In times of deep suffering and grief, it can be challenging to find hope and purpose. The experience of losing a loved one, witnessing their pain, and grappling with the uncertainty of the future can leave a person feeling overwhelmed and lost. However, it is in these moments of darkness that one can also discover a different perspective – a perspective that encompasses creativity, faith, and the collaborative power of both.
When faced with immense suffering, it is natural to feel as though hope is elusive and unattainable. However, the concept of creativity offers a unique pathway to rekindling hope. Creativity has the power to bring forth ideas that were previously unimagined, opening the mind to new possibilities and opportunities. It allows for the exploration of new perspectives, leading to the birth of hope in unexpected ways. This is where the collaborative power of creativity comes into play, as it encourages individuals to engage with others, including God, in the process of co-creating hope and joy amidst suffering.
The collaborative power of creativity extends beyond individual endeavors and encompasses the connection with others – friends, family, and community. This collaborative approach to creativity fosters an environment where shared experiences, laughter, and connection can thrive, even in the midst of extreme suffering. It allows individuals to find moments of pure joy, despite the surrounding pain and grief. By engaging in creative endeavors together, individuals can find solace and strength, reminding themselves that they are not alone in their suffering.
Moreover, in times of deep suffering, one’s relationship with God can undergo a transformation. It is during these moments that one may feel a profound sense of loneliness and isolation, convinced that no one truly understands their pain. However, it is crucial to recognize that God is always present, unwavering in His support and love. One does not need to prove worthiness or credentials to seek solace in the divine. This realization can bring about a shift in faith, instilling a deep sense of confidence and hope even in the face of immense suffering.
The experience of suffering and grief does not have to be defined solely by despair and hopelessness. It is possible to find hope and joy amidst the pain, and creativity plays a significant role in this process. By embracing the collaborative power of creativity and nurturing one’s relationship with God, individuals can create moments of hope and joy that transcend the darkness of suffering. While the journey may be arduous, it is through the transformative power of creativity and faith that individuals can find solace and strength even in their darkest hours.
I hope it’s a brain tumor. I hope it’s cancer because you can fight that. Or please bless it’s MS because you can live with that. You can manage it. There’s a chance. And no doctor even utters the word or the possibility ALS unless they know it’s a diagnosis. We both had separate spiritual confirmations of this is coming and be ready. Why I wanted you to come here? Because one, you’re amazing, but two, you have gone through what some people would think would be the worst thing that can happen to them.
Yeah, I think it’s the worst thing. I know people have it worse. I mean, I do. I do. Yeah. But I mean, you…
And I never knew Chris, which is so sad. That makes me so sad for you.
I know because- I know, because- Like, like, sincerely, like not in a jokey way, but you would have loved him.
He would have loved you. Yeah. We had a good time. I know this because every story I hear, I’m like, his humor is hilarious.
He’s so funny. So funny. Yeah, I feel like I missed out. We have eternity, though. Yeah. I think that’s how it works.
I mean, I do think that’s how it works.
I’m going to bet on that one.
Okay, good.
I love it. But You spoke to a group a little while ago about suffering and how you dealt with it. And before we started recording, I was telling you that in our culture, there seems to be this overtone of, let’s escape any discomfort. Let’s numb quickly, and let’s not tackle anything real. And that’s not everyone. But I’m just saying that seems to be an easy thing to do is to numb out and not question. Yeah, we want to rush through it. Yeah, we rush through it or just push it away or act like it doesn’t happen. Let’s save that. Let’s heal that another day. And I think that you have, and you can disagree with me, I think you’ve done this beautifully. I mean, in a way that you have inspired so many people around you with, one, how you pay tribute to him and how you supported him through the end of his life, and then how you’ve taken the worst thing that could happen to you. And with Christ, he makes beauty from ashes, right? And I know that I’m just glossing over this whole thing, but I want you to start.
And I’m interested in…
He passed away honorably, and he- He did. I’m so proud of him. Yeah. I’m proud of him, too. I don’t know him, but I love how you describe this.
Do you want to just give us some background how it led to that, and then we’ll go from there. Yeah, you bet. All right. I’m talking to it. Christopher is larger than life, and everybody who knew him loved him. I hate it when… Before we started recording, we’re talking a little bit about science fiction and my love for science fiction. And one thing that Orson Scott Card does really well on Speaker for the Dead is talk about how we just say the most beautiful things about the dead as if they were perfect. And the thing I like about Christopher and how he wants to be remembered was it was just for the real, for who he really was. And he had an opportunity to write his own life story and leave it for his friends and family. Hold on. He had ALS. How did he write that? Okay, so let me back up. Larger Than Life, theater director, actor, funny guy, family man.
He was He was legendary.
I knew of him. Just always doing a million things and doing him well and just quirky and fun. Life with him was really interesting and fun and meaningful. In the fall of 2015, he noticed a slight drag in his leg. Like, Oh, this is weird. My leg just seems to be taking a second from the time that I tell it to walk or something. I was like, Well, that’s weird. Drink a glass of water. How old was he at the time? Taken Ibuprofen. Taken Ibuprofen. I was a real loving wife. I was like, You’re fine. We have five kids. You’re going… You know what I mean? We have two full-time jobs. At the time, let’s see, because he was 47 when he passed. So he was 42, 43? That’s so young. I’m 41. I’m so young.
I’ll be 42 this year, or this coming year.
I was like, Oh, it’ll be fine. But it kept getting worse and worse. And so he had gotten a back surgery in his 20s, quite early. It was just a thing in his family line. Everybody gets back surgery in your 20s. I was like, You probably need a tune up. So it’s probably that. And so we didn’t really worry that much about it. Went to go get the MRI. It was totally clean. We were like, Huh, your back looks great. We got another MRI a little bit further up for his neck, and that was clean. The symptoms were getting worse, and he was walking with a noticeable limp. Then everybody got a little concerned, all the and everything. We went through a lot of tests and testing. There’s no definitive test for ALS. You just rule out everything else. It’s like, I hope it’s a brain tumor. I hope it’s cancer because you can fight that or, Oh, please bless it’s MS because you can live with that. You can manage it. There’s a chance. And no doctor even utters the word or the possibility ALS unless they know it’s a diagnosis. And so they weren’t saying it.
We got his blood tested. We got We had scans, everything. It was coming clean, coming clean. We weren’t telling anybody about it. And that was just a horrible, awful time of not knowing what it was. So four months later, he was like, I just need to know what this is. I’ll be so relieved, even if it’s the worst. We both had separate spiritual confirmations of this is coming and be ready. Mark, the worst is coming? The worst is coming, and you need to be prepared for it. We kept getting the test and test, and then finally, I could tell you all the details from that. It’s pretty unremarkable until we went to the ALS clinic in the Department of Neurology at the University of Utah, which is one of the best in the country. A very kind doctor said, Hey, we’re going to stop testing and we’re going to make you comfortable. We were like, What do you mean make you comfortable? We want to fight. There’s just nothing to fight. There’s no cure, there’s no treatment. It’s really the worst disease because they just want to make you comfortable. And you’re like, Well, so how fast is this going to progress from walking with a cane to a wheelchair to not being able to talk to…
How fast? And they’re like, I don’t know. Every question that you have that you feel is a really important question. Nobody knows. And then that starts to sink in. So it’s a lot of little mini losses of hope and devastation with every new day. But one thing that the doctor did say is that every day is going to be the very best and healthiest that you will ever be. Oh, wow. Like, it will get worse. And the average life expectancy is 2:00 to 5:00 years. We were hoping… I remember thinking that my youngest at the time was eight, and I was like, I hope if he just has this slow progressing one, and if he could last for 10 years, then at least she could be grown. You just like, your brain does We make these mind contracts. Yeah, you make these, and then the circumstances are like, Oh, I don’t care about your intent. But I realized, further along as I’m living with grief longer and longer, that your brain does that to try to soothe you and protect you. It tries to tell you all these things. Christopher went from a slight limp in his leg to not being able to move or talk and just being able to move a thumb to click on a mouse.
He had that Stephen Hawking, for lack of a better description, set up where he was in a chair with a screen in front of him with some glasses that just had a magnetic dot so that he could type out things, click on it, uncommonly used phrases and things like that. Then he was able to communicate that for about the last two years of his life. He lived with ALS for four and a half years and then died on June fifth in 2020.
During the hype of the pandemic- Wonderful time on Earth, wasn’t it?
Wonderful. Yeah, it’s such an easy time. Wonderful time when you could just be with friends and family. It was the worst. Anyway. That’s a little bit about- Gosh, there’s so much.
There’s so much in there. I don’t know where you want me to detour. Okay, well, let’s talk about… I’m interested, and I just respect how you talked about how he still served, he still joked, he still… Oh, man. He wasn’t a victim. No. Not that there wasn’t hard days. I’m sure there was.
Where you go into victimhood. But I mean, overall, I would love for you to tell me how he did this. I had this feeling when he died. I was so proud of him. I was like, You did it. You did this with dignity and love and not anger or not jealousy, which is not to say that he didn’t feel those things. And of course, he did around. But he got to a point, especially in the last nine months of his life, where he was just happy Happy for every day that he just was there because he felt like it was a bonus day for him that he didn’t think he was going to get. I remember thinking very, very clearly after he passed, moments after he passed, We should all live like this all the time. We think that we have so much time to work things out, but this is how we should all be all the time. I just was so inspired by that. But to back up, the beginning was the hardest because you’re trying to do all of this bargaining. The stages of grief are for a dying person. They’re not for someone who, like me, is watching someone you love die, or our friends or family.
It’s for that person. At first, it was really hard. There were things that we couldn’t talk about with each other. They just seemed too big and too overwhelming. Like, what happens when I die, or what happens in the last moments, or how do I want my kids to remember me? Like, big stuff like that that you just don’t want to talk about when it seems like a reality and it’s not just a hypothetical. But he went to go see a really good therapist, and I would be like, Well, what did you talk about? Well, what did you say? Because we were used to just telling each other’s thing. It was so interesting where he was like, I just needed a place where he wasn’t worried about my feelings. Because he was worried about me, which is so sweet. He’s still trying to care for me, but I’m like, No, this is like, go time. But he needed that place. He saw the therapist regularly for about a year, and then afterwards, he’s like, I think I’m at peace with this. I’m not fighting it. It’s not that I don’t have hard days. There were little losses.
I remember the day that he tried to mow his lawn, and he couldn’t mow his lawn anymore because the lawn mower was going too fast. Oh, no. That was a regular We were on our Saturday where we were still in hopeful mode. We were still in like, well, you know a doctor out of this country said that if we take this supplement, I mean, you never know. Maybe we could be the one. For the first year, we were like, you get away with a lot of stuff. You’re a golden child. So of course, if anyone was going to find a cure to an incurable disease, it’s probably you. And then we’ll bless the world. We’ll do good things with it. We were still living in that world, and that’s why it was so hard. Little moments like that or the day that he couldn’t play the piano anymore. He used to be a concert pianist, and he was like, No, I’m not going to do it. He was at peace with that, and I was really upset about that. So little tiny things like that would come up on a regular Tuesday, and you’d be like, oh.
But after that year, Mark, I remember we had a really good talk, and he said, I’m switching my mind frame about all of this because he’s like, I have a terminal disease, and I’m going to die. There’s no out-charming this, out-working it out. And he really had this great relationship, I think, with God, where he was, I could read his patriarchal blessing, and he would study and think about it, and then he’d say, I didn’t do anything to deserve this. I don’t feel like I’m being punished. I think this is just my life’s story. And so that’s different than feeling like, What did I do wrong? Or, I was robbed, or, My life was cut short. He’s like, This was what it was supposed to be, so I’m just going to try to do it as best as I can. And as his abilities, his physical abilities decreased, whether that was… Again, at first it was hard. He wanted to walk with a walker for a while and still drive, which he could until he fell one time and blacked out. And we were like, You’re not You’re falling, you have to go into a wheelchair.
It was a total paradigm shift. When we were talking to a lot of our doctors, they said, All of these adaptive equipment, the wheelchair, the power chair, the speech device, the big foam grippers for your utensils, all the stuff that you’re like, Oh, that makes me look special, and I don’t want to use it. All of this is to help you live your life. With ease and comfort and to spend more time with your family. In fact, I remember a doctor said, and there’s a spiritual application here, I really do think. Okay, you don’t want to be in a wheelchair, even though you can still walk to prove to people you’re okay, but you’re working five times as hard trying to do that when you could conserve energy and be more alert and aware if somebody was pushing you in a wheelchair and have more time to actually live your life, go to work and do the things you want to do, be creative. And that’s when it I think it clicked for him because the rest of the time he was like, Oh, I was so resistant to use the wheelchair. And then when I did, it made my life so much easier and so much better.
And he’s like, We’re so resistant sometimes to ask for help that we think we don’t need because we’re afraid of what it will mean or what a little view to other people. But he’s like, I finally got over myself and then life got easier. And so you asked earlier about how did he write his book and stuff before his… Then the focus instead of, I just want to keep living and pretend I don’t have this, became, how can I live with this and get the most out of the days? And I remember I was asking him in a really tender moment, What do you want more than… What can I do to make your life meaningful and happy. He said, I just want ordinary days. I just want days where I’m laughing with my friends and I’m teasing my kids and that we’re just all hanging out, just ordinary days. And so then that became the focus. And he just did a really good job of being able to do that. He recorded his life story on audio with one of his cousins, Jane, had done the same thing for their grandma. And she’s like, I want a book like that.
So she would interview him. And by the time he couldn’t speak anymore or his speech was Unintelligible. It was all done. They had taken a year and a half to write that once a week for about an hour and we’re able to finish it. Then he had this speech device that he was learning how to use with his eyes and his movement so he could edit it and add things and correct things and make it what he really wanted. But he just kept moving from creative product to creative product and focusing on what he could do instead of what he couldn’t do anymore. It’s really inspirational to me.
Yeah, he’s such an artist. That is so cool. One of the stories you told about was how he set up… Was it an anniversary dinner? Oh, my gosh. This is one of the coolest things I’ve ever heard in my life. That’s one of the coolest things that ever happened to me. How did he orchestrate that? Okay. And what stage was he in?
So he was dying, actively dying, as in it was the last two days of his life.
I didn’t know it was that close.
He was hiding it from everyone. We were hiding it, which was really easy because everything was shut down in the pandemic. When everything shut down in the pandemic, he was in the final stages. He told me, It feels like the light went out inside. And I was like, What do you mean? What do you mean? And he’s like, I don’t know. There’s just a shift inside my body that I can’t explain any other way than that. And a hospice nurse was like, Oh, I hear that all the time. It’s like your body getting… It’s like when you turn off the lights to go to bed and you put your house to bed and you go to each room and you turn off all the lights and you lock the doors. It’s like you go from system to system and lock everything down. Your body can feel it.
That’s so symbolically sad to me. Just tragic.
It’s just like- And he’s communicating this to me. By typing. He’s spending a lot of time sleeping. He’s spending all of his time on his trilogy machine. He has a feeding tube by now. He’s in his chair. He can’t move. He’s lost a lot of weight. I mean, he looks We had gotten so good. I had gotten so good at anticipating his knees. Like, Okay, now this, now this. When you get to it like, Oh, no, there’s nothing. Oh, this is it. Oh, this is the end. Even though you know it’s coming and that he has a terminal disease, But you’re shocked. So that’s where we are, if I can paint a beautiful picture. And then I was like, we had lots of therapists to help us and CNAS to pick him up and shower them and move them and bat them. And he needed constant… He could not be alone. And then the pandemic shut everything down and everyone had to go home. And so it was me and my oldest son, Miles.
How old is he at this point?
So he’s 21 at this point. Okay. So he’s strong. Yes. But I’m like, we were like, we don’t want you to worry about. You should in college having fun. And he was like, this is my dad. And then we were like, this is not what we wanted for you. And he was like, this is my dad. So from 10:00 AM to 10:00 PM, I would care for him. And then from 10:00 PM to 10:00 AM, Miles would. We would be with them. And so then I would sleep and then get up and go to work and then come home and take care of business. And it was an intense time. And he started… The last thing to go, how you die from ALS is your lungs I mean, all your muscles atrophy. So your ability to take a deep breath. So it was slowly happening, and he was starting to have panic attacks because he couldn’t breathe. Of course, he was. And so I was administering emergency meds, and the hospice nurse was saying, This is cruel. He’s having it. Let’s put him on a morphine drip so that his body needs to relax. And we were like, No, we know what that means.
A morphine drip means that he’s going to go to sleep and never wake up. And she’s like, Yeah, this means that his body is going to do what it’s going to do, but without panicking. Anyway, so these were the conversations that we were having. And it just so happened that it was coming up on our 25th wedding anniversary, and he always did something really nice. We are planning the next day. Our anniversary is on the third of June. He orchestrated that one of my friends would come over and do this outside because, again, pandemic, and cater a dinner for me because he can’t eat food. I mean, I’m describing this, and I still can’t believe that he did this. He coordinated that our good friends, Jenny and Blake Barlow, who he did all these theatrical productions with. She’s a director and choreographer. He’s like, Transform our backyard into a big Italian restaurant with all these plants and these huge inflatable silver balls. It looked top-notch because it’s our silver anniversary. Our brother-in-law made me a silver bracelet. We got Ryan and Nesta to come and sing.
Ryan and Nesta came?
That’s awesome. Yes, to come and sing to us. And he walked in the backyard and he’s like, I did not know what I was walking into. I was like, I am so sorry. And he sang to us while we just cried and cried. And he had written me this card or had this F for our anniversary. He had made Miles. He just had a panic attack. We got him ready and he’s like, Wake me up. He typed out on his phone, Wake me up at 7:00 for our special surprise. And I was like, We’re not doing any special surprise. He’s like, Just laughing like, We’ll see. He wore this silver tie. I had Miles get them all ready. It was just overwhelming. So he said, Just go put on a nice dress and meet me in the backyard. We had this I was like, I just remember eating going, it’s really good. Just crying.
Crying in the noodles.
Just crying. Looking at my friend Josh, who made the dinner, and I’m like, Why is happening? He’s like, I don’t know. We just do whatever Chris says. I was like… It was insane, but also just so sweet and so indicative of him, of like, let’s just have a nice night. So that was our 25th wedding anniversary. And then after Ryan stopped singing and we were all just beside ourselves. He typed. He’s like, Okay, no more crying. I need to lay down. I was like, Okay. Because he had been up for about an hour, and that was as long as he could be doing. And then, yeah, I read him a card that I had written on our first anniversary, and we had a really sweet moment. And then woke up the next morning and put him the morphine drip, and then he died on the day after.
Oh, my gosh. So thank you for sharing all these- Yeah.
It’s- Hard beautiful memories. Although it’s like emotional. I mean, isn’t that lovely?
It’s a great- What a way to go out.
I’m just so glad we have that moment. It was a really great thing to show our kids. Oh my gosh. And he just said, I don’t know, that he was thinking about me and our anniversary, which I kept telling him, Oh my gosh, you just have to worry about living. I’m fine. I’m not a princess. You don’t have to do anything. But he’s like, I want to do this.
It’s so cool. For me, I love the stories like, braveheart, or the guys that are just dying, but they’re still like their causes. And I just respect Chris so much because it is so easy for him to just sleep. I can’t imagine how hard that would have been to communicate behind your back to orchestrate this thing.
I know. He was texting people.
And he must have known he was going to pass away in a couple of days, right? Oh, he knew.
Yeah. In fact, my brother-in-law, Andrew Beesley, who did the bracelet. I love him. Don’t you love him? He’s the best. He said to me, Look at this. Like, later, after everything. Look at this text because I was like, Oh, my gosh, you came right over. And he’s like, How could I not look at this text that I got from Chris? And it was like, Hey, it’s my silver anniversary, and I need to get Lisa a bracelet. It’s my last anniversary, so I can’t F it up. He’s like, So no pressure, but it has to be good because it’s my last one. And I just was like, He’s like, Who types that? And I’m like, Chris. Chris.
How does he… Okay, so I know he’s an amazing man. I knew about him. He was legendary in the valley. How does someone get to the point where they die with such dignity and accept this stuff? What had he done in his life? What type of relationship do you have with God? What did he believe about himself to get to that point? Because that’s not something we naturally do when something really hard happens.
I mean, he did have a deep conversion to Christ that he attributes that he got really on his mission. He went to Finland. It was dark all the time. People were mean to him.
I’ve been to Finland. It is dark.
People tried to kill him. Oh, wow. Do you know what I mean? And he was in some dangerous situations and stuff, and he was just like, What are we doing? What is this? And he really had to choose, and he did. And he loved that. And he was always… I mean, he was on a theater scholarship, but wanted to… That majored in English because he thought it was more practical. And then when he had a career and we were making good money, we had two little kids, and the most money we’d ever made. And it was like nothing. But we were like, this is the life. He was like, I hate my job, and I want to study Shakespeare. And I was like, let’s do it. We moved to England and got a master’s degree, and we moved to England and got a master’s degree. We had no money. We had these little kids, and it was so much fun. What a cool adventure. Then we came back, and then he was always… He always said, I want a family, and I want to support the family. I So if I have to do theater on the side or director, actor, whatever, but I can’t live without it.
I think he really felt like this co-creator with God. He felt like, God gave me these gifts and talents. I have to use them. It’s not superfluous. It’s not just like, blah, you know? It’s not indulgent, right? Yes. And so he’s like, If I have to have two jobs for the rest of my life or work is just as hard just to do this, then it’s worth it. And so that was his attitude of like, I think he just always assumed the A lot of people have a different perception of God, and Chris’s perception of God is how I see God now, which is he wants me to succeed. He gave me these gifts, so he’s going to help me do it. I don’t know how it’s going to work out, but it will because things always work out for me. I realized that’s ironic saying that he died, but things did work out for him. And he was the guy that was like, I feel like George Bailey. He is typing this with his eyes because he can’t move or speak. And he’s typing. He’s like, I feel the last year, last two years of his life, I feel like the luckiest man on Earth.
Look at how much people love us. Look at how our friends are showing up for us. Look at how our family are. I’m the luckiest man in the world. And I remember my friend being like, Yeah, you’re lucky. Look at you. He’s like, No, I really… Yeah, this happened to me, but this wasn’t my fault. This was a mix of some causation and genetic predisposition that I don’t know what caused it, but I didn’t do it on purpose. This was God’s plan for me, but it doesn’t negate all the great things that I have. He was obsessed with his kids, with me, with his friends. And he attributed that to God, a clear path. It didn’t go wrong. This is exactly what it was. And so I think it was this partnership with God. When I hit something, when I don’t know what’s going to happen or what’s next, I know that God will be there. And he testified of that. He talked about it. He talked about Christ. He really wanted his funeral. He planned it all out. And he’s like, I want it all to talk about Christ at my funeral. That’s what I want.
And I know that there were some people who were like, His funeral wasn’t very funny. And I’m like, No, it wasn’t funny. That’s right. But it is what he wanted. Yeah. This is more about you. Yeah. So I feel like that confidence came From that, he took one day before school started, and it took the whole day to type out individual blessings, like back to school blessings for each one of the kids. That’s so cool. And I remember it was six o’clock at night, and I was like, Okay, we’re ready. And he’s like, I’m not quite done. I want to do one each for the kids, and I’m praying about it and stuff. He did stuff like that that was mindful. He read his scriptures. He was Paul in the Bible videos. And he did those things not out of guilt and stuff, but because it was like That thread he was following.
Let me read something. This reminds me of Chris, what you’re saying. If you ask, why is this happening? No light may come. But if you ask, how am I to glorify God now? There will always be an answer. Yeah.
I think he found that. I think in the first year, it was the struggle of, I want to ask for a specific miracle, and I have the faith that God can give me this miracle. And when you ask for a miracle that you want more than anything that you’ve ever wanted in your whole life, and I know because I asked for that miracle, and the answer is no. I didn’t get an answer or maybe later, but the answer is no. That will It will shift your faith because you’re thinking, This is a really good thing that I’m asking for. This will do good. This is not selfish. There’s no conceivable reason why, and I have the faith for this. Or if I don’t, give me more. I know I can ask for it. I think it really shifted things, and especially for Chris, too, because when we had that conversation after about a year of saying, Okay, so if this is what I’ve been asked to do, that Now what? Then how can I keep creating, keep teaching, influencing others, keep being a great husband and father and friend? A lot of people don’t know this, but he would wake up every day, especially the last two, three years.
And he said, My prayer was always, who can I help today? Just tell me one person that I can help today. It’s during a pandemic, you can’t move, you can’t speak. And he’s like, Every day, somebody would come to my mind, every day. And he would text someone, he would FaceTime them, he would tell them to come and get them for lunch, whatever it was. And he would make that bid, and he would follow on it. And then more and more came. And after he died, I can’t tell you how many letters, like handwritten letters I got, and notes and emails, two in particular, that were a surprise to me that said, He saved my life. He doesn’t know this, but I want to tell you that he reached out to me. He talked to me in varying capacities of his life and took me under his weight at a certain time, or I was making a plan to end my life. And Christopher could see I was struggling and invited me in his office, or this happened or that. It’s like you hear things like that, but when it really happens and you know the person, you just think he was trying to do that and nothing would mean more to him than that.
Nothing would mean more. And during the pandemic, when everything was shut down and he asked his friends to come and entertain him in front of our window. We have these three big glass windows in front of our house. He’s like, I will be sitting in front of my windows from the hours of one to four every day if anyone wants to come and entertain me. And I think that was his way of, I know I can’t see my friends, I can’t talk to them, but I want to create a good fun memory for them, and I need it, too. That created some of my very favorite moments of my whole life. I bet. People came. I know they came. My whole life. I would have to excuse myself sometime. I’m like, Oh, my gosh, that’s so funny. I’d excuse myself and go back into my bedroom and just cry because I just felt like my heart would burst. I felt so much love for our friends and family. Isn’t that how we’re supposed to live all the time? I think so.
Oh my gosh.
That’s amazing.
It is amazing. And he’s incredibly inspiring. So he passes. What do What would you do next? I want to know more. Were you mad at God?
No. I thought maybe I would. A lot of my friends were like, It’s okay if you’re mad. I thought, I know it is, but I wasn’t. Is that weird? Isn’t that weird? I mean, I still think it’s weird. It seems weird, yeah. I I went mad because I was so grateful. Wow. I felt, especially for the first two weeks, the first two weeks, I felt like this, and a lot of people, I think, experience this, this just high, this overwhelming of I’m so proud of him, and I’m so lucky that I got to know him better than anyone else. What a privilege. And then I got to raise a family with him. I just felt so much love, and I was just so proud for him. Then when that war off, that high of war off, it was really a hard crash. Then for the following few months, I just thought, Oh, this is torture. This is actually the definition of hell, of being separated by the person that you love the most. I thought, I did a good job, and I took care of him. Then why is this my reward? You really do bargain.
Grief is a… That’s an entirely different podcast. I don’t want to give the illusion that it was like, Oh, I felt so great because he was so great.
But I felt so proud of him, and I felt so much love.
I felt so much love and just thought, It’s interesting. Just one of my dearest friends, right after he was diagnosed and I was having a really hard time and just sobbing to her and just being like, I don’t know what I’m going to do. I don’t know what’s going to happen, and how can I do this? And she said to me, I just got to ask you a question. It’s just between you and me. If you could go back and do it again and meet Chris Clark and Mariam and do it, knowing what you know now, would you do it? I said, Absolutely 100 %. She’s like, Well, then there you go. There you go. Wow. There you go. Oh, my gosh. And I was like, What if I said the other thing? She’s like, Then there you go. And we would have dealt with it. She’s like, But you have to know that going forward. And when he died, I remembered her asking me that years ago. And I remember thinking, I chose this, and I’m so glad I did. So I didn’t have any regrets that way. And that felt really… It still does feel very empowering.
That’s incredible.
I was so glad that she pointed my attention to that because I wouldn’t have thought about that at the time. No. Because I’m like, of course I would in a heartbeat. And I still say that. And so then it’s not like it takes away the pain, but it gives it meaning for me.
So I’m in my 40s.
You’re in your 40s?
I’m in my 40s. Okay. So it’s weird. Since we got to this age, it seems like just people die. It’s like a thing now.
It’s going to happen more and more to our immediate group.
I’ve lost an uncle and one of my best friends from college, and then another college friend all this year. And it’s like, we’re at the age where people are dying. And this This is a reality now. It’s just different. It’s different. People move on. And life is extremely fragile and beautiful. And it’s beautiful because it’s so fragile. There will be more people dying. What would you want to say to the people out there who might not expect anything, but they can start enjoying their life now because I watch you and you do enjoy your life.
That’s right.
Well, I think you do. I mean, you’re one of the most joyful people that I know. I mean, at least you put on that face. I mean, but I suspect it’s It is real. I know you better than just… It is. It is. It is.
I’m a lot of things.
You’re being very humble right now. My favorite movie is About Time. Do you know this movie?
Oh, that movie kills me. It kills me. And I love it and I watch it all the time. And I identify with the mother when he comes to her. I’m not interested. And she’s… She said, I’m just not interested in living in a world where your father’s not in it. And I watched that soon after, and I just thought, Oh, never have I identified with anybody more.
Yeah, that movie.
That movie. Everyone needs to watch that movie. That one little scene. But I will tell you this. Tell me. Because Chris and I talked about everything at the end. And he would say… He was really sweet, and he’d be like, I’m not worried about the kids because you’re a great mom. And I was like, Thank you. But also our kids, they’re great. They’re doing really well. And it hasn’t always been the case. He’s like, I’m just worried about you. And I go, You know what? I am worried about me, too. Because it was like, There was this big black curtain of life after Chris. I was so worried about making him comfortable and making sure my kids were okay and how things were going to go that if I thought about, well, what will I do after Chris dies? I was not interested in thinking about it. In fact, my brain wouldn’t really do it. And I said something off-handed to Chris like, Oh, I’ll probably just stay in bed and cry all day. And that’s where I live. And he’s like, I can’t tell if you’re kidding or not. And I go, I actually don’t know if I’m kidding or not.
Like, honest. And he said to me, Well, you can do whatever you want, but just know that you don’t honor me by being miserable. You don’t honor our love or our life together. If you did that, that is a discredit for the love and the life that we had together. And I felt a little chastised and rebuked. That’s a rebeer. He was like, I don’t know if you’re kidding, but you better not be kidding. He’s He’s like, That would not honor our family, our kids. I was like, well, I don’t want to do it. I was like, settle down. I just said, well, just don’t. I would always say, just don’t die. And then we don’t have to worry about it. But I think about that all the time because, of course, I have those days and sometimes those weeks where I’m like, I just hate everything. I’m done. But I know that I won’t always feel that way. I also know that Chris, that is not honoring Chris. He was like, You need to live. He’s like, You know, None of us know how much time we have. You know that it matters, our relationships, how we treat people, all this stuff.
You know now, so you can’t live like you don’t know.
Gosh, he’s a sage.
I know. And I hate that he was right about it. He was wanting us all to move forward. Like, he would tell the kids, I want you to go back to school. I don’t want you to be like, Well, my dad died, so now I can’t. Now I can’t go live my dreams. Now I can’t finish school.
It’s okay. He was building you all up. He made a culture that’s like, we don’t do this. You’re going to live. Wow. What a cool guy. Gosh.
I mean, who does that? But we should all live that way. So back to your question. I’m sorry, I keep going on to answer this, but I love talking to you. I don’t know your question. It’s this idea of living… We are not just meant to endure life. We are living with joy. And if I feel bad for myself, I let myself feel bad, of course. I’m a human. But I also think Chris couldn’t move or talk, and he’s still like, We laughed more than we cried. We laughed really, really hard. So much so that I really wish I was still taking care of him. He wasn’t a burden. The way that you think life is going to be in the actual reality that you can create are different. You have a lot more influence than you think, and the people around you and who you surround make all the difference for that. And he showed me that. And I do feel like I get these moments of a real internal thrill when I think Chris would be so proud of me for doing this thing that was scary or that put me outside of my comfort zone or whatever.
He’d be so proud of me. It’s a great way to live.
That’s so beautiful. Thank you so much. You can share whatever you want, but I just want… What is your final thought that you want to express to our brothers and sisters out there that might be going through a hard time?
Okay. I have a couple I have friends who are going through some really, really awful things right now. What was most helpful for me is to recognize that, yes, grief is a part of life. It’s part of our experience. No one can escape it. But Like you started, we underestimate how much it will knock out of us, right? I don’t think anyone would have faulted Chris or myself for becoming jaded or depressed and not wanting… No one would have faulted him at all. And yet through that, I think we can unknowingly limit the goodness and the love and the joy that is available to us. When I was in my darkest, and sometimes I still visit there. I just don’t live there, but I still visit there. My darkest moments, I remember the goodness of God and how that relationship that you can have with God of saying, not only do I know that you’re all knowing and all powerful, but I know that you’re actively working for my good and in my favor, and I will assume the best. And just because I don’t understand it and my brain doesn’t comprehend it, doesn’t mean that it’s not true.
It just means that I haven’t imagined it yet, or it hasn’t been revealed to me however you want to do it. The thing that gets me out of grief, for those who are going through a hard time, you might want to try this, too. I hope it will be helpful, is to think about the creativity of God. The thing that I love about creativity is that it brings up ideas that you’ve never thought about before, that you’ve never imagined, that you didn’t think was possible, and opens your mind to something new. I really do think that that’s where hope is born. When you’re going through a hard time, you need hope. In those moments that you don’t have hope, those are the moments that you think you’ll never escape. You can create that hope, and it feeds on this connection with others. I really believe in the collaborative power of creativity, that you don’t just do it in a vacuum by yourself, but that you can be a co-creator with God, with your friends, with family, with your children in your home, wherever it is. I know that’s a weird answer, but for me, that is what made sense to me when I saw in the midst of extreme suffering of my husband and my children, and I saw them creating and laughing and connecting like that and creating pure joy, it was, Oh, this is going to be the worst, most horrible time of our lives.
Is it? It wasn’t. It should have been, but it wasn’t. It was joyful. Just allow yourself to be wrong. Allow your mind to be opened and how your relationship can change with God. Because when you find yourself feeling very, very alone, that nobody understands you, and we all feel that way, God is there. He never removes himself from us. We don’t have to prove any worthiness or any credentials. And that changes your faith, too. And it gives you that confidence. So that’s a roundabout reason why how I would say how to create hope.
Well, I’m very grateful for it. It made sense. Okay, I hope it does. And you’re rad. You’re rad. And thank you so much for coming on.
Thank you for having me.
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dyejo
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