Meet the Experts

Dear Burn Community,

We are so excited to introduce Journey Magazine's advice column. In each issue of the magazine, a panel of experts and veterans (that’s us) will respond to a variety of questions from anyone in the burn community (that’s you).

We’ll draw on our own personal and professional experience to offer guidance, and we’ll do our best to make it good advice! Just remember that our opinions and views can never replace the diagnosis, treatment, or care of a licensed physician or mental health professional.

That said, no question is off-limits. Odds are, someone else is facing a similar challenge, and submitting your question will help them too. Our goal is to create a space where you can get honest answers to hard questions, learn from others’ experiences, and find hope in the knowledge that you are never alone.

If we don’t have an answer, we’ll find someone who does. Each issue, we’ll be joined by guest experts to tackle topics outside our areas of expertise. From legal options to makeup techniques and everything in between, we want to know what’s on your mind.

Today, our focus is introducing the column—and ourselves!—but we wanted to give you a taste of what to expect from future issues, so we all chimed in with our thoughts in response to a question from the Phoenix Society staff.

Next time, we’ll put our heads together around your questions. We can’t wait to hear from you!

Sincerely,

Dr. Lise Deguire, burn survivor + clinical psychologist

Samoana Matagi, burn survivor + Phoenix SOAR peer supporter

Dr. Felicia Williams, burn surgeon + member of Phoenix Society's board of directors

Samoana Matagi: Remember, this is a marathon, not a sprint. If you plan for a longer recovery and it turns out to be shorter, that's a pleasant surprise. But if you plan for it to be shorter and it goes longer, we tend to lose patience.

Dr. Felicia Williams: We all struggle with the loneliness and forced separation. There are shirts that say, “I have been practicing for social distancing my whole life.” I am one of those people, and still I miss going to restaurants and stores whenever I wanted to. I miss having meals in person with friends.

Our responsibility as healthcare workers makes it impossible. We don’t only live for ourselves and our families and our friends—we live for potentially everyone. We have knowledge and skills that require we hold ourselves accountable and not take risks that many others can. We may be the only people with the skills to help others and lend aid.

No matter how much I miss the human contact (that I now know I took for granted), I will continue to practice social distancing and wearing my mask in order to protect those I love and those I am responsible for (everyone).

Dr. Lise Deguire: Many people are hitting a COVID wall right now. They are sick of staying home, the weather is not conducive to walks, visiting friends outside is tough, and we don't even have the holidays to look forward to anymore. It has been a cold and dark winter.

Keep your eyes on the prize: vaccines are coming. They aren't coming as fast as we’d like, but they are coming. As much as these days are dreary, there is plenty to look forward to. And we will get there! Maintaining that hope is vital. Hope helps us continue to take good care of ourselves and make good choices for our health.

Meet the Experts

Tell us about a pivotal moment in your own past.

I was burned in 1967 when I was four years old. In my twenties, I stopped having procedures, and set off to live my life as best I could. At that time, Phoenix Society had only just begun, and I didn't know anything about it.

A few years ago, I learned about the new laser procedures and began having lasers done at the Lehigh Valley Burn Center. After being disconnected from the burn world for decades, I became reconnected with the community.

I attended my first Phoenix World Burn Congress ever two years ago, and it was such a joyful, connected experience. I feel much more peaceful and connected with my survivor community now. It makes me happy to know people who understand my journey, and to be able to help others going through the same challenges. In some ways, as a Shriners' kid, that burn unit was my home. Somehow, I feel like I have come home again.

What are some current growth areas in your own life?

Right now, I am working harder than I have ever worked. I see patients four days a week in my psychology practice. The other three days, I work on writing, speaking engagements, and promoting my book, Flashback Girl: Lessons on Resilience from a Burn Survivor. I pretty much never take a day off.

My area of growth is how I talk to myself about this constant work. I used to say: "Today I have to do 7 things," and it always made me feel so tense! Recently, I changed this to: "Today, I choose to do 7 things." Changing that verb from "have to" to "choose to" immediately relaxed me. It reminds me that I want to work and I am blessed to have meaningful work to do.

As a member of this advice panel, what do you hope to contribute?

I have my doctorate in clinical psychology and have been treating patients for 30 years. I bring a wealth of experience to psychological issues such as self-image, relationship problems, anxiety, depression, parenting, etc. Recovery from burns is both a physical and an emotional journey, which gets better but never fully ends. I hope to share clinical expertise and my own life experience, and offer a trusted source of information for tough questions.

What’s the worst advice you’ve ever heard?

I have had a lot of unwanted advice on how to look my best. The worst advice I received, repeatedly, was how great I would look if I just wore turtleneck sweaters all the time. It is true that turtlenecks would hide most of my scars. But I don't think hiding what I have been through would be healthy for me. The healthy choice for me was to learn how to hold my body with self-care and dignity, and not to hide away pieces of myself.

Tell us about a pivotal moment in your own past.

One pivotal moment in my past was the moment I made the choice to fight! I had been burned at work by electricity and it cost me my hands. Then I stayed in the safety of the hospital for two months.

I left the cocoon of the hospital and got home. I sunk into depression and didn't want to do anything. I was spiraling deeper into that depression, and then I somehow gathered the courage to fight. I decided to get over my fears and reach out for help.

What are some current growth areas in your own life?

I'm trying to learn to balance the importance of serving myself with that of serving others. I tend to be more motivated to help others than help myself.

As a member of this advice panel, what do you hope to contribute?

I simply want to contribute my story because I know that hearing others’ stories brings hope. Hope is often essential in recovery from anything. I hope that my story brings courage and hope to people that are going through any stressful situations.

What’s the worst advice you’ve ever heard?

I'm a double hand amputee, so my prosthetics really can't feel heat. My worst advice was every time a waiter brings a hot plate to my table and tells me, "Don't touch! Hot plate!"

Tell us about a pivotal moment in your own past.

The moment I saw my mentor during residency cry for the first time ever. She was the strongest, toughest, smartest surgeon I ever met, but she wasn’t afraid to show emotion. I still believed for a while that it was a sign of weakness. Then I lost someone very close to me unexpectedly. It crushed me.

The person I became after that was no longer able to hide her tears. I cry with patients and families too often. Unfortunately, I am a VERY ugly crier. Despite knowing that, I end up crying more instead of less because I don’t necessarily want to keep crying. I am a great surgeon, and I love what I do, but I care, and I connect with my patients and their families. If that means I will cry, then get ready.

What are some current growth areas in your own life?

I am currently working on stress management and being more mindful. I am working out more and dedicating more time to building habits that promote emotional growth.

As a member of this advice panel, what do you hope to contribute?

I hope to contribute hope. I hope that I encourage a commitment to patients, the field of burns, and to the community. I hope to answer questions about the challenges during the acute hospitalization. I hope to positively contribute to the community and forum about operations, materials, burn injuries, nutrition, scars, critical care… I hope to help people in any way that I can.

What’s the worst advice you’ve ever heard?

Don’t treat the pain so that the consultants can see the problem. Umm, no! As an intern, I would be called to the Emergency Department to see an acute appendicitis, and the ED physician would say, “We held off giving pain medication so that you can see they have peritoneal signs.” Meanwhile, they have ALL of the signs/symptoms, history, and a CT confirming the diagnosis.

Or even later in my career, “as needed” medication was held to show that scheduled medication needed to be increased. Meanwhile, the patient is itching or in pain or anxious. The power to withhold is as strong as the power to give or heal. We must remember the patient should always come first, and that was what was so bad about that advice.

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