Spina Bifida

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    Community Voices

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    Jane Carriere

    My 'Normal' as a Person With Spina Bifida

    Everyone’s definition of a normal life is different, so what is normal, anyway? My normal is waking up in too much pain to get up right away. My normal is having to set multiple alarms in order to wake up at a reasonable hour. My normal is sitting on the side of the bed trying to gather the strength to get into my wheelchair. My normal is only being able to shower in the actual tub once or twice a week when I get my pressure sore bandages changed. My normal is staring at my myriad pill and supplement bottles, trying to remember if I took them yet today. My normal is microwave meals or sandwiches for any meal that my boyfriend, Philip, can’t cook for me. My normal is praying I don’t spill my water or my coffee on my bandages because that means Dad has to help me change them. My normal is waiting to clean the guinea pig cage until I have the energy to do so or being frustrated when I miss my window of opportunity. My normal is forgetting what it feels like to be a zero on the pain scale. My normal is falling asleep sitting up several times a day. My normal is struggling to remember to write a to-do list, let alone do the things on my to-do list. My normal is relying on other people to drive me where I need to go. My normal is only leaving my apartment to go to my doctor appointments, see my family, or go to church. My normal is struggling to push my wheelchair in my apartment due to the carpet. My normal is avoiding starting the dryer because it means standing up and standing up is hard. My normal is doctor appointments every Friday morning. My normal is forgetting to go to the bathroom until it’s an emergency due to my neurogenic bladder and bowel refusing to give me signals that I have to go. My normal is having to wash my laundry more than everyone else for the same reason. My normal is watching my niece and nephew play in the yard at my parents’ house from the screened porch instead of getting to play with them. My normal is missing chunks of television shows and movies because I fell asleep. My normal is laughing so hard that I get a Chiari headache, and then laughing some more because I’m just that happy when I’m with my friends and family. My normal is getting to give my niece and nephew rides on my wheelchair even though they’re both getting so big. My normal is knowing Philip always has my back… he literally always has my back because he pushes my wheelchair everywhere when we’re together. My normal is inventing new and unusual ways to do chores and stuff from my wheelchair. My normal is getting asked by random passersby why I’m in a wheelchair and chuckling when their kids tell me how they want to use a wheelchair too. My normal is giving my wheelchairs names like “The Sunflower” and “BlueBelle.” My normal is knowing incredibly cool people with spina bifida all over the country because I “met” them in support groups. My normal is stubbornly refusing to take no for an answer when I have a goal in mind. My normal is my body reminding me that it has limits, even if I don’t want to admit it. My normal is learning to listen when my body says, “No, Janie. Not today.” My normal is complicated. My normal is messy. My normal is stressful. My normal can be lots of fun. My normal is not your normal, but really, what is “normal” anyway?

    Community Voices

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    6 People Answer 'You Know You Have Ehlers-Danlos Syndrome When...'

    Ehlers-Danlos syndrome (EDS) is a condition that impacts the joints, skin, and blood vessels that can lead to translucent skin, bruises, dislocations, and more. One thing about living with a health condition is that you are very rarely alone in your struggles. For example, The Mighty is a community full of people with various health conditions who understand what it’s like to live with them. That means you’re surrounded by people who not only “get it,” but they’re able to find relatable humor in their experiences. The Mighty’s editorial assistant Skye, who lives with EDS, posed a question to our EDS community with that in mind. She asked our community to fill in the prompt, “You know you’re an EDS patient when…” Her personal answers were: “Maybe you’ve been sitting at the dinner table with friends when someone points out that you’re sitting with your legs intertwined in an ‘impossible’ position, or you could be on your third specialist appointment of the day and still have physical therapy that evening.  My most recent ‘You know you’re an EDS patient when…’ moment happened when I squatted to play with my dog and my dad said, ‘How does a human move like that? You have frog legs!’” Her fellow zebras understood the assignment, and came forth with their own answers to the prompt immediately. Wait, the way I’m sitting is weird? “I was sitting on the couch watching TV with my mom. She looks at me, ‘Uhm is that seriously comfortable?’ In my head, I’m like ‘You know the answer. I’m 33, you know me.’ I’m like ‘Yes. Yes, I very much am in my pretzel shape.’” – @Dakota0419 “Just yesterday I had a coworker ask me ‘Are you really comfortable like that?’ and I was in a full squat. Feet flat on the ground and knees to my chest. I looked up and said ‘It’s comfier than standing,” and he just shook his head and walked away.” -@Meagancsantaa Ouch, that hurt. “When you can put your legs behind your head but can’t hold a pencil right. When you fall asleep on the couch sideways and your spina bifida vertebra adds two extra fractures and cysts filled with spinal fluid.” – Jessica MacLean “You know you’re an EDS patient when you sleep in the butterfly stretch position and you’ve subluxated your wrist brushing your teeth.” -@Megandorriesfield852 “…When one mosquito bite turns into a whole body itch-fest!” – KJ Did someone say bruises? “…When you wake up with multiple unexplained bruises after a night’s sleep.” – @Moontide99 What about you? How would you answer this prompt ? Let us know below or comment on the original post!

    Community Voices

    This past weekend - Friday June 24th - I got to see Halsey at the Shoreline with my two best friends. To be clear, Halsey was AMAZING! But the venue was shitty...

    I was prepared. I brought my handicapped placard and researched the venue before going. I purchased tickets online that said handicapped accessible tickets with a companion so I got the seat with a handicap and companion seat and also the seat next to the companion - three tickets in total. A week before the concert I checked again to be sure there was handicap parking and indeed it said handicapped parking available.

    The day of the concert we got to the venue, and parking was a mess. We asked eight parking attendents where handicapped parking was, and they just pointed - and didn’t say anything. We finally parked but it wasn’t handicapped parking. The parking lot was uneven and gravely and not paved, which is kinda difficult when you're in a wheelchair. We got out of the car to assemble my wheelchair.

    We had to walk a little ways to get to the venue. On our way over, we saw the parking lot where all the handicapped parking was. Austin asked one of the staff members if we could park there and she said yes just ask one of the shuttles to shuttle you back to your car and put his hazard lights on. But, once Austin got his car but yet another staff member said he couldn’t park there, and made him go back to his original parking spot. It was confusing and disorganized, as if people at Shoreline aren’t used to disabled people coming to concerts with their friends at all.

    If people get treated like I did, that’s kind of not surprising.

    We got to the venue and they wanted to do a bag check - including looking at the bag where I carried my catheters. It seemed like too much of an invasion of privacy, so I left the bag in the car… It turned out that the bathrooms (porta-potties) weren’t wheelchair accessible anyway… even though they were supposed to be.

    We got to the gate to scan our tickets. I asked where the accessible section was. They just pointed and said on the other side of the theater. It turned out that the seats we had that were supposedly handicap accessible …weren’t. My friends Austin and Brooke talked to one of the staff and told them the situation. The staff member looked obviously irritated, pulled all three of us aside and radioed her supervisor. Austin was still talking to the staff member still telling her the situation and then she made a finger gesture telling him to be quiet.

    Her supervisor came and after hearing the details, she looked at me and asked, “Can you walk down eight steps?” I said no. Then she asked “What if one of your friends carried you down?”

    I …couldn’t even believe they asked me that. I was born with a birth defect. I have spina bifida. My spine was formed outside the skin, and my nerves weren’t formed in my legs. Right after I was born, doctors had to put my spine back into my body. I can’t feel below my knees, so I'm paraplegic. I don’t expect strangers to know my whole history but… I was in a wheelchair and I bought handicap accessible tickets. Why was she asking me that?

    I turned and looked at Austin and Brooke and I just shook my head.

    The staff lady rolled her eyes and sighed. Then she said, “Let me see what I can do.

    Eventually we got to our seats, and they were accessible, but they were segregated off in the corner.

    And I don’t know how I feel - maybe disappointed? It's a RARE moment when I’m feeling really good about navigating as a disabled person in public spaces. It is also RARE to get to hang out with my best friends. I go to dialysis three times a week, and right now I don’t work, so the tickets were an expensive treat. Most of the time I’m feeling tired and sh*tty, but on Friday, I felt good - it was going to be a good night.

    And Shoreline ruined it.

    …But Halsey was AMAZING!

    Community Voices

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    Community Voices
    Community Voices
    Alexandra Rego

    We Need to Embrace the Uncomfortable and Talk About Disability

    I was born with spina bifida/hydrocephalus. I grew up in a school of 300 children, only two of whom had disabilities in mainstream classrooms, one being myself. There was also no disability representation to be seen in any medium. I was once asked, “When was the first time you realized you were different?” It was when I started elementary school, and I quickly learned I was not like the other children physically and mentally. I was bullied in elementary school for having to wear AFOs as a walking aid as well as for being “slow” to learn in class. We were taught that when you are being bullied by a peer, you are to tell an administrative person (i.e., teachers, principal, school employee). The few times I approached my principal, he defended the bullies simply because their parents were a part of funding the school I attended. As a child, what do you do when the people who are supposed to be in your corner aren’t? The trauma this presented forced me to retreat into hiding my disability the best I could. When I started school in a new city, I told no one about my disability. This caused more harm than good, as I became an extremely anxious individual, hypervigilant and suicidal. I was unable to get the help I needed because that would mean I would need to admit my reality out loud. I was able to hide my disability until I was about 30 years old, but I realized this was preventing me from living as my true self. I made the choice to hide my disability because I didn’t think I had any other option at the time. I had a lack of resources and support. It made me feel isolated and fearful of society. At 30 years old, I was planning not to live another day; even with a room full of people who loved me, I felt alone. The one thing that stopped me was realizing all the things I would miss in the future if I wasn’t around. I needed to live, I wanted to live. When I started to face my reality, I became more liberated because I was living my life authentically. Growing up, I relied heavily on the online community as a way of human connection as I was afraid of being criticized by others. The screen kept me safe, guarded, and less vulnerable. It was only natural that I would use the online community (Facebook) to flip my narrative. I decided that despite the negative comments I received as a child it was no longer going to trigger me. I posted a photo of myself on my Facebook, wearing a pair of shorts exposing the AFOs that were once weaponized against me in others’ bullying tactics. The outpouring of support that I received was overwhelming. This in part tore down the walls in which I was hiding behind much of my life and opened new opportunities that I once was fearful of. I learned many lessons through this experience. Others’ opinions of me no longer faze me because I realized that their opinions are based on their own thoughts, not my own. I now use my voice to express my needs in areas such as healthcare, employment, and education, rather than be stigmatized. There are other people who can relate to your situation; there is in fact community. I began to take care of myself better and had mental clarity. I felt united rather than the isolation and confusion I originally felt. I have realized my self-worth and have accepted myself. With this new realization, I have come to not accept less than what I deserve as an individual. In 2022, the stigma of disability still exists. We are still very much underrepresented in media, and still frowned upon in pursuing relationships. We are forced to live below the poverty line, and fight for our basic needs both in employment and health care. We are still looked at as less than and aren’t included in conversations involving our overall wellbeing. Due to societal misunderstandings, the disability community has historically been bullied and experienced a never-ending barrage of ableism. We should be able to not fight alone and have those higher in power on our side. All these situations can cause one to lose their self-worth as an important part of society. We as a society need to do better, be better. Every human being should be treated equally, no matter race, gender, disability, or socioeconomic status. Never judge a book by its cover. Everyone can succeed when given the right tools and the opportunity to shine. You can write your own narrative, so let us act on changing it now. Let us be rid of stigma, bullying, and ableism in our society. The lack of education surrounding sexual health specifically and disability is still very much taboo and that leads us to raise another generation of children who will grow up to become adults who believe they are unlovable and lack self-esteem and confidence. We need to embrace the uncomfortable and have these conversations to educate society as a whole.