By Kelly Carr
I met Forrest Theiss when he attended our church several years ago. He told us about the rare genetic disease that was discovered in him and his brother during a medical screening to enter the military. What was thought to be a heart murmur in his identical twin brother, Dan, turned out to be the ACTA2 gene mutation in both brothers, which causes deterioration of smooth muscle and connective tissue, resulting in aneurysms or dissections of their arteries, veins, and organ linings.
Forrest and Dan are only 21 years old and have already experienced many major surgeries (six for Forrest and four for Dan)—and both young men are now paralyzed as a result. But when you meet Forrest, all you see is his big smile and contagiously positive attitude. I wanted to know how he stays so positive and what spiritual healing he has experienced even while his physical health is so traumatic.
Forrest: I grew up Roman Catholic, but my older brother, who I looked up to, is agnostic and I tended to follow his lead. Plus a lot of my friends growing up weren’t religious. Lastly the divorce of my parents and death of my highly religious grandfather also deterred me from a journey in my faith. That is, until I had my first run in with death.
My first open heart surgery in 2012 was crazy. I was told I should have been dead weeks before and that I had a 15% cumulative chance every hour of dying until I had my surgery. For some odd reason I was laughing through it, was calm, and felt I would be OK. But regardless, I still had a panic feeling in the back of my mind. Little known to many people, I prayed.
I said, “God if you’re up there I am sorry. I should have been a better person, and I regret hurting people in high school and not cherishing what I had.” I thanked him for all the love in my life and apologized for being a rude, pessimistic, and mean person sometimes. I asked him to forgive me for hurting my brothers and asked that my twin brother’s surgery would go well. Finally I told him that if I died I wouldn’t blame him and was not scared. But if he let me live I would do my best to cherish what I had and improve.
I went into surgery and came out fine. Two days later Dan did as well. I still thought anyone who shared their faith was being pushy and annoying. I still had a lot of growing up to do, and boy would God make sure that happened.
Both Forrest and Dan had brain aneurysms developing. Dan had a stroke and Forrest feared the worst for his own health. When Dan had to have a second open-heart surgery, Forrest paced the hospital floors.
Forrest: It was nerve racking. When it was time to get the results, I entered the doors and felt a swoosh of blood pressure rush through me. My left side of my body got weak, and I knew I was having a stroke. So I hobbled over to my surgeon—he took one look at me and knew too. He rushed me to the ER across the hospital. I got the clot busting medication within 15 minutes and only suffered slight loss of feeling in my left wrist after it all.
My parents were running around between my brother in the cardiac ICU and me in the neuro one. It was the next morning we found out my brother was paralyzed and in critical condition. His body swelled immensely, he needed a breathing tube, and the surgical wound was getting worse. In the week after surgery, his body was shutting down because the tube fed him for so long. I called two of my old teachers in New York for support and they flew out to see us.
Little did I know God had given us such a blessing of support, not only from my parents, older brother, family, but teachers and friends. A few of our nurses and doctors prayed, but I still shrugged them off ignorantly at this point. My promise to God still rang through the back of my mind.
After many weeks in the hospital, both Forrest and Dan were able to go home.
Forrest: At this time I met a girl. She started to take me to church, and I started feeling closer to God. I went with her almost every Sunday. The preacher was down to earth like me and we immediately hit off a friendship. He answered questions I had and the congregation as a whole supported me without being pushy like I assumed all godly people were. I really got a different side of things.
I got a taste of how much I was cared about by the Lord and his followers in March 2013. I found out my descending aorta dissected as well and I needed surgery. I dreaded it because it was like Dan’s last surgery and was relieved when our surgeon had a different plan of attack. He planned on stenting my aorta and averting blood flow with a bypass. He hoped I wouldn’t need an open heart for years down the road. The minister came in to pray for me before getting airlifted to Cleveland. Knowing that people were praying for me and loved me really helped keep my positive attitude.
It was only supposed to be one surgery, but due to complications I ended up with two in one day. But I was saved from paralysis as my brother experienced. My body crashed and I had a breathing tube for four days. It was very traumatic and to this day I still panic when I wake up with one. I was in the worst pain of my life for a whole day and then I was fighting severe weight loss, dehydration from throat paralysis caused by the breathing tube, severe pain, and mental and emotional strain.
Many times in the hospital I wanted to give up but in the back of my mind I did not want to let God, my family, my friends, or myself down. I found it in myself to push as much as I could.
I spent a month in the hospital. Unfortunately I was only out for a day. My whole leg went numb and I could barely stand. I was rushed back to the hospital, where they did a third and final stent surgery.
Again my life was spared, and I could never figure out why. I never saw myself as worthy. Yet I was glad that I was bestowed this so no one had to go in my place. It felt like I was born for this; it was as if I had a purpose—part of which was to show people that despite all this horror, a person can still be happy, choose to love life, and live a normal life.
I tried college a second time. But I realized I made the wrong career choice as my intestines inflamed from stress, and I had to drop out. So I returned home and helped my family by being the caretaker for my brother. I drove him everywhere and we played sports together. We had a blast and it was a great time to be together and to help each other out.
In May 2014, one of Forrest’s brain aneurysms was getting too big, so he faced another surgery.
Forrest: At this point in my faith I was beginning to be more open, and I prayed more frequently and had much more confidence and hope in my future, knowing no matter what I had an everlasting love. Plus it helps the spirit, in my opinion, to feel like you’re part of something bigger than yourself, that you’re able to be like Jesus and touch other people’s lives in such a positive way. Thankfully my prayers were answered and this surgery went without a hitch.
In June I thought I had pneumonia, but it ended up with a rush to the hospital where they discovered a blood clot in my lung. I knew in my heart that it would all be OK. And sure enough, I made it out safe, even though the rest of the world thought I was dying.
When I got back home I did some self searching and realized that even though I had broken up with my girlfriend and couldn’t get to the church I had attended with her, it shouldn’t stop me from finding a new place to worship God. I started attending West Mason Church of Christ with a close friend. At first I felt like every sermon was directed at me because I had doubts. They always seemed open to talking about things so I brought it up with the minister. I began to learn and grow and see that the church genuinely cared for me and wanted me to someday go to the most amazing place imaginable, Heaven.
Forrest became involved with the church and eventually got baptized. He also met his current girlfriend there. In 2015 Forrest had another immensely painful surgery back in Cleveland that left him paralyzed. But Forrest has remained strong and holds on to hope.
Forrest: My family prayed and had people I didn’t even know praying every day. I got cards and gifts from my church family. Friends drove hours just to see me for a day. My girlfriend and family drove up every weekend. I always had at least one family member with me. And most of all is I had the support of God.
I let go of the doubt and disbelief, and now I believe that God can get me through this so I can survive and live a long happy life. I believe that I can find happiness in a life that seems like one tragedy after another. God gave me everything I needed to never stop smiling or give up. He made me strong.
I honestly don’t know how I cope with everything. In my mind I’m just doing what any person would do. Just keep on chugging and live. I could worry about dying during surgery or after surgery or worry about how long my life span will be. But I learned that this isn’t going to go away, so I might as well accept that I have my mutation and make the best of it. I also have one wicked sense of humor! I laugh about everything. It keeps me calm. And when you’re calm you can put your priorities in order. I learned that sharing with friends and loved ones and God keeps me going.
Though I don’t have complete physical healing, I feel like God has given me spiritual healing in many ways. He has allowed me to be mature enough to see what is important life, to see how much love this world has to offer and the opportunities it gives you to do good and make it bright. He has brought me back to him and made me more blessed and happier than I have ever been. That grows every day. I thought I would never find love and yet I have the best woman in the world supporting me. I thought I would be dead by 20 but now I believe I can make it to 50 or 60. He has given me more hope than I could ever ask for.
With God there is hope; with God there is love. I am a better man and have been given a second chance with him. There is nothing that could feel more healing and calming than that.