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July 12, 2014
AN OPEN LETTER TO ALL LEADERS AND LEADERSHIP ORGANIZATIONS WITHIN THE TRANSVAGINAL MESH SUPPORT COMMUNITY from The Mesh Warrior and The Foundation:
Over the past year while helping to make the voices of the mesh injured heard, I have been disappointed, surprised, shocked, horrified, saddened and even repulsed by the negativity and the utterly selfish, often hateful behavior of many leaders within our small, but rapidly growing, community.
There are roughly 2,000 -3,000 people in our collective closed, private and secret online communities for the mesh injured. Citing my own numbers from reading and with the help of others, since 1995, almost 9 Million AMERICAN women have been implanted with polypropylene, transvaginal mesh, and we all know that number is growing rapidly each day, since many mesh products are still on the market and being implanted worldwide every day by urologists, gynecologists, gastroenterologists, urogynecologists and general surgeons as well as other specialists. Numbers for those injured as a result of hernia surgery send the number of the total of those injured skyrocketing into the multi-millions. As much progress as we have made, we have reached and engaged a miniscule amount of very badly damaged, innocent people who did not give informed consent for this under-tested, ill-fated, and failed medical implant.
Using the generous side of the equation, with our collective online communities, we are reaching and engaging 0.002% of the potentially isolated, hurting, and badly injured, a population that is also likely undereducated about this injury and the paths towards healing and reparations.
Stop to think about those numbers again. On a good day, we have engaged NOT TWO PERCENT, but POINT ZERO. ZERO. TWO. PERCENT of a number that doesn’t include hernia injuries. We have a lot of work to do together and quickly.
There is room and actually a desperate need for EVERY VOICE with a heart to help.
There is no room for finger-pointing, blaming, criticism of others’ beliefs or methods to educate, especially when differences are cosmetic and not ethically material. What is ethically material is that ANY injured family member or person could wage the all-out wars we’ve seen against decent people who are also injured.
At the very least, approaching this disaster with the methods above is a tragic and worrisome waste of precious time, given the magnitude of this manmade catastrophe. There are simply too many injured human beings still out there who need to hear from some of us, one of us, ALL of us. And of those 2-3,000 already engaged with us online, our words and efforts on their behalves should be honorable and useful to them; not wasteful, irrelevant; or worse – further damaging – but that’s exactly what we’re seeing.
Let our actions and the words we choose to speak comfort the injured, and as for the corruption that has harmed them, let us stand in front of the swords, bullets, knives and mesh. Period.
Having said that, during my time as part of our online communities, and as one of the many voices dedicating efforts of the heart and soul; I’ve been called a multitude of unpleasant names (and those are just the ones that have been said publically!). I’ve been accused of “making it all about me;” accused of being a “data collector” of some kind; accused of not following proper legal channels to establish my non-profit organization; accused of so much more that doesn’t even deserve the time it takes to repeat. Very early in my journey to figure out this mesh maze and while searching for answers to help my mother in her agony, I myself, was kicked out of two online support groups without having broken any forum rules. I had to begin my own journey, not because I wanted it that way, but because it was the right thing to do, because I know what I’m good at and what I’m not, and because there were few that could help or would help for lack of the constitution of character necessary to see past perceived differences to collaborate and be stronger as a team against these proverbial Goliath enemies.
Bottom line: We are all bystanders watching a train wreck; full of cars carrying our injured loved ones, a pile-up with passenger cars still slamming into the back of the mass and widespread carnage. Many of us have run immediately towards and into the wreckage to render aid, without knowing exactly what we would find. That is the road I chose. That is the road the public voices representing the victims in this massacre have chosen.
Using the imagery of that train wreck with many dead and injured and dying, it is easy to see, even self evident that in our extremely small, mesh-injured community, there is no room for name-calling or verbally-attacking others, either the injured or the first responders rendering aid to the injured; no room for attacking the faith of others, either overtly or via subversive, passive, or passive-aggressive tactics. In fact, the image of people doing those things, moments after happening upon a deadly train wreck is absurd, preposterous, unimaginable- people called in to help setting up competing aid tents and spending the precious breath of life attacking the other aid stations. It’s an outrageous notion. But, in fact, that is exactly what is happening in our community.
I have always, am now, and will always stay focused on the health of my own family first and then, secondly, the Mission & Vision of The Mesh Warrior Foundation for the injured.
Every precious second that cannot be recovered, with which I would choose to spend proving someone a “liar;” slandering a good name; focusing on petty and personal, indulgent rants – that is a moment I AM CHOOSING NOT TO BE INSIDE THAT AID TENT I HAVE SET UP, FIGHTING AND TRIAGING FOR THE NEXT INJURED, ISOLATED, LONELY PERSON with the DEMOLISHED and BEWILDERED family, bedraggled and following behind in waves, a family who does not yet know of our online communities, much less of the deplorable behavior, displayed by some leading voices.
We are adults. We cannot act like children who’ve not learned the difference between right and wrong; the difference between love and manipulation; the difference between self- centeredness and others-centeredness. Not one of us has that luxury, certainly not those directly physically injured, and not the family members who are the collateral damage either.
We all have REAL WORK to do.
There is room for EVERY VOICE that will choose to spend time HELPING OTHERS and there is not one moment to spare TEARING DOWN OTHERS.
I will address this issue from a personal perspective, and I will do it only once.
The issue specific issue has to do with a very public clash between two of our mesh community leaders; one on my behalf, as a former member of the Board of Directors for The Mesh Warrior Foundation for the injured, a woman who I am personally and professionally compelled to defend, not only because of her position within the foundation, but because she herself is severely mesh-injured and because she is beyond admirable, upstanding, unwaveringly resilient and of a sturdy, unmatched character. I will not stand silent when there is right to be done or a wrong to be redressed. That is precisely the reason I am now a part of the mesh mess. I will not stay silent for those who have had no voice. I will. not. ever. stay. silent. in the face of evil, come what may, come what HAS.
MY PERSONAL STORY OF HARRASMENT AND BULLYING BY KIM AND LINDA KILPATRICK
THIS IS WHAT I KNOW TO BE TRUE, BECAUSE IT HAPPENED TO ME,
AND IS NOW HAPPENING TO OTHER LEADERS, WHO ARE DECENT PEOPLE, CHOOSING TO STOP AND RENDER AID IN THIS HORRIFIC, MILES-LONG PILE-UP OF INNOCENT, INJURED PEOPLE.
The public battle of words within our small community came with a shot over the bough by Kim “Huntress” Kilpatrick, perplexingly on the day of my own mother’s surgery, and during the tense moments of waiting, during my family’s time together in the waiting room. Kim “Huntress” Kilpatrick decided to post the following on my personal Facebook page. Why my personal page? Well, because we were friends. Until now, I’ve not had a reason to speak unkindly of her and, in fact; I have lifted her up in public and in private conversations as a rare, gifted and creative person. I have visited her home three times; I have invited her to my home; I have brought her gifts; she has given me gifts; we have cooked for one another; we have exchanged tears about life circumstances we share; my husband has mowed the multi-acre property she shares with her mother out of kindness, not compulsion. My husband and I have shared stories and laughter with the Kilpatricks – all of us together – my husband; Kim; her mother, Linda; and me. We have had the same breed of dog. My dog has visited their dog, and they played quite nicely. I learned how to properly brew tea and the delights and depths of this the longstanding English pastime of sharing tea among friends. I enjoyed my time with their family.
But something happened. And it was SHOCKING. I don’t know when or why, but no friend does what Kim did, and I do not call her friend any longer because of it. I do not associate with hatred, and I can think of no other word for what Kim to do, chose to say to me, about me, and to the injured women who would later attempt through their pain and grief to defend me.
WHILE MY FAMILY WAS WAITING IN “MADDIE’S ROOM” at UCLA FOR NEWS ABOUT MY EXTREMELY ILL MOTHER, this was the kind of support I received from my “friend,” Kim “Huntress” Kilpatrick, the fellow daughter of a mesh-injured woman. Both women are public about their struggles with mesh injury via blogs, Facebook pages and posts. I share Kim’s comments in this writing, because the comments were written publicly on my Facebook page, the modern equivalent of our generation’s “public or neighborhood square.” These comments were not private comments, messages, or conversations though Kim and Linda both have
access to my private contact information, including my cell phone, which swings from my neck at all times in a pouch I created in order to remain available at all times to injured women.
No reasonable or sensible person can argue that Kim’s behavior (below and since) is born from a heart that genuinely cares about mesh-injured others and their loved ones. It is behavior that a genuine advocate for injured people would never or even could ever display, and certainly not during her “friend’s” mother’s mesh-removal surgery, a sacred day in our community.
After dedicating our very limited, non-profit foundation resources and two attempts by me personally as executive director, to point Kim towards the publically available and free documents she was demanding from me, the foundation, and the mesh-injured volunteers who felt compelled to defend the foundation from, Kim’s harassing, ill-timed and manner less comments still did not cease. Obviously, the day of my mother’s surgery was not a day I planned to spend teaching others how to retrieve free public information about non-profits in the state we both call home or standing next to a fax machine to fax foundation records with which I do travel to someone who:
1) is not a donor
2) is not a board member
3) is not a government official, and
4) is not in any way a part of or responsible to or for The Mesh Warrior Foundation for the injured and never has been.
The above persons are the people-groups and entities to which non-profits are accountable, via very specific rules and methods, which I research, learn about and follow while inside the AID TENT tending to the many, many wounded innocent human beings.
As for Facebook, the modern day public square, I HAVE JUST ONE RULE FOR CONDUCT ON MY SUPPORT GROUP PAGE, PUBLIC FIGURE PAGE and PERSONAL PAGE – NO ABUSE OF ANY KIND- either verbal, in written form, emotional, psychological or otherwise of any member. I use the standard and scientifically-accepted definition(s) of abuse, as outlined in the DSM-IV TR (Diagnostic and Statistical Manual for Psychological and Mental Disorders), the reference guide for medical professionals in the psychiatric and psychological communities. Kim “Huntress” Kilpatrick broke that one and only rule, and in the process hurt many: me, my family, my mother, and many other mesh-injured women who are personal friends, who I invited to join my personal digital life.
Kim “Huntress” Kilpatrick’s words and actions are entirely unacceptable, especially for someone who is at the very same moment, claiming to protect mesh-injured people with the mistaken belief that despicable language and anger which reacges through the screen and hurts injured women intensely, is somehow akin to rendering aide to ANYONE, let alone the injured.
Many mesh-injured women, volunteers and administrators for the foundation came to my defense without my prompting or asking. In truth, I was asking to be left alone, left to my family. As formal members of the foundation, inside the scope of their duties, several women kindly and directly pointed Kim towards the information she was demanding. Specifically, Mary Teresa Jones responded in her formal capacity as secretary of the foundation, respectfully and kindly to Kim. Mary Teresa handled the situation with the utmost integrity and grace while I was with my family, awaiting the outcome of my mother’s surgery. No one from my foundation was planning to address the issue again, but unfortunately Kim “Huntress” Kilpatrick continued with the same tactics as before, and I later blocked her from my personal page, telling her specifically why she was blocked (for breaking our one rule for respectful behavior). My policy is to share with any person who breaks this simple rule why he/she has been blocked. I do this with the hope that because they know, they may choose to learn to make a different choice in the future, when faced with the same lesson. That is how I would want a friend to treat me. Love me, but correct me, sometimes even firmly, when I am out of line. But always with truth AND love – together.
Our goal and heart with very limited foundation resources is to kindly reflect to any person on any of my forums the reason for the revocation and privilege to be in our private community of injured people and family members. Participants will always be told why they’ve been ousted and it will be because that individual chose to disregard the one rule: NO ABUSE OF ANY KIND is permitted on any of the forums I am associated with or which bear my name or likeness.
Many of you also know that I write and have written for nearly a year on my blog: http://www.themeshwarrior.com.
A recent post was a post to honor all injured mothers for Mother’s Day:
I do not take actions to harm or undermine other AID TENTS, and neither will my foundation, its board members or its associates of any kind. If it becomes apparent that any Mesh Warrior representative is doing harm or undermining others’ AID TENTS and progress, the conversation will be the same: requests to stop (I call that grace and forgiveness) and finally, revocation of an association with us. Pretty simple, pretty cut and dry.
I find it odd that after I blocked Kim “Huntress” Kilpatrick from my forums and personal Facebook page for breaking the rules of civil behavior, within days, her mother Linda Kilpatrick, wrote a lovely blog about Kim- a wonderful love letter and blog entry indeed titled, “Honoring my Daughter.” The timing seemed puzzling to me, since I have known both women as personal friends and know that Linda is keenly aware of her daughter’s Facebook comments, especially when they involve mesh-related issues. So based on history and my personal experience with these women, I surmise Linda must have been aware of her daughter’s disgraceful, public behavior just days before. Linda has always been a proper English woman when speaking directly to me in person, and the woman I have known in the past as friend would not consider that conduct to be suitable, civil or without the need for the offer of a public apology. And ignorance is no defense here, as we have many times read that the Kilpatricks believe that “help” and “aid” starts in your own home FIRST.
Hmmmm…. No matter, not my business. Unfortunately, the lovely blog entry undeniably is not representative of the Kim we witnessed days earlier, spewing untruths, demands and information that she is not owed by our foundation and which is public and freely searchable. Slanderous (by legal definition) comments about me personally on my Facebook pages and others’ pages including slanderous words towards the foundation representatives who addressed her complaints about presenting legal paperwork to her immediately are easily found to this day.
So I got to thinking, in light of my personal knowledge of Kim & Linda’s relationship, Linda’s blog entry just didn’t seem coincidental, as in someone who is completely unaware of her daughter’s abusive behavior towards me, other injured women and their family members. The timing and content of the blog certainly doesn’t have the even the scent of anything like “protection” of or “education” and “aid” to the injured. But Kim’s voice is Kim’s voice and she wrote what she believes on her own blog, this time unable to comment as an uninvited guest on a personal Facebook page. Linda’s blog is Linda’s voice. She should and does write what she believes on her own blog. That is great, and like I said- another voice to help as many injured as possible, because mesh does destroy relationships and families and puts strain on even the closest of bonds between mothers and daughters. Linda has helped many women, so their behavior is doubly confounding to me. I’m surmising that “Honoring My Daughter” was not written or posted without regard for timing or the larger context of our shared community’s communications during that time. I don’t believe for one moment that Linda Kilpatrick is unaware, uneducated, or unintelligent. She is quite the opposite: quite resourceful, intelligent, talented, creative and has helped many women.
Linda’s next blog entry, “Warning Taking Loans,” was a seemingly helpful, friendly and innocuous entry about possible perpetrators, trolling the closed and private forums for information about injured women, those who would have a nefarious plot under the direction of “these companies” who “use women to snare you into a trap and they have no conscience.” I know what unscrupulous loan sharks do, but I am again flustered by the timing and the coupling in the same paragraph of these loan-sharks with information about the sacred, useful and protected free speech of prayer in the private sector and even in the what some people believe is the public-at-large non-profit community. There are protected, non-profit, faith-based communities with 202 forms that operate with their own free speech and their right to pursue happiness, as they believe fit.
The first paragraph, an excerpt, from Linda’s public blog entry is below:
“Warning and double warning. If anyone asks you for personal information on a ruse
of praying for you, prayer vigil or suicide watch prayers, please DO NOT GIVE IT OUT. I
have it on good authority that this is happening. You must know that even if you have
known this person for some time and you believe them to be mesh injured, that these
companies use women to snare you into a trap and they have no conscience.
They can easily infiltrate any organization either knowingly or unknowingly of the person who
runs it. Your future is at stake. I have included more blogs at the bottom of this one so
that you can read and understand what we are up against. Trust NO ONE.”
Again, I find the timing to be confusing and perplexing, since the secretary of my foundation, the honorable woman whom I chose to be the secretary of my foundation, Mrs. Mary Teresa Jones, had just a day earlier in the course of her duties and under my direction and support, posted on my closed foundation’s group Facebook page that we’d like to keep a prayer journal, including surgery dates, for those who want to give their personal information for these purposes. It also allows the foundation to send gifts, flowers, words of encouragement, etc. in the days leading up to and including surgeries for the women who have elected to become part of our small community and who would freely give their information, by their choice and by any means they wish, including the option not to give information at all.
IT IS A TRIED-AND-TRUE TACTIC TO BRING EFFECTIVE ORGANIZATION DOWN FROM THE INSIDE BY CREATING MISTRUST AMONG ITS MEMBERS. THIS IS NOT A NEW TACTIC, BUT IT IS THE TACTIC IN PLAY HERE (as evidenced by the woman’s own words). Take her at her word; I do.
If Mary Teresa or any other injured and dying woman wants to take out a loan, they are big girls; they can think for themselves along with their family members and/or the people THEY decide to trust; they can choose to seek the counsel of wise friends or new online buddies who are further down this road and have become the lifeblood for us all some days.
Mary Teresa Jones’ character is wise, loving and others-centered, her seemingly bottomless giving to me, out of a deep understanding of what’s important in this whisper of life, enough positive adjectives and anecdotes to describe her that I could fill an entire non-fiction book with her kind words and deeds unseen. In fact, I just might do that. Her beautiful name only hints at her character. She never seeks the spotlight, never asks for anything in return, simply gives freely without any strings attached because that is the definition of unconditional love, not tied to your performance on this earth, but tied to your person, a wonderfully-uniquely created person, loved by the God of the Universe. These beliefs are evidenced often by her many loving posts, one recent post in particular is below:
I hope today you each find one solution, one laugh, one tender smile, a moment of rest and time to pray. I have told you before that I help Aaron, most of that is I am her Prayer Warrior, I carry her prayer request for she is out doing the foot soldiers work and I am here connected to an oxygen machine reading my Bible and praying most nights you will find me after 3 a.m here reading and praying for each of you.
In Dallas this week there is a war in a courtroom it will impact all of us. I am posting this song again because it is what we all need to remind ourselves and one another about each day, it is the knowledge that the HURT and the HEALER are very familiar with one another and the healer always wins, this is a two part prayer post so first listen and then http://meshministry.wordpress.com/2013/04/20/i-am-for-sure/””
And another recent post; frankly I could fill pages and pages with her posts that are others- centered, loving and representative of her oceans-deep and long-suffering, authentic faith in the God of the Bible, a faith I share, and a faith that requires an active trust in the person and deity of Jesus Christ, a belief many hundreds of millions across the globe share. (A random factoid as an aside- the Bible has been studied many, many times by many different scientific organizations of differing specialties for congruence, consistency, historical accuracy, parsimony and fidelity to the known history of the time and other non-religious works from the same time period that Christ lived and immediately following the years after his crucifixion. Christ’s longest living, most well-acquainted contemporaries and the apostle Paul with his apprentice Timothy, are among those who preserve the historical accuracy of events Biblical times in their scholarly books of the Bible. The ONLY written work studied with even a shred of the same vigor is Homer’s Odyssey, and yet, it scores on several statistical analyses much lower than the Bible for historical accuracy, corroboration from other non-religious contemporaries, etc. Paul and Timothy carried the Gospel across the Middle East and parts of what is now Asia without this knowledge, but with this FAITH that was unshakeable. There are many comparison charts available online that are more scientific and statistical in nature than required for this article.*
Here is another of recent Mary Teresa’s posts:
“There is such important work we do here one for another. If the name of pain were “Polio” we would be pioneers fighting for a cure for President Roosevelt in days gone by. Our name for pain is MESH, we are pioneers, we are Warriors who found one another by the grace of God. Some folks backup or back away when I mention God. I decided before going to bed tonight to write this post because we are women who are salt and light. We take our collective pain and we teach one another, we pray for one another and we are making changes happen. I have been very ill. My grandson, who each of you know as my heart was shaken by this last episode of my health complications. He told me he was nervous when I got sick. Wow, hit me head on, I just held him. I told him, I would live to see him have his own children that what was happening to me was something God would handle and that he did not have to be frighten. He teared up and laid his head on me where his tears ran down my neck. He said that is what I am I am frighten not nervous. So, as each of us have our own little people to fight for my M in Warrior is Michael, I will not let Mesh kill his Mamaw. Whatever you have to get through today get through it. Whatever is too hard today, overcome it because I am willing to bet we all have little people watching us and they need us to win this battle. God’s goodness shine on each of you this week. Love T.”
It is not any variety of appropriate or noble for Linda Kilpatrick to write a blog entry warning those who ask for Christian prayer not to accept it. It would be just as offensive and unhelpful to post a similar warning towards those who would offer Muslim, Mormon, Catholic, Hindi or Jewish prayers with, in Linda’s words, a “Warning and Double Warning” blog entry; just as offensive to warn those who claim no faith in a higher being at all; just as offensive for those who ask for “healing thoughts” or “healing energy;” just as offensive to counsel thousands that those thoughts and energy not be given, asked for or received by hurting human beings, because of a self-named “ruse.” Again, I don’t know the “ruse” Linda refers too, but maybe the “good authority” she mentions can tell us? Linda’s counseling in this blog is actually nonsensical and completely antithetical to the mission of “protecting” injured women from what Linda refers to as “Loan Sharks and Snake Oil.” Again if the timing is coincidental, my apologies, but I do not believe it for one second. The comments made by Linda are the very definition of slander, for they are untrue, which is the only quality that needs to be proved in a court of law, and easily provable in any court of law with proper evidence, which is also very easy to amass.
In fact it is quite rational – even more so – to believe that Linda Kilpatrick’s action of counseling potentially thousands of women NOT to give information out if requested in the name of prayer and suicide prevention, in closed groups of their election, to be very dangerous and extremely irresponsible, given that we know of confirmed suicides, human beings who took their own lives because we could not get to them fast enough to comfort them and provide resources quickly, suicides committed as a result of mesh injury and the relentless torment of mesh to the injured and the surrounding family members who feel confused and helpless without intervention from someone who can validate them and all their suffering.
Of course I can’t know for sure that Linda’s Kilpatrick’s blog entry, “Warning Taking Loans,”, was directed at Mary Teresa’s genuine note of concern and call for prayer requests for those in our online community or in my foundation’s closed group, but it matters not. The ethical issue is the same. The appearance of coincidental timing is the same. I don’t have any idea who the mysterious “good authority” she refers to is, but regardless, the only definitive good authority regarding my intentions, Mary Teresa’s intentions or the intentions of my legal, registered, not- for-profit foundation, is known only to those of us involved.
In an effort to give insight into my passion for this cause, I will explain my guiding light, what I get from this fight.
I will not spend what precious little time I have on this earth, (for there is no guarantee that tomorrow will exist for any of us) defending my very clear publicly and privately-stated intentions, also established by my repeated public actions and those of my associates; actions which display concern, love, kindness, authenticity and are born of, yes, our shared faith in the God of the Bible. That is not to say that every participant in my foundation believes as I do. However, with this matter, and in my opinion, the most logical action to take under Linda’s advisement is to accept the well-known argument presented by Blaise Pascal, the 17th century French mathematician, physicist, inventor, writer and philosopher. His paradigm is now referred to colloquially as “Pascal’s Wager.” For the brainiacs or insomniacs among you, an excerpt from this very famous philosophy is below:
“The conclusion that Pascal’s Wager draws from this is that belief in the Christian God is the rational course of action, even if there is no evidence that he exists. If the Christian God does not exist then it is of little importance whether we believe or disbelieve in him. If the Christian God does exist then it is of great importance that we do believe in him. In order to cover ourselves in all circumstances, therefore, we ought to believe that the Christian God exists. A formal statement of this argument might be constructed as follows:
(1) It is possible that the Christian God exists and it is possible that the Christian God does not exist.
(2) If one believes in the Christian God then if he exists then one receives an infinitely great reward and if he does not exist then one loses little or nothing.
(3) If one does not believe in the Christian God then if he exists then one receives an infinitely great punishment and if he does not exist then one gains little or nothing.
(4) It is better to either receive an infinitely great reward or lose little or nothing than it is to either receive an infinitely great punishment or gain little or nothing.
(5) It is better to believe in the Christian God than it is not to believe in the Christian God.
(6) If one course of action is better than another then it is rational to follow that course of action and irrational to follow the other.
(7) It is rational to believe in the Christian God and irrational not to believe in the Christian God.”
The Mesh Warrior Foundation has the sturdy strand of the God of the Bible and the love of Christ running through it because those are my beliefs, and it is my voice and my foundation. It makes sense that I would ask others who share my faith to join my organization. Conversely, I have persons of other faiths and persons who do not claim a faith who are involved in the foundation. Civil discourse among those of different beliefs is invigorating and as Einstein said, “Either proves you were right all along or that you were wrong and needed to learn something new.” A Biblical reference to this very sentiment can be found in the Romans, Chapter 12, Verse 2 (Romans 12:2) which says, “Be transformed by the renewing of your MIND (my emphasis added), then you will be able to test God will, His good pleasing and perfect will.” He’s inviting us to ask questions, to passionately argue with Him, to find out for ourselves if he is Truth. That takes courage and is not easy.
Though active belief in the God of the Bible is the personal underpinning for my actions; kindness, hope, love and charity need not belong to any one faith, leader, figurehead or person. COLLABORATION with others on these shared motivations need to be our common ground, not discredited because of different belief systems. The participants in our foundation do not seek to undermine one another or tear one another down, especially subversively. I advocate for using names, where appropriate, legal and within the Rules of Conduct for Facebook and for civilized societal discourse- with the purpose of progress, not agreement. We at the foundation work TOGETHER for the cause of stopping what many who claim no religion at all still call EVIL- a Biblical reference- that would not exist even as a word without this historically-accurate book of a impervious faith. I will defend my faith and I will share my faith, for if Christ and the God who created him and all of us is the Truth, and I believe it is, there is no scrutiny that can affect it. I will defend and share in the same manner I conduct myself otherwise, with kindness, love, authenticity and respect for others. I do not shove my faith down any one’s throat, because that is not the example set forth to me by my faith, by Jesus himself. I am a respectful woman, and my God is a respectful gentleman. If you refuse his love and pursuit of you for long enough, he will respect your wishes, and leave you to your desires. I will do the same as I follow him.
The Mesh Warrior Foundation for the injured’s closed group, will remain full of those who pray and ask if they may pray for others. We will continue to exchange personal information freely as we see fit with the goal of creating a community in the world of the REAL and not only of the DIGITAL- real families in real homes, sharing real stories of hurt and of hope. If that makes you personally uncomfortable, do not give your information out or to our foundation; or join a group that does not share real life and real personal information. No one from my community is requiring your personal information to join us or chaining you to the prayers expressed to a God you don’t believe in. The right to pursue your own means to happiness, my friends, is what free speech affords us all. Free speech is your right and mine, and government does not give it. It is inherent and self evident because you exist (“We hold these truths to be self evident”). Now, how you believe you came to exist is your business with God.
We are all adults who can weigh the rewards and consequences of our decisions. Make your choices and move on, knowing you’ve done so with the best information you have at the time.
If you are uncomfortable with the faith-based nature of my support group; join another. I’m not offended if you don’t seek help through my foundation; just seek help from someone, somewhere. I pray that you land in a “home group,” and there find the validation you so deserve, the love you so deserve, and that others within your group build you and others up for the purpose of good deeds and good days, in the midst of this horrible and harsh reality called “The Lost Generation; The Mesh Generation; The Generation Without a Voice; The Silenced.”
History teaches us that evil prevails when good men (and women) do nothing. I want healing for my family and for other mesh-injured people and their families too, for I believe this heinous, egregious and premeditated harm is a significant inter-generational adversary, threatening to wipe out an entire generation of families, like any of the World Wars, a threat so real, so far-reaching and so destructive that it could and might wipe out my family of origin and yours too. There is no time to spare. NONE.
The horrible reality reads like a book of science fiction – a horror of the imagination. After the Battle of the Blogs, Linda Kilpatrick, shared private emails between herself and my foundation’s secretary, Mary Teresa Jones, and her doctor, Dr. Raz, to prove to me (in her own words) that “Someone sent me something that Teresa Jones wrote that she said Dr. Raz refused to help her. It was a lie.”
I personally addressed Linda, responding to her private message and added Mary Teresa to the message asking Linda to please speak directly with Teresa about her accusations or bring her accusations into the “public square” instead of going through me in private, for I have nothing to do with a communication that is more than a year-old and includes private medical information between Linda Kilpatrick and Mary Teresa Jones or between Mary Teresa’s doctor and Mary Teresa herself. Linda informed me she was concerned about “protecting me” and “my reputation” from my own foundation’s secretary; the woman that I chose because of her outstanding character, as evidenced in word and deed time and time again. I did not ask Linda to post Mary Teresa’s private medical records, for I believe that could be a significant violation of many facets of the law, and most importantly of the unspoken, unwritten social contract we all have agreed to participate in when dwelling within the public, a shared society of human respect, decorum freely and often given, and an expected decency in dealings with others. I simply asked her to bring her accusations into the public square and into the LIGHT, which clearly could have been done without exposing a patient’s private medical records to the general public!
Hmmm………. Linda’s daughter, Kim’s, behavior on the day of my mother’s surgery just didn’t feel like protection to me or protection of my reputation. And come to think of it, neither did either of those two well-timed blog entries or entries-of-chance-timing Linda wrote on her public blog, also posted in part on Facebook. So for good measure, I turned to Facebook, a well- established third party for help with my dilemma.
It turns out that the global social media company, arguably the world’s authority on the practice of civil social conduct, agreed with me.
Facebook provides free services in addition to the free account they extend to me, so they allow me or any user to report threads and comments that are abusive or harassing in nature. I reported these threads, begun by Linda Kilpatrick and Kim “Huntress” Kilpatrick. Facebook reviewed the threads. I heard from the company within hours, and they cited the threads referred to in this writing as express violations of Facebook’s Code of Conduct under the behemoth company’s Harassment and Bullying section of the code. This is a Code of Conduct to which each of Facebook’s more than One Billion users accept to follow when he/she creates an account. I discovered this reporting option when the Kilpatricks would not stop harassing me and several of my friends after both women had been asked kindly yet firmly to stop by me personally and several others. I’ve never had to report any one that I know, so I wasn’t sure about protocol. Now I know; good information to be equipped with to actually protect yourself, and start in your own home to do so.
Whether you choose to look to The God of the Bible; history; the social contract we all agree to live under when we engage with one another; the medical community’s DSM-IV TR, George Washington’s 110 Rules for Civility (written when he was all of 8-years-old; or Facebook as your authority on the matter of your treatment of others, you will find agreement at least on the matters of Abuse/Harassment/Bullying.
If the above entities can all come to the same conclusion about something, obviously still in the realm of the subjective for some, can’t we all come to the same conclusions about the definitions of kindness, grace, and the wake left by the footprints of self interest or the paths led by the feet of named soldiers and warriors for the cause of GOOD?
The Mesh Warrior Foundation for the injured is a non-profit foundation with the express Mission and Vision laid out in the foundation’s Texas Form 202 and available in presentation form as a file in the foundation’s adjunct and closed Facebook group comprised of willing participants, leaders, volunteers and board members of the highest integrity.
The concepts of Bullying, Harassment and Abuse are nowhere to be found in our Mission or Vision statements. These documents were accessible to Linda and Kim both, before they bullied and harassed our Facebook participants. I want to publically declare my formal separation completely from the Kilpatricks and any person who chooses to associate with them, either in private and public, as I do not want to be associated with any kind of Bullying, Harassment or Abuse of any injured woman or any non-injured person, for that matter.
I must focus on my foundation’s Mission and Vision. I wish them both well, good health and the right to pursue their own happiness without the need to hurt innocent people in the process.
Actions always speak louder than words. Even for those of us who are not physically injured but are family members using our good health for good deeds,
DESPERATELY trying to love our maimed MATRIARCHS and our PATRIARCHS incapacitated by pain;
with our good health, DESPERATELY pursuing justice for the injured;
with our good health, DESPERATELY screaming at the top of our healthy lungs to anyone who will listen to try to get this mesh off the market;
with our good health, DESPERATELY trying to keep one more woman or man from being harmed,
with our good health to DESPERATELY plead with God night and day to help each name we can conjure at night through our cries for you all and in our own brokenness and deep despair over what has become of the morals of this nation and its companies.
If you have a problem with that practice; you’ve likely got much larger problems to deal with in your life, like a healthy consideration of Pascal’s Wager – a gift of history to those of us who are stubborn and don’t want to release control, even to the unchanging God of the Universe, at whom we often point our anger and confusion. If you are a leader, you are called to a higher purpose.
DO NOT take your insecurities, frustrations, unanswered questions and existential dilemmas out on the community at large, the injured, or the first responders. Look inward or get a therapist, or a best friend more mature than you. Figure out why you are so angry at people you don’t even know. Speak kind words, be sweet, lift others up – it’s NOT THAT HARD.
If you want to have hateful, negative outbursts on Facebook or on your blogs, I suggest a healthier alternative space in the digital realm:
Take it out on these companies. Tell them of the misery their decisions have caused you and the ones you love and how you feel about the notion of even having to consider a loan or ask for prayers of healing because you are deathly ill, already proved in court to be human catastrophes of their why I deem as their greed and ill-fated creations using harmful synthetic PLASTIC.
Johnson & Johnson: https://www.facebook.com/jnj
C.R. Bard: https://www.facebook.com/crbard
Cook Medical: https://www.facebook.com/CookMedicalInc Coloplast: https://www.facebook.com/ColoplastUS
Boston Scientific: https://www.facebook.com/BostonScientific Caldera Medical: https://www.facebook.com/CalderaMedicalOfficial
Our community as a whole should function on a higher ground, all of us working together as individual voices in a choir, not using the kind of language and tactics that our corporate nemeses could and would and maybe even DO. We are better than that. We CHOSE with our will and our voices, different as they may be, to FIGHT THE GOOD FIGHT.
And because that is MY CHOICE, this writing is the one and only one and only that I will ever publish to address this particular issue or this type of behavior within our community. IT IS SHAMEFUL, AND THERE ARE OTHERS TO HELP.
I HAVE WORK TO DO.
If you want to be a part of TMWF’s support community, find us on Facebook by asking me or another member to add you, or join us privately by following my writings and updates on the blog at http://www.themeshwarrior.com where you will likely be asked if you’d like prayer on bad days or when the date of your surgery is, so in the days leading up to that giant and terrifying step, we may send flowers and comforting sentiments from our small but growing “Sisterhood of Chance.”
I will be stepping back from the Support Forums, though I will have trusted friends who will keep me posted and I will pop in, probably as “The Inspirational Insomniac,” with something silly to lift your spirits. I am pulling back to focus on writing and speaking, where I hope to have privilege of educating the most vulnerable populations.
I love my personal conversations with you all, and I am filled up to the brim by remaining accessible personally to every woman that wants to call me, so if you get my voicemail, please text me, and I beg your forgiveness and your patience if I am unable to get back to you immediately. You are not forgotten. Your names swirl around in my head each night, starting with my own mother’s name, and I think of each of you with fondness, and because of my belief in the Creator of everything good in this world, I think of you as your completely healed and glorified self, one day reunited with your Maker and with everyone you have loved or with whom your relationship has been broken into pieces by this horror perpetrated upon you- NOT your fault. Sometimes all I get out a night is a list of names, each interspersed with the name of Jesus, but I believe he hears my cries for you and for my own mother and family.
If He doesn’t exist and you think I’m praying to “The Great Spaghetti Monster in the Sky,” then the only thing I have done is think fondly of you often, and that’s a happy and fulfilled life to me- my free way to pursue happiness. God bless you all, each one of you richly.
Aaron Leigh Johnson-Horton
The Mesh Warrior/Executive Director at The Mesh Warrior Foundation for the injured
For questions about this writing, you may call me directly on my cell phone – 214.415.0415 – or email me here: themeshwarrior[at]gmail[dot]com.
My primary reason for making this (what will become) a short series of films, is to raise awareness that we should be much more concerned about our mothers than Mother Earth. Mother Earth will survive on her own. It is we who will perish if we don’t rise up against the powers that be and speak for what is right and true, even though we may suffer many consequences for doing so.
The secondary reason is to give families a way to communicate, especially strained communications or severed relationships between MOTHERS AND DAUGHTERS. I received this quote today from one injured mother. This is all I will ever need to keep on going, knowing I’m heading in the right direction, and that my work is making a difference in people’s lives.
“Even though we were not used in the video I wanted to say thank you it was a great life lesson for my daughters. My daughter wanted to know why it was so important to me and it got us talking about standing up for what you believe in and to fight for injustice! It took us about 20 takes but we laughed, cried and brought us closer together! Thanks again!” ~ Anonymous
Heather Zuk is a breath of fresh air. She has a light and airy countenance about her that makes you want to float into her realm. She is creative, witty, hard working, heart warming, and all of 20 years old. Over the six or so months that I have watched her online, followed her posts and giggled at her shenanigans, one word comes to mind immediately: BEAUTY.
She surrounds herself with it. She embodies it. She has a lovely outlook on life, not an ounce of bitterness in her tone or, I imagine, even lurking around in the roots of her heart. She never has unkindness at the tip of tongue; never a shaming remark; never a desire to tear down. Quite the contrary, she is the consummate builder: she builds flocks of chicken; libraries of photos; books filled with poetry. She’s a creative mind, and it’s on that gift that she chooses to focus. She’s kind and a brilliant and creative steward of all things lovely in the world. I see her in pictures of meadow-filled flowers; in pictures with family, smiles broad about their faces, clearly enjoying the company of one another; in pictures adoring the relationships she’s built with her brood of chickens.
When I ask her what the mesh has taken from her, she seems not to understand the question. Innocence maybe, but her youth has not afforded her the hindsight to gaze upon the bodily sacrifice of bearing and rearing children. I ask again. This time, the answer comes more naturally, “Well I used to love to help out with the farm more, you know, milking the cows and stuff, and I can’t do that anymore. I miss helping with the work on the farm that I used to do. But I can still do a lot,” she concludes. Our vignettes of conversation never end on sour notes, or lingering notes of fear, or uncertainty. That’s just not who Heather is.
She is a 20-yr-old who knows what she wants and is content with what she has, and what she’s able to do, despite what’s been taken from her by the hernia mesh that was first implanted in her as a 17-yr-old.
When I interview her, it’s more like a girl chat. It’s fun and fresh and spirited and upbeat. It feels like mesh is someone else’s problem. We talk about maybe getting to meet someday, about her photography and, dare I say, quite eccentric interest in poultry. New York feels closer than ever during our discussion. Heather is multi-dimensional, and she’s not afraid to show it. I love that about her. Oh ya, and she works at a body shop. “Just in the front office,” she reminds me, but inside I think, “How cool! I just love this kid.”
When we do enter the mesh realm, she explains to me that when she was 17, she was mounting the stairs to her bedroom, and on the way, she sneezed. A few short minutes passed, and she began to feel weak, nauseous, fatigued and just “very ill.” Neither she nor her parents knew why. After three or four hours of enduring the worsening symptoms; they subsided almost as abruptly, so she and her family thought it simply to be a strange, single incident . . . until it happened again a few months later.
This time, they sought immediate medical attention and discovered that Heather had, not one, but two hernias – one femoral and one inguinal.
Heather was referred to a specialist, and most of you reading know, “the rest of the story,” as the late, great radio personality, Paul Harvey, spoke in signing off at the end of his radio program. Unfortunately, like many of you, Heather can’t end her story here. After seeing a specialist, she and her family decided to follow doctors’ orders and have mesh implanted at both hernia sites. She has never been the same. In fact a third hernia (femoral) showed up about a month after her first mesh implant surgery. She has had another hernia since, hernia revision surgery, and attempts at removing some of the mesh, and all this, by the ripe-old-age of 20.
Doctors say the mesh is likely to interfere with her ability to have children down the road, but she doesn’t live in that reality. She tells me, “I guess I’ll deal with that down the road, when it’s time.” I have an online friendship with her, and I delight in the person she is. I watch her post funny videos; take silly pictures with her sister; enjoy her family; playfully, skillfully and artfully enjoy her hobbies. We make a pact on the phone. She will help me learn to raise chickens, and she is excited to share with me all she knows about them, when I tell her I’ll be taking on a few yard birds soon. We giggle about my neighbors “free range chickens,” and their birdie little antics. We laugh; make pinky swear; and both find a great deal of humor in my chicken-raising neighbor’s name: Mr. Fetherston. I delight in her joy. Not everyone laughs at that, and I feel a kindred soul. Mesh again recedes from the forefront of our conversation. I ask why she likes chickens so much, and she says, “I don’t know; I just always have.” I sense that she enjoys them more so now; because, with her injury, she can still participate fully in the activities of caring for chickens, not having to give up facets of their care, like she’s had to with her other bigger barnyard friends, cows and the like.
Her family – father, mother, brother and two sisters – are supportive, and she knows that is a gift. She is wise beyond her years in some ways, but also green, bright and new. I sense she has no vocabulary for what many other mesh-injured women have lost, because she is simply at the point in life where many of us long to be again: she hasn’t gained quite as much to lose as her elder counterparts. That doesn’t lessen her suffering, in my opinion, for pain and suffering is always relative. In a way, I grieve that she may never experience what has been lost by so many of you; deep relationships with adult children and spouses, careers and dignity. It certainly, again, begs the question,
“Is it really better to have loved and to have lost, than never to have loved at all?”
It’s a question that floats in the Mysterious; hangs in the balance, some days tipping towards yes, some days tipping towards no. She confesses that sometimes when she ponders the future too much, anxiety begins to take hold – the terrifying type – full blown panic attacks. Having experienced such myself, Heather and I agree; there is no better word to describe them than, TERRIFYING. On one recent occasion, she began to feel the pangs of anxiety growing stronger. She tried to watch a movie with her sister, but nothing seemed to help.
“I was trying not to burst out crying for no reason [during the movie]. When it finished my sister went to bed, and I stood in the bathroom trying to figure out why I was crying, and I started blaming the mesh. That led to over analyzing all the bad things the mesh has done and possibly could still do, and before I knew it, my pulse had escalated and I started hyperventilating. All of that caused me to panic more, because I couldn’t make it stop; so I sat there sobbing; almost passing out; hyperventilating uncontrollably for about 20-30 minutes before my pulse returned to normal. When it finally ended, I was so completely exhausted I barely made it to my bed before falling asleep.”
In the same exchange she says, “I am in constant pain, and I struggle with depression,” but she is quick to add, “but I don’t focus on that.” In fact, her writing about her experience is quite eloquent. Read more here: http://herpassionforpoultry.wordpress.com/2014/01/25/two-definitions/ from her first-person point of view.
One thing is clear as crystal to me about Heather. She is full of love; full of joy; full of compassion; happiness; empathy; adventure; spirit; and Hope. I believe that whatever or whomever comes her way; she will absorb the Bad, and turn back out into the world the Good. She has a Spirit about her that makes one know her story ends happily ever after, however it actually ends.
Enjoy her talent as a photographer in the gallery I’ve posted here, and visit her blog http://herpassionforpoultry.wordpress.com to get to know more about this lovely, quirky, genuine and grateful girl with the giant joy that makes up some of her beauty, and a woman I have come to call friend.
Thank you, Heather, for sharing yourself with us. We are all better for knowing you.
Originally posted on The Chart:
Here’s a roundup of five medical studies published this week that might give you new insights into your health, mind and body. Remember, correlation is not causation – so if a study finds a connection between two things, it doesn’t mean that one causes the other.
You are the (Facebook) company you keep
It may be time to think twice before accepting that friend request on Facebook. A new study by scientists at Cornell University, the University of California, San Francisco (UCSF) and Facebook suggests that emotions can be spread via Facebook and other social networks.
Yes, you read that right: Your Facebook posts are contagious. The scientists looked at 3 million Facebook posts from a group of 155,000 randomly selected users.
View original 601 more words
Hi Angels & Warriors;
Yesterday, I was busy writing away in my writer’s uniform (also known as pajamas) when my neighbor knocked on the door. I suppose it was around 3 p.m. His name is John, and he is the sweetest neighbor. We love him to bits. He brings us garden goodies often. This week, he already brought over new potatoes, butternut squash and a ghost pepper for Lee! The ghost pepper is said to be the hottest pepper in the world, and Lee loves to act a peacock, trying to be all manly and display his feathers for me to see how easily he can “take the heat” so to speak.
Well, this time John’s visit was not to bring farm-fresh goodies. He had his beautiful granddaughter on top of his shoulders, and when I opened my door (he’s accustomed to seeing me in PJs); he said as calmly as if he were saying,”I picked up your paper today,” but instead said “Did you know there’s a brood of six peacocks nested on your roof under your pecan tree?” Of course I said, “No John, I did not, and I certainly didn’t expect to hear you say that!” His granddaughter was gleefully egging me on -”Come outside Mrs. Aaron; come and see!”
Sure enough; out we went, and there we see six beautiful peacocks resting on my roof as if it were the safest and most comfortable place to be. “Where in the world did these peacocks come from?” I thought. I live 5.5 miles from the tallest building in downtown Dallas, no where near a zoo or any exotic animal facility or eccentric backyard breeder.” We marveled for an hour or more at the beautiful birds. We fed them birdseed and watched them walk back and forth across the roof. It was a delightful neighborly event. Above are the pictures I took.
Oh, and let me mention one more small detail. John’s wife came over to the house to see what all the ruckus was about, and having recently read our city magazine The Lakewood Advocate, which featured a story about The Mesh Warrior Foundation for the injured for this month’s (June 2014) issue, she asked me a few questions. She is having continence issues, and she’s been seeing a doctor and has been terrified to return to the doctor because surgery has been suggested to her. She asked a few more questions, which I was grateful to answer, and DO YOU KNOW WHAT HAPPENED NEXT?
I said, “Who is your urogynecologist?” Her answer laid me out flat on the grass in my pajamas with peacocks on my roof because it was more coincidental, serendipitous or divinely providential than the rest of the goings on, which were obviously quite odd. Her doctor is the surgeon who implanted mesh in my mother, basically leading to this Mesh Hell that my family STILL lives in to this day. Oh. My. Gosh. There are peacocks on my roof. God got me out of my house in my PJs the middle of the day with a brood of six peacocks, so that my family’s fate did not become my neighbor’s fate.
Divine Providence: That’s a neat trick, God. #StillInAweGod #GodIsPlayful
My friend Teresa found this wonderful blog on the spiritual significance of peacocks. Wow. Just WOW.
What do you think? Happy accident or Divine Providence? Follow the link to read more. . . . Love, Aaron
Full Story Here:
I woke up this morning to a familiar, yet distant, feeling – like a smell that yanks you back into a past memory which is so real, but still forming and too cryptic to grasp fully. When this kind of feeling overtakes me, I cannot move on with my day until I take hold of the memory fully…
“I FEEL PEACE.”
For the first time in as long as I can remember, along this road that is paved with plastic mesh, and feels at times, like it leads straight to hell.
I believe it’s for a combination of reasons which I’ll share at a later date. At least for now, I want to share someone else’s writing. I didn’t write it, but I could have: verbatim. This writing is by a man, a man I respect immensely. Many dislike his teachings, his politics, his tactics, the very sound of his voice, but he is a man of his word, and I respect him for acting courageously, continuously, over and over again; for following his inner being, knit by his Creator. I think this is why I feel at peace. I am courageously following my inner being, led by The inner voice of my Creator. It is difficult, costly, a lonely place to be at times, but it is the only place of rest for me here on this planet, come what may and what has: criticism, attacks on my character, lost friends, lost family members, lost precious time, just loss; however, it is a peaceful lonely, for I know that lonely is not the same as alone. I am not alone; never alone.
Read, enjoy, comment. Be at PEACE, in your soul, with who you are and who you were created to be and what you were created to do here on this earth. Like a pruning gardener, God will slowly deadhead your life. He will remove the parts of you and people around you that just will never bloom, sadly.
Be inspired by someone or something, and know to your heart of hearts that tearing down others will never make you better, will never make you whole, will never make you honorable, will never give you rest or peace; only focusing on your job here and who you are can do those things. Others are right to criticize us if we try to be someone we are not, but it is they who are in the wrong, when they criticize us for being exactly who we are, even when/if/though we are DIFFERENT from who they are, and individually, our jobs are different on this earth than the jobs of others. Living in that knowledge, that space, my friends, is to dwell in love and “tolerance,” this word we revere so. Just be you. And allow others to be who they are. For those who choose to tear down instead of build up, I pray for you; because you will not know Your Peace, until you begin to build up others, and in doing so, build yourself up as well, showing yourself to be honorable and “tolerant” of others’ Truth.
God bless you all. Happy Father’s Day.
I am in the final phase of a massive transformation
Friday, Jun 13, 2014 at 12:19 AM CDT
I am once again on a plane chasing the sun.
I am listening to Patty Griffin’s ‘Up to the Mountain’ as I stare out the window admiring Gods handiwork as the sun slips slowly under the curvature of our earthy home.
Sometimes when we are flying late at night, most of my team is asleep and I have time to sit quietly and think.
We don’t have enough time anymore just to ponder.
My grandfather used to have one of those old push mowers (remember the old wooden handle and the round blades between the wheels?). When I was really small I can remember seeing him push it, stop and take his hankie out and mop his brow.
What was he thinking? I now ponder.
Later he got himself a riding mower. By then I was old enough to cut the lawn but he never would let me. I always thought he insisted on doing it was because by then grandma had taken the keys of the truck from him (it involved a plate glass window and the front of a Denny’s but that is a different story :) ).
But, now, I’m convinced he wanted time to think. Time alone, quiet time to ponder.
As I worked the farm on my tractor this past summer, cutting the alfalfa I hypothesized: farmers of the past must have been either 1) the most well balanced people or 2) raging alcoholics.
So much time and so much silence. You had no place to run from your thoughts.
How many of us can really spend time with ourselves and our thoughts? How many of us need music, talk radio or books on tape? Anything except silence and our own internal voice.
A voice that questions, condemns or emboldens with truth.
The sun sinks a little lower and the sky grows from deep orange to dark blue at the horizon and space grows black above.
I turn the music off.
I am in the final phase, I think, of a massive transformation. One that will take me to rough terrain, uncharted landscape and lonely woods. This may end up being the biggest and most important challenge of my life.
Lead by that still small voice always and simply, questioning, condemning and empowering with love and truth. I have challenged myself to let go of my anger and hurt and instead see others pain, need, confusion and hurt.
I want to be a better man. A much better man.
It is hard.
Sometimes it’s too hard, because I hurt or I am tired or honestly, sometimes I just want to be angry.
“I have a right!” I think to myself.
The country I love is washing ashore in bits and pieces. Dashed intentionally on the rocks by fools and knaves. The flames of hate rages. Fires started by those who just want power or money. Only to have the flames fanned by those of us who were sometimes duped, sometimes trusting “our side” and honestly, sometimes too tired, lazy or unwilling to challenge what we WANT to believe because it allows us to escape that condemning voice about the role we played.
I want to be a better man. A better husband, father and friend.
Life moves so fast. So many fires. I try to put one out and three more appear.
“How Lord? Why Lord?” I pray/wrestle. “I want to do what you want me to do, but I am not smart enough to figure out how to get from here to there.”
“Tell me! What do you want me to do! I will do it, but just tell me!”
Deep down, if I am quiet enough, I know He doesn’t work that way.
He doesn’t want the power.
He wants to empower us.
“Figure it out yourself” the voice whispers. “You have all you need. You always have and if you just trust Me completely and take the leap you will see.”
My mind cannot grasp the eternal.
My eyes cannot see what He sees.
He is right.
For all the worry and panic, trouble and white-knuckle events of my life, I have always had everything I really needed and everything worked out in the end.
It will again.
For all of us.
The stars begin to shine brighter, the sound of the air blowing through the cabin. The quiet conversations from the back of the plane and the empowering voice whispers again.
“It is the simple things that makes a man great. The way he treats his wife, his children and those who CANNOT help him advance in his career or goals. It is the simple repeated act of choosing love over anger, peace instead of hate, forgiveness over revenge and courage over comfort.”
“Most of all”, He whispers, “A great man mows his lawn and is eager for the challenge of silence.”
I turn off the light, smile at the thought of my grandpa. I gaze out my window. I am no longer able to make out the curve of the earth.
I close my eyes comfortable with the knowledge that what is coming, just over the horizon, is a new day and everything we need is already being warmed by tomorrow’s sun.
One of my favorite blessings about this, our mesh-injured community that we are slowly building, is that EVERYONE gets validation, not from doctors maybe, but from one another. Mesh Angels and Warriors, immediate and extended family; we all get to experience that sense of relief when we discover we are not alone. On that note, please find validation and healing in today’s writing from guest blogger, Tanya Barber, a Mesh Angel’s daughter.
Thank you, Tanya for sharing your story. ~ God Bless you all/TMW
The Unbearable Likeness of Being a Mesh Angel’s Daughter
~ by Tanya Barber
When you grow up in the Midwest, summer evenings mean lightning bugs (my favorite) and June bugs (Holy terrors). It was always too humid and hot to do anything other than sit inside and play or read in the air conditioning during the day, so my mom would take me and my younger brother and sister for walks nearly every evening. My mom is 5’9” with long legs, and we would have to run to keep up with her. I don’t remember her sitting still unless she was reading the newspaper or reading library books to us.
Sometimes it’s hard to remember now that my mom is that same woman. I honestly don’t know if my brother and sister remember much about Mom when she was more active. When my brother was about 3 years old, he took off running in a parking lot. My mom ran after him and slipped on the gravel. She had to have stitches on her nose – scraped up her hands and knees pretty badly too. That’s how my mom used to be.
“My mother RAN.”
My mother doesn’t run anymore. She barely walks. Until recently, she couldn’t even sit for very long. Thankfully she has found some relief with medication and physical therapy. Her days are still full of pain, but the medication brings it to a tolerable level. She is never completely pain free.
My mother is a grandmother. She longs to lift her grandkids up into her arms and give them hugs and kisses. She wants to wrestle with them and play tickles and make their lunches. She is the kind of adult who never speaks down to kids. She talks to them like they are grown, and they love her for it. My mom considers conversations with children to be equal to great debates on literature and history.
She can barely hold the little ones on her lap now. It causes her too much pain. My brother lives closest to my parents. He has a boy, James. James and my mom are very close. Since he was a baby, he has sat with Mom on her special chair in the living room. They have watched TV shows together or read stories or looked at pictures of James’ cousins Zeke and Evie (my sister’s kids).
My mother, James’ grandmother, struggles to have him over at the house unless Grandpa is there too. She can’t get James a drink of water or a snack, because just walking across the room is an insurmountable task at times. Keeping up with him while playing outside is out of the question.
James and his grandma love each other very much. James’ grandma loves him so much that she doesn’t let him see when she is in agony. Once or twice, a tear has escaped, and James has been very concerned for her. She tries to be careful and tries not to worry him.
“What’s the matter, Grandma?” He comes over and gives her a hug and kiss. That’s what you do when someone you love is hurting.
“Grandma’s tummy hurts. It’s okay,” she tells him.
Since the first of this year, my mother has been to the emergency room more than twenty times, simply because there was just too much pain – intractable pain in medical terms – pain that cannot be eased. Yes, she has seen doctors. Yes, they have given her pain medication. Yes, she has seen specialists. She has had MRIs, CT Scans, Sonograms, Echocardiograms, X-rays, etc. The pain levels have often been too high for her to bear.
“I don’t see any acute cause for your pain,” the doctors say.
My father has to sit outside the triage room at the ER. It’s hospital procedure – separate the spouse in case there is any abuse the patient wants to disclose. My dad doesn’t get much sleep these days. His wife’s pain wakes them both in the night. She needs help. Dad is the one there to help her. He is her home health care provider, the breadwinner, the housekeeper, maintenance man, etc. They don’t really remember what it means to simply be husband and wife anymore. They just try to get through one day at a time. I worry about my dad as much as my mom.
I moved away from my hometown three and a half years ago. Mom had been gradually experiencing more and more pain and limited mobility for a few years before I left, but it wasn’t debilitating at that point. I visited my parents a couple times a year, each time noticing mom’s worsened state, but still not fully realizing what was happening.
Last February I bought a plane ticket home again, and in the weeks leading up to my trip, I started talking to Mom about the plans for what we would do. She said things like, “Remember, I can’t do all of that.” My dad started sending me text messages saying that Mom was in the ER. “Lots of pain,” the texts read. I began to worry that Mom’s situation had gotten much worse since I had seen her last.
That week last February during my visit is still a complete blur. Days and nights bleed together. There was little sleep. I made pill charts to make sure Mom didn’t overdose on painkillers and anxiety medications. They were prescribed, “As needed,” and she hated taking them. I cooked meals that she didn’t eat – just too much pain. She had no appetite. I didn’t eat much either.
I cried more than I had in a long time. I followed Mom back and forth: from her chair to the bathroom and back; to the bed that we brought downstairs for her. Climbing stairs had become a burden for her. I researched everything I could. On one particular occasion, Mom got so frustrated with my constant research, that she literally took my cell phone out of my hands and told me to, “Give up.” She was struggling to hold on to any hope at all.
I left that visit with a broken heart for my mother. I sat in the airport, numb from the experience. I ordered a drink and some food at the bar. I slept like a baby on the plane. My boyfriend picked me up from the airport, and I cried all the way home. He held me, and I wept for my mother. I wept for my father. I wept for my brother and sister and nephews and niece. Our mother, wife, grandmother and friend is still here, but we miss her. She misses herself. The mesh with all its pain, complications and unanswered questions has impacted our relationships with her.
My sister flew home about a month after I was home. She didn’t take her kids. It was for the best; Grandma was in bad shape. We, her family members, have become nurses, doing the kinds of up close and personal things that nurses do – my brother, sister, and father – all of us. I don’t disclose this to embarrass my family, although it most definitely will. I tell you these things because this is the truth of living with a mesh-injured mother. It is the truth.
We have become a family poised to take action. We research. We ask questions. We are the squeaky wheels. We spend a lot of time on the phone with one another planning courses of action regarding doctors, lawyers, health insurance, etc.
“In the midst of it all, my mother reminds me that she is a person, not a project. We must remember that. It is her body. She gets to make decisions.”
My mother is a person. My mother is a person in pain, a person who did what her doctor recommended to fix a problem, and her life changed forever – and not for the better. My mom has a mesh implant, and her health problems started shortly after it was implanted. We have yet to find a doctor who will diagnose the mesh as the culprit and cause of her pain and/or the litany of other symptoms she has developed since the procedure.
It’s highly likely that the rest of my mother’s life will be one that includes pain in all its iterations. Thankfully, she has found a pain management program that has made her pain more manageable, but it is a daily struggle.
My family has a different life than we thought we ever would. We get angry about it sometimes. We get angry that there are so many women struggling in the same ways. My family and I pray and try to be an encouragement, and we give one another grace when one of us just can’t handle the emotional strain of it all. My mom has many times been just as brave for the rest of us as she is for James, our family’s precious next chapter. She sees how upset I get – how upset we all get – about it all.
She’s afraid of worrying me. She called the other day, and no, she didn’t talk about her pain or herself; she actually asked how I was doing.
That is the kind of mother I have. I pray that I will have her for many more years.
I love her very much.