Spina Bifida

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    Community Voices
    Carla @carla1234

    What My Marriage Looks Like as a Disabled Woman Married to a Non-Disabled Man

    Throughout my life I’ve wondered what people think when they discover I’m married. When I was younger and still in the dating scene, I also questioned if some of those relationships didn’t work out because they didn’t know what life would look like down the road with someone like me — a four-foot-tall disabled woman. The truth is, I had no idea either, so no hard feelings there! Sometimes I don’t have to wonder though, because as anyone who has lived with a visible disability knows, we get asked many questions. Don’t get me wrong, questions are fine with me — but some can be way out of left field and highly inappropriate. One of my personal favorites, “Is he your dad?”, is often asked in reference to my only-two-years-older husband. (Because, of course, disabled people are LUCKY to have found love!) I thought I’d take this opportunity to share a glimpse of what my marriage looks like. I’ve thought about writing this story for a long time, but the problem was that my life is so much like everyone else’s that I couldn’t find an angle. But then I realized — that is the angle. My marriage looks like most others. I have spina bifida. I have always walked with crutches, but in my late 20s I started using a wheelchair because my shoulders were feeling the effects of years worth of weight-bearing that arms simply weren’t meant to hold. I alternate between the two different mobility methods depending on the situation. It was hard for me at first because it was new, but my husband made it clear that it was all in my head. I was afraid people were going to stare at me, but he said, “They already stare so it won’t be any different.” He was right. I just don’t notice when they do because I am too busy going about my business! With the chair, life got easier. Some people wonder if my husband is also my caregiver. The answer to that is no. He does get my chair out of the car and put it together if we are out. He doesn’t have to, he just does it to be nice (and it’s quicker that way). He will reach for things on a high shelf or load the groceries in the car. Other than that, outings are pretty normal. In the past, he’s refused to do some things that I can’t do — like going to the top of the Statue of Liberty when we went on vacation. He didn’t want to go because I couldn’t. There was no reason for him to miss that opportunity, but I lost that battle. He also wouldn’t buy a bike for himself until we could buy one that was accessible for me too. A bike that one can use with their hands is considerably more expensive than a regular bike, but once I got one, he bought one too, and we were off to enjoy that together as well. I’ve thought about writing this story for a long time, but the problem was that my life is so much like everyone else’s that I couldn’t find an angle. But then I realized — that is the angle. My marriage looks like most others. He’s modified and built things for me to make life easier. He does that because he loves me (as his wife and not my caregiver). He’s also extremely creative. He learned how to change the bearings on my wheelchair wheels because it’s easier — why throw away perfectly good wheels over such an easy fix? I am sure he has had his share of insulting questions and statements from the general public over the years. Some I have been there to hear, others most likely uttered when I am not around. He doesn’t tell me about them. He doesn’t care, or at least he says he doesn’t. What other people say clouds his opinion of them, not me. Does he take care of the home? No more than he would if I wasn’t disabled. He mows the yard (although I can do it with a riding mower and have many times) while I take care of the flower beds. He takes out the garbage and pulls the cans to the curb. Both of these things I can do if I need to, but it’s easier for him, so he does it. I do it when he is out of town. Our laundry room is detached from the house and there is a step to get to it, so he does the washing and drying and brings the laundry in so I can take over from there. Again, I can do it, but this is how we split things up in our home. When I got burned cooking a few years ago, he cared for me because I couldn’t get around as easily. I had second and third-degree burns on my feet (an article for another time!), and he took care of the kids and the house while I healed from that. Since that incident, I have been forbidden from taking hot things off the stove. He would rather do it because it’s safer. So I cook and yell for him when it’s time to take the pots off the stove. I cooked by myself for 20 years and only got hurt that one time, but it keeps harmony in the house, so that’s what we do. But it goes both ways: I’ve cared for him through sickness and a couple of accidents he’s had too. We raised kids to adulthood and went on family vacations. We both have careers, so we both work every day. On weekends we will either catch up on work left over from the week or find something to do, even if that ends up just binge-watching a new TV show or documentary. Sometimes we go shopping together. Most of the time, it’s just me, and when I get home, he carries the groceries in the house and will help put them away. Sometimes he would drive the kids to school or whatever they had going on in their lives. Sometimes I would, it just depended on whose schedule would allow it that day. What other people say clouds his opinion of them, not me. The only health-related thing he does regularly is he complains that I drink too many Cokes instead of something more friendly to my kidneys like cranberry juice (that stuff is gross I just can’t handle it). I don’t say any of this to minimize his role in my life. He, like most spouses, is everything to me. We have been married for almost 18 years, and as any honest couple would say, it has had its ups and downs, but I would say we have enjoyed most of it. He had no idea what he was getting into when we got together. No one knows what the future holds, but he jumped in headfirst anyways, and we went about building a life together. He doesn’t have a disability and I do, but our life is remarkably similar to what life would be if I didn’t.

    Community Voices

    Community Voices

    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


    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

    Community Voices