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.

If it were Cancer…

 

To all patients, parents, families, friends, providers, clinicians, teachers, coaches, school personnel, and frankly, everyone, everywhere who has or knows someone with an eating disorder…

Cancer.quotes-If-it-were--CANCER--

It is one word.

One single word.

A powerful word.

When spoken, it’s a word that immediately elicits compassion, empathy, support, understanding, and action. It is one word that immediately garners the support of family, friends, a team of physicians, and will compel people to start walks, fundraisers, galas, go fund me’s, meal support, etc. Cancer will mandate that there be an army of warriors surrounding the family and patient as they walk this journey. And it should.

Cancer. A longtime friend recently posted this on his home page. His daughter is battling cancer. Of course, it immediately elicited my empathy and understanding. Offers of how can I help?

My friend is aware that our family had a loved one that struggled with an eating disorder. He understood that as a parent that this was the worst possible thing that could have ever happened to me. That I would have gladly taken the place of my daughter. That I would have given anything to bear her pain and suffering.  He understood that my journey of a child with a life-threatening illness was worse than my own two open-heart surgeries.

I messaged him and offered support. I shared how very sorry I was for what his daughter and his family were enduring. That I can’t imagine how difficult CANCER has been for them.

I was blown away.  What I was not prepared for was his reply…

“Actually you don’t have to imagine watching your child go through something like this. You lived it. Different disease but just just as deadly, and probably more difficult to treat. The leukemia my daughter has has a very well developed treatment protocol, that is used throughout the entire country, and there is constant collaboration between all of the treatment centers. I know that is not the same with eating disorders. Hell, you still have to fight to get it recognized as a disease, and not just some “silly little girl who won’t eat.” To me your battle seems harder.”

My conversation with my friend caused me to do a lot of reflection. Having a loved one battling an eating disorder is much like battling cancer. It is one of the most challenging and most difficult journeys of our life. Some of us may be battling to get a diagnosis; others of us may have been given a diagnosis but are trying to understand what’s happening.

The difference with eating disorders is …No one is provided with a handbook on how to heal your loved one from an eating disorder. Follow this protocol. Instead we’re left with minimal guidance, minimal support, lots of questions, no direction, a lot of confusion, and no respite care. There are conflicting messages everywhere.quote journey final

You, or your loved one, are a shell of their former self, and barely recognizable. As a parent, you’re doing everything you can to provide care, support, and try to understand what the hell is going on. You just know that a terrorist is holding your loved one captive. In fact, he’s holding your entire family captive.

When our loved one has an eating disorder,  it’s like the whole family has an eating disorder.

What is the answer? How can we help ourselves or our loved one navigate this journey with an eating disorder? How can we help others understand this journey?

When I was walking this journey with my loved one, it really helped me to reframe every step of the process in terms of cancer. If it were cancer…

The thing that is important to quickly understand is that food and stopping behaviors  is their chemo. Without chemo they will die. Without food, they will die.

Every decision, every action, every statement needs to be addressed in terms of cancer.

If it were cancer…

If it were cancer… Would it immediately evoke empathy, compassion, support, and action?

If it were cancer… Would you think you or your loved one chose it? Would you think they could just stop?

If it were cancer… Would you allow your loved one to refuse the medicine or the treatment?

If it were cancer… Would you think that it was a phase? Would you think that it would just go away?

If it were cancer… Would you think they had a choice? Would you tell them just to eat?

If it were cancer… Would you negotiate whether or not they need chemo? Life-sustaining medicine. Food.

If it were cancer… Would you run cancer around life? Or life around cancer?

If it were cancer… Would you hesitate to quickly assemble a multidisciplinary team? Would you hesitate to find the best practitioners in the country? In the world?

If it were cancer… Would you be concerned about geography? Would you care if the treatment were in your state… or would you travel across the country without question?

If it were cancer… Would you even think about school? Would you be concerned about graduations, or college applications, and whether they graduate with their twin?

If it were cancer… Would you search out the best possible program? Or just go with one that’s closest?

If it were cancer… Would you allow a provider to wait a month, two or three until the next appointment? What you wait until next week to call for an appointment?

If it were cancer… Would you schedule treatment around holidays, vacations, school, or summer camps?

If it were cancer… Would you postpone treatment a few weeks? Would you think it won’t make a difference. Or would you start today?

If it were cancer… Would you continue competitive sports, dance, and exercise? Or would you rationalize that their body needs rest, needs to heal, and restore strength and energy to fight this demon?

If it were cancer… Would you accept partially healed? Or would you push for full recovery/remission?

If it were cancer… Would you hesitate to share with family, friends, or your entire community?

If it were cancer… Would it matter if they were 12, 18, or 30? Would the fact they were over 18 keep you from insisting they complete treatment or take their medication? Would the fact they were 18 even enter your mind? Would you even consider their adult status when mandating them to complete chemo and radiation?

If it were cancer… Would you let them leave the treatment program before the chemo was complete? If 10 chemo treatments were prescribed, would you let them stop after five?

If it were cancer… Would you postpone or delay treatment because they’re looking a little better? Would you think maybe this is a phase? Maybe they don’t need treatment? Would you even care about the way the looked?

If it were cancer… Would you let them forgo the chemo because it caused them distress and made them sick?

If it were cancer… Would they leave treatment and go right back to school and life? Or would they automatically be allowed time for recovery?

If it were cancer… Would you negotiate treatment at all? Or would you lovingly and definitively state treatment will save your life… It’s not an option.

If it were cancer… Would you let them go to college? Would you let them finish the semester and rationalize it’s only three more weeks? Chemo can wait.

If it were cancer… Would you postpone an intervention?

If it were cancer… and your loved one called right after they started treatment and said I hate it and I want to come home, would you let them? Would you pick them up and allow them to leave AMA?

If it were cancer… Would you care what friends, family, or neighbors said or would you just be focused on getting your loved one well?

If it were cancer… Would you accommodate it or do everything possible to eradicate it?

If it were cancer… Would you be passive or would you be aggressive?

If it were cancer… Would you allow them to drive a car when they were so sick from undergoing chemo treatments?

If it were cancer… Would you validate their distress, yet still require them to undergo prescribed treatment? Or would you let the treatment stop?

If it were cancer… Would you be angry at your loved one? Would you lose your temper?

If it were cancer… Would anyone in the family be upset or angry? Would there be any hesitation to support the family or the patient?

If it were cancer… Would you remember that you have to take care of yourself, so that you can take care of your loved one?

If it were cancer… Would you ever blame yourself? Would you ever think that you caused the cancer?

If it were cancer… Would you be proactive and diligent about following up with your team and providers? Or would it not even be on your priority list?

If it were cancer… Would you and your spouse or ex be working together to eradicate the cancer in your loved one? Or would you be feuding on how to navigate?

If it were cancer… Would you go against the treatment team’s recommendations? Or would you think it’s not that serious, we will wait to seek a higher level of care?

If it were cancer… Would you accept the first medical practitioner recommended? Or would you ask questions and seek out the best?

If it were cancer… Would you ask me or my loved one how did you get cancer?

If it were cancer… Would you validate the struggle? Or would you judge and interrogate?

If it were cancer… Would you be empathetic? Or would you say “just eat” or “quit purging” ?

If it were cancer… And a clinician did not appear educated, would you stay? Or would you seek new expert care?

If it were cancer… Would you have done anything different? Would you have taken a different path?

If it were cancer… Would you accept any treatment to stay alive? Or would it be a battle just to get you in treatment?

If it were cancer… Would you understand why your family is so scared?

If it were cancer… Would you tell your family?

If it were cancer… Would you understand why your family wants to support you? Why they want to be involved?

If it were cancer… Would you tell them it’s none of their business? Would you tell them to walk away? Would you tell them that you can do this on your own?

If it were cancer… Would you refuse treatment? Would you battle your family? Or would you listen?

If it were cancer… Would you understand why your family wants you to be diligent in your recovery? Wants you to have the support of a team?

If it were cancer… Would you think your family is trying to control you?  Would you think that your family is trying to smother you? Or would you think my family really loves me?

If it were cancer… Would you allow your family to hold your hand as you navigate treatment?

If it were cancer… Would you allow them to comfort you when you’re struggling?

If it were cancer…Would you allow family and friends to love you? To hug you? Or would you isolate?

If it were cancer… Would you trust them and want them to help carry your pain?

If it were cancer… Would you run to them or from them?

If it were cancer… Would you listen to their concerns and their fears?

If it were cancer… Would you understand that this is the most terrifying thing that has ever happened to your family? Would you understand that their fears are justified?

If it were cancer… And your student needed to miss school would you hesitate to allow them? Or would you do everything to support them until the school can wait?

If it were cancer… Would you allow virtual school at home until they were recovered and fully in remission?

If it were cancer… Would you penalize them for missing school?

If it were cancer… Would you do everything to support the patient help them reintegrate into school? Or would you saddle them with unrealistic expectations and burdens?

If it were cancer… Would you send cards and bring meals? Would you offer to help?

If it were cancer… Would you offer to watch the kids so the carers could get a night away?

If it were cancer… Would you unite the neighbors, school families, and church members to support the family and the patient? Or would you look the other way? Would you do nothing?

If it were cancer… Would you continue to speak to those affected about your diets, workouts, latest health craze?

If it were cancer… Would you quit asking the patient to babysit because you were afraid your children might catch “it”?

If it were cancer… Would you reach out to the family if you had not heard from them for a week, a month, a year? Would you express concern and offer support?

If it were cancer…Would we be demanding more research? More funding? More grants and scholarships? Would we accept “no”?

If it were cancer…Would nations, organizations, and populations join hands to eradicate?

If it were cancer… Would you hesitate to give your employee time off? Or would you offer them to take all the time their family needs?

If it were cancer… Would you hesitate or refuse to cover treatment? Would you tell the patient or the family that treatment is not “medically necessary” and deny insurance coverage?

If it were cancer… Would you tell the patient and the family that they need to fail at a lower level of care first before insurance will cover prescribed treatment?

If it were cancer…Would you ignore the prescribed treatment of the treatment team and allow the insurance company to determine what is best practice or best care for the patient? Would you follow the mandates by the insurance company medical director who has never met the patient? Would the public and media allow any such treatment of a cancer patient?

If it were cancer…Would a patient be discharged from care without completing treatment?

If it were cancer…Would continued coverage be reviewed every two weeks, week, or three days? Would chemo treatments stop if insurance denied?

If it were cancer…Would the patient or family be battling insurance while trying to save their loved ones life?

If it were cancer…Would treatment be denied by the insurance company?

If it were cancer…Would the entire team – family, friends, providers, and insurance demand early intervention and treatment? Would every one collaborate and communicate to ensure the action was swift and aggressive? And as prescribed?

If it were cancer… Would you let any newly diagnosed patient leave your office without appointments, materials, and support?

If it were cancer… Would you help the patient and the family find appropriate support and treatment? Would you do everything possible?

If it were cancer…and you weren’t familiar with that particular type of cancer, would you align yourself with a doctor who was? Would you tell the family I am going to help you find the best care possible?

If it were cancer… Would you tell the family that their loved one needs to do this alone?

If it were cancer… Would you ever tell the family that their support is not helping? Or would you teach them how to support the patient?

If it were cancer… Would you ever tell the patient they were “not that sick”?

If it were cancer… Would you do everything possible to support the patient and the family?

If it were cancer… Would you hesitate to collaborate with other treatment providers? Or would you feel it’s a necessity?

If it were cancer… Would you listen to the family’s concerns when they approached you?

If it were cancer… Would you schedule appointments in two days, two weeks, or two months?

If it were cancer… Would you hesitate to include the parents? Would you care if they were over 18? Would you let them decompensate because there was no release? Would let them refuse to take the chemo? Undergo treatment?

If it were cancer… Would you think it is serious?

The bottom line is eating disorders are just as deadly as cancer. In fact, without treatment, up to 20% will die. They have the highest mortality rate of any mental illness and they are the third most chronic illness in adolescents. Every 62 minutes someone dies as a direct result of an eating disorder… 23 lives lost every single day!

So as you’re navigating this journey yourself, with a loved one, with a patient, or with a friend, and you’re pondering what to do or what to say, how to support someone who is struggling, determining your next step, questioning what the right path is, please try to reframe it.

If it were cancer…

P.S. This post is not meant in any way to diminish the seriousness of cancer nor negate any families horrific journey with cancer.  It is intended to highlight the seriousness of eating disorders. Imagine if everyone treated eating disorders like cancer…

Written by Cherie Monarch, a mom who has lived this journey.   To contact author email:cheriemo@tampabay.rr.com

If you are caring for a loved one with an eating disorder, please join Mom2Mom – Eating Disorders Family Support Network or Dad2Dad – Eating Disorders 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.