The Patient and Family Advisory Council

Photo by L. Laguna

This summer, I had an appointment at my hospital. I had a negative interaction with a medical provider. It was not the worst in the world; it was not the best either. Initially, I decided not to share my feedback with the hospital, but I later opted to call and share my experience with its staff. My intention was to take a developmental approach to the situation. As the environment of this country has evolved in the past couple months, I felt responsible for doing what I can to make it better. The following is a statement I wrote as part of my application for the hospital’s advisory council for patients and families.

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Lunch with Lindsay: Health and the Workforce, Race in New England, and Pandemic Vacations

Yesterday I caught you up to speed with my life in Lunch with Lindsay: Schools During a Pandemic and Allyship During a Movement. Today I am continuing to discuss what else has been on my mind so I am sharing with you my most recent video above on health in the workforce, race in New England, and vacations in the pandemic.

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How Close Does Pain Need to Be to Impact Your Spirituality?

Last week I had a couple conversations with friends who were contemplating the impact that the pandemic was having on their spirituality.

Photo from Flickr

That’s not surprising. Whether someone is enduring a personal or global crisis, it’s not unheard of to have spiritual questions in the process. I should know. I’ve been through a wide array of thoughts, emotions, and questions since I started Saying Goodbye to My Body (As I Know It) with my breast cancer diagnosis. Over the past few months, I’ve replayed the chain of events that led to my diagnosis. Upon receiving antiquated and unhealthy advice that society gives breast cancer patients and survivors, I’ve managed hurt and anger while seeking both community care and self-care. As I’ve confronted the largest medical bills of my life, I’ve rethought the way gift giving and generosity are perceived in society. All of this mental processing is just what I call January.

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Too Busy to Play Telephone: Practicing Consent as a Lifestyle

During my first few weeks of recovery from surgery, my family visited me. My sister flew in a couple days before my mastectomy and stayed for a week. She overlapped by a day with my parents, who stayed in a hotel near my home for almost a week and a half.

By the end of my parents’ last visit with me, my mom raised the topic of how people didn’t know how to talk to me. That is why some of them hadn’t said anything to me about my breast cancer diagnosis.

For context, this is an issue that came up quite a bit after I was initially diagnosed. My sister asked what she could share. A few cousins asked what they could share. Somehow other members of my extended family aren’t sure what they can or cannot say about my diagnosis to others.

Some relatives wanted to share my story with others, and other relatives were saying that they shouldn’t. I heard this from a few different sources in my family.

My mom said that some relatives told others to “just pray” for me—or at least that’s the story in this never-ending game of telephone.

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Image from Flickr

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When the Caring Person Needs Care

More than a month and a half after I received my breast cancer diagnosis, I attended a support group for women who had all types of cancer. During the latter part of the session, a breast cancer survivor introduced herself and wanted to find out what brought me to the group. After learning that I was newly diagnosed with breast cancer, she gave me her contact information and offered to talk to me further about resources.

Within a few days, I emailed her, and we were able to talk on the phone a day later. She shared her story with me, outlined the challenges she faced, and provided advice for my next steps.

“Get a Keurig, ” she told me. I almost told her that I was a tea drinker, but I was intrigued by her specific recommendation. I asked her why she suggested a Keurig. Then she explained that people could serve themselves when they visited me. I wouldn’t have to worry about serving them.

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Photo from Flickr

Something about her recommendation sat with me in a funny way. I couldn’t put my finger on why. Then it occurred to me how much she had thought about serving other people when she had been the one in dire need during her recovery.

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Living Both Like You Have No Tomorrow and Like You Have a Century Left

As I get closer to my surgery date, my mind, heart, body, and soul have increased in their capacity to feel a wide range of feelings simultaneously—even when those feelings seem to be conflicting.

I want to live both like I have no tomorrow and like I have a century left.

One minute I’m eating a large breakfast of eggs, tater tots, and corned beef hash for comfort, and the next I’m sipping on a smoothie for its nutritional value.

One day I’m brainstorming all of the jobs, side hustles, and GoFundMe campaigns I will need in order to pay off my medical bills, and the next I’m planning adventures like Luisa in Y Tu Mamá También.

Do I want privacy, community, or intimacy? Do I feel like screaming, crying, or laughing? I don’t know. All of the above?

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Photo from Flickr

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To Manage My Tone or Not

If you’ve ever known someone with a serious health issue, chances are that person lied to you at some point. It might not have been a major lie, but they might have sugarcoated their feelings in one conversation or another.

Since I shared my diagnosis with in my social circles, people have connected me to their friend, family member, colleague, or other contact who has dealt with breast cancer. When I talk to the connectors, they emphasize how strong, resilient, and inspiring their contacts are.

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Photo from Flickr

Then I talk to their contacts, and I realize how much those contacts have lied or sugarcoated the truth for others in their lives.

I’m not here to do that.

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Redefining What It Means to Be Busy

A few months ago, if you had asked me to describe my life, I would’ve told you I was busy: busy transitioning to a new job, busy preparing a presentation for a conference, busy managing social media and moderating a panel for a board I am on, busy networking, busy hanging out with friends, busy dating (or deciding not to date), busy going to the gym (or deciding not to go to the gym), busy going to yoga, busy napping … busy … busy …. busy.

Now when I say I’m busy, I really mean it. Seriously, my life a few months ago felt like such luxury. I had many projects, tasks, and activities to manage, but I loved it all. I really LOVED my life. I really loved myself. When friends were asking me for life updates, I told them that I was the coolest person I knew. I meant that both seriously and not so seriously.

For friends who had known me a long time, they knew that I had gone through my share of unexpected adventures with job transitions, promotions at work and volunteering as a hotline counselor for a rape crisis center, relationship changes, deaths and health issues among people close to me, and my own health issues even before breast cancer.

People are used to me persisting. In some ways, I wonder if that’s why it’s hard for some individuals to understand how concerned I am about the future.

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The Art of Dialogue: What to Do When You Don’t Know What to Say

As many of you know, last fall and winter were hard for me because several important people in my life either passed away or were managing health issues that forced them to confront their own mortality. The following summer, I had to manage my own health scare with a visit to the ER. Thankfully, doctors were able to figure out that I needed an appendectomy. Fast forward to this winter, I felt a lump in my breast and found out I have breast cancer. Since then, I have been pretty real with myself and others about what that shock and mourning process have been like.

As I’ve opened myself up to sharing my experience, I’m learning a lot about myself and the world. I’m navigating medical appointments, healthcare bureaucracy, health insurance, financial implications, work life, home life, spiritual attitudes, body image, and self-worth in ways I haven’t before … That’s surprising to me because I already have had quite a colorful, adventurous, and unpredictable life. Just when I thought I couldn’t be shocked anymore, the Universe decided it was time to let me know that I had cancer growing inside of me.

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Photo from Flickr

Since I’ve shared more of my story, people have reached out and asked me about my situation.

That’s where things have gotten interesting.

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Rethinking Gift Giving: I’ve Been Doing It Wrong

Years ago, I was cycling between unemployed and underemployed for almost a year. Grant-funded job, unemployed, part-time job, temp job. I had every job, but one that was full-time with benefits despite my best job search efforts.

During that period, I saw a therapist. When I told her that I had to stop seeing her due to financial constraints, she insisted that I pay her on a sliding scale. I did that for a while. At a certain point, I started to wonder if I could make the sliding scale payment. Then I told her that the sliding scale payment was no longer feasible; therefore, I would stop meeting with her. She replied that I could start having appointments with her without having to pay the copay.

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Photo from Flickr

During one of those therapy sessions, I reflected on my financial situation and wondered if I would ever end up doing a fundraiser on GoFundMe like I saw one of my former colleagues doing online. Apparently, that former colleague had hit such hard financial times that she shared her GoFundMe campaign on social media. In her post, she explained how much she had to swallow her pride to do what she needed for her family. I respected that. As I explained her situation to my therapist, I could see her eyes get wide. She looked shocked and appalled. That is when I decided to drop the topic.

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