Robert Kapen was an athletic college student studying Parks and Rec and working part-time at an outdoor Young Life camp when his life turned upside down. In 2011, an unknown virus caused a bilateral stroke that left him suddenly paralyzed from the chin down. With his mind fully functioning but no ability to move or speak, Robert felt trapped in his own body. Over the next 8 years, Robert diligently engaged in speech, physical, and occupational therapies. When he was moved to a rehab facility located near the workplace of his friend, Nelly, she began visiting him regularly to brighten his day. As Robert’s communication developed from blinking to texting, his friendship with Nelly also blossomed into a relationship and eventually marriage. This week on the podcast, Robert and Nelly are sharing their story of God’s generous provision through seasons of disability, recovery, marriage, and caregiving. And as Robert approaches his 10-year anniversary of paralysis, he is thrilled that in God’s providence, he has found his voice to record his first podcast interview alongside Nelly!
Robert Kapen was an athletic college student studying Parks and Rec and working part-time at an outdoor Young Life camp when his life turned upside down. In the summer of 2011, a mystery virus caused a bilateral stroke that left him suddenly paralyzed and unable to speak. With his mind fully functioning but no ability to move or communicate verbally, Robert felt trapped in his own body.
Over the next 8 years, Robert diligently engaged in speech, physical, and occupational therapies. When he was moved to a rehab facility located near the workplace of his friend, Nelly, she began visiting him regularly to brighten his day. As Robert’s communication developed from blinking to texting, his friendship with Nelly also blossomed into a relationship and eventually marriage. This week on the podcast, Robert and Nelly are sharing their story of God’s generous provision through seasons of disability, recovery, marriage, and caregiving. And as Robert approaches his 10-year anniversary of paralysis, he is thrilled that in God’s providence, he has found his voice to record his first podcast interview alongside Nelly!
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Crystal Keating:
I'm Crystal Keating and this is the Joni and Friends Ministry Podcast. Each week we're bringing you real conversations about disability and finding hope through hardship, and sharing practical ways that you can include people living with disability in your church and community. Be sure to subscribe wherever you listen to podcasts or find us at joniandfriends.org/podcast.
In the summer of 2011, Robert Kapen's life was turned upside down after an unknown virus caused a bilateral stroke, leaving this young athletic man fully paralyzed with no ability to speak. Today, Robert his wife, Nelly, joined us together on the podcast to share their inspiring story of God's generous provision through seasons of disability, recovery, marriage, and caregiving. Welcome to the podcast, my friends. It's wonderful to be with both of you today.
Robert Kapen:
Hey.
Nelly Kapen:
Hello, Crystal!
Crystal Keating:
Hello. I just love our friend story. You and I, and Robert met through Joni and Friends. You guys had been writing into our ministry, asking about how to travel with a wheelchair and various questions. And because we get so many inquiries, when you came for a tour, I didn't put a face to a name and we had this instant connection and you guys said, "Hey, we want to thank the writer who's been corresponding with us." And I said, "Let me look up in the database who that is." I'm like, "Oh, it's me!" No wonder we had such a connection!
Nelly Kapen:
You opened the door for us.
Crystal Keating:
I did!
Nelly Kapen:
Before, yeah, we even said hi.
Crystal Keating:
That's right. You guys came through the International Disability Center back when we were doing tours before, way before COVID, and we became quick friends. So it's amazing to have both of you on the podcast today. Robert, you used to not be able to speak at all and now you're here on a podcast. And Nelly is going to be listening and summarizing for you.
So your life was dramatically altered 10 years ago. Robert, can you briefly share what happened?
Robert Kapen:
Yeah, I am coming up on my 10-year anniversary.
Crystal Keating:
10-year anniversary, right.
Robert Kapen:
I was healthy.
Crystal Keating:
Totally healthy.
Robert Kapen:
I love sports and the outdoors.
Nelly Kapen:
He loves sports and the outdoors.
Robert Kapen:
I was going to Northern Arizona University.
Nelly Kapen:
You were going to Northern Arizona University.
Robert Kapen:
With a degree of...
Nelly Kapen:
With a degree of...
Robert Kapen:
Parks and Rec.
Nelly Kapen:
Parks and Rec, yes.
Robert Kapen:
On the weekend, I would help out by the rock-climbing wall.
Nelly Kapen:
On the weekend, you would help out by running the rock-climbing wall.
Robert Kapen:
And the ropes course.
Nelly Kapen:
And the ropes course.
Robert Kapen:
It was at a Young Life camp 40 minutes away.
Nelly Kapen:
It was at a Young Life camp 40 minutes away.
Robert Kapen:
One morning...
Nelly Kapen:
One morning...
Robert Kapen:
When I was running the ropes course...
Nelly Kapen:
When I was running the ropes course...
Robert Kapen:
I felt numb.
Nelly Kapen:
You felt numb.
Robert Kapen:
Then throughout the day I got worse.
Nelly Kapen:
Throughout the day you got worse.
Robert Kapen:
So I went to the doctor.
Nelly Kapen:
Went to the doctor.
Robert Kapen:
Within a week.
Nelly Kapen:
Within a week.
Robert Kapen:
I became fully paralyzed.
Nelly Kapen:
You became fully paralyzed.
Robert Kapen:
Doctors called it locked-in syndrome.
Nelly Kapen:
The doctors called it locked-in syndrome.
Robert Kapen:
I knew everything. I was aware of everything around me.
Nelly Kapen:
Because you were aware of everything.
Robert Kapen:
But I could not move my muscles.
Nelly Kapen:
But you could not move your muscles.
Robert Kapen:
No, and then I was in and out of hospitals for six months.
Nelly Kapen:
In and out of hospitals for six months.
Robert Kapen:
Until they let me go…
Nelly Kapen:
Until they let you go…
Robert Kapen:
To do my own self-care because they didn't know exactly what happened.
Nelly Kapen:
You had to do your own self-care because they didn't really know what happened.
Crystal Keating:
You didn't know what was happening. The doctors didn't know what was happening. I bet you were terrified, Robert. And I know your friends were incredibly concerned for you. You had people praying. And I know you felt trapped in your own body. And your mind was fully functioning, but you had no way to move or communicate verbally. And now you're here, you're sitting in a wheelchair. What's your recovery been like? And what are some of the ways you've seen God provide through the years?
Robert Kapen:
With different types of communication, eventually I got well enough to text.
Nelly Kapen:
With different types of communications, you got well enough to text.
Robert Kapen:
And after the hospital let me go, I went to a rehab facility for the next 8 years.
Crystal Keating:
Wow.
Nelly Kapen:
So after, yeah. After the...
Robert Kapen:
So I've been doing, 4 times per week, doing physical therapy, occupational therapy, and speech.
Nelly Kapen:
Yeah, for the past eight years, you've been doing occupational therapies, rehab, and speech.
Robert Kapen:
And then when COVID hit, I was not able to go to rehab.
Nelly Kapen:
When COVID hit, you weren't able to go to rehab.
Robert Kapen:
So unknown to us, our friends fundraised money and got me a nice stationary bike where I can peddle with my arms and legs.
Nelly Kapen:
And our friends got you a stationary bike where you can peddle on home with your arms legs.
Crystal Keating:
Yeah. You've made some significant gains. I think many people with disabilities have felt, over COVID, some of the loss through this whole year of not being able to participate in the same kinds of therapies, and activities, strengthening activities. But for even those losses, Robert, you have done amazingly well these past 10 years. And Nelly, I want to transition to you because here you are. I know that you and Robert were friends before this all happened. How did you meet Robert initially and how did your friendship eventually blossom into a relationship and then into marriage?
Nelly Kapen:
I know, crazy! We were going to the same church. Actually, Robert was going to school and I would only see him every time he came into town to visit his family. And there was an outreach for single young adults, and we went to a homeless outreach. That's where we met and just became friends and we hung out for about a year before he got sick. So I knew him before, I knew his old self and...
Robert Kapen:
We always got dinner together.
Nelly Kapen:
We always got dinner together when you were in town with a group of friends. It was nice to know him before he got sick, but once he got sick, it was an interesting thing because I was able to visit him a lot more since the rehab place was really close to my work. So I would sneak out during lunch or after work or before work and just to say hi to my friend.
Nelly Kapen:
One day, one of the nurses was very giddy and asked me, "Hey, have you noticed that, the way he looks at you when you walk into his room?" And I said, "What do you mean?" He said, "Well, pay attention." And I'm like, okay. So, he was sitting down at that point. I think he started, he was watching baseball. He always did. He was finally able to sit up and he looked at me, he's lit up. I think everything changed after that day. Once he started moving a little bit more, he started texting and we would text and got to know each other on a different level, which was amazing. Neither of us planned this. I think it was just God's timing for us.
Crystal Keating:
So when you saw him light up, that lit up something in you?
Nelly Kapen:
Yes. Something that I had not seen. I mean, I thought he was cute before, but before we were just friends, and he was still the same after. I felt like even through the texts he was mentally all in, and he would remember things. So I think that that made it a lot easier.
Crystal Keating:
You knew he cared for you.
Nelly Kapen:
Yes.
Crystal Keating:
Okay. So, how did you guys start dating, and then how did you get married?
Nelly Kapen:
Oh my goodness. Okay, so... I would visit a lot and family would just start teasing us or his mom knew like something was going on. So she would volunteer to take us to the mall, because at that point we couldn't go by ourselves.
Robert Kapen:
I just needed an outlet.
Nelly Kapen:
You just needed an outlet. So she started getting tickets to games and we will go as a family. So she would be...
Crystal Keating:
Robert, you are smirking so much right now!
Nelly Kapen:
Yes, her friends will invite us to the movies and eventually we just started doing it by ourselves and things got more and more serious.
Robert Kapen:
Yeah. I mean, you coming over gave my mom a needed break.
Nelly Kapen:
Yeah, I would come on Saturdays. That was our date night. It was just staying at home that would give your mom a break. And it would give us some more privacy, I should say. So three years later, he proposed and I think...
Robert Kapen:
In our community group.
Nelly Kapen:
In the community a group, a Bible study, yes. In front of everybody and then he asked me to be his wife. I actually said, "I do," even though I was supposed to say, "Yes." But it was a very sweet moment.
Crystal Keating:
God's been good to both of you through this incredible hardship. Robert through the years, what have been some of them highlights of your marriage? What do you like most about Nelly?
Robert Kapen:
I got to marry someone I like talking to.
Crystal Keating:
You like talking to her?
Robert Kapen:
I like to travel. We actually just did in a week-long road trip.
Nelly Kapen:
We like to travel, and we actually just did a road trip.
Robert Kapen:
And I always find myself laughing with you.
Nelly Kapen:
You always find yourself laughing with me. Not at me. Well, sometimes he does.
Robert Kapen:
And the two things I love the most are your giving heart.
Nelly Kapen:
The two things you love the most is the giving heart.
Robert Kapen:
And the fact you are Peruvian.
Nelly Kapen:
The fact I'm Peruvian.
Robert Kapen:
Because your food is delicious.
Nelly Kapen:
My food is delicious.
Crystal Keating:
That's awesome. Nelly, you have two really important roles in Robert's life. You're his wife and primary caregiver. And one is more medical, and one of course is relational. So how do you and Robert balance these two different aspects of your relationship? I mean, has the role of caregiver ever burned you out? Have you had to work through that?
Nelly Kapen:
Yes. I mean, going back to the road trip, I feel like it's a nice journey, but you will run down on fuel if you don't fuel up, and make stops and rest.
Robert Kapen:
Because we bump heads.
Nelly Kapen:
And we start bumping heads more and more when I start running low on energy and patience and...
Crystal Keating:
Yeah, when you're getting exhausted.
Nelly Kapen:
Yeah, so my mother-in-law is a person that helps us a lot. When I'm at work, she's at home and helping him so that helps a lot. And having a community of people that actually do care, and not necessarily financially. It could be just stopping by saying hi or sending a meal out of nowhere. We've had people bless us. God blessing us through people, just like random food packages without names at our doors. We can only thank God for that and...
Robert Kapen:
We started recently eating dinner without the TV so we're able to connect.
Nelly Kapen:
Yeah. Something we recently started doing, because I was getting burned out after work, especially because I worked full-time, it was just having dinner without a TV. Just connecting at the end of the day...
Robert Kapen:
And we started doing a prayer session once a week when we're driving.
Nelly Kapen:
We would drive to Santa Monica for church, and we would start doing a prayer session. Obviously, the days we don't do that, or the weeks we don't do that, we start feeling it more.
Crystal Keating:
Those things are refreshing to you, reconnecting as a couple, praying together...
Nelly Kapen:
And reconnecting with God.
Crystal Keating:
Yeah.
Robert Kapen:
And when you're praying, I hear what you are struggling with and what you need.
Nelly Kapen:
When we pray, you start hearing what I'm struggling with and you can...
Robert Kapen:
And what you need.
Nelly Kapen:
And what I need, yes. Prayer and connection with God. It's always gonna keep us moving forward. I think without him, it's really impossible.
Crystal Keating:
Absolutely. Well, as we close our time together, would you guys like to share some advice to couples who are maybe considering marriage when disability is involved?
Robert Kapen:
We have three things. Grace...
Nelly Kapen:
We have three things. Grace...
Robert Kapen:
Forgiveness...
Nelly Kapen:
Forgiveness...
Robert Kapen:
And prayer.
Nelly Kapen:
And prayer. Another thing that I should say also, you can't read each other's minds, even though you're by yourself all the time. You start thinking you have supernatural powers. You don't, and you never will. So, getting counseling, we started seeing people before marriage, during marriage, and after marriage. I think that helps a lot. It doesn't have to be someone that has a disability. Marriage is all the same and all marriages need Jesus. So getting that village to support you in those times and speak truth into your life when you want out, because that's pretty normal in these situations. And when...
Robert Kapen:
And we need grace.
Nelly Kapen:
And grace...
Robert Kapen:
Because we're not perfect.
Nelly Kapen:
We're not perfect.
Robert Kapen:
Forgiveness...
Nelly Kapen:
Forgiveness...
Robert Kapen:
Because they are not perfect. We all need prayer.
Nelly Kapen:
We all need prayer.
Robert Kapen:
And we all need help.
Nelly Kapen:
We all need help.
Robert Kapen:
And who better to give that help...
Nelly Kapen:
Who better to give that help...
Robert Kapen:
Than the creator of the universe.
Nelly Kapen:
Than the creator of the universe, yeah.
Crystal Keating:
That's right. Well, Nelly and Robert, it's so good to be with you. As you said, everyone needs Jesus. Marriage is marriage, and we need to call upon him for help. I love you guys. Thanks for joining me on the podcast today.
Nelly Kapen:
Thank you, Crystal.
Crystal Keating:
Thank you for listening today. If you've been inspired, please send me a message or leave a five-star review on your favorite app. That's a great way to help other people find encouragement from these conversations. And to get our next episode automatically, subscribe wherever you listen to podcasts. I'm Crystal Keating and thank you for listening to the Joni and Friends Ministry Podcast.
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