I was 16. The sun hung bright and felt impossibly near with its heat. The ground appeared to waver, distorting from steam whipping up off of scorched earth. I sat on the edge of the bed of a stranger’s red truck (Where I grew up, if a truck bed was opened at a gathering, it was an open invitation for anyone to sit and burn the back of their thighs), legs dangling, head tilted upward with eyes peering at clouds through the trees. The noise of high-voiced 6th graders filled the air, dampened only by the occasional booming sound of a soon-to-be-senior calling for order. I had just finished using another human as a wheelbarrow in a race and sweat clung to my body, dripping out of every pore. Breathing felt more like drinking water than inhaling air. Louisiana summer is like that.
My mind shifted effortlessly between the events of the day and the approaching last year of high school. I needed notebooks and pencils, shoes, and what was my schedule again?
He came sauntering down the path in front of me, his arms swinging casually, pace relaxed. As I came into his view, he paused briefly, assessing the situation.
He grinned and kept walking forward.
“This is what I have for you.”
The voice, heard only by me, was like audible peace. I grinned back at the familiar stranger, watching his hair flash gold in the streaming sunlight. He had broad shoulders, a long stride. He plopped down next to me. Full lips, bright blue eyes with amber circles around the pupils. They looked kind…and mischievous.
This is my most prominent memory of Jesse back when I knew of him but didn’t yet know him. It remains one of the only moments in my life when I have heard an audible voice of God. As I sat-unknowingly in the back of his truck-watching him walk toward me, at least one portion of my future was laid out in plain view. His name was Jesse, and he was to be my beloved.
While I’ve known I was marrying Jesse since that moment, we didn’t discuss marriage (or even seriously date) for another 10 months. On April 9th of the following year, Jesse was driving to my parent’s house to visit his “friend”, Ashley (me), when he heard God say, in his own audible voice moment,
“Open your eyes!”
And when he got to me, he did. He can show you the exact spot in our hometown where he heard the Lord speak to him. We’ve been together ever since that day, though we were very close friends from the day he found me sitting in the back of his truck in June of ’98. A few weeks ago marked 17 years since we started on an intentional path of doing life together. 17 years. I don’t have to tell you it’s been a bumpy ride. I assume, because you’re reading this, that you at least know what life has been for us since September, but life has never been smooth for us. We have grown up together, grown into adulthood and parenthood together. We have lived in multiple cities, had different jobs, various big shifts in life, 4 children. We have seen deaths and deliverances, despair and hope. No one who has walked alongside us will tell you that our path has been easy. We love fiercely in our own ways, and there has been no shortage of stubbornness from either of us. Strong personalities and stronger wills have simultaneously brought us to many hard places and protected us from them. I’m learning with increasing clarity through this most recent trial what a funny little thing the quest for true love is in our society, and how much I’ve unintentionally bought in to the version of that love that sees only the moments found on a hot Louisiana summer day as expressions of it. Often fickle, obligated, self-revolving, entitled, feelings-driven, never-wounding, all-seeing…love? Is it? Is that true love? If we’re really being honest with ourselves, when most of us spout off what we want of love, we’re saying we want those things to be given to us more than we want to give them away. Maybe that’s just me. Maybe I’m more cynical than most. But I think the 20 year old version of me would have thought a lot harder about the commitment I was about to make on my wedding day had my understanding of love been what it is now:
“Love is patient (with your husband when he cannot remember your lives together because of trauma from brain surgeries) and kind (when anger rages inside at the loss and the grief and the fear); love does not envy (his lack of understanding of the loss and the grief you’re living) or boast (in the way you have taken over two lives and haven’t drowned from the weight); it is not arrogant or rude (when your brain injured husband is only angry with his primary caretaker: you). It does not insist on its own way (when nothing makes earthly sense and you think you can fix it by your own means), it is not irritable or resentful (toward others who live oblivious to the daily struggle that is your life); it does not rejoice at wrongdoing (even though it seems evil is glorified and goodness is the gateway to folly), but rejoices with the truth (especially in the suffering, especially in the darkness, especially in the despair). Love bears all things (even the depth of your beloved’s grief and loss when he cannot hold it himself), believes all things (even when he cannot grasp it himself), hopes all things (even when there isn’t a drop of hope in his demeanor to be found), endures all things (even cancer, even brain cancer, even loss of his self awareness and loss of everything you ever thought life would be). Love never ends (even when a brain tumor means it sometimes can’t be returned)…” taken from Corinthians 13
Everything I thought love was, everything I thought I needed in my relationship with my spouse, died with the words, “Your husband has brain cancer.” And praise God for that! Because this is better, guys. It’s better. I’d rather love Jesse with no return for the rest of my life than have a hundred years of marriage with him, dissecting every expression of love he gives me, always wondering about the depths of it. I don’t need that. I don’t want that. I want to pour everything I am into him every day I have with him so that he never has to wonder for a second whether or not he’s worth the sacrifice. After all, isn’t that the way Christ loves His church? Pouring himself out, even unto death, so that His beloved can have everything He is, all of His hope, His love, His mercy, His grace; and be everything He sees they can be, even the things they cannot see in themselves. Doesn’t Christ love with that unabated love? Didn’t He consider His beloved worth the sacrifice? Though the pain was great, the fulfillment of reconnecting with His bride was worth it, not because His bride did anything to express her love to Him but because He did everything to express His love to her.
Years from now, when all of this is long passed and our children are grown and considering marriage and want to know what it was like to live alongside brain cancer-when they want to know what marriage is really like, what it really costs and what it really gives-I hope to tell them this thing I’ve learned about that mythical true love we all pursue so endlessly in this life:
Truly loving someone for life is hard, beautiful, sometimes painful surrender and sacrifice, and love is never truer than when you love without the goal of having it returned.
I’ve been reading your post for a few months now. This particular post really hit home. It’s my current life to a ‘T’. My husband and I will be married 46 yrs this June. We were High School sweethearts. At 42 yrs of marriage, hubby was diagnosed with a brain tumor the size of a golf ball. Tumor was removed and things have forever changed. We are both Christians and know that God will provide our needs. Some days can still be downright hard though. My Hubby needs me as much as I need him…..love wins.
Hi Ashley/Nubby… Let me introduce myself. Mary Jepperson, sister, fellow warrior. I’ve known of you and Jesse for several years meeting you at weddings/showers of the Smelek gang. They’ve been dear friends since the early 80’s. Brian posted a cryptic entry on FB in early September…I inquired regarding it…and have been following y’all since.
God has strongly gifted you with writing. That is a blessing! To me and I’m sure many others you have spoken what we may intuit or know but can’t express. What a gift you give in these posts! Thank you for re-presenting Jesus the way you do through your words.
That said…I’m Jesse. My Steve is Ashley. In ’98 I learned the why of forgetfulness, poor vision, poor comprehension, extreme fatigue, etc. It had crept up on me. An unheard of autoimmune disease had lurked in me since at least my early teens slowly wreaking havoc in my body. Tangible hardships and suffering through the mid 80’s include 5 children waiting for us in heaven who were born too soon for viability or born sleeping. Our ‘bookends’ are miracles of grace! By mid 99 I had lost much functionality and was declining rapidly. Yet God’s mercy overtook and He stopped the progress of the disease as the effects hung on through 2002…but the repercussions linger to this day. This disease was killing me cell by cell and in so doing it was causing strokes all over my body as my blood couldn’t flow and would get stuck in vessels, irritate them, then explode to get out…the strokes. Needless to say that caused damage everywhere they occurred. Besides losing the ability to walk, talk, take care of my basic needs – the hardest was my brain function. Has it been just like a brain tumor and surgeries? I won’t even pretend there’s a comparison! It would be insulting to both Jesse and I. Are there similarities? Absolutely. Relearning has been hard. I’m fully functional now with a bit of mobility issues. But no longer wheelchair bound or walker or even cane needed! I’ve even given a few talks when asked without stumbling over my words or thoughts, I think. (I never preached but I was a speaker and teacher.) I still do puzzles and brain exercises to strengthen and reprogram my brain function. (See anything by Dr. Caroline Leaf) Brain fatigue is real. I shut down and can’t process more information even in the smallest amounts. It usually isn’t till evening but sometimes I wake up with it. I’ve given up my life as I knew it. I was a nurse and business owner and super mom and overachieving Christian and…and…and…you get the picture. And yes, our lives took on ‘before’ and ‘after’. I could say more and we can talk if you want. But this contact was to be more about you than me. This was for context. Your gift to me in words is helping me see a side of my hubby in concrete terms. He’s been all you described and then some from I Cor 13. And all without verbal complaint but emphasizing that’s what he promised June 5, 1976. His life was turned upside down as well. He lived for about 20 months waiting for my medical prognosis to play out. Being sent home to die is rather dire, you know? Life as we knew revolved around the when…will she die soon or not? As you write I see the life you live through Steve’s eyes. The concerns, the fears, the frustrations, the hopes dashed, the dreams unrealized. I’m not without knowledge. I’ve seen it played out as we’ve suffered in every way imaginable because of this. Yet reading your thoughts helps me to better understand from his perspective. And perspective is everything.
Ashley, keep writing. Keep processing this new life in words. You have no way of knowing the lives you are impacting for the kingdom. That’s the perspective shift. Our focus became clearer and more concentrated on the Who we were living for rather than the dailies of life. This life we now live with our Abba always whispering the way to go has changed us to the core of our beings. We can’t go back. But we don’t want to either. You are learning in new ways daily how to walk by faith step by step and that’s gold. Even though that is God’s desire for each of His kids few actually get there where we listen to His voice saying “turn right, turn left, walk this path, etc.” Pause. Breathe. Relish the intimacy. Forced in the beginning but now I don’t know how to live and move and have my being apart from Him. The road ahead is long. I’m not gonna sugarcoat it. Neither of us knows our future or how our lives will play out. But we know the end…or the beginning of real LIFE. And that’s all that matters.
If you read this far thanks for doing so! My heart cries out for you more than Jesse. Burden bearer keep sharing your burden. Your words are important. God’s got this. Take courage. Don’t be afraid. Just breathe. He’ll come and rescue you in the moment. Jesse…God’s gift. Speak his name and you affirm Jehovah exists. Every time. God is with you…in front going before you, behind as your rear guard and beside you to walk with you, to carry you, to uphold you with His righteous right hand. Never doubt that.
❤️ Mary Jepperson “May God himself, the God who makes everything holy and whole, make you holy and whole, put you together—spirit, soul, and body—and keep you fit for the coming of our Master, Jesus Christ.” 1 Thess. 5:23 MSG
I appreciate what Ashley, Debbie and Mary have written – so encouraging. Our physical issues are minor in comparison to all that you ladies are experiencing. We have been fallowing Jesse & Ashley with prayer since a mutual friend told us about you.”Therefore we do not lose heart. Though outwardly we are wasting away: yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4: 16-18.
Ashley, you take my breath away, and draw tears with the eloquence and grace of your story. Your and your family mean so very much to us. You ARE in our prayers. Your & Jesse honor God with your lives, and with your response to life…
I was thrilled to see you’d written again…. I open “every little jot” every morning as I read my other devotionals and pray. This message is coming from a different perspective it seems to me, and so revealing to what is in your mind….. It’s impossible to put myself in your shoes and understand what you’re going thru; but these words give us readers a glimps into your world. And it’s helpful to know HOW to pray for you and yours, and WHAT, when all the while ministering to our own lives in the place each of us do find ourselves. I agree with others who say God has given you a blessing of words to put on paper to share with others! And you’re obedient to do it, when I know you have a “million things to do”, but stop and write in the midst of it all.
I so enjoyed Jesse’s sermon on Sunday, and our visit following! Your middle name should be grace (gracious).
In His big love and mine, granny lee