Interview with Jeni Stepanek, Mother of Poet and Peace Activist Mattie Stepanek

Go forth vowing to choose gently, celebrating life each day.

 Go forth vowing to choose wisely, playing after every storm.”

From “Choice Vows” by Mattie J.T. Stepanek

In Loving through Heartsongs (Hyperion, 2003)

I am honored to have the privilege of speaking to Jeni Stepanek, an incredibly courageous woman who lives life to the fullest, despite incomprehensible adversity.  Dr. Stepanek lost her 4 children to a rare form of muscular dystrophy, from which she herself also suffers.  Her ability to rise above these odds and create a life of meaning and joy is truly heroic.

It’s no wonder that her son Mattie became the inspirational peacemaker and poet who was chosen by Oprah as one of her “Most Memorable Guests.”  He continues to be a teacher to the world through his profound words of poetry; and Mom continues to carry forth her son’s thriving philosophy of life through her own teachings and work directing the Mattie J.T. Stepanek Foundation, spreading Mattie’s message of hope and peace.

What personal qualities have helped you carry on and move in a positive direction?

Faith. I believe there is a higher power; that God is present amid suffering as well as celebration. People are quick to say ‘thank you God’ when they win the game, but to say ‘where was God’ when they lose the game.  That’s not what God is about.  God is about being present with us in triumph and tragedy.  So I have a very deep faith.

I also think I have resilience – which is not the same as optimism, as in just keep a stiff upper lip.  Resilience is making a choice to move forward despite the fact that in all probability I will be facing burdens that are balanced in with my blessings.

The third quality I have is an incredible community of support.  If I can’t find a reason to take that next breath with purpose, there are other people willing to offer me a reason. I just have to allow that.

A lot of people have a community of support and they don’t realize it because they are not looking for it; they’re not open to it.  The easiest thing would be to just lie in my bed, miserable with my disability, miserable with my empty lap, miserable with what’s happening if you look at the actual facts of my life.

But that’s not what life is about.  So it is a choice to seek hope in each moment; and sometimes I have to make that choice when I open my eyes in the morning and then a gazillion times throughout the day.  But that choice can only be made by me.  And I’ve had times that there are people who would be there to help me, but if I’m feeling too miserable about myself or my life , I don’t always see the community of support that’s out there willing to help. It really is a two-way street.  It‘s not just about people giving; it’s about being able to receive, and recognizing that we have something to give.  Even as I sit here in a wheelchair and on a ventilator, I have something to offer. We have to do our work in it also.

Did you go through a period of self-pity?

No, I’ve never been through times of self-pity. I have been through, and will probably go through, many times of misery though.  And that’s very different.  I’ve never felt, ‘oh, why me’.  Pity is when you feel bad, you feel helpless, you do nothing and you don’t seek answers.  Misery is when your life has so many storms that it’s hard to figure out how to ‘play after the storm’, as Mattie’s philosophy was, because the storm doesn’t end. I’ve had my great share of miserable moments and I probably will have many more, but I go back to the blessings of faith and resilience, which is choosing hope, choosing to reflect God in the moment, and accepting a community of support.

What a great distinction between self-pity and misery; because self-pity keeps us in that hole and keeps us with the why’s, but we can’t answer the why’s.

No, we can’t. And it’s O.K. to question why.  Anybody who loses a loved one, or faces a personal tragedy, whether it’s disability or loss of a job or loss of a friendship, anything that tears at your heart or your mind or spirit, you have a right to be sad and angry and to question why – or as Dr. Phil says, ‘you own your feelings’.  Sadness is real; anger, frustration, misery are real.  But pity is just getting stuck in that and not looking to say okay.  I didn’t choose this life, but I can choose how I reflect this life on to other people and into the future in a way that still shows that God is present and life is worthy.  In some moments it may not seem like life is worthy, but I know it is and this too shall pass.

Was there a specific moment or epiphany that helped guide you to this better place mentally and psychologically, or did it evolve over time?

Largely it has evolved. I didn’t suddenly go ‘oh my gosh I just need to choose hope.’  It really is something that you grow in.  We grow in faith, we grow in resilience and we grow in the community of support.

I do have to say I had many ‘aha moments’ with my son Mattie, right down to the final sentence he ever spoke within a couple of days of dying – ‘choose to inhale, don’t breathe simply to exist.’  He was quite worried about how I’d go on because I had said ‘you can’t die, you’re my everything, I love you, I adore you, you’re my son, my student, my teacher, my playmate, my prayer partner, my best friend.’  We were very close. I had said ‘you cannot leave me; I can’t do this.’ But death got closer and closer.  He was really trying to hang on for me.  He looked at me and said, ‘choose to inhale, don’t breathe simply to exist.’  And I thought about it.  It was about a day or so later and I looked at him and said, ‘you know what, I will choose to inhale.  It won’t be easy, but it will be worthy and I will be okay. You can rest.’  He said ‘yes’ and within minutes he was gone.

I gave him a gift that broke my heart but lifted his spirit.

What are your day-to-day coping skills that keep you afloat?

If I get stuck in a moment where I’m feeling pretty miserable, I really try to stop and instead of thinking about why I’m miserable and how miserable I am, I try to think about who out there needs something I might still have to offer.  And it may be that I go through my email inbox and find somebody that I might not have given a long response, and I go back and take the time to answer at length.  When I have time to be miserable, it means not a lot is happening in my life.  I’ll go back to things that are worthy in my life and give somebody something; I’ll give them a gift, and that helps me realize I have something to offer.

That’s one coping skill – to put my misery aside and deliberately choose to try to make some difference that is good for someone else.

Another thing I’ll do is photography.  I’ll go outside with a camera and find things to take photographs of because I love amateur photography. And then I’ll come back in and find Mattie quotes, and put them together and make gifts for people, such as stationary.

What thoughts propel you forward?

I wake each day with, ‘thank You God, I woke up!’ on my breath.  When I wake up and realize, oh my, I have a whole new day, I am thrilled. And I know I’m going to hurt physically, I know I’m going to miss my children, I know I’m going to wonder what happens if something unforeseen happens and I have an extra bill and I can’t make ends meet this month.  I still honestly wake up every morning going ah, thank you God, life is amazing.  Thank you for giving me another day to reflect Your presence.

You can continue to feel like that despite losing so much?

Absolutely. That does not mean that I don’t miss my children, that I don’t cry.  I would say I cry at least once every single day.  I buried four children; I did not know I was passing on a disease to them when I was giving birth to them.  I’m now dying from the same disease.  I am divorced.  I don’t have a regular job.  But then I think, oh my gosh, I’m awake, I’m taking a breath.  I live in a beautiful house because of my son; I overlook a park named in honor of my son.  I see what grew from his life.  I’m not looking back on what was; I’m looking forward.  I am grateful for that.

A quote from Mattie that is in the book I wrote about his life (“Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs) is, “If you have enough breath to complain about anything, you have more than enough reason to give thanks about something.”  When he said at age 10 after realizing that his body was dying, this is when I first started saying if I’ve got another breath, I’m going to use it to give thanks for something.  There are mornings when I wake up and I say thank you God, and I say please help me get through today and help me reflect that you’re with us even when we’re suffering. Because there are days with some extreme pain in it.  Those are the thoughts that I wake up with to really start with appreciation.

It sounds like the biggest thing that keeps you going is such a strong sense of purpose and meaning.

Yes, but it’s not like meaning and purpose is placed in front of my face and I just have to put my hands out and there it is.  I have to search for it, I have to create it; I have to make meaning.

People will look at Mattie’s life and say, ‘wow, that’s a life with purpose’.  I have a son named Stevie who died at age 6 months and 2 days.  His life had just as much meaning and purpose.  He had as much reason to be here as Mattie, who lived almost 14 years, as did my daughter Katie and my son Jamie.  I have to search harder to figure out what is the meaning of life when a child lives for barely 6 months, and those 6 months are filled with suffering.  But I guarantee you there was meaning and there continues to be meaning.  Mattie was and is who he was and is because of his siblings.  He appreciated life at a deep, deep level because he was the youngest.  He had the gift of longevity because he was the baby.  It’s not that the first three came so that Mattie could live; but because the first three came, Mattie did live.  We accept that, and celebrate meaning within that truth.

What advice would you offer someone going through a difficult time?

That’s probably the hardest question of all. I’m good at telling you what I do, but to offer advice to others, I’d have to be in their mind and heart and spirit.

The best advice would be to know that you’re not alone, even if you don’t know someone in your situation, there is somebody in this world that you may or may not ever meet that is feeling the same pain as you. You’re not alone.

And two: there is something you can do with this moment that places meaning in some next moment; and maybe it’s not meaning for you, maybe you’re too much in pain to see anything good about your life.  But there’s something you can do for someone else.  And that’s what God calls all of us to do.  Simply love your neighbors.  And you can love your neighbor by doing something good even if you’re feeling horrible.  Maybe it’s just simply a smile.  Just know that you’re not alone and that you do matter.

Advice is a very tricky thing.  It makes it sound like I have the answers and I don’t.  And that someone can write out a prescription that heals all spirits.  And there is no such thing.  Advice sounds like it’s a fix.  If you offer advice and somebody is not ready for that, then they can feel even worse about themselves.  I try not to offer advice.  Advice is what you get from your doctor who can say, ‘your foot hurts, here do this and it may help’.  Instead, I can offer a message; I can share what helps me, I can share what I’ve heard from others that has helped them.

Is there anything else you’d like to share or express?

There’s something about Mattie’s life, something about the way he lived and chose and spoke that inspires people to say, ‘I do have problems but I can make these same choices. I can think beyond myself; I can think into the next moment.’

I would encourage people to learn more about Mattie – whether it’s visiting thewebsite or reading the Messenger book or reading a poem or essay he wrote in any of his seven books.

For more information, please visit: www.mattieonline.com

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