Spina Bifida and Quality of Life

Quality of life. 

That's something we, as humans, often feel the need to judge. 

When a baby is diagnosed in-utero, parents are too often told they will grow to have no quality of life.  Some parents are even told their child will be a vegetable.  Then comes the fact that their child *may* use a wheelchair, which of course, they make sound like the end of the world.  Oh, and let's not forget that you are told your marriage will likely end in divorce if you take on raising a child with special needs.  You are given a doom-and-gloom speech, then you are offered your "options".  

It's hard to hear the doctor speak these words.  Most of the time I hear new parents express that they are scared.  I read their posts, I reply to their e-mails, and I get it.  The truth is, when I found out Madi would be born with spina bifida, I was scared too.  If I knew then what I know now, I would have saved myself a lot of stress and tears, but I can't go back and change the past.  What I can do, though, is try to reach those parents feeling scared and reassure them that it will all be ok; that their child will be ok.

When I look at my girls I see light.  I see laughter and love.  I see pure joy.  They aren't faking their happiness, or trying to be something they aren't.  They aren't sad, they don't pitty themselves, and they don't let anything stand in their way.  They are smart, talented, creative, hard-working, funny, silly, loving, and the list goes on and on.  Spina bifida is part of them, but it doesn't define them. 

I started to wonder, though, how adults with spina bifida feel; how my girls will feel.  Do adults with spina bifida feel like they have a good quality of life, or do they feel that those doctors are right? Instead of making assumptions, I decided the best way to find out was to ask.  These are the responses I got.  They are unedited and were not filtered in any way.

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My name is Chris, I'm 47 and was born with Spina Bifida Myelomeningocele, L4-L5. My parents were told that I would not have a very good quality of life, and I proved them wrong every chance I got. I went to mainstreamed Elementary, Middle and High Schools, and graduated from each. I played on a youth soccer team with non-disabled people and our team won the championship. I then got a degree in Computer Science from a local college. And I also managed to break a Guinness World Record along the way. I've worked at a few jobs, I drive, I have a social life, and enjoy doing many different things. I would say that my quality of life is just fine.  

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 Amanda~ I'm not one to let life live me.

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I am Heather, 28 from Rochester MN. I was born with L4-L5 Myelomeningocele Spina Bifida and Hydrocephalus. I walk mostly, with a brace for support of my left ankle. I use a wheelchair, for long distances. I have had around 10 Spina Bifida related surgeries, plus a few extras for other things.

From elementary school, to high school, I was in regular PE and I was even on the swim team, in Middle School. I had Physical therapy, mostly in my childhood. I started adaptive PE in high school. I got my license and drove, just like anyone else did. I had my first job, at Burger King, at 15. Having other various jobs after that, including always babysitting on the side. I had boyfriends, most whom were able bodied. It seemed the disabled boys, were the ones who didn't work out the most! I went to college for Child Development. When I was 19, I found my now husband online, even though I wasn't even looking for a boyfriend at the time! I moved from Minnesota to Illinois, to live with him. From there, I ended up being a nanny and working for a local company, working door at concerts, on the weekends. We were married in 2006. In 2007, our daughter was born. She died at 4 months. We then had a son, in 2009. We moved back to Minnesota in 2012 and since then, I have been a stay at home mom, with photography on the side, for a job.

I guess what I am trying to say is, being disabled, doesn't have to stop you from living a normal life. Just because your body doesn't work like everyone elses, doesn't mean there's not a way to get things done! I think, your mind is the only thing that can hold you back.



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Misty-    My parents were told, like a lot of other brand new SB parents, that I would have no quality of life. They were told I'd never walk, talk, feed myself...I believe the term "vegetable" was used. I find it strange how much I don't actually feel like a potato. My feet don't work. I can't walk long distances. It's never been that big a deal to me. I've never had the use of my feet, and I don't know what I'd do with them if I did. I don't understand why having floppy feet automatically equates to a poor quality of life. If someone needs glasses, we don't have a pity party and cry about how awful it must be to need extra equipment to see, and we certainly don't come to the conclusion that their life must be SO AWFUL that we should "let them go" to end their suffering. I wear leg braces. They help me to have that "quality of life" thing I'm not supposed to have. It's not a big deal. I slap them on when I put my shoes on, the same as you do with your socks. I don't think the 45 seconds it takes to do that really dips into my quality of life. Who decides what "quality of life" is anyway? Quality of life is a choice. I could sit around all day and mope about the fact that I'll never be an NFL running back, or I can praise God for the things I can do! I choose the second one. God has been good to me. I don't have a reason to lay around feeling sorry for myself. I have a good husband, a good family, friends who will wait that extra 45 seconds so I can put my braces on. I get to tell other people what my quality of life will look like. No one gets to decide that for me. I choose to rejoice in what I have.

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Susan- When a person looks at the world, they are doing so through their own unique experience (perhaps one reason those without SB view us as having a poor quality of life.). As such, since I have never known what it is like NOT to have Spina Bifida, I don't have anything to compare it to. Comparisons though, in my opinion, are dangerous. Comparisons validate these stereotypes and pre-conceived notions and can lead to self-fulfilling prophecy if we're not careful. Yes, I have had more medical issues than someone without SB. I've had many surgeries. However, these moments have made me stronger, both physically and emotionally. I have defined my quality of life - not by the difficult times, not by what I don't have, not by what I can't do - but by the blessings I have been given.... blessings of family, friends, a job, talents and the ABILITY to make a REAL contribution and difference for others. These are the aspects of life that bring me joy and purpose. There is so much for us to learn from each other and we all deserve that opportunity to decide for ourselves what our definition is of "quality of life".

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 Kristen-  Kristen did a research paper on spina bifida in highschool.  Though she has spina bifida, she found what she read quite terrifying and saddening.  She now works towards helping others view spina bifida in a more accurate and positive light, and empowers others to live independently.  She has a youtube channel she keeps updated with videos where she shows how she lives and thrives independently.  She hopes it will be a resource for other parents that don't know where to get their kids help and also for other adults with disabilities.   Her youtube channel is....

https://www.youtube.com/user/KristenMarieHart/featured?view_as=public

Kristen says....

 Despite the fact of being a fulltime wheelchair user I have still managed to live on my own, drive and recently graduated from cosmetology school! And that I make those videos to help and encourage others in chairs and their parents so they can teach their children.

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David- David does not have spina bifida, but also experiences judgement on his quality of life as he lives with Duchenne muscular distrophy.  He shares....

Nobody can make that decision for me, but me. I may be fully ventilator dependent, have a trach, depend on a food tube for nutrition, function like a quad and require 24hr supervision, but I absolutely love my life. I'm the smartest person in the family, can tell you how to fix or build almost anything. I've loved & have been loved by the best girl ever (my SB angel) and lost just as much. I'm a very passionate person, I advocate for Duchenne and SB communities where I can.

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Nicole-   Thirty-five years ago, I was born to a young couple who had no idea their baby was less than perfect. It wasn't until after I had come into the world that my parents were informed by doctors that their new baby girl had something called spina bifida. I was immediately rushed to another area hospital that could handle my immediate needs, which required multiple surgeries. Later, doctors informed my parents that because of my disability, I would be facing a short-lived life in which I would be a severely mentally and physically disabled , vegetable,  and would have no real quality of life. Because of this, they said, my parents should just allow them to medically starve me to death. They didn't. 

I've lived my life motivated to prove those doctors (whom I've never met) wrong. Not only did I graduate from high school, but I also received my bachelor's degree. I moved away from home to go to college, determined to figure out how to take care of myself. I learned to drive, with a convertible...because I didn't want the cliched "special van". I've gotten married, held down jobs, and bought a house. Not bad for someone with no quality of life. If only those doctors could see me now...      

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  I’m Lisa, I’m 38 and I live in Auckland, New Zealand.  I have Spina Bifida at Levels L4,L5 and S1. 

I am currently at university full time and have a part time job.  I’m studying a Bachelor of Arts in Psychology and Rehab.  I completed another degree when I finished school majoring in Human Resources.  I’ve been working full time since then.

I live independently and pretty much look after myself.  I am very independent and sometimes struggle to ask for help (even when I should)

I had an amputation below my right knee four years ago.   I originally wounded my foot and due to SB complications I ended up with a bone infection.  I eventually asked my ortho to amputate which was a great decision for me.  I am walking again and have to use a splint on my left leg.  I hate the splint, but I have to wear it if I want to walk.  I use a wheelchair for long distance as I get tired.  I don’t use any other mobility aids to walk.  I learnt to drive at 17 and absolutely loved it.  It gave me more independence.  I had to relearn to drive with hand controls after my amputation.  Took me a while to train my brain that the foot was no longer there to brake…haha!

I struggle more with the incontinence/bowel side of SB.  I have been trying for 2 years to get some help in this area.  I get very embarrassed when I have an ‘accident’.  This puts me off having a relationship as I feel insecure. 

I have amazing friends (both able bodied and disabled).  I am very lucky with the good friends I have.  

My family struggled with my amputation and I haven’t seen them since I had it done.  I think my mother in particular carries a lot of guilt which is unnecessary.  I don’t blame anyone.  It was just bad luck.

I love going to movies, concerts, trips away, dinners out, wine and cheese (lol)

For the most part, my life is pretty normal.  Yes I have some things I struggle with, we all do.  But I’m ok with it most of the time....  I’m just trying to be honest.  It’s not all bad, it’s not all great either.  Just like everybody’s life I guess

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Monica- It both saddens and angers me that parents are told the same thing mine were 49 years ago. I am an RN, a mom with two great kids, a grandma, a wife with a great hubby. My life is not perfect- but whose is? I am just like everyone else, playing the hand I was dealt the best I can. Just because you have medical challenges does not mean you have no quality.

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 Mary-  I feel incredibly blessed that my parents were so motivated from the beginning to ensure that I had every opportunity to reach my full potential, while maintaining as "normal" a childhood as possible. I am especially thankful that they found a medical team with the same philosophy of care. There was very little "sugar-coating" of information-I don't like surprises. I wanted to know what the adults were talking about. I wanted to learn all the "big words." I felt more involved in MY care because I was more informed. I became more involved>doctors talked more and more to me vs. my parents>I started feeling more confident, independent>improved quality of life. Spina Bifida is just one piece of me. I have a masters degree, work full time, own a condo, pay taxes and healthcare premiums(ok those 2 aren't so great); I am a sister, a niece, a daughter, a granddaughter, an aunt, a cousin, a neighbor, a friend. And guess what, no doctor could have predicted any of those, either! Quality of life is something unique to each individual~it's not found in a book. It is not a diagnosis~

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Sarah- I am 27, from Australia born with myelomeningocele. I also have a brother and sister born with myelomeningocele. A lot of people assume life with spina bifida is really tough and I suffer. While there certainly are hard times, I love my life and wouldn’t change it for the world. I do some things differently but it doesn’t mean I can’t do them at all. I study full time, have an amazing boyfriend, am learning to drive and one day hope to work in the disability field, advocating for those with physical disabilities. And hey, I’ve even skydived! I believe attitude plays a huge role in determining the quality of our lives and I chose to live happy.

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My name is Jane. I'm 21 and I have myelomeningocele spina bifida, L4-L5. My parents were told that I would never walk, talk, attend mainstream school, and one doctor went so far as to say I would be "a vegetable by age 5." None of these predictions came true! I can walk using crutches for short distances, but I do use a wheelchair or a scooter for long distances. Even if I couldn't walk, it wouldn't be the end of the world. My wheelchair and my scooter actually give me more independence! I can run errands, carry things on my own, play wheelchair basketball, and even dance. Doctors were also wrong about my ability to talk. Not only do I talk, but I have written and presented speeches for large audiences. I have participated in a speech competition. I'm a bit rusty now, but I used to be able to speak French pretty well. I love to write, and even have a blog about social justice issues. I can sing, too! In high school, I took voice lessons, piano lessons, and I was the lead singer of a jazz band. I was one of only 25 students to be chosen for the Honors concert, and was also chosen to appear in an ad for the school. I sing in the liturgical chorus at my college's Sunday morning Mass every week. Not only have I always attended mainstream schools, I have been in honors or accelerated programs since 5th grade! I graduated sixth in my class in high school, and I have made the Dean's list (which requires a GPA of 3.5 or higher) most of my semesters in college. I suppose doctors were just trying to prepare my parents for the worst case scenario. Life with spina bifida can definitely be a challenge. I have had health problems, some issues with chronic pain, depression, and anxiety, and I was bullied when I was younger, but I am blessed. I have a wonderful family and group of friends who support me during the hard times and celebrate with me during the good times. Of course I have days where I wish my circumstances were different and wonder what life would be like without spina bifida, but most of the time, I love my life exactly the way it is and wouldn't change a thing!



We Are Guest Bloggers... Come Read Our Story

There are so many cool stories on this site, and we are so excited to be part of it!  Today they featured Madi.  Go read!

http://www.spinabifidastories.com/2012/02/madi-child-with-spina-bifida.html

Spina Bifida Stories: Michelle

I was born in 1971 - the early days of spina bifida. I was born with Myelomeningocele (L4/L5) and hydrocephalus. Not long before I was born, most babies with SB died due to either infection caused by their spinal cord not being surgically closed after birth or hydrocephalus. I was truly born at the right time! Another thing that worked in my favor was being born in Chicago and Children's Memorial Hospital in Chicago was pretty much the birthplace for the treatment of babies born with SB. In fact, the Spina Bifida Association of America started off in Chicago with just a few parents. Amazing what a grassroots effort can turn into.

I had about 30 surgeries by the time I was 10 years old. Thankfully, the majority of those were done before age 6 so I don't remember much. Even though I had many surgeries and physical issues growing up, I feel I had a pretty typical childhood. I went to a regular school and attended regular (mainstreamed) classes, had lots of friends, went to summer camp, played with my sisters, fought with my sisters, loved playing with my dolls, and loved to swim. I also went on many trips with my family - California, Mexico, Florida, Ireland. My parents did their best to not let my having spina bifida keep me down - even with my leg braces and crutches.

As I grew up, I always knew I would be independent and live on my own. My parents told me so as I grew up, so I had no other frame of thought. I got my first job at 16 being an annoying telemarketer, learned how to drive at 18 and moved out when I was 25. I decided to move to Florida with a friend from high school and so I quit the job I had the time (working in a law firm) and packed up my car and drove down here in January 1997. I have been here ever since! There really is no comparison to the weather from Florida to Chicago. Florida wins hands down!! Moving down here was the hardest thing I have ever had to do. It wasn't (and isn't) always easy, but so worth it. I wouldn't change my decision to move out for anything. I still go back home for Christmas and usually in the summer and my family comes visit me. It's a nice arrangement!

 

My most recent job I had was at a small family-owned company that made and installed counter tops. I was their production coordinator. Unfortunately, I developed a severe pressure wound 4 years ago that required many lengthy hospital stays, so I had to resign and go on Disability. My 20 year work history worked in my favor though, as I make much more than people who are on Disability and have never worked. My wound is finally healed and I'm hoping to be back working in 2012. I miss working and making my own money!

Life with spina bifida can be difficult at times, but every life is presented with challenges and hardships. Mine just happen to be physical. As strange as it may sound, I am grateful for that. There are many more wonderful things about my life than negative things. I try to remind myself of that fact everyday.

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Spina Bifida Stories: Julia

I was born in Indianapolis in 1960 and of course in those days no one knew ahead of time that their baby had SB until the baby was delivered. I was my parents’ first child and there was no history of SB in the family. I have a brother 3 1/2 years younger than me without SB.



I was born with lipomyelomeningocele at L5/S1. A couple of very good doctors were called in and they closed my small lesion and removed a piece of skin that was hanging by the opening. Unfortunately, I got meningitis and was very sick for a number of weeks, spending about a month in the hospital. One doctor told my mother when they weren’t sure whether I would make it would be just as well if I died because with the SB and the spinal meningitis, my brain would not function properly--and I’d basically be a vegetable. Yes, those were the words they used back in those days, and I cannot imagine a mother hearing that about her firstborn child—or any child!


Needless to say, SB kids are fighters, and I survived. As an infant I wore shoes with a bar to turn my feet straight, but I eventually started crawling and pulling myself up and walking (without the bar, of course) at about 13 months. My mom thought this was “late” but my own daughter, who does not have SB and is also a first born, started walking about that same age, so apparently 13 months isn’t that unusual for kids to begin toddling.



I had a bladder/ileal colon surgery when I was barely age 5. I won’t go into all the details, but I remember being VERY happy about it, running around and telling all the neighbors about it when I got home from the hospital, lol! This type have surgery has been improved upon over the years, but it worked for me, and has served me well for 46 years. So take heart about that, moms of SB kids!



I had an unusual gait, of course, and over the years I had numerous surgeries, leg braces, and even a cast at age five to try to turn my foot straight (no surgery—just a cast!). I wore a leg brace on one leg from 6th to 9th grade. I attended two public grade schools and both times my mother marched me to the principals’s office before school started to show the principal I was just fine on my own. In those days, disabled kids weren’t really attending public school, so I know my mom had to try to convince the school I would do fine. I was indeed the only “handicapped” kid at both of my schools, so I got a lot of comments and sometimes rude remarks about the way I walked or about my brace. However, I also had a lot of nice friends at school, so that called less attention to my being “different.”
A lot of people asked if I’d had polio, even though polio had basically been eradicated in America by the time I was born. But people knew about polio; most had not heard of Spina Bifida or knew almost nothing about it.

Through grade school and high school, I had surgeries every few years: tendon transfers, bone rotations, foot corrections, spending time on crutches, full leg casts, walking casts, and wheelchairs. Since I have little sensation in my legs, the surgeries didn’t hurt all that much, and I actually felt in some ways “special.” I did have achy legs for a number of years on very rainy or snowy days. At 25 I had my four hammer toe bones fused straight (left foot). Funny story: I fell down the stairs in my lovely wooden hospital shoe and toe pins after the surgery, bending my pins! So, I DO have fused bones, but they are anything but straight, lol!
My teen and adult life has been pretty normal: I went to public high school, won awards for art and writing, got a part-time job at age 15, drove at 16, went to college out of state for my BS in Graphic Design, did internships in various states, backpacked Europe (alone) for three months, graduated, moved far from home for my first job, got married, had three kids (very easy to deliver babies when you have SB, btw--#3 was accidentally born at home!!), worked for various companies at each of the five places we moved to, taught adjunct in a college, and started my own freelance editing business.



The only really major SB event in this time was at age 40, when I realized my walking was getting worse (well, I actually started when I realized I was having trouble getting up from a squat), I had an MRI and learned I had a tethered spinal cord. Like a rubber band, it had been stretched for all these years and was just giving out. They didn’t usually check for TC routinely back in the day, so I had never known! So, I had TC surgery done in Chicago at age 41. My balance was pretty bad by this time, and I was starting to use a cane (which I still do). The surgery had some complications that required a revision and then four months lying flat in bed trying to get a pinhole leak to heal (it was leaking spinal fluid). It healed, I went back to work, caught West Nile Virus—a spinal fluid condition of all things!—and the pinhole reopened. Three more months in bed and just about the time they were going to put me in the hospital to try drain my spinal fluid away from the pinhole for awhile, it healed! Woohoo!!!


Having a good sense of humor, and parents who encouraged independence and trying a variety of things to see what I was good at (and encouraging those things--like my art and writing) were some things that really helped me get along with all kinds of people despite my SB. That is not to say I never felt (or feel) different, or that people never felt uncomfortable around me (at least subconsciously). It just means that growing up I was able to laugh (at least later!) at most awkward situations caused by my SB and that I rarely thought much about my physical limitations, instead focusing on things I enjoyed doing and felt I had a special talent for. Guess I’ve done OK for a “vegetable.” : )

Spina Bifida Stories: Mary Jo

I often think about how I arrived at this moment in time. I am 37 yrs old. I am a social worker in a large hospital in Chicago. I have a bachelor’s and a master’s degree. I have worked in Minneapolis, MN and Spokane, WA as part of a national volunteer program. I have twelve brothers and sisters, twenty-five nieces and nephews, and lots of cousins! I also have Spina Bifida. I think I’ve had about a dozen surgeries, thankfully I don’t remember the early ones! I have an amazing family who have always been a great source of encouragement for me.

I was teased as a child, as I’m sure many others can relate to. But very early on in life I learned that I had a choice. I could let bullies win and live my life in a 24/7 pity party (I tried it for a while-trust me, it’s NOT a party,) or I could look at the world in front of me and do the best I could. “Can’t” was never a part of my vocabulary. I never asked if I could do something; sometimes I just needed to ask how I could do something. I tried a lot of things. Some were more successful than others.  But you don’t know until you try. I learned to roller skate in the dark with a pillow strapped to my bum(daylight would reveal the unconventional & embarrassing teaching method to passersby.)

Life is hard at times. But it’s hard for everyone. I don’t think my life is harder than someone else’s because I have Spina Bifida. I think our lives our different, but I can’t judge someone else’s life unless I’ve experienced it myself. I know I’m a stronger person because of my challenges. I am not a boastful person, but I do feel proud when I can reflect on all that I have accomplished in my life and think about all that I have yet to do. I am a successful, hardworking, kind-hearted, child-at-heart, fun-loving, tax-paying woman. Spina Bifida, a shunt and a pair of afo’s are just my accessories!

Spina Bifida Stories: Liza

My name is Liza, and I was born in 1982 with Myelomeningocele. My parents had no idea I had this until I was born. Luckily the umbilical cord was wrapped around my arm and my mom had to have a C-section. The story I have heard is, as soon as they got to me, I rolled over so the doctors could see my back. I was then flown from Laramie Wyoming to Denver Colorado where my SB lesion was closed.

I remember every year going to "MM (myelomeningocele) clinics" where I would see all of the specialists: Urology, Neurology, Orthopedics, Nutritionist, Social workers. I also remember getting to pick out a toy every year at the clinic in Denver (that was totally cool :). I never really minded going to these clinics. It wasn't until my Dad went with me one year when I was about 15 that I realized it could be a little boring. My dad's exact quote, as he paced back and forth in the room after I had only seen 1 doctor, was "How do you do this?". It was just part of life.

I have had about 11 surgeries so far. Tendon transfers, 1 tethered cord release, Ureter implants, Vesicostomy. Surgery became a normal part of my life too ( But I will admit that waking up from anesthesia always sucked ).

I've always been able to walk independently. I had AFO's and orthotics as a kid, but decided to stop wearing them sometime around High School. I did get teased quite a bit for the way I walked as a kid, but the other kids quickly got bored when they didn't get any reaction from me (thanks for teaching me to ignore them Mom :). I played basketball in school from about 3rd grade until 6th grade. My orthopedic surgeon decided I needed to have my ankle fused during one of these years, and when I asked if I would be able to run and play basketball after the surgery, he told me "well you're not able to run now." (Yeah, I was MAD!). When he asked for a demonstration, he couldn't wait long enough for me to get my shoes on so I could show him...

In Junior High my health teacher asked if I would be willing to give a talk about Spina Bifida. I did research and gave talks to my health class both years of junior high, and went back and did my talk to all of the girls health classes for the first 3 years I was in High School.

 

I worked full time for many years, doing mostly fast food. It was hard, and my body always hurt quite a bit, But I just thought that's what adults did, so I sucked it up and did it (and didn't move when I was off work...).

I got pregnant when I was 27 years old (which was a HUGE shock to me, because I vividly remember at least 2 doctors telling me I wouldn't be able to get pregnant. The one time I listen to what a Doctor said...). My mom was totally terrified most of my pregnancy that my son would have Spina Bifida as well, because my Spina Bifida is more than likely genetic. My thoughts on it were "well if he does who better to deal with it than someone that has dealt with it for 27 years and knows the ropes?". After 22.5 hours of labor, Gage was born perfectly healthy in December 2009. My pregnancy was great (after the "morning" sickness was gone.). I was totally amazed to have warm feet in the winter! All of the nurses that came into my hospital room commented that "He's just so alert, and he's just so active!" And that has NEVER changed... He keeps me on my toes! lol.

In November of 2009 my left hip started feeling weak and I had to stop working, I figured it was part of the pregnancy hormones, but it didn't go away after my pregnancy. When I mentioned this to my OB/GYN about 6 months after I had my son, she agreed that it was part of pregnancy and "it would go away, or it wouldn't". Eventually I found out that I have another tethered spinal cord, and will need surgery to release it. After doing some research I found out that pushing during the delivery of a baby can cause Tethered cord. (Had I known this before I had my son, I more than likely would have had a C-section.) I remember being scared before a couple of my surgeries as a kid, but it was nothing like it is now that I have my son to worry about too.

 

Spina Bifida has always been a part of my life, so everything that goes along with it is just normal. It sucks sometimes, but everybody has struggles in life. Having Spina Bifida has taught me a lot of very valuable lessons in life: It's taught me patience, to be kind to other people, it's taught me not to listen to any of the "neigh sayers", it's taught me to look at things from more than one point of view. Luckily I learned early, that having a positive attitude makes a world of difference.

People think that my life is hard, and it can be, but it's all I know, and there is very little I would change about my life.

Spina Bifida Stories: Monica

My name is Monica J. Foster and I am a woman with spina bifida at the L3/L4 level, a full-time wheelchair user and amputee in Landis, N.C. When I was born with spina bifida in the early 1970s, my mother was told by the 'experts' at the hospital I would not do the following: live, recognize her voice, sit up, walk, lead a quality life, go to school, be independent, graduate college, live on my own, have any meaningful impact on the world, find someone to love me. The list goes on.

As of today, I am a vibrant amputee on wheels after dealing with life-threatening infections in my left foot for a long time, In January 2010, I made the hard decision to literally cut my unhealthy losses and continue on the next successful 'leg' of my journey living life to the fullest with one and a half legs on wheels. I am married to my husband and soul mate, Bryan Foster, a stroke survivor who taught me that I could not only be my own best advocate as I got older, but his as well. I am a proud, nationally sought-after professional speaker, trainer, writer, life and career coach and consultant running my own business, BUTTERFLYWHEEL® Motivation, Advocacy & Consulting (www.butterflywheel.com). I have a college degree in English-Writing Studies with a over 20 years of combined experience in top-fold quality print journalism, customer service and disability civil rights. I am also hold professional certifications in life, life purpose and career coaching, vision board coaching and mental health peer support. Bryan is a juvenile court counselor and we have been accessible home owners for almost two years now. We have no children --at the moment -- but do enjoy our rambunctious kitty, Annabelle. Bryan and I are each and together active in various civic and community organizations as well.


We've both learned that no matter what people tell us we can't, won't or shouldn't do, we will find a way --- even if we have to do it in our own time and our own way. The sky's the limit!

Thank you so much, Monica, for sharing your story!!