Unstoppable: How Tim Tilt Of The UCB Epilepsy Advocate Program Has Redefined Success While Navigating Society With Epilepsy
Even if you are disabled, you can help others. Don’t let your disability cause you to just sit there and expect to be waited on. Keep on keeping on. People with disabilities should not let what others around them feel is normal hinder them.
As a part of our “Unstoppable” series, I had the pleasure of interviewing Tim Tilt.
Tim Tilt was born in Alberta, Canada. After growing up mainly in Peru, he moved to the United States in his 20’s. During this time, he experienced his first temporal lobe seizure and was diagnosed with epilepsy. In 2006 after living with epilepsy for nearly three decades, Tim joined the UCB Epilepsy Advocate program, where he actively participates in a community of those living with epilepsy and their family and caregivers and shares his experience with epilepsy to help support others affected by this condition. Tim currently resides in San Antonio, Texas with his wife.
Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?
My parents were missionaries, and I grew up in South America. In my 20’s I left to spend a summer in Nevada with my brother, then attended college in Dallas, Texas. By the time I was 24 years old, I was an Air Force firefighter and in the best shape of my life. I’d met and married my beautiful wife, Chris, and had our first child. Life couldn’t have been better.
Then my world turned upside down.
I had my first epileptic seizures in 1979 when I was 24 while in the Air Force on active duty. Because of my seizures, I decided not to re-enlist and went back to college at a local junior college and then the University of Texas in San Antonio. After graduating, I got a job with a civilian contractor at a local military base for the Air Intelligence Agency and National Security Agency. Stress is a major seizure trigger, and I ultimately became suicidal and severely depressed as a result of the high-pressure nature of the job and negative treatment from coworkers. I have since medically retired and am doing well. I have been working for a psychologist for the past 21 years part-time as a secretary/receptionist.
Do you feel comfortable sharing with us the story surrounding how you became disabled or became ill? What mental shift did you make to not let that “stop you?”
I had my first seizure while riding to work on my motorcycle. I remember going blank for what felt like a second, and the next thing I knew I was off on a country road and had no idea what happened. At first, I thought it was a fluke, but it happened again a few months later while I was driving my car down the interstate. In this instance, when I came to consciousness, I was on a poorly lit street in the city with my car showing signs of collision with a guardrail. I went to the Air Force base clinic and was asked if I was driving under the influence. Once the medical staff realized I hadn’t been, I underwent several tests at the hospital.
We found out that I had been experiencing temporal lobe seizures, a type of seizure that begins in the temporal lobes of the brain, which is important for processing emotions and short-term memory, and I was diagnosed with epilepsy. I didn’t have a family history of epilepsy, which was surprising to some of my doctors because I also had not sustained a head injury that might have caused my epilepsy.
Even with medication, I was still averaging dozens of seizures and hundreds of auras — a warning sign of a potential seizure that is characterized by a physical, emotional or sensory change — a month. I was desperate to get better seizure control, so my doctors and I investigated new treatment options. Together, we decided to move forward with brain surgery to implant a vagus nerve stimulator (VNS). The device is implanted in the upper-left corner of my chest and has a wire that runs to the vagus nerve and stimulates the nerve with electrical impulses. When I have an aura, I activate it with a magnet to prevent a seizure. It has also greatly helped with my recovery time. Before my first VNS, which was implanted in 1998, it would take me several hours to days to recover. Now, it’s almost like flipping a switch; when the aura’s over, I go right back to what I was doing.
Even though the VNS surgery significantly lowered my number of seizures, I still need an automated external defibrillator, which analyzes the heart’s rhythm and, if necessary, delivers an electrical shock to help the heart re-establish an effective rhythm, to maintain seizure control. I’ve since had the VNS replaced three times. I also had a left temporal lobectomy in 2004, where they removed the left temporal lobe of my brain. Since this surgery, I’ve only had eight complex partial seizures that I’m aware of, although I still have auras on a regular basis.
Throughout my journey, it has been important to be aware of the effect that epilepsy can have on mental health, so that I can ask for help when I need it. It’s taken me years to understand that having epilepsy doesn’t mean I can’t live a full and rich life. I can’t let epilepsy ruin me or ruin things for my family. This shift in mindset has been integral to my epilepsy and mental health journey, and I am thankful to have a strong support system in my family and friends.
Can you tell our readers about the accomplishments you have been able to make despite your disability or illness?
I am unable to drive due to the severity of my seizures, but I am proud of the ways I have not let this confine me. My new commute to work takes around 1.5 hours on two different buses, which isn’t ideal, but I’ve decided I can get anywhere by bus, walking, or by asking family or friends if they can drive me.
I’m also proud of the positive shift in my mindset. Depression is very common for people with epilepsy. It became worse when my seizures were in clusters, as they were confusing and frustrating for me and my family. I still experience seizure clusters, groups of seizures occurring closer together than normal, from time to time, but even when it was worse, I refused to let it hold me back. Depression has affected my wife, kids, and now grandkids, but I can’t let it ruin me, and I can’t ruin things for them.
I know everybody deals with epilepsy differently, but I’ve decided that life goes on and I’m going to live as close to normal as I can.
What advice would you give to other people who have disabilities or limitations?
Living well with a disability can be done, but you must make the choice to do so. You have to be determined to not let any disability define you or keep you from living a full life. And you can’t do that without support from your family and friends. On rough days, it’s encouraging to know they’re there doing everything they can to help. Personally, I have decided that I’m not going to let it hold me back and I’m still going to do things I normally would, like enjoying my favorite hobbies like cycling (I try to ride 10 miles in every day). Simply put, life goes on, and it’s worth living.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
I am thankful for my family and friends continuing to be a strong support system throughout my journey, and especially when depression led me to hit rock bottom. I would have a few good weeks, and then seizures the next week. It got to the point where my children would feel responsible in some way and ask, “what did I do?”
UCB’s Epilepsy Advocate program, a community of people living with epilepsy, their family members and their caregivers, has also been a great resource for me. This community was created in 2006 by UCB, a biopharmaceutical company that focuses on neurology research and treatment. I have made wonderful friends through this program and have been able to stay in touch and communicate with the community through channels like Facebook and email.
I also have had three or four doctors who have really stood up for me. The first time I met with a physician at the Veteran’s Affairs (VA) administration clinic, I learned that his daughter has epilepsy. I couldn’t have asked for anything better for me because he understood, on a personal level, what I was facing. We went back and forth sharing our stories, and it made a difference in my treatment there. My epileptologist and neurologist at the VA have also completely supported me.
Even though no one had ever seen me have a seizure, none of these VA doctors accused me of faking my condition, like the experience I had at the clinic after my first seizure where they accused me of driving under the influence. This was a huge relief.
How have you used your success to bring goodness to the world?
Through the Epilepsy Advocate Program, I made friends and met people who understood what I was going through, as well as caregivers who have endured similar struggles to my family. I have found it very fulfilling seeing how sharing my experiences helped them better understand epilepsy and how to take care of their loved ones. Even in the medical setting, I’ve had the privilege of connecting with several of my doctors who have reached out when they have a patient contemplating a VNS procedure.
I’ve spoken to groups as small as six people all the way to several hundred people. I never expected to have such a positive impact on others or the impact it has had on me.
It’s been a huge blessing to know that even though I have epilepsy, I can help others. For example, a woman I used to work with has a daughter with epilepsy. During a visit to Alberta, Canada, her daughter was badly injured from a seizure and ended up in the hospital. She called me and I, luckily, was Facebook friends with someone from an Alberta-based epilepsy group. I sent them a message, and they responded within five minutes with phone numbers, doctors’ names, etc. It felt great to be a resource for someone else in need.
Can you share “5 things I wish people understood or knew about people with physical limitations” and why.
- I wish people understood that just because a person is physically disabled, it doesn’t mean they are any less intelligent.
- Even if there are limitations, I want people to know those with disabilities can still do so much.
- Some disabilities need accommodations, but you can do amazing things with the right accommodations.
- Even if you are disabled, you can help others. Don’t let your disability cause you to just sit there and expect to be waited on. Keep on keeping on. People with disabilities should not let what others around them feel is normal hinder them.
- There are all kinds of disabilities that are not visible to the eye that affect people in different ways even if they look “normal.”
Can you please give us your favorite “Life Lesson Quote”?
There’s a verse in the Bible, Romans 8:28, and it says, “All things work together for good for those that love God and are called according to His purposes.” To me that’s extremely encouraging to know that I am here for a reason. That there’s a plan and purpose for my life. I try to live by that daily.
We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂
Joni Eareckson Tada. A swimmer and diver in high school, Joni broke her neck and became paralyzed. To see her now, decades later, as an author, a speaker and an artist really inspired me. She didn’t let what, to us, would be a horrible thing ruin her life. Now she paints beautiful pictures holding the brush between her teeth. If she can paint, write books, and speak with that limitation, then why can’t I? Just knowing about her is a real inspiration to me.
This was very meaningful, thank you so much. We wish you only continued success on your great work!
Unstoppable: How Tim Tilt Of The UCB Epilepsy Advocate Program Has Redefined Success While… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.