Social Impact Authors: How & Why Melissa Mullamphy Is Helping To Change Our World
An Interview With Edward Sylvan
My goal in writing this book is to keep the promise that I made to my mom … to share her story, so others don’t go through what she and my family went through. I want the reader to understand they have a say in their loved one’s care or (their own care), and even though they are not on the healthcare provider’s payroll, they are a vital part of the patient team. Each chapter ends with what I learned and what I suggest the reader does (tips). The entire book is full of raw and actual events that changed my mom’s care and, I’d say, the ultimate outcome.
As part of my series about “authors who are making an important social impact”, I had the pleasure of interviewing Melissa Mullamphy.
Melissa Mullamphy does not want others to learn the hard way as she and her family did during her mom’s 8-month battle with ovarian cancer. Melissa is passionate about patient advocacy and helping others find their voice in a complex and increasingly dangerous healthcare system. Melissa has had many jobs in her life, from corporate America to psychiatric emergency rooms but nothing could prepare her for watching her mother suffer from medical mistakes, miscommunication, and errors. This book as is raw as it gets as a memoir/self-help.
Thank you so much for joining us in this interview series! Before we dive into the main focus of our interview, our readers would love to “get to know you” a bit better. Can you tell us a bit about your childhood backstory?
I was raised about an hour from NYC in a blue-collar home. Both of my parents worked, and I have one sister that is four years older than me. My Dad worked as an operating engineer during the day when he was not laid off, and my mother worked for 40 years as a waitress at night. My childhood home was roughly 900 square feet, and my sister and I shared a room until she moved out in bunk beds. I would consider us a lower middle class to today’s standards, but we never went without anything. We had chores and responsibilities, and my parents did the best they could for both of us. We are a mixed “breed” as far as ethnicity (Sicilian, Italian, French, Irish, Scottish, German, Welsh, American Indian, and according to Ancestry.com, a little Swede). I wasn’t exactly great academically. I did what I had to do to get by. I started playing the drums in 4th grade even though my request was initially rejected because I was told “girls don’t play the drums and handed a flute). After trying with no success for many months, my elementary school band teacher heard how bad I was and told me to buy myself a pair of drum sticks, and I was first chair in percussion throughout most of my school band experience. I was the first and only girl. This was pretty much the start of my lifetime theme or personal brand; It is not uncommon for me to go against social norms or standards. I have been told I can sometimes be too direct, but I have a big heart and an excellent resource to have in your corner. This is sometimes to my detriment because I put myself last.
When you were younger, was there a book that you read that inspired you to take action or changed your life? Can you share a story about that?
I honestly can’t think of one except Modern Drummer magazine because I thought I would become a rockstar. That’s all I wanted to be.
Can you share the funniest or most interesting mistake that occurred to you in the course of your career? What lesson or takeaway did you learn from that?
I worked 20 years in a Fortune 500 company that Berkshire Hathaway purchased. It was in the reinsurance industry, General Re. How I got there is an entirely longer answer, so I’ll table it. I started my career as an administrative assistant and worked my way up the ladder. While I tried to “fit” into corporate norms during my early and younger years, I still had those rock star goals and New York attitude. I also had a master’s degree in counseling psychology and saw the job at Gen Re as a good-paying job until I got a better job in the field of mental health or I became a rock star. Neither happened, and I stayed at Gen Re for 20 years. In my early and younger years in the walls of corporate America, I was once caught looking through the want ads at my desk by a Vice President. She commented and tried to coach me and tell me that it wasn’t a good “look” out in the open (cube life). My answer was, “I was on my lunch break and could do what I wanted while I ate at my desk.” She and I became very good friends and, to this day, 20 plus years later, joke about my behavior and attitude. I ultimately became a Domestic Operations Manager and had a great career at Gen Re.
Can you describe how you aim to make a significant social impact with your book?
My goal in writing this book is to keep the promise that I made to my mom … to share her story, so others don’t go through what she and my family went through. I want the reader to understand they have a say in their loved one’s care or (their own care), and even though they are not on the healthcare provider’s payroll, they are a vital part of the patient team. Each chapter ends with what I learned and what I suggest the reader does (tips). The entire book is full of raw and actual events that changed my mom’s care and, I’d say, the ultimate outcome. My goal is to share transparently, peel off the scabs of my grief, help others understand how to advocate for those who can’t advocate for themselves, and understand that although academia says grief comes in stages, we are all different. There is no right or wrong way. Even with a fancy degree, I failed at it miserably.
Can you share with us the most interesting story that you shared in your book?
I wouldn’t say interesting, but one of the most pivotal parts of my mom’s journey fighting cancer was when she was poisoned by chemotherapy. It was a four-day regiment inpatient. My sister texted me on day one and said it was terrible, and I immediately left my job after googling the medicine to look up the side effects. When I arrived at the hospital, my Mom had every symptom except coma and death. I called the oncologist to come to her bedside because it was a four-day weekend, and I knew he would be unavailable until Tuesday. He came and convinced us that my mom was okay and told me to “stay off the internet.” (white coat syndrome). My mom just wanted to get it over with and agreed to continue. The next day one of the flour nurses called me and stuck her neck out and would not start her chemo orders because “this was not the Connie that she knew.” (One of the tips I say numerous times in the book is to befriend your nurses because they are close to the most important person on the patient team and can make or break your care). I ran over to the hospital and found my mom in terrible shape. One of her oncologists’ partners came and gave my family a pep speech that “for Connie, we were going for a cure, and this was normal side effects, and she was fine.” Again, we, unfortunately, agreed (as did my mom) to continue treatment, so the second bag was hung. Sunday morning, I went first thing and found my mom flat, throwing up and close to aspirating on her own vomit. At that point, I lost my mind. My sister and I spent the rest of the weekend with her as every time she moved any body part, she threw up. She was hallucinating, delirious, and had tremors, mental confusion, non-stop vomiting, and ataxia. On Monday afternoon, her main oncologist showed up. My Dad and my sister were there. We thought she was dying. I was standing by the bathroom, and he looked at me and said, “you were right; she is toxic.” I googled it. That was his job. My mom remained toxic for two weeks that she has no memory of, and a priest was called three times to the bedside. As I write in Not in Vain, A Promise Kept, any hope or jump in her step that she had post-op was gone after this event.
What was the “aha moment” or series of events that made you decide to bring your message to the greater world? Can you share a story about that?
I was angry for a lot of years. If I’m honest with myself, I’m still angry, but it doesn’t consume me. The event explained above is just one of many that happened with regularity. What happens to the people that have nobody? What happens to the patient who doesn’t understand their rights, medicine, prognosis, treatment options, and the ability to have a say in their care? All of the physicians and healthcare facilities in the book are anonymous, but there is not one bit of fiction. It is not an easy read but a necessary message to let people know what can happen and what will happen if you don’t pay attention. I also had a private conversation with my mom one night late when she was having yet another side effect of cancer, and I told her that I would one day share her story to help others. At that time, I didn’t think she would die, I still had hope. She lost the battle, but I needed to keep my promise to her, and I did.
Without sharing specific names, can you tell us a story about a particular individual who was impacted or helped by your cause?
I have spoken and helped many people find their voice in the caretaker role. Unfortunately, at 51, I’m at the age where many are starting to lose their parents, and I do get calls or texts for advice. I’m happy to give it. If I can spare one person any unnecessary pain and suffering it is time well spent. I’m not the first to lose a loved one to cancer and won’t be the last but I promise you, in sharing my mom’s story I am helping people. In addition, I added a chapter about my grief and self-sabotage after my mom passed away to let the reader know that even those with fancy degrees that ran counseling group therapy, worked in psychiatric emergency rooms, step down houses, and understood medications and their potentially addictive nature, I suffered in silence because I thought I was too smart to get help when it was the exact opposite. I have also become somewhat of a magnet for unfortunate healthcare experiences. If I’m asked for help I try my best to not play doctor because I am not qualified but I will always say get a second opinion. I met a lady once that had a tumor behind her eye that needed to come out. She went to two prestigious oncologists in NYC. One doctor suggested removing it through her scalp (top of her head) and the other suggested accessing it through her eye and hopefully saving the eye. She chose to get out through her eye and the eye was saved. The a ha moment was when one doctor made the analogy, “if you are moving out of your house do you take the furniture out the roof or the front door?”
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
Improve quality control and oversight in ALL healthcare.
Improve communication of medical malpractice occurrences and find ways to learn from them vs. just paying the family off.
Fund and require more patient advocates as third parties or consultants for healthcare facilities and long-term care centers. (they should not be employed by the facility that they are working as an advocate for) It is a conflict of interest, I had over 25 issues that occurred when my Mom was sick. The patient advocate was always empathetic and told me that the parties involved were talked to, it was investigated, etc., but I never saw any change.
Require more transparency in the cost of healthcare, medicine, and insurance.
Increase access to mental health.
Treat mental health the same as you would any other disease like heart disease or diabetes.
The entire role of a hospitalist needs an overhaul; the intent is a good one to streamline care, but they should be required to see the patient file and have a safe doctor/patient caseload.
Suppose your loved one is critically ill and has a multidisciplinary patient team (for example, a tumor board). In that case, the family (if they are present) should get the opportunity to participate in the meeting. I understand they would not be present for much of the conversation for liability reasons, BUT families and advocates know a lot that the care providers do not just by the way the system is set up. For example, if it is a cancer patient, wasting disease is a significant issue with treatment. They do not keep track of calorie intake as an inpatient. Food services throw the trays out. If I am in the patient room, I know if the entire day went by and only half of a Boost was drank because the patient was nauseous. Based on the patient, personality type, and generation, it is common that the patient does not want to be perceived as a burden. If I am in the room, I know this, and if they did not call the nurse because they had breakthrough pain, nausea, or difficulty ambulating to the bathroom. So much can be shared by family members and/or advocates if given a chance that can significantly help the treatment plan. Finally, mental health. When my mom was depressed and giving up, I knew it and the doctors taking care of her needed to know it so they could discuss the matter with her accordingly. I could go on forever, the main point is you have to be involved, or bad things happen. If the group is uncomfortable to have you present at the meeting, give the advocate or family the opportunity to send observations to the team for review. Communication is so important.
How do you define “Leadership”? Can you explain what you mean or give an example?
Lead by example. Lead with integrity. Don’t ask others to do things you can’t or won’t do. Treat the janitor the same as the CEO, I had a leadership role, and I did a lot of listening. I managed people with a lot more experience than me, and I approached the role with humility and learned a lot. I empowered my staff and did everything in my power to get them recognized for their work and rewarded.
What are your “5 things I wish someone told me when I first started,” and why. Please share a story or example for each.
School: C’s don’t cut it if you want to get into college. I never thought I was going to college until I realized that making 15 dollars to play a show in my heavy metal band in South Jersey wouldn’t pay the bills. Focus and take school more seriously,
Corporate: Sometimes, you have to put your ego in check. Everyone, no matter how up the chain of command, has a bad day, bad report, bad month, or bad performance review. After my mom passed away, my performance slipped a lot, mixed in with some medical issues. I was mad at the world, had very bad PTSD, weighed 115 pounds, and didn’t care. My employer put up with me and supported me for all of it and then some. After two years, I went from a manager for nine years to a staff. It was a massive hit to my ego. At the time, I was angry, embarrassed, and not very nice to be around. Looking back, I deserved it and then some. I say it in my book, and always had a great, patient, and understanding group management team that I’m forever grateful to. When I completed my book, I sent them all hard copies with my Christmas card. They know who they are.
When my Mom was sick: I wish I had stopped working so I could have spent more time with her. I had to work for many reasons and spent as much time as possible, but I would have had more time if I didn’t work. You can’t get time back.
Becoming an Author: I wrote a children’s book in 2018. I was very green and got taken advantage of by a publisher. Thankfully through my employer, I knew how to read a contract and got my money back because not only did they break the contract, they charged me a fortune. I got every penny back but had I not pushed, and I would have lost a lot of money. Read your contracts and do your research.
Writing Not in Vain, A Promise Kept: I have about five versions of the book based on my headspace at the time. I started in 2013 and published it in 2021. It worked out that I had a lot of starts and stops because the first versions were terrible. I wanted to be traditionally published, but it was already late in the game, so I self-published. I’m currently working through various channels to market and get speaking engagements. I have a lot I need to say.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
You need to get comfortable being uncomfortable if you want to make a difference in life. In Not in Vain, A Promise Kept, and in my blogs, you will see that I have no problem fighting for what is right. I try and live life with integrity and treat others the way I want to be treated. If something is wrong, I will not remain silent. Some may say this is not always a good quality, but it is how I’m wired.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. :-)
Malala Yousafzai. She demonstrated strength, grit, and leadership against all odds and succeeded and continues to try and help others. She is an inspiration.
How can our readers further follow your work online?
http://www.melissamullamphy.com Here is an example of a true story that happened to me in December: https://www.melissamullamphy.com/post/it-s-not-ok-to-die-alone-it-s-not-ok-to-let-a-human-being-suffer
This was very meaningful, thank you so much. We wish you only continued success on your great work!