re/un/dis covering: A Q&A with Michelle Lapitan

My name is Michelle Lapitan, but most know me as Mish. My pronouns are she/her but I do not mind they/them. I am a graduate student at UC Berkeley’s Master in Social Welfare program, but am taking a break since I am undergoing treatment for a rare form of Non-Hodgkins Lymphoma. This past year, I have been focused on my healing by way of writing and photography. I just finished putting a book together, which documents my past year of treatment (and can be purchased here)! Currently, I am in the middle of an interactive portrait series where I take portraits and have participants hand write answers to “What does healing look like for you?” I can be contacted on my instagram, @mishlapi. Let’s collab :)!

How did it feel to document your own story for this project?

I was first diagnosed in 2000 when I was nine years old and, by the time I was thirteen, I had already experienced three relapses. I have very little of my own writing/documentation/etc. from that time, partly because I was young and partly because (I think) I felt that this was something I do not want to remember. Everything I have ever written around my cancer diagnosis and treatment as a child were written many years after I finished treatment and was in remission. I have bits and pieces written, I would blog every now and then, and I would talk about it sometimes with others, but again, a lot of this was shared after I finished treatment and after I had time and space to reflect on my own.

This zine/book was the most I have ever shared in one cohesive project and it is a compilation of pictures and reflections that I wrote while I was in treatment after my most recent relapse in November 2018. Originally, I was going to make a photo book of my self portraits documenting what I looked like during each cycle. As I went through treatment, I realized I was expressing and processing my diagnosis a lot, if not more,  through writing, journaling, doodling, etc. and I wanted to include that as well to show the complexities of cancer and the various ways I navigated this time.

When I did decide to create the book, the process of going through each page, sorting pictures, and putting it together brought out a lot in me. I was reliving whatever was happening in a picture or reexperiencing the feelings from the time I wrote something. It was overwhelming to see everything laid out and all at once and it would leave me feeling highly emotional that I would just have to stop and other times it was a cathartic release to the point where I felt empty.

I would like to think that how it is written and organized captures what it is like to experience cancer, or my experience anyways. It is unpredictable, a bit random and everywhere, kinda ugly, sometimes it’s sad, sometimes it’s really boring and slow, and other times I’m really happy and at peace with my life.

Your zine contains lists in many forms: from playlists to hand-written to-do lists to recipes to one hundred typewritten snippets from your journals. What drew you to list-making as a form?

I have a Virgo moon placement. Just kidding. During college, I began to experience “chemo brain” or “chemo fog” which is a term used to describe the cognitive side effects that some folks experience during or after treatment. My memory is a little wonky and I often take more time to process something, so I need to write everything down in list form because it keeps me organized, aware, and realistic of my time. I am almost never late. I have lists for the month, lists for the day, lists for my life goals. I recognize that it’s very micromanagy of me but it has helped me function and get through school, work, and daily tasks. 

The first list I wrote during treatment was a compilation of fifty things I or someone else has said to me during the first two months of my relapse. It felt more manageable to 1) write these statements down because they were just repeating in my head and 2) separate these statements into a list. It helped me sit with the many feelings I was holding by writing it out and breaking it down to smaller chunks. When I number a list or separate the bajillion thoughts I have in my head one by one, it makes it feel less overwhelming.

You write about a desire to capture the random and mundane things that took place during your ongoing recovery. Why is documenting dailiness important to you?

I have explained to my friends that I learned to sit with slowness and enjoy the really boring and uneventful days. If I was bored, I was thankful because it meant my body was not in crisis, I was well, and I was stable. I had treatment every three weeks and I had some minor issues, but a good chunk of this past year was spent mostly me waiting for treatment, resting in between, and being at home. People have asked me what my day to day looks like, and I just say “I do mostly nothing.” Which I don’t really think they realize how important nothingness really is.

A lot of the things that would be deemed mundane and trivial were actually really big for me. I have anxiety and this relapse only exacerbated it. I had the hardest time driving to the store, walking around the grocery store, and I would feel anxious in my own home. So the moments when I was able to cook in the kitchen by myself, drive, or go to the park and just sit seem really basic but were actually huge indicators to me that I was healing.

So many of your loved ones appear in portraits and candid photos throughout the zine. How have they reacted to the project?

I wanted to write and include more about my family, friends, and community that have supported me throughout my treatment. I didn’t share this in my book, but I literally have had someone visit me every week (or at least check in with me in some form) since my diagnosis. 

I know that some people will not read it or are not ready to read it because it’s too painful or raw for them, whether it’s because of their relationship to me or because their own experience with a loved one with cancer. I get it, it’s hard for me to even read it sometimes and I cannot imagine being an outsider and watching someone you love go through life in this way.

I hope the project allows them to understand me in different ways, instead of just through random check ins through text messages or in person. A lot of people don’t  realize I write a lot, even though I have been writing/journaling since I was 18. I think the book also forces them to sit and try to understand the many things I felt and experienced all at once. I also hope they see that yes, cancer fucking sucks, but I am also a being that is (fortunately) still able to live my life and do whatever I want (within reason, hehe).

I owe a lot of my mental wellness and emotional well being to those around me because this gets very lonely and isolating real quick. Most people in my life cannot understand what this is like, but I know they try their best to hold and care for me to alleviate the frustration and sadness I still carry. I joked with some folks to not buy my book because they already heard and know everything that’s in there — because they often were the ones that helped me process something before I journaled about it…

But they bought it anyways. 

What didn’t make it into the zine that you wish had?

So much.

  1. The difficulty in making decisions around treatment that may or may not align with your family’s wishes.
  2. Reading and trying to fill out an advance healthcare directive.
  3. I had sought out support outside the hospital and was in contact with healers, starting around April, that are based in the Philippines, Oaxaca, and Oakland. I wanted to write more about this since my work with them has really helped me get to a place of acceptance with my cancer. 
  4. Dating and/or meeting new people in general — how do I answer someone who asks me what I do or where I work? Do I disclose that I have cancer? 
  5. PTSD
  6. Navigating the hospital and advocating for yourself — I have pushed back and yelled at many health professionals.
  7. The ridiculousness of the healthcare system and the costs of treatment.
  8. My hesitancy in allowing my friends to fundraise and create a gofundme for me.
  9. I wanted to annotate my lists to explain each sentence further and I also have a document that explains my playlists more in depth.
  10. My experiences in oncology as an adult versus a kid.
  11. The things I did and/or my friends and community did to accommodate me to make me feel safe, less anxious, and more comfortable. For example, I turn my location on (on my iPhone) for some of my friends if I am driving somewhere alone. My friends check in with me if I need to leave or need anything if we’re at a public area. I let most people know that all my emergency information is in my medical ID in my phone. 
  12. All the fun things I did that made me feel like “I’m still a normal person.” 
  13. The anxiety I feel in trying to reintegrate back into the world.
  14. The relationship with my body and learning to regain trust and safety within it.
  15. The dark, silly humor I have to lighten situations. “They said they ran out of boba, should I tell them I have cancer?

Guess part II will have to happen…

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