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5 Things to Know About Life as an Adult with Spina Bifida

Things to Know About Life as an Adult with Spina Bifida

Recently, someone asked me what their child should know about life as they grow up to become adults with spina bifida. This question really got me thinking about what I wish I had known early on in my life as someone with spina bifida. I asked myself what information I could have focused on early in my life to help me learn the skills I would need later.

As we grow up, we learn the difference between needs and wants. Of course, we can classify many things as both. However, part of maturing and gaining life experience includes learning what matters most in life, whether you have a disability or not.

Top 5 Things to Know About Life as an Adult with Spina Bifida

Here are five focus areas that have been important in my adult life, which I share with you in hopes it helps.

1. Managing Your Health

First, let’s talk about health. Many of us take this one for granted. We tend to assume we’ll always remain in good health. However, when you live with a disability, such as spina bifida or a spinal cord injury, you may already know that good health is not a guarantee.

Part of navigating our way into adulthood includes finding what works best for us to live as healthily as possible. From daily catheterizations to bowel management programs to routine dental checkups, all of these things help me live a full life. Are these things always easy or enjoyable? Not at all. Are they necessary? Absolutely.

practicing good hygiene is a part of maintaining your health

As we grow up, we often naturally become our own health advocates. We learn over time that the results of our actions directly impact us, whether positively or negatively.

For example, if we need to use catheters and don’t cath consistently, we could develop urinary tract infections (UTIs) or have accidents. Then we could miss out on more fun or important things in life due to having to clean up or recuperate.

A great quote I keep in mind is “If you do not make time for your wellness, you will be forced to make time for your illness.” We must make sure that we follow and remain in compliance with our daily tasks. By doing so, we help increase our chances of a more consistent and fulfilling long-term level of health.

If you need catheters, incontinence, or ostomy supplies, contact 180 Medical. We offer lots of helpful online resources, including instructions for how to use catheters hygienically. Our trained specialists can help you find the products that work best for your unique needs. Plus, we can set up your orders to be recurring so you never run out.

2. Making Time for Fitness

Next, let’s talk about another crucial part of maintaining our health: fitness.

Unfortunately, for me, this is one I learned later in life. However, I keep at it now and strive to do better every day.

A key factor of life with spina bifida is being able to maintain our independence. In order to be independent when living with a disability, we need the ability to do the necessary life skills on our own. For example, if we cannot transfer ourselves from our wheelchair to the toilet, shower chair, or vehicle, that dramatically reduces our level of independence.

Whether you walk or use a wheelchair or braces, you can still find ways to get some physical activity. These days, we have endless adaptive sports resources online to help us find a program or hobby that works best for us. Plus, you may be able to find out about local adaptive sports opportunities by talking to your rehabilitation or physical therapist.

For any sport or activity that you can think of, there’s an adapted way to do it. For example, I’ve played wheelchair basketball, softball, and football. Plus, I even scuba dive. Whether you like relaxing activities like yoga, outdoor recreation, or physical sports, there’s an option for you.

brendan scuba diving
Photo credit: Brian Kuner

Also, your diet is an important part of your fitness. The work done in the kitchen is often the most important. Maintaining a healthy diet and getting sufficient water intake can help most of us remain physically fit. This ensures we can perform the necessary skills to remain as self-sufficient as possible as adults with spina bifida.

3. Finding Employment as an Adult with Spina Bifida

Just because you have a disability doesn’t mean you need to limit your own expectations when it comes to getting a job. Find your passion and pursue it relentlessly.

We all have a unique experience in life, and I argue that it makes us stronger. What we go through often prepares us to make a difference.

From professional athletes to doctors to teachers to lawyers, I’ve witnessed firsthand that the opportunities are endless for us. Yes, some people may try to temper your expectations in life, but that doesn’t mean you have to do so.

By pursuing what you love, you will inevitably show others the great proficiency and capabilities of people with disabilities.

If you’re not sure where to start, contact your state’s Vocational Rehabilitation Services. They may be able to help you find employment and give you training or guidance.

Also, check out the 180 Medical College Scholarship Program, which is open annually to college students with spina bifida.

4. Making Connections and Forming Relationships

We all need relationships in some form or another. Whether it’s a romantic partnership, your family, friends, coworkers, acquaintances, members of a spina bifida support group, or people in your religious affiliation, relationships often get us through the toughest of times.

However, just like the three previous points, they also take a lot of work. Relationships never survive if they are one-sided. Be sure you are pursuing relationships that make you better each and every day and don’t forget to be there for those around you.

I have been married for 7 years, and my wife and I have two daughters (all of whom have no disability at all, by the way). They are the light of my world and by far the biggest blessings in my life. Each of them in their own way inspires me, challenges me, loves me, and makes me one of the luckiest people I know.

brendan and his family
Brendan with his wife and their first daughter

As an adult, you will also be able to make and form new relationships of all kinds. Put in the effort to get to know others, and don’t be afraid to be yourself.

5. Finding Meaning and Enjoyment in Life

Living with a disability automatically brings its fair share of rough days and challenges, which can be demoralizing. All challenges are meant to test us and make us grow. I believe those challenging days should never change who we are. In fact, those challenges make life more motivating. When we overcome those challenges, it makes our lives that much more meaningful.

I feel if you put in honest effort into it, your good days will far outweigh the bad ones.

We all have this one chance to experience life. While being born with spina bifida isn’t what I would’ve chosen for myself, I have instead chosen to accept the hand I was dealt. By doing so, I’ll have a winning hand by the end of the game.

Lastly, live each day for the blessing it is. Don’t forget to stop and look around once in a while. Rejoice in how far you’ve come and what you’ve accomplished. Someday, you’ll be amazed at your capabilities as an adult with spina bifida.

Overcoming challenges makes life meaningful

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About the Author
5 Things to Know About Life as an Adult with Spina Bifida
Brendan is a 180 Medical Patient Advocate, where he visits children, adults, and families in healthcare facilities across the country to support and mentor how he can.

Outside of work, he loves spending time with his wife and daughter, playing adaptive sports like wheelchair softball, and traveling.