Preface: I asked Martin to share his story, knowing that he has a much-needed, unique voice. He sent me his first draft, and I was confused by the first line. I thought, “this story is supposed to be about you.” But as I read on I quickly realized it’s only fitting that he begins his story by writing about the most cherished part of his life — his wife. Where he begins his story says just as much about his character as the rest of what you’re about to read. I’m so thankful to have had the opportunity to read something that profoundly impacted my own life.
— Anna Kowlessar, Founder of People Hope
My wife is amazing. Perfect.
She's smart and beautiful and hilarious, even as I type this I’m smiling as I think back on the (literally) thousands of times she’s made me laugh over the 15 years we’ve been together. She's the type of wife and mother I prayed for, and that my parents begged God for their son to marry. When I say she’s smart, I don't mean she does math well; I mean she's literally brilliant. She understands things quickly, processes information, and sorts it while I’m still rereading.
She’s beautiful, stunning, sexy, mysterious. These words lose their meaning compared to her. She has these deep brown eyes that speak volumes about her heart. Her shape and frame are intoxicating. Her face and smile, her delicate hands, the arrow tattoo on her foot. There is nothing about her that isn't the pinnacle of God’s creation.
She’s hilarious. No one has ever made me laugh like she does. Her humor isn't crass or cruel; it’s timely and quick-witted and funny. When she teases me or laughs at something I’ve done, there is a sweet kindness to her laugh that speaks no malice or harm, only joy. It’s perfect and perfectly sweet, and her laughter brightens my very worst moods.
By looking at her or watching her, you would never guess that she's struggling with deep cramping and stabbing pain from a chronic illness that has plagued her beautiful body since she was 12 years old.
You’d never suspect the pain was crippling and exhausting and ever-present. I didn't suspect either. I didn't even really understand what she was dealing with while we were getting to know each other, and it wasn't until I started going to her treatments and studying for myself what she was dealing with that I started to even begin to grasp what she was suffering from.
Her drive and commitment to who she is means that “she” supersedes her illness. Her smile shines through her pain. Her love of family and the people around her are more visible than the horror. Occasionally a tear will escape or a sob will force its way out, but in her genuine emotional beauty, she smiles past it, not putting on a front, but allowing her true self to shine through. The true and strong “she,” the joyful “she,” the “she” that sings like an angel and cracks jokes and loves deeply and fiercely is what she feeds and lives out.
This incredible strength of character is a double edged sword, however. When people see how strong she is, it makes it hard for them to believe that she feels like she’s being stabbed, or that she couldn't sleep from the aching and cramping. The migraine-inducing exhaustion “couldn't possibly” be blinding her and making her nauseous. It would be hard to believe that someone so full of life and love and beauty could be suffering so severely. Growing up was so hard for her because people didn't believe the pain. In her 20’s her friends and even some doctors didn't believe her. How could she expect to be in a relationship with friends who didn't understand and therefore wouldn't make room for how tired she could be or that she wasn't well today. She couldn't walk yesterday, but today she’s laughing and carrying on? How could she get the treatment she needed if the doctors wouldn't help her? Who would she rely on with her family so far away from where we live and unable to come help with the kids, or the house, or her pain? Who?
Me. Her husband. Her best friend. I take care of her. I do the dishes and take the kids to school, keep them clean and feed the cats. I sweep the floors, and take out the trash. I’m mom and dad and nurse and husband. I’m entertainer and caretaker. I’m homemaker and romancer. I chose this life everyday of our years of marriage, and I continue to choose it. Everyday I choose it anxiously and excitedly and with a renewed sense of passion for this delicate but strong life that God has placed in my care.
I'm mom and dad and nurse and husband. I'm entertainer and caretaker. I'm homemaker and romancer. I chose this life with her, and it is hard. It’s been really hard, and it’s been incredible. I have this desire to protect her and keep her from harm. To hurt the people who hurt her; to take all of her pain away. To pray it away, to find the cure and be the hero. To fix it. I want to give her the freedom to grow too, and blossom. I want to step aside while she becomes the fullness of who God made her to be, and to be strong and prove herself. She doesn't need me, she could do this all alone, and I know that. Boy, do I know it. She’s stronger than she knows, but I see that she’s tired. That the weight of being alive and choosing a joyful attitude is draining and it takes its toll. And it’s in those times, too, that I want to rescue her. Those are the times I stay awake all night praying and begging God; screaming at Him to give me her disease, to give me her pain and her hurts, her fears, and the scars they have caused. I know when I hold her hand while she sleeps during her infusion treatment in the endoscopy unit at the hospital, I would watch over her for all of eternity. I would let her sleep in my arms and watch over her in our bed while she whimpers from the discomfort during whatever dream her beautiful mind conjures. The times I encourage her to trust God, even in those moments I hate Him for allowing her to hurt like this, and He lovingly reminds me that He is God, that He loves her more, and loves me despite my lack of faith. Sometimes she just doesn't want to be strong anymore, and that’s okay. I will be strong when she can’t. God made her strong, but He made me just that much stronger to be our sons’ strength and her strength too. In the moments I even start to feel weak, God fills me with strength again. Even if it’s just enough to take another breath.
The pain isn't constant, there are good days and even weeks. There are also bad weeks, and days and things can change by the moment and the hour, and it’s painful to watch. It’s emotionally draining to roller coaster with someone in this way, to bare the weight of her disease with her, and be strong for her always. Never able to have a moment of weakness, never allowing her to see faithlessness, never allowing the Enemy a moment to sneak into my marriage and turn her already fragile heart away from God.
Sometimes this hyper-attentiveness doesn't allow God the space to touch her heart and remind her of who He is. He’s not only the Healer, He’s also the Comforter, the Counselor, Lover of her Soul and mine. My strength in care for her makes me fall behind in other areas.
Sometimes it’s hard not to look at friends and family who don't deal with the struggle of chronic illness, and wish for their life; to wish for a win every once in a while. It’s hard not to be angry with them, and consider scenarios where these people are confronted with the amazing gift they have in their health. It would feel so good to show people how good they have it when they whine about getting the flu or having to go to the doctor for the first time in years. To speak up when they complain about insurance and the price of medications, this self-righteous argument over healthcare and politics by people who aren't sick and never get sick, and whats “fair.” As an ER Nurse, I see this with my patients as well as the people I love.
Deep inside I feel this hurricane of anger and hate and bitterness roiling and growing and increasing in strength, while this overwhelming love and gratitude for this beautiful woman, the most perfect thing God has ever created, soothes the rage in me. Deep inside I feel this thankful wind blow. This cooling breeze that calms the storm in me and renews my soul and mind. I am humbled constantly by a Holy God, that in His amazing love and mercy, He would show me how faithful He is, and how extremely and perfectly He loves me and my incredible wife. How He reveals His loving and giving nature by creating this perfect being and giving her to me. I see how easily and significantly He fulfills her needs as a Father, and lover, and caregiver. I see Him being everything I am not and the reason for everything I am. I see Him romancing her in His ever pursuing love, and His never-ending faithfulness.
My life is far from perfect. It’s harder than I could have ever imagined. Too hard, sometimes. So hard I don't know how I can go on any more. The tears I’ve shed for her and for us, the life she wants so desperately that we just can’t have. But I wouldn't trade her for anyone. She is my heart’s one and only, the one my soul loves, and I commit my heart and life to her only every day until I die, and not a second before.
Yes, times can be tough. Yes, we have occasionally wondered if it wouldn’t have been better if God had seen fit to not give us life at all. But here’s where He shows His wisdom and understanding: we laugh, and smile, and appreciate every beautiful sunset. We steal kisses when it rains but the sun is out, or when it isn’t. We dance with our precious, innocent, trusting sons who protect and care for their mother as selflessly as I wish I could on my best day. We dance with each other. We hold hands, and enjoy the mountains we live in. I rest my left hand on her right hip as she sleeps, it makes us feel safe. We dream, and wonder, and cry, and sing, and make-believe. Our future is brighter because of the person the Father gave us to hold tightly to, and I will be forever thankful to Him for loving me enough to give me to her, and her to me.
Being married to my wife has made this outdoor-enthusiast, minimalist mountaineer, ER Nurse, and future flight medic into a hopeless romantic; a softy. And I love who I am with her.
Yes, things are hard. But I wouldn’t trade her. No, not for a second; not a moment on our worst days. Things will always be okay as long as we have each other and plenty of snacks.
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