Why I Don't Want to Hear Your Scary Story About My Diagnosis

A couple of weeks ago my son was diagnosed with Lyme Disease. He came home from Scout camp and several days later had the trademark bullseye rash so we immediately took him in and had him started on treatment, hopefully soon enough that he will not have ongoing symptoms.

I posted publicly about his rash and diagnosis in hopes to spread awareness and help others notice if they find a similar rash on their bodies this summer. (You can find that post on Facebook here if you are interested). Within minutes of making that post, I began to be bombarded with people's comments, messages, texts and phone calls. It seemed that everyone that I had ever met had a scary Lyme story to tell me.

It was awful and inappropriate, however well-meaning the comments were. As a nurse, I well know how bad Lyme Disease can be. I certainly didn't need the reminders, again and again, while my son was being treated. It honestly set off a terrible anxiety that we did not need.

In order to set boundaries and let people know that the stories were overwhelming me, I made a post on my private Facebook page asking that people stop sharing the scary stories. The responses to that post were of even more people telling me all about the awful Lyme Disease experiences that they have had, as though they had not even bothered to read my status or, worse, that they did read it and still felt compelled to share the story of their sister's boyfriend's cousin who is has now been bed bound and is in constant pain due to Lyme Disease.

 *sigh*

It's oddly as if people are so conditioned to tell us their sad and scary medical stories that they cannot help themselves. Any woman who has been pregnant knows this phenomenon all too well. From the moment we tell the world about our pregnancy, we are bombarded by horrific birth stories as though the stories themselves will strengthen us for childbirth. They do no such thing, of course. Instead, many women become utterly terrified of giving birth instead of feeling empowered by the women around them.

As a nurse, I have also experienced the frustration of my patients as their loved ones tell them about the essential oils that can "cure their cancer," the alkaline diets that "chase away dementia" and vitamin d drops that "work better than therapy and medication for severe depression". For many with chronic illness, it becomes damn near a full time job just listening to all of the suggestions that seem benign or helpful on the surface, but are often exhausting and simply confusing to the patient, not to mention often lead them to buy unnecessary and sometimes expensive "therapies" that most often do nothing at all to help. I've even had patients stop much needed therapies in favor of essential oils or expensive vitamins only to lose progress on fighting their illness. It seems that everyone is an expert these days, proudly bearing degrees from the College of Google Searches.

What is this compulsion? Why do we do it?

I don't have an answer to that. What I do know is that it must stop. We may have a story that we'd like to tell or a therapy that we hope might help. However, we must first ask ourselves if it is helpful and ask the permission of those suffering first. A simple, 'Would you like to hear about my "insert loved one here" 's experience with your illness?' or a 'I've heard about a treatment that may be helpful, would you be interested in hearing about it?' would suffice. It's quite likely that they've heard enough "experts" spout off on the subject for the time being.

Maybe in the sea of "experts" desperate to unload their experiences, they've been waiting all this time for a single, listening ear.

I often say that if being a nurse has taught me anything, it is that at the core of who we are, inside and underneath all of the bravado, each of us is just a scared little kid begging the world not to be alone in our darkest hour.

 If we are to be a true friend, maybe we can find it in ourselves to shine light onto our loved ones instead of throwing them into a deeper darkness. This is the time to keep our ears open and our mouths shut. 

Are Funny Memes Damaging to the Profession of Nursing?

I'm incredibly proud to be a nurse. Being a nurse has been one of the greatest joys of my life.

Not long ago I was attending to a patient and she asked me if I liked my job. I answered her with a fervent 'yes!' and told her that my job challenges me every day and that I get to meet the most amazing people. I told her that I can't imagine doing any other job.

She very honestly opened up to me and told me that after seeing what nurses post on Facebook, it seemed like we hated our patients. I was a bit speechless but assured her that I love my patients and think of them often even while not at work. She further admitted that she has avoided going to the hospital in the past because she didn't want to be cared for by a nurse that didn't like her job or her patients. I was horrified that someone that may have seriously been in need of medical care did not seek it because of my fellow nurses' social media posts.

Her frank confession changed the way that I viewed my colleagues posting of humorous(and often rude)memes on social media. I know that nursing is a very stressful job and that those in medicine often compensate for the stress by coping with humor that can be very inappropriate. Break rooms at hospitals are full of jokes that would surely be deemed unacceptable on the floor where our patients can hear them.  Social media, however, is an entirely different beast. The jokes and memes put out by medical professionals do not only come before those inside medicine, they are seen by everyone on your friends list.

So, I'm asking with honesty-- are these jokes and memes harming the profession of nursing, a profession often regarded in the past as the most honest of all professions? I fear that it is.

I follow a blogger that happens to be a physician and he recently shared a meme from a nursing blog's social media feed. It was relatively harmless, but indirectly inferred that nurses may not care about their patients. The comments on the meme ranged from nurses mocking their patients to non-nurses commenting that it seemed like nurses no longer care.

I felt sick. I care every, single day. My co-workers care every, single day. I work for a non-profit and make a very low wage and bust my ass every hour of every shift and often work unpaid hours so that I can finish my charting and communicate with other agencies working with my patients. I think of my patients often in my non-working hours and am often brainstorming ways to help make their lives better. I know that I'm not alone. The vast majority of nurses care so very, very much for our patients even when we become jaded and are exhausted physically and emotionally.

I've shared some memes here that my nurse friends have shared on their public social media feeds. I admit that I shared the more mild memes because the more offensive messages made my stomach hurt. We're publicly implying with each of these memes and messages that our patient's pain isn't real, that our patients are stupid and that we don't really want to care for them. 

I know that I'm going to be lambasted by the jaded nurses who will accuse me of not having a sense of humor. That's fine. I can deal with that. I do understand how years on the job can jade you and how humor can get you through the toughest day. I actually happen to have a wicked sense of humor and a raging potty mouth. However, there is a time and place for everything. 

I can't help but think about the most vulnerable of patients out there. Those who already have a fear of hospitals. Those are are sick but are afraid of being shamed for their weight, or drug use, or lifestyle. Those who have already had a poor experience with medicine of whatever kind. 

Is there a chance that these posts may increase their fear so that they may not seek out help? 

Is there a chance that patients may not trust their nurses during their hospitalization? 

I believe there is a strong chance of that happening for some patients, even if the number is small. And, if that is so, isn't that enough reason for us to stop publicly posting memes that make our patients feel shamed, even in the smallest way? 

I promise you that I will do my best to think in the future before I make a public post, both about what the post may make others feel about my beloved profession and how it may impact the psyche of a future patient. My profession deserves such a pause of thought, as do my patients. 

Cold Hands, Warm Heart

My entire life I have been plagued with having cold hands and feet. Most of the women in my family seem to have the same trouble. As a child, it was something that I gave little thought to. However, after becoming a nurse-- a very hands-on profession, to say the least-- it became something that I thought about and worried about daily. After all, I care for my patients in times of distress and touching their bare skin with my ice cold hands didn't seem soothing at all.

I've learned some tricks since those early days, just out of nursing school. I take Niacin at my doctor's recommendation and this seems to boost my circulation and ease my Raynaud's Syndrome(a condition that causes my hands and feet to become blanched and painfully cold). I have hand warmers that I heat in the microwave and keep in my scrub pockets when my hand are painfully cold. I also have learned to rub my hands together before touching a patient(except in an emergency situation, of course). Still, even with the tricks to keep my hands warmer, it's not uncommon for my patient's to occasionally wince when I first touch them. It makes me feel terrible.

When I was a hospice nurse years ago, I found that the older generation seemed to love me more for my chilly hands. There is an old adage, "cold hands, warm heart", and many seemed to think my cold hands signaled a compassionate heart. There were several older women that even went as far to tell me that they don't trust nurses with warm hands. Now, I'm not one to shrug off anyone's beliefs(especially when they benefit me- ha!) but I don't truly believe that someone's poor circulation likely is connected to their compassion. However, I've learned over my nursing career not to disregard anyone's beliefs. Nursing is a calling that leads us into a world where we live with one foot in this world and the other foot in the next world. I've seen so many things that could never be explained by science. Nursing has opened my mind to so many things that my pre-nurse self would have shrugged off. I learned during those years as a hospice nurse to accept that sometimes, something like having cold hands, can turn out to be a strange blessing.

 Yes, I said that it is a blessing(although I admit to moaning and groaning in the midst of the cold, Iowa winter when my fingertips turn a nearly permanent white). It forces me to be conscious of how my touch can impact others, both good and bad. At the beginning of each of my patient visits, I take a moment to warm my hands and my stethoscope with speaking with my patient. It forces me to slow down and remember my patient is a person, not simply a body to be assessed. These extra moments of humanity have been such a gift, to both my patients and I. My patients are my heroes and hearing their life stories have been one of the greatest blessings of my career. Those moments of simply listening, not always allowed with today's overwhelming nurse/patient ratios, are crucial to our patient's health.

These chilly hands have also been a reminder to me that human touch can be a burden or a blessing. Now, as a sexual assault survivor myself, this should be ingrained in me. However, many of my jobs in my career have been in positions with unsafe nurse/patient ratios with shifts that were a blur of nursing assessments and treatments. There have been many times in my career that time was a gift that we were never given. The patients were a haze, the memory of one blending into the next, and there were few, if any, deep connections made. I often wonder if my rushed assessments, as necessary as they were, were toxic to the patients who could have used an ear to listen, some human touch not contingent on care  and care from a nurse who wasn't breathlessly ticking down an impossible to-do list for the shift and praying for no crisis as she simply didn't have the time. 

These wintry digits have also been a reminder to me that, in nursing and life, there will be many things that I will have no control over. I was born with these perpetually blanched hands and they will likely be chilly until my death(and, I suppose, after my death. Too morbid?). It's a small thing, really, these hands and there temperature. It may seem like a silly thing to spend so much of my time thinking about. But, these hands- they touch so many in my day and I want that touch to be therapeutic. So, I take that which I have little control over and do what I can to ensure that my touch, which comes out of a deep desire to heal others, reflects the warmth of my heart.

I've always tried to do the very best for my patients. I truly have. There have been many times that it did not feel like enough. Too many times.  I keep learning and growing and allowing my heart to continue to expand. The lessons of nursing are many and can be found most anywhere- even in the blessing of these perpetually cold hands. 

~Nurse Mandi

Safe Spaces

I have the privilege of being able to volunteer at my daughter's elementary school on Friday mornings. I have done so for most of the years that my three children have attended Centennial Elementary in Altoona, Iowa(my older two children are now in middle school and high school).

I often find that as I enter the building, a palpable sense of calm washes over me. I can feel my heart rate slowing and my stress dissipating as I sign in to the office and am so kindly greeted by staff as I walk down to the second grade classroom where I will work with students and make copies and whatever is needed for the morning. 

I have long thought that the reason that I love Friday mornings so much is that I get to work with children. I am a mother and a pediatric nurse so you may have already realized my love for children. However, I have been realizing lately that my love for Friday mornings and this school goes so much deeper than just the privilege of getting to work with a know a classroom of children. I love Friday mornings because Centennial Elementary is a safe space for all who enter the walls of this institution that is far more than just a place of education. It is a place of safety and love for all who enter. I feel insulated from the volatile outside world the minute that I walk inside these doors.

There has been much talk of safe spaces lately. With a divisive political culture, an election that nearly brought many of us to our knees and hate crimes on the rise, many of us have been searching for safe spaces-- family and friends who understand us, the comfort of home, building communities of likeminded people. Some are mocked and deemed weak when they talk of such a need for a place of safety, a place to be themselves without repercussions.

On Friday mornings when I walk inside the brick walls of the elementary school that I once attended myself, I see the beauty of places where children(and adults) are free to be themselves. The staff here, all of them from the principal to the janitor, have made a concerted effort to make this space a place where students can come and learn and be loved on, a place to be uniquely themselves.

As I work with students, I often notice the few in torn and dirty clothing and the few with eyes that always hold sadness. As a public health nurse in this community, I know that not all of these children will have a safe place at home. However, when they are here they are safe and loved.

Over the course of the each school year I get to witness little miracles in these hallowed walls. I've watched perpetually quiet children become animated and full of spoken thoughts. I've watched as the school organized clothing and gifts each year for every student whose family cannot afford to provide a comfortable Christmas for their family(and do so without fanfare, without asking for thanks). I've watched children that moved from another school come to Centennial very behind on educational benchmarks and, with the help of staff, learn so much in one year that the next year they easily keep up with their peers. There are many seen and unseen miracles in this school each year(and in schools around the world).

I know that this school isn't perfect. No school is. However, I've seen with my own eyes the beauty of what can happen when people come together in love and create a space where people can blossom. I've seen the beauty of what could've been a cold, educational institution instead becoming a haven for all. It is a beautiful thing. 

I will never be able to verbalize my gratitude for the staff that made this haven for my children and the other students here. I cannot imagine the work that this takes each and every day. I witness a tiny bit of that effort on my Friday mornings and it takes my breath away.

There is so much hate in the world right now, but there is so much light too. Centennial Elementary is a light in my world and in the world of many. I will forever be grateful.

Now, if only we could somehow expand the walls of this small, suburban school to somehow include us all. What a lovely world that would be. 

Shelter From The Storm

As I drove to work this morning, I passed a farm where a little girl stood perched halfway up a fence, leaning over her horse with a little umbrella to protect him from the pouring rain. That tiny umbrella, bright red against the dreary grey of the storm clouds, of course offered little protection from the cold November storm but it was a beautiful sight nonetheless.

As a sensitive soul, my work in the world never feels like enough to my heart- I always feel like I could be doing more to staunch the pain of others. Seeing a little girl drenched and shivering in order to give her beloved horse a tiny bit of shelter made me see the world a bit differently, though.

Maybe it is enough, maybe even MORE than enough if all we can do each day is to give a bit of shelter and comfort to just one soul in need. Maybe that alone is enough to change the world.

Are We Taking Modern-Day Criticism Too Far?

I always know that an article that I have written is doing well and being widely shared when I open up my messages to find cruel remarks inside. It is simply a fact of writing on our modern-day internet. The internet is full of trolls that thrill in sitting in anonymity behind the glow of their computer screen and writing cruel things to others. 

The past few months have been a time when I chose to dig deep, push past societal stigmas and come forward with really painful things in my life. It has not been easy for me, even though I feel that if I helped even a single person that it was worth it. 

When my article about being a suicide attempt survivor went live, I received messages saying that they wish I "would've been successful" at killing myself, that I was a "loser and an embarrassment to their country" and that I will be going to hell. This was my first article to go "viral" and was my first experience with how ugly people can be. I sat vigil through the night that first night, reading the messages and weeping. Very few times in my life have I felt as alone as I did that night. 

When my article about being a rape survivor went live, I received messages stating that I am "so ugly that I should be grateful that I was raped", that I should've "relaxed and enjoyed it" and a few pornographic pictures mixed in(Hey, boys- unsolicited dick pics are never cool, Man. Keep your pants on.) I was not prepared both for the vulnerability that I felt in the days after that piece first hit the internet(and still feel to some degree today), for the few friends that turned away from me and made me feel shame and for the onslaught of feedback, mostly wonderful but with some powerfully hateful things missed in. I became physically ill and I truly believe that my body could not handle the immediate and overwhelming emotions that I was not in any way ready for. I went to bed for days and when I finally was able to emerge from my self-imposed isolation, I can tell you that I was not the same person than I was when I went into my cocoon- in ways both wonderful and awful.

Yesterday, when an article that I wrote to bring awareness to CMV(a virus) went live I received messages stating that I'm a "fear mongering bitch" and again that I'm going to hell( what is it with internet trolls and hell?). This time, I was rather shocked by the hate even after growing a thicker skin through these past months. I was simply trying to help others to not suffer in the way that my friend and her family has. I still can't wrap my mind around why someone can find fault with that. 

My core belief since childhood has been that I am not worthy, a belief that many of us struggle with. These comments play on that fear, strumming the tight strings of my misery and giving evidence to that belief that I've tried to hard in my life to eradicate. It always amazes me how we seek and gather evidence to support any of our beliefs, even the ones that we wish we didn't have. It is so painful. 

I can receive dozens of lovely messages(thank you to those that have sent them!) but it is those awful comments that pluck at my heart and leave me feeling stuck. I find myself on a roller coaster of emotion as I swing from the highs of having a successful article and the lows of reading through the name-calling, criticism, and general ickiness of cruel messages and e-mails. 

Years ago, these comments would have made me take a break from writing--out of fear, out of that place of unworthiness, out of pure shame. I would have believed each and every unkind word, too mired in shame to refuse to acknowledge the cruelty. 

However, today-- even after shedding a few tears-- I am celebrating my response to these comments as a win. Why? Because instead of choosing not to write, I'm going write more and write harder in spite of the naysayers and in honor of myself. In the words and advice of the great Cheryl Strayed, today I'm gonna "write like a motherfucker." 

Write on criticizers of my work-- I will use your hate to fuel my flame. I am truly sorry for whatever circumstances of your life have led you to such a low place that this is the way that you choose to spend your days. I refuse to concede to your assholery. You may think of me as your nemesis--wherever you choose to bring darkness, I will bring the light threefold. The war has begun. The light will win. 

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Inside

This week I met a couple of people in person that I had communicated with for a long time via Facebook/text, etc. 

Meeting someone for the first time in person is very hard for me. I'm incredibly scared of rejection. 

If I had the courage to speak my heart to those that I meet for this first time, this is what I would say-

I know that I am not society's idea of a beautiful woman. I have strong features and care little about my physical appearance. Please love me anyway. 

I know that I am overweight. I've struggled with my weight for years. I have PCOS which makes gaining easy and losing slow. I am highly sensitive and often drown myself in food and drink to cover the pain even though I loathe myself for doing so. Please befriend me anyway. 

I have no fashion sense. I am most comfortable in my hippie skirts, bare feet and threadbare Beatles t-shirts. My hair is often a mess and sometimes I don't even bother to match my clothes. Clothing seems so unimportant to me but I know how important these things can be to others. Please get to know who I am inside. 

I can be socially awkward. I feel the pain of the world in my heart and often want to talk about deep, deep issues. I hate the small talk that permeates our society- I want to know the real you, not about the weather and such. I know this isn't the social norm. Please hear me out anyway. 

I can be hard to get to know. I have been burned badly, especially by women. It can take a year or more before I let you all the way in. I am the most loyal person you will ever know. Please give me the time to trust you.

My outsides will never match what it shown on a magazine cover. Never. I could probably handle you rejecting my physicality. However- I, like everyone else, am really the person that is inside me. Please give that person a chance.

You Are Perfect Just as You Are

I've never been society's idea of beautiful. I've always had a propensity to be a bit chubby and have strong facial features. 

When I was a child everyone would see my sister, blonde and lithe, and them me, chubby and awkward, standing at her side and would compliment her on how pretty she was. Then, as an afterthought, would compliment me on my intelligence.

I wanted so badly to be pretty. I spent years dieting, dyeing my hair and trying different makeup techniques to make my nose appear smaller. However, I could never change the image in the mirror much.

It wasn't long before I stopped focusing my energy on my outsides and began trying to refine my insides. I've spent much of my life focusing all of my time reading, learning, working and volunteering to make myself, and hopefully the world, better.

My intelligence and kindness have opened many doors for me. As an introvert, I spend many hours inside my head and quietly reading and those hours of thoughts make me continually into a more mindful person. My goals of weight-loss and outer perfection have been replaced with a single boas-- to be a better person with each and every year that passes. 

I still struggle with self-worth and avoid looking at myself in the mirror at times.  But, I'm pretty confident about the person that I am inside-- kind, compassionate, well-read, always learning. I hope that I continue to grow-- I know that I still have much inner work to do. 

So, I guess what I'm saying is that I'm grateful for not being born physically beautiful. It has made me a better person. I need to remind myself of this when I scoff at my image in the mirror.

You were born perfectly and exactly the way the you were meant to be, Loves. I'm so glad that I was made the way I am and that you were made the way that you are. 

Shine your light, the world only has one you. 

To the Parents of the School Bully – You Have Created This Monster.

Every school has at least one bully. The child that, no matter how vigilant the school is, finds a way to make other children miserable. Sometimes this child appears to have lovely, engaged parents and no one can make out how this bully was created. More often, however, it is wildly apparent to all of us that the parents are the direct cause of the child that feels free to be cruel to the other children.

Maybe it is a naïve thought, but I believe that the vast majority of parents have their children’s best interests at heart. That fact somehow makes it even harder to watch from afar as parents make choices that not only negatively impact the other children at the school, but also will one day impact their own child.

There is a boy at my children’s school that I have watched from afar as his parents slowly and surely created within him a selfish and cruel child. I have watched as they asked for special treatment of their son time and time again, thinking their beloved son to be better than the rest of the population. I have listened to their public rants each year about why his teacher isn’t good enough for their son. I have watched, horrified, as they witness his poor behavior and do nothing to stop it and sometimes even encourage it.  I have watched as they, the parents who should be setting an example instead broke school rules themselves over and over again.

They have fostered a son who believes that the world should and will bend for him. With their own actions, they have not only raised a son that often makes the school day hard for those around him but they have also raised someone that will likely struggle to achieve much in this world for the world will surely not bend to accommodate their child’s every whim as they are teaching him that it will.

I simply cannot believe that these parents wish for a bad life for their son or those around him. I try to find compassion for them, even as their misguided actions have led to tears for my own child. I wish for them to see what those around them can see so clearly. 

What I wish that you could know for yourself:

Your child does not deserve better that anyone else.  Of course your son is special. All children are special, especially to their parents. Expecting your child to always be treated better than those around him is creating a child that believes that the world should and will place him on a pedestal. As much as you would like for the entire world to see your son the way that a mother does, it will never happen. Do you truly believe that any boss will allow him special treatment, even as he breaks the rules over and over again and publically shames his coworkers? Will police officers and judges give him his own set of laws to follow because he is “special”? I shudder to imagine the adult life that is ahead of him if he continues on this path.

Kindness must be cultivated.  I believe that kindness is innate in most children. However, as they grow up, it is important to teach them to be kind even when those around them make mistakes. I’ve seen the way that you treat school staff- with disdain and expectations of them witnessing your superiority. Your son treats his peers in this same way. If you treat others with kindness, they will follow your lead. Cruelty can be fostered in the same way and it is toxic to everyone.

Bullies never win in the long run. It may give your son, and maybe you as well, some feeling of superiority to act in the unkind way that you do. It must be serving you in some way for you to continue in this way.  However, in the long term, this behavior leads to a very lonely life. It is impossible to foster relationships when one is frequently cruel and submissive. I cannot imagine that you wish for your son a life of loneliness.

Humility is always better received than egotism.  Your child is a human being and, therefore, cannot be the best at every, single thing that he does. He will have strengths and weaknesses and there is nothing at all wrong with admitting that you aren’t great at something. It’s also important to be humble and admit when you are wrong. Everyone makes mistakes and it’s necessary for both parents and children to be open about their own mistakes and apologize when necessary. No one wants to befriend someone who only flaunts his or her own ego around.

If you do not have consequences for your child’s poor actions, they cannot learn from their own mistakes. People always say that the best way to learn is by making mistakes, something that most of us have learned firsthand. However, you cannot learn if there are not consequences. If you continue to make excuses for your son’s behavior and continue to expect the school to treat him differently than others, he never has an opportunity to learn and grow from his mistakes and-possibly even worse- believes himself to be above the rules.

The school is your ally, not your enemy.  I know that school decisions aren’t always correct, for teachers and staff are human, too. However, the school system is full of teachers and staff that work incredibly hard for little pay- they are doing this grueling job because they truly care about children and want them to succeed. Fostering in your child a belief that the school system should be bucked and fought at all costs is creating a strain on the staff, students and even your child. If you have a concern, treat the school as team members and treat everyone involved with respect. Always listen as much as you speak. You will likely find that they are eager to help you make the best life for your child.

I’m not holding my breath and assuming that you may read this piece and miraculously change the way you parent your child but I cannot help but hope that you will, for your son's sake as much as for the other children at the school. It is very hard as a parent to place limits on your child and to discipline them when necessary. I understand that pain. However, I believe your child will someday thank you for giving him the tools to be a kind human being and, hopefully, someday be a productive and compassionate adult.