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 Warriors” at 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 series of Patient Profiles at www.meshnewsdesk.com. The more Patient 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. To watch someone else in my shoes, trying to figure out how to love someone so injured in a way that they can understand. I recognize the pain, defeat and profound sense of failure that comes along with doing it right sometimes but wrong in every way other times. The learning curve is sharp in pitch and 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 somehow hurts even more. 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, 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 still, the real heroes are the Men who stick with it – that’s the “M in W for Warrior,” and it’s a capital “M.”
Phill J. 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 Phill 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.”
Lolo and Phill
More than ten weeks after my interview with the 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 LoLo briefly online just a few days before traveling to Los Angeles with my mother (click for more) and Barb Vance (click for more), my own “Patient Zero.” LoLo 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 LoLo 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, I learned.
Aaron and Lolo
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 if I were qualified to make a formal diagnosis; I’d say full-blown PTSD (Post Traumatic Stress Syndrome) 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, “LoLo, please sit down. Let me come to you where you’re most comfortable.”
Tears in her eyes, LoLo, kind and respectful, with the traditional hospitality and gracious soul of a Southern Belle, 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 that had gone missing, and this gulf was incomprehensible for this small-framed, southern woman 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 full-blown panic attack) and me in PJ's. 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 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 blog post.).
You may be thinking, “Well you started this off as a Love story.
Where was LoLo’s Love?”
Be forewarned: this true love story is also tragic, as much or more than any famous Hollywood screenplay. LoLo’s Love is Phill; 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, Kaiden, whom I had the blessed pleasure of meeting when I visited Nashville and interviewed this magnificent family.
Phil and LoLo are the parents of two boys; but tragically, Kaiden’s father passed away in an unexpected and sudden incident, just over two years ago. His name was Jesse, and they grieve his loss in overt and masked ways every single day while walking the journey of a mesh-injured family. Their youngest son, Ryan, 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 this depth of suffering. I find it honorable that they speak openly with Kaiden about his father and their grief. In an age-appropriate way, they allow him to be part of the whole of this family’s experience, suffering and all. It is so right. This is A FAMILY – at the height of its very definition, and it still includes Jesse.
A tribute to Jesse, the couple's oldest son can be found on FaceBook. Sitting across from LoLo on a bed at the Tiverton, I ask, “Why in the world are you traveling along in this condition? Frankly, LoLo, I’m surprised you made it.” She explains that her wonderful husband, Phill has had to stay home to work and watch over the rest of his family; pay medical and other bills; and offer his grandson the life any little boy deserves – one with a father.
I will later learn when I meet him in person: Phill is capital everything: Provider, Protector, Caregiver, Comforter, Companion, Honorable, Noble, Wise, Strong, Vulnerable, and LoLo’s Lifetime Love. When I interview them in Nashville, I observe that they operate as ONE person. Phill’s tender and gentle voice correcting his grandson’s anxious and wandering behaviors; never an ounce of frustration or anger enters his tone. LoLo’s arms wide open to embrace Kaiden 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. Phill 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 LoLo, 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. LoLo’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 glow and seem much larger. 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 LoLo as it is about LoLo as one half of Phill and a one fifth of a five-member family who has suffered enormously and is still suffering.
Phill and LoLo 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 LoLo 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 Jesse’s son because he was taken too soon?” With that, Phill’s face is illuminated, “It feels like another chance? Kaiden 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 Jesse 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 LoLo. 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. LoLo is in a wheelchair, still staring ahead, as if even glimpsing Phill’s grief has the ability to destroy her.
She rises to go after Kaiden 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 Phill’s lead and remain silent and seated. I realize this is a conscious act of Phill’s ever-present kindness; he allows HER to choose independence and how far she can push her body. I think, “How loving, how kind, how MATURE, how self-less. . . how scary.” I reflect on my own mother 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 kindness, not a haphazard gesture or arbitrary oversight. Phill knows exactly where LoLo 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, “Phill, 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, “C’mon over and sit with Paw Paw, Kaiden.” 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, Kaiden, and let’s talk a little bit more with Ms. Aaron.” Kaiden comes and sits comfortably in his Paw Paw’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 LoLo, “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 the now-familiar gesture 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 this life gets for his family and him. He takes great pride that he is responsible for his family, this family, the one that 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 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, 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 Kaiden in the way that aunts do with little boys in their family. “I sure do like your sweater. Will you come give me a hug?” I plead. He is bashful and runs to LoLo. She says, “Kaiden, now go give Ms. Aaron a hug. Aaron is Lully’s friend.” Kaiden comes over to me in a spurt of energy, but still reluctant. Once I grasp his little body, he soaks up the squeezing and giggling.
Kaiden and Aaron
I have a sense now of why Phill feels the way he does.
This little boy is spilling joy through his fledgling but punctured soul. I think, “This 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 Kaiden, his precious reminder of their Loved and Lost son, I don’t see any reason to feel the bad right now either. I chase Kaiden 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 Good. I think of the way some of my mother's doctors have
Lolo, Kaiden and Phill
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 (click for more); those country bumpkins from Texas or Tennessee – the “fly-over” states.
I consider how rare and so precious Phill is in our world – in the whole wide world.
He is a True MAN.
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 LoLo 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 “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, LoLo, this woman I have come to love so dearly will be safe tonight, with a 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 Phill who will speak out to me, but more importantly in doctor’s visit’s with their injured partners, “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 Phill 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?
Most of the doctors I have seen are not even HALF the person that Phill J. – whether male or female. Phill doesn’t shirk his responsibility or blame someone else for what he is responsible for saying or doing. I sense that if he were to 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 Phill 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 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, or bravery, courage, or humility, to say those three sentences? Can we say those sentences when we have wronged one another? Can doctors? Can manufacturers? We learned that in Kindergarten, didn’t we? Or from our grandmothers, our parents, our teachers? When did it become acceptable to live a life considered to be upstanding without using that very basic practice or taking responsibility for one’s own actions?
Just try to imagine a space where every one, every doctor does that, every time they wrong another. If you can find that space and hang on to it, even for a second, everything will be right in the world for just that moment.
God bless you Phill 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.
LoLo’s mesh explant surgery is scheduled for mid-April. 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.