On last night’s TV show, Glenn shared the screen with a remarkable man: Martin Pistorious. For years, Martin found himself stricken with locked-in syndrome. He couldn’t move. He couldn’t speak. But he was aware of what was going on around him. He felt the abuse of a nurse who should have been caring for him. He heard his mother at her lowest point telling him he needed to die. How did he make it through the darkness? It’s a truly inspiring story.
Below is a transcript of this interview:
In 1988, Martin Pistorius looked like a healthy 12-year-old boy, vibrant, playful, but inside his body was undergoing a mysterious and steadfast breakdown. It began with a sore throat and ended in the unimaginable. “My muscles wasted, my limbs became spastic, and my hands and feet curled in on themselves like claws.”
Soon, this once imaginative young boy was mute and wheelchair-bound. Doctors diagnosed him with an unknown degenerative disease and gave him two years to live in a vegetative state, but eventually his mind awakened. “Just as a photographer carefully adjusts his camera lens until the picture becomes clear, it took time for my mind to focus. Although my body and I were locked in an endless flight, my mind got stronger as the pieces of my consciousness knitted themselves together.”
His now-functioning brain became acutely aware of the life that surrounded him. For 12 years, he lived as a prisoner, a ghost trapped in his own body. Now, Martin Pistorius shares his incredible journey to overcome physical and mental torment and why he’s pushed the resentment aside to make room for love and compassion.
Glenn: I don’t even know where to begin on this. Here in America, we’ve had a girl who was pretty much trapped in a hospital that we were afraid the hospital was doing horrible things to, and she was just released back to her family. I was good friends with Terry Schiavo, who was a very important case here in America that was in a vegetative state, and they starved her to death. And here you are, I don’t even know, the best case scenario or the worst-case scenario, kind of everybody’s worst nightmare of being trapped inside of your body.
You first get sick. You have a sore throat. You slip into unconsciousness, and then can you describe when you first start coming back and you realize you don’t have control of your body?
Martin: It took a while for me to become fully aware and conscious of everything going on around me. I often say it was like being a ghost, which is why the title of the book is Ghost Boy. You can hear, see, and understand everything around you, but you have absolutely no power over anything. For me, the feeling of complete and utter powerlessness is probably the worst feeling I have ever experienced, and I hope I never have to experience again. It is like you don’t exist. Every single thing in your life is decided by someone else, everything from what you wear to what you eat and drink, even if you eat or drink to where you will be tomorrow or next week, and there is nothing you can do about it.
Glenn: What was the bottom for you?
Martin: Times lots of pain and hurt, and not just for me, but for my family too, because what happened to me had a huge impact on them too. Going through what I did was really rough. I would probably say the darkest moments were when I wanted to die and realized that I couldn’t even do that.
Glenn: You talk about a couple of people in here in the chapter Lurking in Plain Sight. You talk about a woman who came and would molest you, and she was talking to you like you were a doll and would turn your head. You talked about having nightmares at night that she would come and visit you again. Has she been arrested?
Martin: No, not to the best of my knowledge.
Glenn: Have you pressed charges?
Martin: We talked about it. The difficulty was I was so vulnerable at the time I disclosed the abuse, and also there is no protection for the victim, so while it was reported to our local doctor, I don’t think anything came of that.
Glenn: Holy cow. So, your mom, and I understand that you’re close to your mom and dad, but as you said, this tore apart your whole family. Your mother, you had kind of a bad experience with your mom where she was at her lowest period. What did she say to you?
Martin: One night after yet another lengthy argument, my mother turned to me and told me I must die. Obviously at that moment that was a really difficult thing to hear, particularly coming from my mom. I was upset by it, of course, but I never really felt any hard feelings towards my mother for saying that, and if I am honest, it wasn’t something I hadn’t already thought about. I think what probably upset me more wasn’t what she said but that we were in a situation where she felt that everyone would be better off if I wasn’t alive. I feel sad when I think back and remember all the feelings and upset that everyone was feeling. I am not angry or resentful or anything like that. In fact, I feel enormous compassion and love for my mom.
Glenn: How did you get here? How did you have all of these horrible things happen to you and you say to me you feel compassion and love, and you’re happy? When I met you, you smiled just like that. When I met you, you could see it, you have love in you. How did you get there?
Martin: I can only say that it was through God’s grace, because I couldn’t do it on my own.
Glenn: Did you believe in God before? Because you couldn’t communicate to anyone. Did you have moments of feeling connected to Him? Did you find Him through this? Did you ever question Him, like why me? Where are you?
Martin: I don’t know how I came to realize God. He was just always there. I don’t know how to explain it really, but I always knew He was and still is there. I grew up in a Christian home; however, we very rarely attended church. This, combined with the path my life has taken, meant that I never really learned the formalities of the church. Perhaps it is because of all I have been through I became very close to God. There were many, many times where in some sense I felt utterly alone even if there were people around me; however, I always seem to pause when making that statement because while a part of me experienced the extreme loneliness and isolation, another part of me always felt the presence of the Lord.
I found myself talking to God. Perhaps one could call them prayers rather than conversations, even though my eyes may have been open and my hands weren’t pressed together. Through everything I went through, I prayed for help, strength, and forgiveness for myself and others. I gave thanks for the blessings I had and especially for the prayers answered, even if they were as small as someone moving my body into a different position that alleviated the pain. It is amazing what you can be grateful for, simple things that a lot of people may not even think about, like to sit all day comfortably for a while.
For me, God is always there, a constant companion, and yes, I believe had it not been through God’s hand, I would not be where I am today. If I stop and think about everything that had to happen and the odds of it happening then, there is no doubt in my mind that that clearly have happened through divine intervention. And to answer your other question, no, I never questioned Him or wondered “Why me?” I don’t know why. I just never did.
Glenn: Oh my gosh. What would you say to people who have family members in a vegetative state that think that nobody can hear them, that they’re not in there? What would you say to a society? Should we have killed you, as a society?
Martin: That is a really difficult question to answer, because I feel everyone is unique, and every case is different. So, in truth, I don’t know the answer to that question. Obviously, I am very grateful and thankful that I am here now, but what I would say is that there is always hope, no matter how small.
Glenn: I think we leave it at that. I have to tell you, I just emailed my wife before you came in, and I told her that I miss holding her hand. I love couples that hold hands. It screams about their relationship. You two are both, you can see the light in your eyes. You’re just both remarkable people. It’s an honor to meet you both. Thank you.
Martin: Thank you and an honor and privilege to meet you.
Glenn: Thank you. You guys are the best, really an honor.