The “M” in “W” for Warrior
Men & Women, A Husband and Wife’s Journey with Mesh
by Aaron Leigh Horton
This is the most difficult story I’ve ever set about to write, and it will likely be a difficult one for you to read. It is the first piece in what is a series I’m calling “The M in W for Warrior” at http://www.themeshwarrior.com. I’m writing about the MEN in our lives who are getting it right. There is no handbook for how to love a mesh-injured woman, but there are some mighty strong souls who are writing one for the rest of us to learn from and maybe even follow.
Many of you have read “The Faces of Mesh,” my ongoing series of Patient Profiles here and on my blog. The more profiles I write, the more I learn about just how deeply this injury affects families and husbands in particular. I know how extremely it has affected my own family, but when I started to meet more women who are blessed to have support, even one person – family or not, it took a bit of a toll on me honestly- just to watch someone else in my shoes, trying to figure out how to love someone in a way that, while so injured, he/she can understand and receive our attempts at love or something like it. I recognize the pain, defeat and profound sense of failure that comes along with getting it right sometimes but wrong in every way at other times. The learning curve is sharp in pitch and it punctures the soul with every rise. You never know what will spill out of a punctured soul.
Most of my writing has focused on the injured, but the more I write about these amazing women and families, the more I see and experience what I know all too well as a true and tragic journey. Living it vicariously through the eyes of someone else hurts even more somehow. It’s like looking in a mirror and expecting, even hoping, to see something different. But the mirror will not – cannot – lie. It’s painful to re-experience this ugly Truth (with a capital “T”) we are all living through; it’s just about as much as one can experience or handle this side of Heaven – at least that’s what it feels like to me.
But- I am a “The Mesh Warrior” and at times have taken great pride in putting the needs of others (the injured) before my own. But along this journey I have been humbled greatly and have come to see myself, rightfully so, as a mesh warrior with a lowercase “w,” and a warrior at all, simply because this injury often takes a women’s heart to truly understand. Even so, the real Warriors are the Men who stick with it – that’s the “M in W for Warrior,” and it’s a capital “M.”
“John Doe” is the first real-life “Mesh Warrior” I have interviewed, and I’m relying on Divine Inspiration to put his ways into words – unwavering commitment to his injured wife; his gentle but sturdy spirit; his daily work, bone-weary efforts to provide for his injured family; and his seemingly ceaseless capacity to Love with a capital “L” in the midst of his visibly deep and vast grief. I’ve contemplated, prayed, spent many hours alone pondering, and even through these efforts, I’m not sure I can do John and his family’s story the justice it deserves, in mere words. In fact, I’m sure of it.
Most of all – this story is a Lifelong Love Story, capital “L” – capital “S,” between an Angel, capital “A” and a Warrior, capital “W.”
More than ten weeks after my interview with “The Doe Family” in Nashville, I finally have what still feels like a loose handle on the overwhelming goodness of their hearts, and I’m honored to share their story with you.
I first met Lady Jane Doe briefly online just a few days before traveling to Los Angeles with my mother and Barb Vance my own “Patient Zero”. Lady Doe was traveling alone, and I could not stand the thought of someone in her condition traversing the cruel world of airline travel and UCLA’s often confounding procedures, rules, regulations and red tape, all alone. I agreed to meet Lady Doe as soon as she reached the hotel and accompany her, as much as I was able, to her appointments. I had little information about her or why she was traveling alone. But approaching midnight the evening she arrived at The Tiverton House in L.A., I learned.
Her plane was delayed and rerouted, and she called when she finally made it. I knocked at her door, and the image that appeared almost took my breath away, this diminutive woman with beautiful blonde hair and a look of fear, confusion, and a high degree of stress across her face. She was barely standing, beaten down physically by her mesh-injured condition and by the frank realities of travel in this country. The shock of the fast pace; the often unwelcoming atmosphere in some of our country’s larger cities and the long day behind her, I immediately said, “Lady Doe, please sit down. Let me come to you where you’re most comfortable.”
Tears in her eyes, but kind and respectful, with the traditional hospitality and gracious soul of a Southern Belle, Lady Doe was genuinely confused by angry pedestrians, unhelpful taxi drivers, the many men who never even noticed her- an injured woman in a wheelchair, traveling alone. Simple chivalrous gestures like offering to push the elevator button or opening a door became, for her, a vast chasm of cultural disparity, manners that had gone missing, and the gulf was incomprehensible for this small-framed, woman from Tennessee with the grand ol’ heart. Similar events repeated themselves in the days to come, when I was with her.
On one particularly busy day, I ended up wearing my pajamas all day at UCLA, in the doctors’ offices and the laboratories, because help of any kind continued to elude us- two injured women (one in a wheelchair; one having a self-described, full-blown panic attack) and me in my PJs while pushing the wheelchair. We reflect now with laughter, but that day was anything but amusing, though an absurd farce it certainly was. Oddly enough hospital staff, doctors, and pedestrians alike had no negative reaction whatsoever, and still took all of us seriously – a benefit of being our kind of invisible, I guess. (The full story of this day deserves its own post.)
You may be thinking, “Well you started this off as a Love story. So where was Lady Doe’s Love?”
Be forewarned: this true love story is also tragic, as much or more than any famous Hollywood screenplay. Lady Doe’s Love is Gentleman Doe; a full-time landscape business owner, father of two and grandfather to one. He was home caring for the couple’s adorable 4-year old grandson, Little Doe, whom I had the blessed pleasure of meeting when I visited Nashville and spent time this magnificent family.
Gentleman Doe and Lady Doe are the parents of two boys; but tragically, the eldest of The Doe’s two sons and father to Lil’ Doe passed away in an unexpected and sudden incident, approaching three years ago now. They grieve his loss in overt and masked ways every single day while walking the journey of a mesh-injured family. Their younger son, works with his father and struggles to mourn as he is still so young – in his 20s – and it’s grueling for any person, of any age, to grasp the depths of suffering this family endures daily. I find it honorable that they speak openly with their younger son and their grandson about this brother, father and son, taken much too soon. In an age-appropriate ways, they allow the boys to be part of the whole family’s experience, the unpredictable and sometimes ugly suffering and all. It is so right. This is A FAMILY – at the height of its very definition, and it still includes their missing Angel above.
Sitting across from Lady Doe on a bed at Tiverton House, I ask, “Why in the world are you traveling alone in this condition? Frankly, Lady Doe, I’m surprised you made it.” She explains that her wonderful husband has had to stay home to work and watch over the rest of their family; pay medical and other bills; and offer their grandson the life any little boy deserves – one with a father figure. I will later learn when I meet him in person: Gentleman Doe is capital everything: Provider, Protector, Caregiver, Comforter, Companion, Father, Grandfather, Honorable, Noble, Wise, Strong, Vulnerable, Lady Doe’s Lifetime Love and Warrior. When I interview them in Nashville, I observe that they operate as ONE person. The Gentleman’s tender and gentle voice correcting his grandson’s anxious and wandering behaviors; never an ounce of frustration or anger enters his tone. Lady Does arms wide open to embrace the child as he obeys his grandfather.
After introducing ourselves, I get right down to asking questions, because we are in the Nashville airport, and have little time together. Gentleman Doe is a handsome man with a firm handshake, a genuine hug and a broad and wise smile. When I ask my first question, “What is the most obvious change you have noticed in your wife since the mesh was implanted?” he winces, as if bracing himself for his own answer. Compassion washes over me for this man, who has maybe never uttered these internal truths in front of his lovely wife, maybe has never uttered them aloud at all.
“It’s like she is disappearing in front of me. Every day, a little bit more, ya know?” He now has tears in his eyes. He is cringing and doubling over slightly. I feel his pain. It is visceral and primal, a fifth creature that joins our conversation. Lady Doe’s beautiful doe-eyes stare straight ahead and start to fill with heavy saltwater that doesn’t spill over but waits, hangs on. It makes her eyes sparkle and seem much larger than they are. Other than that, she is virtually expressionless. A sweet soul, tenderized by immense loss and grief, to a shred of its former self. I realize at this point that this story is not as much about Lady Doe as it is about her as one half of Gentleman Doe and a one fifth of a five-member family who has suffered enormously and is still suffering.
Gentleman and Lady Doe speak of how much strife the injury and its tentacles have caused amongst them and their extended family members; how hard it is to get help; how often Lady Doe has been accused of “faking it” or making her injury out to be more than it is. They have asked seemingly every person they can think of and every societal institution for help, and they are isolated from it. Help is outside their grasp, and they don’t understand why.
I don’t either. My stomach turns and twists inside me.
I am staring adoringly at this family as I muster another question: “How does it feel to be raising your grandson without your son?” With that, The Gentleman’s face is illuminated, “It feels like another chance. Lil’ Doe is our greatest blessing, and I am so grateful to God to get to raise another son. It feels like . . . like,” he struggles to find the words. “It feels like when my eldest son was young, like I get more time with him, ya know? Like God blessed me with more time. He is so much like his father.” The wince of pain returns. He uses one hand; thumb wiping one eye, middle finger wiping the other as his other hand rests on Lady Doe. I can tell his motion is repeated often throughout the day. It is an adaptation to the reality of a life that requires much more than two hands and ten fingers to manage. Lady Doe is in a wheelchair, still staring ahead, as if even glimpsing her husband’s grief has the ability to shatter her into pieces. She rises to go after the couple’s grandson who’s wandered a bit too far, and I feel a pressured sense of necessity to ask her to please sit, and let me go and grab him, but I follow The Gentleman’s lead and remain silent and seated. I realize this is a conscious act of his ever-present kindness as, even in his own fear, he allows HER to choose independence and how far she can push her body at this moment. I think, “How loving, how kind, how mature, how selfless . . . how. . . how. . . SCARY.” I reflect on my own mother’s condition and how she has fallen, in fact, has taken several nasty spills, some resulting in significant injury. That’s how I understand this is a gift of love, of kindness – not a haphazard gesture or an arbitrary oversight. The Gentleman knows exactly where his Love is. He seems as aware of her position in space and time as he is of his own two feet.
I am fascinated by the way this man loves his wife. I ask, “How did you learn how to do the right things to show your injured wife how much you love her?” He thinks about that for a long time, as he interjects to his grandson, “C’mon over and sit with Pops, Lil One.” His mind is clearly divided between my question and the stewardship of his family, but it’s still sharp and whole, each partition is also working independently, focused and attentive. I’m amazed. It is evidence of his Honesty. This man practices the Love he is espousing to me. And he is a Humble man, only telling me how he loves because I am asking. “C’mon over here, he says to his grandson again, and let’s talk a little bit more with Ms. Aaron.” Lil’ Doe comes and sits comfortably in his Pop’s embrace.
“I just- I just became broken, ya know? I had to admit that I couldn’t do this. I asked for God’s help. And he gave it to me. He gives it to me every day. I just keep asking for it, and I believe in Him, ya know?” Gesturing towards his Lady, “We believe in Him. He has made me the man I am today. If it weren’t for Him,” his eyes well up again and accompany this gesture, now familiar to me, as he wipes away tears, “I just don’t know where we’d be.” I nod in agreement. “I want my wife back. I miss my wife. She’s my best friend. She’s my everything.” I see a new countenance come over him. Still vulnerable, but now I also observe his resolve and commitment to her and his family. This man is NOT. GOING. ANYWHERE. EVER. no matter how much harder life gets for his family and him. He takes great pride in that he is responsible for his family, this family, the one God gave him. I marvel as he leads so tenderly with a silent strength and a firm determination, and most importantly, with God and Hope as his guides. These beliefs are ever-present in his demeanor, even when he is crying, cringing or smiling, or as he watches his grandson clumsily climb onto a chair and pretend-play. In fact, he is radiant from his core with his beliefs, and they clearly spill over into his actions. He loves with Action – as a verb, not a noun or a feeling, though it is evident that he longs for times past when love could be more flippant, more playful, with levity.
Despite the constant interruption of the intercom overhead, I have completely forgotten that I am in this place (primarily) to fly back home to Dallas. Amidst this bustling airport Starbucks, the world has seemed to fade away during our conversation. My husband has been sending text messages saying, “Where are you? We are boarding.” I haven’t even heard them or noticed the flashing and buzzing of my phone. Consciously or subconsciously, I just do not want to leave this family. I figure I can squeeze in a little more time with them, and respond to my husband, “Soon, I promise.” I start flirting with Lil’ Doe in the way that aunts do with little boys in their families. “I sure do like your sweater. Will you come give me a hug?” I plead. He is bashful and runs to Lady Doe. She says, “Lil’ One, now go give Ms. Aaron a hug. Aaron is Lady’s friend.” He bounds over to me in a spurt of energy, but still reluctant. Once I grasp his little body, he soaks up the squeezing and giggling. Actually, we both do.
I have a sense now of why Gentleman Doe feels the way he does. This little boy is spilling joy through his fledgling, punctured soul. I think, “This Gentle Man has learned how to first see the good and then the bad, but only if it’s necessary to see the bad at all.” And right now, with his grandson, a precious reminder of their Loved and Lost son, I don’t see any reason to feel the bad right now either. I chase Lil’ Doe around the store a little bit. I make funny faces at him. I delight in his delight. For a moment, the world is right. Four punctured souls sharing in the joy and light that is spilling out of this little boy in this present moment. We all experience – together – as a singular moment of Goodness.
I think of the way some of my mother’s doctors have spoken to her, to us. I think of the way they have belittled so many women with whom I am a now friends. I imagine what some doctors think of us; those country bumpkins from Texas or Tennessee – the “fly-over” states.
I consider how rare and so precious Gentleman Doe is in our world – in the whole wide world. He is a True MAN. A TRUE WARRIOR.
He stays to fight.
He will not flee to a “greener pasture.”
Or stay self-absorbed and ignorant in denial.
He will not run to an addiction, habit or distraction.
He will not leave his Lady Doe no matter what any doctor says about her future.
He quite simply does not believe she is less beautiful because of this horrid injury.
He personifies the capital “M,” in Man, embedded as if in code in the word, “Warrior.”
His presence makes me feel safe, and I’m not injured or in danger of anything (but maybe missing my flight).
I get a text from my own True MAN who says, “Babe, seriously, we’re seated on the plane. We’re about to miss it.” I snap a few pictures and my heart begins to feel the sting at leaving this family. I am already missing them. I am so grateful that Lady Doe, this woman I have come to love so dearly, will be safe tonight with her True Gentleman, who “Had me at Hello,” to quote one of those famous Hollywood love stories (Jerry Maguire, 1996).
I say a silent prayer that I will find others like Gentlemen Doe who will speak out to me, but more importantly to a doctor, during a visit or to the doctor who is responsible for the injury of his wife, partner and best friend. “Hey, I don’t care if you’re a doctor or who you are; you will not speak to my Love that way.” I know Gentlemen Doe will do that, if he hasn’t already. But he’s just a landscaper from rural Tennessee right, Doc? What could he possibly know that you don’t? I’m finding out how much he knows that you don’t or won’t.
Even this nobody little girl from Nowhere, West Texas can answer that question.
Most of the doctors I have seen on the journey with my mother are not even HALF the person that Gentleman Doe is – whether male or female. He does not shirk responsibility or blame someone else for what he is responsible for saying or doing. I sense that if he were to wrongly or accidentally cut someone with the blade of one of his landscaping tools, he would do what a True Person of Integrity does.
He’d probably say:
“I’m so very sorry.”
“I have wronged you. Will you/Can you forgive me?”
“How can I make things right?”
Maybe he should teach a class in medical school or train people who design, manufacture and sell medical devices like the mesh, which, criminally, was not tested on (living) humans before coming to market for sale. He could teach on other crimes of the spirit, like robbery – of someone’s right to pursue happiness.
Can you even imagine how far those few sentences above would take us in this war against the mesh itself and against those people who do not have the constitution of soul, bravery, courage, or something like humility, just enough to say those “I’m sorry?” Will doctors do that? Will manufacturers? Will we, ourselves, say those sentences when we have wronged one another? We all learned how to apologize in Kindergarten, didn’t we; and we weren’t able to harm innocent people right out in the open, with little or no repercussion, as are these doctors and manufacturers. We learned from our grandparents, our parents, our teachers, didn’t we? When did it become acceptable to live a life considered to upstanding without OFTEN using that very basic practice of taking responsibility for one’s own actions and apologizing for injuring someone, like even an elementary school child can?
Just try to imagine a space where every one, every doctor does just that, EVERY time he or she wrongs another. If you can find that space; hang on to it, even for a second, and everything will be right in the world for just a moment.
God bless you Gentleman and Lady Doe for teaching me and for allowing me to write intimately about our time together so that YOUR ACTIONS can teach others, through my words. I am grateful for you and the life you lead.
Lady Doe had her mesh explant surgery in April of 2014. Please keep her and her family in your thoughts and prayers as they prepare for the next part of this journey we’re all on together.
Here is Lady Doe’s favorite song. A gift to you all from her sweet and sturdy spirit