So, what happens after someone tells their God Story at Eastbrook? For Tricia Schmidt and Alexandra Thiessen, it was through telling their stories at different services last year that a truly special link was formed, and a spiritual friendship forged. Both women suffer from rare neurological disorders, among other things, that have stumped doctors for years. Both women have been to Mayo clinic, and have suffered through chronic, debilitating and lifestyle-altering pain. Tricia and Alex recently sat down over coffee to talk about how they met, how God has used their friendship over the past few years, and what it means to walk the hard road of suffering. Their conversation was so beautiful that we are printing it unedited.
On Becoming Friends
Tricia: Alex mauled me in the lobby after I shared my God Story in church a few years ago. She ran up to me saying, “You have a rare neurological disorder? So do I!”
Alex: (laughing) I had to get a small pep talk from my husband first. But you might as well put your weirdness up front so that people know right away that this isn’t going to be a normal friendship.
T: Then we met up after that. We exchanged phone numbers and started meeting up for awhile. I started getting better but you were not so much.
A: Yeah—I told my God Story a year or so ago at one of the 2nd Tuesdays: Worship and Prayer nights.Through being involved in serving at the Bread of Healing Clinic, they had diagnosed me, and found treatment that worked. But a few months later, by the time Tricia told her story in church, I wasn’t doing okay anymore. So it was just interesting.
There was this expectation that everyone had that God had worked through my life and that meant that my circumstances were going to be completely worked out in this perfect, Hallmark kind of a way. And that’s just not how God worked.
He offered a temporary treatment which was incredible, but then the wheels started falling off my health again. And in the midst of that, Tricia gave her God Story and so I was able to reach out and just be really honest with her.
T: And every time we talked about our stories, whoever was talking, the other one would be like, “YES! YES!” We understand each other’s struggles. Alex’s faith is super inspiring to me. She has to stay home a lot, she doesn’t have a lot of energy and she’s very fragile.
A: I’m allowed out twice a week by my doctors.
T: So she gets lonely at home and she thinks she should just be happy being home alone with God.
A: But see, for the longest time, I was! I was with Jesus every day around Scripture. And honesty, whether I laughed or cried with him, I had this soul satisfaction knowing that I am here with Jesus and even if all I do is cry all day, He will hold my hand. What’s been difficult recently is that I haven’t felt that palpable presence of Jesus with me. The only thing that made the suffering okay is that it magnified [His] presence to me, it feels like the only good that comes out of the suffering is closeness with [Jesus] and being refined in the fire of adversity. And so, Tricia’s been helpful, reminding me that faith is holding on, being sure of what we hope for and certain of what we don’t see. When you don’t feel God showing up, you choose in faith to say, “God is here.”Tricia’s been really helpful for me in that.
T: Which is ironic to me because I could never sit at home and be still! But I’m just amazed by you—I am awed at your strength. To sit home, and be with God and be content with that. It absolutely amazes me!
A: (laughing) That makes it sound like there’s a halo over my head every day. It’s a place of brokenness, is often what it is.
T: That’s where you grow.
A: Right. It’s where I’m growing. There are plenty of tears and there are plenty of days when I say, Lord, you should be enough, and yet I wish—I wish I could go out, I wish I could be at the grocery store, I wish I could do everything our culture says I should do but I can’t. But you (Tricia) help me remember that it’s normal and when I have a day like that I should not be kicking myself.
T: One of the big lessons I learned was to have compassion for myself. After I gave my God Story, I was like “Oh, I’m so much better!” but I was in total denial and I wasn’t so much better, I was halfway there, and I still had bad days all the time. I realized I wasn’t so much better when I still had to miss a lot of work because I was ill all the time. I almost lost my job. So I went and saw a doctor. I was talking about all the hard things I’ve gone through in life and he was like, “So if someone like your husband or children were to go through this, how would you want them treated and how would you treat them? Why don’t you have that same compassion for yourself?” (To Alex) You’re human! If anyone else you knew was going through this, you’d say, I’m sorry that sucks. I wanna pray for you. You can do the same thing for yourself!
A: See, she’s giving me a pep talk right now!
A: She’s really good at that.
T: God’s that way with us. He says, “You’re my child and I have compassion on you and you need to have compassion on yourself.”
A: Jesus is amazing that way. When He has the right to condemn the woman who has been caught in adultery and He says “Neither do I condemn you.” I mean, He’s not the Savior who condemns. He’s the Savior who finds something redemptive in what we’ve done and even when we’ve messed everything up, He encourages us. I guess that’s what we should be doing for ourselves.
T: When we were at life group and talking about the message [in the sermon series on Job], one of the guys said, “Tricia, you know about suffering.” I just like want to be in denial and have no part of it, and I told people in my Life Group that I just want to cartoon-run away from it! Why does it bother me that people associate me with suffering? Because I did go through a really hard time. I was talking to my step-mom and realized that while I want to run away from what I have experienced, I want to deny and ignore what happened to me, it’s what happened to me that made me who I am today. I need to envelope [my suffering] as a complete part of my life along with all the good parts. That’s a BIG, HUGE part of who I am. I got so close to God through that. I was really not very close to God before I went through that. It’s hard though because now I am a lot better and Alex is not so much better. I told her last week, I have survivor’s guilt!
A: Which you shouldn’t. It’s a joy to see you better. The only thing that’s worse is if we’re both feeling really crappy. But today is good, today I’m feeling good.
On Vulnerability and Transparency
T: Everyone pretends that everything’s good and so this transparency that we’re talking about [at Eastbrook right now] is refreshing. We lost our first pregnancy at 12 weeks. It was our first pregnancy and so everyone knew that we were pregnant and when we lost him, everyone knew. [Miscarriage] is a sad, sad thing that no one talks about. I found that the only thing that would make me happy was talking about it and talking about our baby we lost. But you still feel like you can’t talk about it!
That’s when I realized being vulnerable and talking about what you’re going through is great. It’s necessary.
But not only that, people who’ve lost pregnancies since then come to me. It kinda sucks but it’s kinda awesome because I know exactly what they’re going through and how to comfort them and what to say and what are their insecurities and worries. We lost our baby right before Mother’s Day and so that was the biggest thing in my mind: Am I a mom? But I was.
A: You were a mom.
T: I had a cousin who, a year or two later, lost her first pregnancy right before Mother’s Day and that was the first thing I said to her. I said, “You’re a mom, Kayla. You are.” But being vulnerable and transparent, it’s not just you, it’s being able to help others who are going through what you’re going through.
A: I am a really private person, just in general. (To Tricia) You’re like my little secret soulmate so I tell you everything, but I usually don’t tell people things! I’ve had an autoimmune disease since I was 15 but no one in my life other than my immediate family knew until I was 23 until it became so bad that it was super-obvious. I hadn’t told anyone at church and we lived here for a year and a half or two years when they asked me to do my God Story. I wasn’t sure.
My instinct was to hide my story and say that it was my private thing to grow from. I was praying about it when I was driving home from church and talking to Jesus about it and that’s exactly what He said to me. He said, “You have no right not to share this story. It’s not your story, it’s my story. I wrote it, I’m the one working in you, I’m the one working in your circumstances. It’s not about what you have done, it’s about what I am doing. You have no right not to share my story.”
It was so difficult for me because I though if I got up in front of the church, people would walk away from the friendships I had. People had done that in the past. In the past, people had said things with good intentions but they were very hurtful.
T: That sounds like Job’s friends!
A: It was exactly like Job’s friends. Man…did that take some “Big Girl Christian Pants.” Big Girl Christian Pants stink when Jesus is like, put on the pants. Tell my story. Be transparent.
A: It is so hard. But do you know what has really helped me every time people say things like that to me, I go to Jesus. The Bible says that you [Jesus] understand everything I have experienced. You understand every suffering, and every moment and dream and fallen hope. The other week I was talking to my mom [about my upcoming hospitalization] and it felt like she didn’t understand what I was going through. It really hurt my feelings and I was like, “Jesus, I’m really frustrated with my mom right now…she doesn’t understand.” And He turned me to the story in John 7 where He is walking to the Cross. He had just told the disciples that He was going to be crucified, and what do the disciples do? They start fighting. I felt like Jesus was saying to me, “I get how you feel…I had just told my friends about my suffering, I bared my soul, and they were so wrapped up in who would be sitting on a throne that they completely forgot about my suffering.” It’s so nice that Jesus is so alive and we can pray to Him and He can be like, ”John 7.”
T: The biggest comfort [in the midst of suffering] is that some good would come from going through such a hard time. But I say that in faith because we don’t necessarily know what good comes out of it. We might not ever know.
A: I am the cheesiest answers but I really mean them! For me, it’s definitely the Bible. About 3 years ago, there was year they told me I probably wouldn’t live until the end of the year. I weighed 85 pounds and I could only leave the house to go to the pharmacy. When I went, people would stare at me and some would make comments. And so I carried Bible verses on note cards in my purse. So anytime people would say something to me like, “it’s disgusting to be so skinny,” even though I had no choice in the matter, I would get out my cards and I would read what the King says, “You are precious and honorable” (Isaiah 43:4). I made those cards my truth. I made them my self-esteem. My self-esteem was so wrapped up in what the world said about me. I had to say that I reject what you, with imperfect eyes, see as the truth and hold only to what God said. I started memorizing scripture that year, really because I read the notecards so often they just started falling into my memory. Ever since, I have a lot of free time and I make it a goal to commit Scripture to memory. Adam [my husband] and I want to move to Africa and do medial missions and I figure that maybe I am preparing now for what I will need then? We have to saturate our minds with that truth to push away the lies. Because we grow up with the lies, we embrace the lies, we believe the lies, in these subtle ways that Satan likes to take hold. Scripture has been the biggest blessing of being sick. I get to pause and step out of the busyness of life.
On a Theology of Suffering
T: I’m a firm believer in God’s will. I am willing—somewhat reluctant, but willing. I have the faith enough to accept God’s will no matter what it is because I know that His plan is better and stronger. I tell Alex, it’s very easy for me to say these things right now because things are better. But even when I couldn’t get out of bed and my kids were crying because Mom couldn’t play with them, this was true. God forms us in a very special way for very special reasons that we may or may not know. And prayer gets us through that. I mean, I’m an ER nurse. So I see everything. I see everything that happens for no reason and sometimes for a reason. And I know of millions of people worse off than I’ve ever been. I’m just grateful that I know God and have the opportunity to trust in Him and have faith in Him. I don’t know how I could go through something like this and not have God. I don’t know how I could do it.
A: Um…I guess this is sort of cheesy and can sound like a Hallmark moment but I mean it. I’ve never asked God, “Why me? Why have I suffered?” I’ve asked God, “Why not me? Why have I experienced any goodness in the midst of this brokenness? Why do you sit with me every day even though I can’t persevere and have a good attitude because I”m suffering?”
There are days I feel very broken and my life feels very empty. But I can never forget who’s sitting with me. I guess. As to the why, I agree with Tricia. I have autonomic autoimmune ganglionopathy which is a neurological autoimmune disorder that affects one in 6 million people. So there are fewer than 1000 diagnosed cases in the world. The doctors are always trying to answer that question, “Why? Why did you get this?” I don’t know why I got this. It’s the flukiest thing. But I trust that when I get to heaven, someday Jesus is going to show me why He allowed this into my life. I don’t believe He made me sick but I believe He allowed it. I believe He knows my heart of hearts and He knows that when I am the full woman of God He desires me to be, I will look on His purpose and say to Him, “Lord—it was worth it.” I think He knows that I would give Him retrospective permission. If my Dad comes any closer to accepting Jesus as his Savior because He saw me go through this, it will be worth it. I just think sometimes God allows us to go through suffering because He knows our hearts better than we do. He says, “I know if you knew the cosmic struggle at play here, you would say, ‘Bring on the suffering.’”