Faith in the Midst of Bewilderment

My faith in Deep Brain Stimulation has never left me in the midst of bewilderment. Last year, I spoke about my dreams for my upcoming deep brain stimulation or DBS surgery and my hope for it to be my home run in kicking kernicterus on its butt. I live with kernicterus, the brain damage caused by newborn jaundice that caused my cerebral palsy. I also said that even if DBS didn’t work, that I’d be fine, because of my outlook on life. I’m pretty positive and see the world as a glass half full not half empty.

Justin laying in hospital bed, brother sitting in chair with game controller

Well, DBS did not work. Last spring, I went through 2 long surgeries and 3 weeks after the second one discovered that I had a staph infection. By August, the deep brain stimulation wires to my damaged basal ganglia deep in my brain and stimulator in my chest were gone because my war with the staph bug couldn’t be won.

What is hard for me, is that it had been working. People could understand my voice. I could make a peace sign with my fingers. I could type better on my computer. And then it was gone. I felt like crap. It’s exhausting when life doesn’t work how you had dreamed. How do you hold onto faith and hope in the midst of bewilderment?

 

I believe that hope lives in me because I have faith in myself and in other people and in medical advances that may make my life a little easier someday. Last year, DBS failed me. I am not going to give up though. I’m going to try it again, because it was working.

When you hope, you can do hard things like fight an infection and stuff. I have faith that I can stay strong no matter what happens, and that for those moments when I need extra support and love to get me through the tough times, that my friends and family are there to hold me up. Because of that, I can do amazing, scary things like go through surgery that is risky but could also hold a lot of hope for me.

You may think I’m crazy, but we have set the wheels in motion for going through it again this summer – two more long surgeries and the hope of a little more control over my uncontrollable movement. The doctors are going to do everything they can to prevent infection but there are no guarantees. There never are. A life with guarantees would be boring. I hope for a better result this time. I have faith that you will all be there to hold me, and my family in love even in the midst of more bewilderment and uncertainty.

So, what do you take away from this? That some people deal with a lot of heavy stuff? Tears? Inspiration? Pity or feeling sorry for me? I don’t want pity or people feeling sorry for me – I truly am fine and disability is just part of normal – but it can be tough and that’s why I share my true story. What I want for you to take away is that maybe my story can help you deal with the heavy stuff you may be facing – that you’ll be able to hold onto your own faith in the midst of your own bewilderment. This is all that any of us can try to do.

Thank you and hold onto your brave!

Originally presented in February 2015 at WBUUC Youth Service, posted June 29th, 2016

Looking Towards the Future High School Graduation Speech

Justin in graduation gown near podium 4 adults standing and applauding

The video that my dad took is on my YouTube channel.

Imagine a small group of 10th graders sitting around a computer in my bedroom. There’s laughter, discussion, sharing ideas, and lots of cookies. I had my section about Civil Rights and sports in the 1960s ready to be added to the lengthy PowerPoint. Another student was creating the jeopardy game. A young woman was writing up the plan for our class presentation. Another two guys were figuring out what we would wear. Remember the American History decades project? For me, this was an experience I will always remember because we all contributed to the project in meaningful ways to get that “A.”  In addition to learning about the 60s, I believe we all learned a lot more about teamwork, respecting differences, helping others, and knowing that each of us has so much to offer when working together towards a goal. This was inclusion at its best.

John Green writes in the book Paper Towns, “It is easy to forget how full the world is of people, full to bursting, and each of them imaginable and consistently misimagined.” All of us are unique and face difficulties. It can feel lonely in the rest of the world when you have any kind of perceived or real difference. There are many times when I feel like an outsider because I do not think people imagine me complexly or know what to say to me. I imagine that there are many of you who have felt the same. We all need to take the time to truly get to know people around us. As we go out into the bigger world, remember to make the time to listen to and include those who may be isolated or alone. Go beyond the simple “Hello, How are you? What’s up?” Because of my experiences with fellow students for the decades project and other friendships in my life, I know you can make such a huge difference in just one person’s life.

As we go through life beyond high school, each of us will face our own challenges. Why do we have struggles and why do some have more than others?  It’s not that easy for me to do what I want to do because I have cerebral palsy. It is as if my muscles all have their own individual brains and none of them are listening to the brain in my head. Imagine that most people cannot understand your voice and that it takes you several minutes to type every sentence that you want to share. It is annoying sometimes when people do not realize that I, along with others with disabilities, have a lot to say and need others to take the time to listen.

Disabilities or any other challenges that you’re going through do not define who you are. I didn’t choose to have my disability but I do get to choose how I live with it. When you find yourself up against obstacles in your own lives, you are the ones who get to decide how you face those challenges. Most of the time I hold on to hope. I find ways to fight my goofy muscles and try to do what I am able to do. I focus on those things that are meaningful to me such as my love of creative writing or getting lost in a good book.

Can any of us face challenges on our own?  No.  I am lucky because I have an amazing family, helpers and friends. To fight through tough times, we all need to draw on what gives us strength and it is important to ask others for help along the way. But don’t wait for someone to ask you for help. Reaching out in simple ways can make an amazing difference to a person who is struggling with whatever life brings.

We leave here tonight, each of us with a unique universe to explore. Open your minds to new ideas, new people, and new experiences. There will be challenges along the way, but we need to choose the infinite possibilities to create a more inclusive society where we see value and dignity in all people.

Originally written for and presented at my High School Graduation in June 2016

Being Human: Living with a Disability

Why do I have a disability? Why me? Why does anybody have a disability? These are questions that anybody might ask. Why do we have struggles and challenges? And why do some have more than others? It’s not that easy for me to do what I want to do because I have a condition called kernicterus. 

What is kernicterus? I can tell you. When I was hardly a day old, I got sick with newborn jaundice. Did you know that severe newborn jaundice can cause brain damage called kernicterus? For me that means athetoid cerebral palsy or CP, auditory neuropathy, which means my hearing is like a static-y radio, visual tracking difficulties and so much more. And did you know, it could have easily been prevented with a $1 blood test and treatment? What happened to me was an easily preventable medical mistake.

So, what is it like to live my life? Sometimes it’s really hard and I have down days. It’s as if my muscles all have their own individual brains and none of them are listening to the brain in my head. Think about having to rely on someone else to give you a drink of water or feed you or arriving at restaurants where you simply can’t go in because there are stairs. A 3” step or curb is a mountain that can’t be climbed when using a power wheelchair. Imagine that most people cannot understand your voice and that it takes you one or two minutes to type every sentence that you want to share. It is annoying sometimes when people don’t realize that I have a lot to say and need them to take the time to listen. Part of the reason that I write these kinds of essays is because I have the time to make my voice heard.

I didn’t get to choose whether or not to have a disability, but I do get to choose how I live with a disability. A lot of the time, I find a way to fight my goofy muscles and try to do what I am able to do. I work hard to live life without limits. I love to learn, especially about creative writing, literature, and history. I love school and I love to read. Being an author means the world to me because writing calms my soul.

Justin is boy in wheelchair with his younger brotherCan I fight the difficulties on my own? Can anyone face challenges on their own? No. I am lucky because I have amazing parents, helpers and friends. I have a team of doctors and therapists. All of them try to figure out what will help me do the things I want to do. I also have a brother who loves me and is my best friend. Grandparents, aunts, uncles, and cousins are part of my team. People, even strangers, hold me in their hearts. I find courage in knowing that people believe in me and support me.

What is my dream and what is in my future? I will do what I want to do and live where I want to live. Minnesota is failing countless people with disabilities by providing little support other than in sheltered workshops and group homes. (Serres) Do I want to be forced to work and live where I don’t want to? Nobody does. I’m going to go to college and figure out how to live where and with whom I want to live. Even though the employment rate for people with disabilities working full time is only about 26% in Minnesota, I will do what it takes to work in a meaningful job where I will give back to society. (Mourssi)

I am Justin Smith and I am determined and want to live my life without limits. I am a human being like any other. We all have challenges and struggles we face. I choose the possibilities not the disability.

Sources

Mourssi, Mohamed. “Department of Employment and Economic Development.” Disability Employment in Minnesota. Minnesota Department of Employment and Economic Development, Oct. 2013. Web. 03 Jan. 2016.

Serres, Chris, and Glenn Howatt. “Sheltered: How Minnesota Is failing the Disabled.” Star Tribune. Star Tribune, 8 Nov. 2015. Web. 18 Nov. 2015.

Originally published on my previous blog site on 4/14/16