The Gift of Time

It’s 3:45 AM. I just had my labs drawn. It’s the morning of my 54th birthday. AND I have been in the hospital almost 3 days.

As I’m laying here, I remember that tomorrow is the anniversary of the day I admitted to the hospital for my first lifesaving surgery. Monday, July 30, 2018 will be eight years since I had my first open heart surgery – it is the “birthday” of my heart. IMG_5807

Lots of thoughts and feelings to process as l am housed on the cardiac floor on my 54th birthday.  Just find it hard to believe that I am sitting in the hospital eight years later at the exact same time…AND happy I am able to be sitting in the hospital 8 years later…

Thoughts at the end of the day after my 54th birthday … it’s 2 AM.

It’s interesting how you can be receiving so many loving texts and Facebook wishes for your birthday and feel so blessed, yet feel all alone. I am so grateful for the love and the wishes, but I’m sitting here, feeling alone, in a hospital bed on my birthday which can cause one to do a lot of reflection.

Your TIME is the most precious gift that you can give to someone. But the gift of time requires being present, attentive, encouraging, listening and really hearing what’s being said, rather than talking about you. Yet time is the one thing that very few people give freely. When people do give time, it’s often out of obligation, rather than the desire to truly be present.

There is a saying that goes like this…

Time is the most precious gift you can give, because you only have a limited amount of time. The gift of money is not as valuable, because you can always make more money, but you cannot make more time. So any gift you give or receive of time, is a gift of life.

There are so many ways that this applies to me right now.  I received the most precious gift possible – the gift of eight more years of time. Time that I could watch my daughters grow and develop into amazing young women. Time that I could be loved by my husband and only hope to love him as well as he has loved me. Time to allow the opportunity to meet amazing women and families on this journey we call life.

Time is a gift that most of us take for granted. Time is not measured by clocks, but by the moments. TIME is PRICELESS.

Eight years ago some incredible doctors took their time and their expertise to give me the gift of More TIME. I underwent a 13 hour open heart reconstructive surgery as a result of congenital birth defect. I was told after the surgery that had the defect not been discovered I would’ve collapsed and died within 30 days. That surgery gave me the gift of life. As of Monday, that will be eight additional years of life. TIME that has been incredibly precious and dear to me.  When I think about what I would’ve missed over these eight years, it would have been the people that “make my heart”.

Little did I know at the first heart surgery that I would again receive the gift of time six years later… Two years ago.

I am grateful that my birth defect was discovered.  It gave me a second chance at life. A chance to do things better. Love harder.  I am lucky enough to have had several second chances. Between July 28 and 30th I reflect a lot on these two birthdays – the second opportunities.

Today in my reflecting, I realized that the preciousness of time can actually cause us to lose valuable time. In today’s world we are constantly multi-tasking and searching for ways to do things quickly and more efficiently. But in that efficiency, we lose connection. Rather than taking the time to call a friend or loved one and wish them happy birthday, we send a brief text… “Happy birthday! I hope you have the most wonderful of days.” We have taken a “second” of time to remember someone we cherish, yet we failed to connect, which is lost time. If we fail to make these connections as we walk through life, is time really precious?

In our quest for time, we often forget to spend time.

The way that we prove relationships are important to us is by investing time nurturing them. Words, without time, have no value. There must be effort and time. A relationship is defined as the way in which people are connected. But, if today’s world is just connection through texting or short email, without personal interaction, is it really connection? Or are they just brief words in an effort to preserve time?

I am not going to lie. I am guilty of this myself. Very guilty. I am a person that likes to pick up the phone, but I know I’ve forgotten the birthdays of friends who I love and cherish. I know I have sent birthday text messages instead of picking up the phone and calling. I know I have completely forgotten the special days of others.  I have failed to take time to send personal cards and acknowledgments that should have been sent. There are personal interactions that have been missed, that I deeply regret.

Today, as I sat all day in the hospital bed and waited for celebration calls from friends and family, many of which did not come, or texts were sent in lieu, I realized that the social media/smartphone world has caused a loss of personal interaction and connection. People don’t really communicate anymore. Or maybe we are seeking communication from people that are outside of our real world – maybe our virtual world has taken over our real world.

I am honored and humbled to have been inundated with a tremendous amount of Facebook posts and wishes, and I am very grateful, as my birthday probably would’ve totally stunk without them. But, maybe my search for support from the virtual world caused me to miss what was sitting here right beside me.

As I sat here thinking at the end of day, I recognized that it was necessary for me to be in the hospital this day in order to maintain life. To keep living life. And while it may not have been the birthday I imagined, it was another birthday that gave me life.  Although it was an uneventful step into a new year of life, I realized that there was one person that stood beside me this entire day.

A birthday banner decorated the sterile wall of the hospital room, flowers and balloons brought life and dimension, my favorite spaghetti and meatballs brought taste sensation, and cupcakes brought celebration.  He made every effort to make my birIMG_5788thday special on a day where I felt so uncelebrated because I was alone in the hospital room. But here he was, sitting right beside me for most of the day, doing everything he could to make the day more manageable. More celebratory. He is one of the main reasons why I’m grateful every day to have received the gift of time. He has stood by me every step of this journey and I know it has not been easy. I need to remember to give him the most precious gift that I have, which is the gift of my time.

As I’m wrapping up this blog, I recognize it took a path on its own, but this writing, along with the fact I’ve been in the hospital the last five days, and it was the birthday of my life and my heart, has made me remember how precious TIME is and that we need to continue to nurture relationships as if they’re brand new. If we treat every relationship like we do in the beginning, it will never end, but this requires time. Time that we often sequester, are hesitant to give, unless obligated. We do have a very limited amount of time in this world, but if we harbor the time we won’t actually be living life and connecting in our most valued relationships.

The reality is I have received the Gift of TIME, and LIFE, and have had several opportunities to hit the reset button. More chances than most.  And… Yes, it may take a 2 x 4, a steel beam, or one or two heart surgeries for me to find clarity… Time is valuable and I need live my life spending every second of Time connecting to those I hold dear. I want to make sure that every minute of time has been exhausted before I run out of life.

We are only given TODAY and never promised TOMORROW. Make sure you tell the PEOPLE who are special in your life, that you LOVE them.IMG_0948

My 54th birthday certainly was not full of any pomp and circumstance – but it was an opportunity to treasure the LIFE and the MAN I call my husband, sitting beside me, in that small room that had been decorated with LOVE, reflecting on our daughters, our family, our friends, and cherishing another birthday where I had been given….

the GIFT of TIME.

 

Written July 29, 2018 at 2AM on the cardiac floor of Tampa General Hospital.

I am Listening.

It’s been two years. Today is the second anniversary of my second open heart surgery.

On the heels of thanksgiving, gratitude is the first thing that comes to mind. Or maybe I know it’s the first thing I should feel. Grateful.IMG_0063

Grateful to be alive.

After all, all the doctors have told me I should not be here. That it is a miracle. That I’ve been given a gift. The gift of life. The gift of being allowed to love my family longer. Better. Harder. The gift of being given the opportunity to be a better person. The gift of getting more time to leave my footprint on the world, in whatever small way I can.

Trust me, I am very thankful for the opportunity to be here. To have another chance. To continue to love and be loved. The need for and thought of gratitude always plays through my head. But I’d be lying if I didn’t say that I grieve what has been lost.

Yes, I know that it could be much, much worse. That there are people struggling with challenges that look bigger. More difficult. And maybe that’s the problem.

Almost every day, people, whether doctors, friends, family, neighbors, read my medical records, ask my story, or know my journey, and look at me and say… I am so glad to see you’re doing well. That you’ve fully recovered.  Very few actually ask me how I feel.

They look at me, assess, and determine my physical and mental well-being, by my looks alone, and then make a statement imposing me with their belief of my health.

In less than a minute, a conclusion regarding my health has been determined, without me uttering a word.

I get it. We all want our friends, loved ones, patients to be well. We’re looking and watching for signs that they are no longer ill or struggling. We draw conclusions and share stories that give “us” relief. That allow us to tell ourselves that our beloveds are healthy and strong.

I can’t tell you how many times people have told me that their grandmother, father, or neighbor had bypass surgery, stents, or a valve replaced. The fact those don’t resemble my journey doesn’t matter. The story goes something like this… “I’m so glad to see that you’re feeling better and you’re healthy. You know my grandfather had bypass surgery when he was 78. The surgery went really well and he was home out of the hospital in four days. He went on a trip with my grandmother two weeks later and is just like new.” Or “my neighbor had four stents placed and was out mowing his yard five days later”.

In our attempts to make ourselves feel better, and to share stories that make us feel like we can relate, we often, in one or two sentences, completely invalidate the person and the journey others are walking. We are so busy talking, trying to convince ourselves that everything is just fine; we truly forget to show concern, ask questions, and really listen. I know that I have been guilty of this myself. Many times.

We do not listen to understand. We listen to reply.

The second open heart surgery sucked the life out of me, while at the same time giving me life. Today, at 53 years old, it’s hard to not be the person that I thought I would be. It’s hard to hear the stories of others which just highlight what has been lost.  It’s frustrating to not be full of energy, of endurance, and to be plagued by so many physical challenges, ones that can’t be seen. It’s heartbreaking to know you’re not going to be the grandmother you envisioned, while at the same time remaining grateful that you’re still here. It’s hard to be compared to 80-year-olds and to know that many are stronger than you. And yes, I won the ultimate prize, the gift of life, while at the same time having many things stolen from me and being saddled with many physical burdens and challenges.

My exterior appearance has almost killed me, twice, while at the same time it protects my struggles.  It helps me to appear physically stronger than I am, while saddling me with expectations from others, and from myself. The fact that I appear healthy and strong compels me to do more. To try harder, and maybe it keeps me accountable. Yet, at the same time, my appearance does not allow me to rest and takes away my permission to do so.

Today, in my reflecting, it dawned on me that there are many people that are physically and mentally unwell, yet to the outside world look perfectly healthy. They are silenced by their appearance. They are invalidated by their presentation. Their attempts to speak and to share their struggles are often met on deaf ears  – because the eyes can create false illusions and conclusions. Deception. Their appearance makes them unable to be heard.

You cannot always determine whether someone is struggling with mental or physical illness by looking at them. You must listen.

My husband reminds me often that I have a new normal. That it’s up to me to give myself permission to rest. To recognize my physical needs and limitations, and act accordingly. He encourages me to keep speaking. And maybe that’s why I started writing this blog, one that he doesn’t even know exists. 🙂

As a mother, that has run her own business for over 30 years, worked in excess of 60 hours a week most of her life, was the organizer of every fundraiser, Gala, walk, March, backstage manager, soccer mom, homeroom mom, PTA, and tireless advocate for others, maybe I am on this journey for other reasons…

Maybe I am on this journey…to learn to be an advocate for myself.

Maybe I am on this journey … to keep speaking, so that others may listen. So that others may be heard.

Maybe I am on this journey… to give my daughters permission to not be their perfect selves.

Maybe I am on this journey… to teach others that you can be a survivor and still struggle.

Maybe I am on this journey… to learn that my imperfection will give strength to others.

Maybe I am on this journey… to learn to shed tears for myself, as I’m shedding tears for others.

Maybe I am on this journey… to learn to raise my voice for myself while I am raising my voice for others.

Maybe I am on this journey… to learn to put my own oxygen mask on, before I put it on others.

Maybe I am on this journey… to learn that I can only be strong for others if I’m strong for myself.

Maybe I am on this journey… to learn that if I don’t care and nurture myself, I won’t be able to care and nurture others.

Maybe I am on this journey… to learn to speak my truth in the hopes that it will free me and compel others to do the same.

….But I truly believe that I’m on this journey to learn to listen. TO TRULY HEAR.

Through our family struggles I would like to think that I have become pretty good at validation, compassion, advocating, supporting, and responding.  But today it dawned on me that maybe we have our own struggles and journeys to really teach us to listen …whether it’s to ourselves or others.

Maybe it is listening that teaches us to have true understanding, compassion, love, and gratitude.

“When people talk, listen completely. Most people never listen.” ~ Ernest Hemingway

So today, on the anniversary of my second open heart surgery, I am grateful to be here so that I can learn to listen in a way that truly helps me understand the journey… whether it is learning to hear my own voice or soul, those of my family, or the voices of others.

I am here. I am listening.

Grateful for both.

Thank you for the honor of listening to me as I walk my journey through this blog.

Much love.

Don’t Look in My Lunchbox!

10 Things you need to know before you speak

An Open Letter to all teachers, coaches, school personnel, educators, parents, and frankly, everyone, everywhere…

Dear Teacher,

I can’t thank you enough for your dedication and inspiring my child to love learning. You truly are a hero to me and my child.  I want to thank you for your concern for my child’s nutritional wellbeing and wanting my child to be healthy. It is greatly appreciated. But with all due respect, it is important for you to know that I am my child’s mother and I know their nutritional needs better than anyone.lunch-pic

Here are a few things you likely don’t know:

  1. My child may have a sibling who has struggled with an eating disorder. As a result of the genetic link, my child is 10 times more susceptible to developing an eating disorder than the average population. It is important that my child eats ALL foods. I do not want my child being encouraged, instructed, or told that he should not eat certain foods. Your words could potentially be the catalyst for food restriction and negative energy balance which could trigger an eating disorder for those prone.  ooooooooooooooooooooooooooooooooooooooooooooo
  2. Foods do not have moral value. I do not want my child being taught that some foods are good and some foods are bad. Yes, some foods may offer more nutritional value than others, but all foods have purpose. Some may offer more vitamins, but others may offer comfort, celebration and nurture their spirit. Nutrition is about balance. I want my child to eat all foods and learn all foods are good in moderation. Balance is key.  ooooooooooooooooooooooooooooooooooooooooooooo
  3. You do not know a child’s medical history, needs and conditions. Therefore, I encourage you to not instruct any child on their food choice or monitor their lunch boxes for content. A student could have a hematologic condition where their blood clots faster than normal. Ingesting vegetables, which are loaded with vitamin K, could actually harm them by creating a blood clot. A child with this condition needs to have a limited amount of vitamin K. The child could also be suffering from an eating disorder or a brain condition, you can’t tell by looking at them. They may need additional fats in their diet.  ooooooooooooooooooooooooooooooooooooooooooooooooo
  4. Are you aware that the average person needs 30% fat in their diet for normal brain function? You telling my child not to eat NO fat or low-fat may cause their brain to atrophy and may cause them to have memory problems. Having fat in my child’s diet can actually make them smarter. You see, their brain is comprised of 60% fat. So, their brain needs fat in order to function correctly.  ooooooooooooooooooooooooooooooooooooooooooooo
  5. It is estimated that at least 10 to 15 percent of children and up to 80 percent of all special needs children struggle with some form of feeding disorder or challenges. Some children have complex food challenges, allergies, or anxieties – they can be physical or mental. Many of these challenges are not obvious. My child may have severe anxiety in social situations or loud environments (like a lunchroom) and become overwhelmed and distracted. Therefore, they must consume calorically dense, safe foods – foods you may not consider nutritious – in an effort to meet their energy requirement for the remainder of the school day. My child may have ARFID – Avoidant/Restrictive Food Intake Disorder and may avoid foods based on certain qualities – such as texture, color, taste, or temperature. As such, my child may only have 3-4 foods total that he/she will eat. If you shame my child about what is in their lunchbox, they may eat nothing. Your words may have just eliminated one of my child’s “safe” foods – therefore harming them and erasing a source of energy.  ooooooooooooooooooooooooooooooooooooooooooooo
  6. There is little research on the effectiveness of healthy eating and weight initiatives in schools. In fact, there have been studies that have indicated that a potential unintended consequence of these programs and schools monitoring lunches was the development of an eating disorder in children who were susceptible or genetically predisposed. The children who are negatively impacted by these programs are typically students who excel in academics and extra-curricular activities and view the healthy weight initiatives as another measure of their success. So, please be careful with your words. They may compel to my perfectionistic child, my rule follower, to embark on a competition to be the “healthiest” kid. I know you would not want to be the trigger that caused a child to develop a life-threatening eating disorder or unhealthy food and exercise behaviors.  ooooooooooooooooooooooooooooooooooooooooooooo
  7. Research suggests that up to 50% of the population demonstrate problematic or disordered relationships with food, body and exercise. In our culture, there is an obsession with size and weight (thinness), diet and exercise. In fact, research has indicated that 81% of 10 year olds are afraid of being fat. Your words may result in my child having disordered eating which could include chronic yo-yo dieting, frequent weight fluctuations, rigid and unhealthy food and exercise regime, feelings of guilt and shame every time my child eats a food you have instructed is “unhealthy” or they gain weight or they are unable to maintain exercise habits. Your instruction could potentially cause my child to be preoccupied with food, body and exercise that causes them distress and has a negative impact on their quality-of-life. It could result in my child using compensatory measures such as exercise, food restriction, fasting, purging, laxative use, etc., in an effort to “offset” any food consumed. It is estimated 35-57% of adolescent girls and 20-30% of adolescent boys engage in crash dieting, fasting, self-induced vomiting, diet pills, or laxatives. You likely do you not realize the impact your words can have on my child’s mental and physical health – for the rest of their life. It is important you understand disordered eating is a serious health concern. Detrimental consequences could include a greater risk of obesity (the very thing you’re trying to prevent), eating disorders, bone loss, gastrointestinal disturbances, electrolyte imbalances, low heart rate and blood pressure, increased anxiety and depression, and social isolation. 00000000000000000000000000000000000000000000000000000000 ooooooooooooooooooooooooooooooooooooooooooooo
  8. Even if your words do not trigger my child to have an eating disorder or disordered eating, they may haunt them for the rest of their life. They may burden my child with thoughts every time they take a bite … they may question every food choice. They may analyze  every bite they take, every meal they choose, for the rest of their life. Your instruction may make my child afraid to eat wheat, chips, cookies, ice cream, or other foods they used to love and were celebratory. Please consider your words carefully. Please don’t make my child afraid of birthday cupcakes!  ooooooooooooooooooooooooooooooooooooooooooooo
  9. As my child’s mother, I know best what to pack in my child’s lunchbox. There are reasons my child’s lunchbox contains the foods it does. My choices may be driven by medical, mental, or financial needs. If you have questions regarding the food in my child’s lunchbox please contact me directly. Please do not discuss this with my child or shame them.  ooooooooooooooooooooooooooooooooooooooooooooo
  10. It is important that my child eat the lunch I have packed. If you notice my child is consistently not eating their lunch, is giving their lunch to other students, or is throwing it away or you have concerns regarding the amount of food my child is eating, please contact me directly. There may be a serious health concern. Please do not address this with my child. Please do not comment on the amount of food they are/are not eating. I count on you to be my eyes and ears when my child is at school.

I encourage you in the future to NOT monitor any child’s lunch or food choice. To reconsider and re-examine any school-based, anti-obesity, healthy living campaigns. To consider the fact that there is little research on the effectiveness of these programs. Is the potential risk of harmful effects on children’s physical and mental health and adoption of unhealthy behaviors worth the potential gain?

So, before you speak, please think carefully about your words. You see, my child respects you. They look up to you as their teacher. Imposing your beliefs and your nutritional needs on my child may compromise their health and mental state. Please teach them that all foods fill a need – always nutritional, sometimes celebratory and always nurturing.

Please understand, I know your intentions are pure and good. For that I will be forever grateful. But in the future I would appreciate it if you do not monitor my child’s lunchbox. Please leave that to me, their mother. I know their nutritional and emotional needs better than anyone.

Warm regards,

Mothers Everywhere

P.S. This article is not about monitoring lunch boxes because a child in the class may have an inadequate food supply in their lunch box or may have life-threatening food allergies. It is about the negative food talk happening in classrooms and lunchrooms, and how it affects our children. It is about food judgments and how programs that are intended to promote health sometimes have big unintended consequences.

Written by Cherie’ Monarch.  A mom on a mission.

If you are caring for a loved one with an eating disorder, please contact Mom2Mom – Eating Disorder Family Support Network and Dad2DadEating Disorder Family Support Network on Facebook.  No one should walk this journey alone.

If you have been affected by an eating disorder or disordered eating and would like further information or help, please Contact Alliance for Eating Disorders Awareness for support at (866) 662.1235 toll free or info@allianceforeatingdisorders.com. The Alliance for Eating Disorders Awareness (“The Alliance”) is nonprofit organization dedicated to providing programs and activities aimed at outreach, education, and early intervention for all eating disorders. The Alliance creates a bridge for those needing and seeking help by connecting people with resources and information to assist them in their recovery.

 

I Understand What it is Like to Not be Heard

Today is the one year anniversary of my second open heart surgery.  A surgery I vowed vehemently that I would never do again. A surgery that is so painful it can’t even be put into words. I have spent most of my life fighting and advocating for others… my daughters, my family, my friends, and my clients. It recently occurred to me that maybe I should start spending some time advocating for myself, speaking my truth, and raising my voice. That maybe it would help others navigate this journey we call life. So, I have decided to commemorate this anniversary by starting my own blog and speaking passionately about those things that make my heart beat, or keep it from beating.

Most people don’t understand what it’s like to live with an illness or medical condition and to be dying, literally, yet nobody’s listening. Not your family, your friends, or your doctors. Often times we may have cancer, heart issues, mental illness and fighting a battle every single day, struggling just to make it through the day. Yet no one is listening. You are routinely told “you look great”, “you are fine”, “we find no evidence that there’s anything clinically wrong with you”, etc.

Your struggle is invalidated EVERY SINGLE DAY!

I have lived this for the last six years. It started in the beginning of 2010. Suddenly I started experiencing physical exhaustion. I routinely road my bike for 10-15 miles every day, but was finding great difficulty riding two miles per day.  I would easily become winded.  I could not go one moment more. I went to my primary care physician and my endocrinologist. Both of them assured me “you look great, push through it, you are getting older. It’s Important that you exercise”.

I continued to persevere even though every fiber in my body was telling me something was drastically wrong.

This went on for six or seven months until I ended up in the ER in severe cardiac distress.  Of course my EKG was normal, but my blood pressure was abnormally high. Luckily the ER attending DID listen to me and did a CT scan of my chest. There he found a large aneurysm on my ascending aorta. I was discharged from the hospital without ever being admitted as he saw no immediate reason for concern. I attempted for weeks to get my primary care physician to listen. I was routinely dismissed and told that it was nothing of concern, don’t be worried, just continue to live your life.

The frustration of knowing something is critically wrong, yet being met with deaf ears is infuriating and isolating. It is as if you are standing alone on a small island in the middle of the Pacific.

I took matters into my own hands and advocated for myself. I found a cardiologist that was willing to do an echocardiogram on me. It was discovered that I had a birth defect in my heart. One that has existed for 45 years yet went undetected. A heart catheterization was performed and it was found that my heart was in severe failure. Within several weeks, and two days after my 46th birthday, I was laying on an operating table having a 13 hour open heart surgery. I was put in hypothermia. Portions of my aorta and my heart were replaced.

All of this for someone who three weeks prior they could find no medical reason for my daily struggles – a condition that has existed for 46 years!

I survived that heart surgery, but had a complication that has haunted me relentlessly ever since…24 hours a day, 7 days a week, 52 weeks a year, for over 5 years!. Every heartbeat resonates throughout my body. It starts from my stomach, sends a thrill up my chest, pounds against my sternum, and vibrates up my esophagus to the top of my head. This happens 60 to 80 times per minute. To say that this is a challenge to live with would be an understatement. It’s difficult to sleep at night; it’s difficult to focus during the day. It’s a challenge some days to make it through the day. If I am upset or get excited the vibration becomes even more pronounced and more frequent. So you spend your days trying to remain as calm as possible. You try to distract yourself.

You are repeatedly told by medical practitioners that it’s no big deal. You try to convince yourself that you can live like this. For five years I persevered through this daily torment.

In July 2015, I again get the sensation that something is terribly wrong. I start having difficulties walking to the point that I can’t walk across my house without pain. I repeatedly seek the counsel and wisdom of my doctors. A few miscellaneous tests are conducted, and again I am dismissed and told that there is nothing medically wrong. I am instructed to “push through” the pain in my legs and to “dismiss” the feeling of uneasiness and mortality being in my near future.

Seven times I return to the physicians begging them to listen to me, begging them to be more proactive. Again, I am dismissed and told that “there is little to no likelihood of anything being clinically wrong with me”.

I make one final attempt. I visit my physician and beg for her assistance. I plead that I’m dying and I need her help to figure out what is wrong. Clearly, she just thought that I was some crazed 51-year-old woman or a hypochondriac that is becoming a pain in her backside. The next day I have an “event”. I lose vision in left eye for several minutes and I have difficulty speaking. I can think my thoughts, but I can’t speak them. I go to the ER and they discover I’ve suffered a TIA or mini-stroke. I’m told that I can try to address it on an outpatient basis or if I want, I can be admitted to the hospital. I explain to the ER physician that something is terribly wrong and that I’ve been begging my medical support team to listen for five months. He agrees to admit me and run several tests. From there the shit storm begins… every single day reveals a new piece of the puzzle. It starts with my carotid being 100% occluded…that’s right…my carotid is 100% blocked for 6 inches. From there it is discovered that both of my legs are loaded with emboli. My husband and my advocates continue to push for answers.  They were relentless. It was their tenacity that saved my life. After much prodding, additional tests were completed that revealed that I had a large thrombus sitting on my heart. I am kept in neuro ICU as they attempt to dilute the clot with intense IV medication. I am woken every hour for days, weeks, as they attempt to determine if I’ve suffered another event. I am on death watch.

It is difficult to explain what it’s like being on death watch. The hours tick slowly by. Waiting for something to happen. Praying that something will not happen. You start to analyze your-life. The choices you’ve made, the experiences you’ve encountered. The thoughts become overwhelming. Facing your own death is extremely difficult. At some point you have to detach. It’s almost like you’re having an out of body experience. The feeling of eminent doom is overwhelming. Doctors are skeptical when they look at you; after all, I looked totally “healthy”. But then they would read my chart and a sense of gloom would cover the room like a blanket.

One doctor told me “you’re the best looking patient on the floor, yet you are the sickest -no one would know you’re sick by looking at you”.

img_4637

Being wheeled into my second open heart surgery.

 

I cannot put into words the feeling of frustration and hopelessness when you know something is drastically wrong but you’re being routinely dismissed by medical professionals and others just because “you don’t look sick”. In the months that preceded my trip to the ER I told my husband and several of my close friends that I was dying. I was not overdramatic; it was just a statement of my truth. I could feel my body shutting down. Yet no one would listen. No one seemed to care. And the fact was, I was right. Slowly pieces of my body were succumbing to the plague that riddled them.

Things became very critical and it was necessary for me to undergo open heart surgery for the second time. This was my only hope, my only chance I had for survival.img_4283 I wanted to survive. Once again, one year ago today, I would undergo my second open heart surgery. My chest would be split open and my heart exposed for all to see. My prize for being ignored was I got to spend my Thanksgiving in the cardiac ICU fighting for my life. There was no turkey, stuffing,  sweet potatoes or pumpkin pie on my Thanksgiving Day. Instead,  I was intubated with chest tubes, arterial lines, catheters, and pacing wires invading my chest, arms, and neck.

As I slowly gained consciousness, I recognized the pain in front of me. I had met it before. There is not enough dilaudid to make meeting that pain any easier. The pain is like an avalanche roaring toward you. You can’t run from it when you see it coming. It overtakes you and buries you, smothering you and sucking the oxygen out of you. It was hard to wrap my head around the fact that I was being forced to endure this life altering event again. The pervasive thought was that this did not have to happen.  My heart would be physically repaired, but the mental and physical pain, anguish, and devastation would linger.

The frustration of screaming, and no one listening, would remain. The loneliness of being stranded on the island would leave scars.

Today, in my reflecting, it crossed my mind that my experience is not much different than those that struggle with mental illness, especially those that have an eating disorder or anxiety. An eating disorder is a mental illness with physical manifestations. My constant “vibration” which plagues me 24 hours a day, is not unlike the invasive thoughts that plague those struggling with an eating disorder or hound those that suffer anxiety… 24 hours a day, seven days a week. Relentless. Daunting. Paralyzing. The fact is…

You cannot always determine whether someone is struggling with mental or physical illness by looking at them.

Patients and families with sick children repeatedly seek the counsel and wisdom of medical professionals in the hopes of saving their life, but are routinely told “they look fine”, they don’t look sick, their labs are fine, all tests are normal, this is just a phase, let’s just observe over the next few months, etc. The daily struggle and frustration of trying to get someone to help, someone to listen, when you know your body or your child’s body is shutting down is difficult to put into words. You just want to scream and yell “I am dying! Why won’t anyone listen to me?”. This is much like the situation that Candy Miller in Texas encountered when trying to secure medical assistance with her daughter, Lacey Smarr. She took Lacey repeatedly to medical professionals and hospitals searching for answers, for guidance, for life-saving treatment. She even suggested her daughter may have an eating disorder. No one truly listened. After all, she looked fine. The next day, the day after her 15th birthday, her daughter suffered a cardiac event that would take her life. An event that could have possibly been prevented had someone taken the time and the energy to truly listen.

When we listen and take a thorough medical history we can hear the answers that we cannot see.

Please be clear, I am not blaming medical professionals for not “seeing” the illness in front of them. I am not blaming them for not being educated about eating disorders or mental illness because in all reality they may not even know they need to be educated, What I am blaming them for is not listening to the families and patients that come to them seeking their wisdom and their guidance, that are looking for intervention and support. I am blaming them for not truly taking the time to listen and understand the history. If you take the time to take a comprehensive medical history from your patients and truly listen to them the answer is there. It is slapping you in the face. It cannot be ignored. Much like my own experience with my heart, the answer was there. I even provided the answer, but no one took the time or energy to listen.

There is no greater frustration or pain than being routinely dismissed and invalidated when you know something is horrifically wrong and you are facing your death. Just because a patient does not look sick does not mean they are not ill, that they are not in a critical health crisis.

Today, I’m going to start speaking through this blog in the hopes that I may be heard. I will continue to support and fight for family and friends, but I am also going to start advocating for myself and speaking my truth. It turns out, that I have a lot to say. This has been exacerbated by the fact that the vibration that has plagued me since the first heart surgery has become even more pronounced, more invasive. I am not going to lie. The recover from this second surgery has been extremely difficult.  There have been many setbacks and challenges.  They continue today. The bottom line is, this did not have to happen. Had someone taken the time to really listen to me, to hear me, this may have all been avoided. So today, I implore you to speak. Please know that there are others out there, like me that understand what it’s like to not be heard. Please know that I am listening and if you continue to speak, maybe others will hear your voice.

 

For information about heart conditions, please contact the American Heart Association.