The Unbearable Likeness of Being a Mesh Angel’s Daughter

The Mesh Warrior BluesOne 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, a Mesh Angel’s daughter.  

Thank you for sharing your story. ~ God Bless you all/TMW


Tanya

Tanya

The Unbearable Likeness of Being a Mesh Angel’s Daughter

~ by Tanya

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.

Lighting Bugs

Lighting Bugs

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.

Grandmother and Grandson - a new relationship.

Grandmother and Grandson – a new relationship.

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. Don't give up

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.

A mother and daughter's heart is inseparable.

A mother and daughter’s heart is inseparable.

2 responses

  1. Tanya, you ARE doing something for your mother: you are her voice and you are speaking out! Did you know that there is a meeting/briefing in DC today, June 12 at the US Senate Dirksen Office Building to discuss implanted medical device policy? Diana Zuckerman of the National Center for Health Research is convening and Consumers Union Safe Patient Project will be participating. Contact each of those organizations and make sure they know your mother’s personal harm story. Join with them to get justice and validation.

    Liked by 1 person

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