on Facebook was the start of her journey to self-love, and through therapy, life experiences, and good friends loving her, she can now say she truly loves the woman she’s become. But it took a minute, and it’s an ever-evolving thing.

Alli’s advice about self-love is that it’s honestly the best gift you can give yourself. And no romantic love will ever give you what loving yourself can give you. Self-love is consistent and lifelong once you commit to it. And she truly believes that you will attract a healthy relationship that makes you feel truly loved once you truly love yourself.

Alli has attended about 10+ Moebius Syndrome Foundation conferences and highly recommended going to them. She said she has had so much fun at the conferences and has made so many invaluable friendships.

She wants the Moebius community to not be scared to lean on each other when life gets hard. She said her DMs are always open if you need a listening ear:

Facebook: Alli Everest Johnson
Instagram: queenofsass94
Email: acjohnson2794@gmail.com 

Also, she encourages the Moebius community to keep spreading awareness.