May 12th, 2020 was the last time I sat down to write to you, or in fact write in general. I could say I have been busy, or the combination of my treatments and seizure drugs have made me too fatigued to write, but that wouldn’t be the full truth. To be honest, I don’t know why I haven’t done any writing. Usually, an idea pops into my head that I need to jot down, or eventually my fingers feel a need to type whatever thought or emotion I have been holding inside, but that hasn’t been the case for over seven months. As we approach the new year, I have slowly come to realize that with all that has been going on in the world, I perhaps subconsciously did not want to add another layer of emotion on top of what has been such a tumultuous year. Today, however, I want to write. Not about the past (although I will weave in updates), but about my hopes for the next year…my new year’s resolutions for 2021.
Stay consistent with my physical therapy, adopt better sleep patterns, and read more:
Yes, these are three resolutions, but I group them together because they relate to improving both my physical and mental health.
As you may remember, over a year and a half ago, I herniated my lower back spinal disc. I have been through two brain surgeries, years of regaining movement on my right side (twice), seizures, headaches, etc., but I think it is fair to say that the nerve pain I experienced in April 2019 throughout my left leg was the worst pain I have ever felt. While the nerve pain has subsided, I am still dealing with lower back pain, and recently, mid-back spasms. A lot of this is due to a lack of stretching and strengthening my core, glutes, and other important muscles. When I was 12, my physical therapist had predicted I would be dealing with back issues if I did not stretch every day, and she was right. If I could talk to my 12-year-old self, I would say, “Do yoga!”
Anyways, since moving back to Boston last year, I have been doing physical therapy. For most of the pandemic, it has been virtual sessions. While I started off well, my determination to do the exercises every day faded, preventing me from making the progress I hoped for.
A little over a month ago, I started having stabbing back spasms that confined me to lying flat on the floor for hours on end. It may be surprising (insert sarcasm), but there is not a lot to do while lying on the floor aside from diving into your own thoughts. During these sessions I did a lot of thinking about what I want for my future. I want to be active, hold my nephews, and while I may internally have a soul of an 80-year-old (…at least that is what my friends tell me), I want to have a body of a 25-year-old (…yes, I am turning 30 in August, but let’s ignore that).
So, I am now seeing a physical therapist in-person twice a week, and I am determined to make sure this is the moment when I see real progress. I may sound like a broken record (…and this is exactly what I am thinking as I write this), but I know without committing myself to this physical exercise, my body and hopes for what I want to do will only go downhill. I am thus making it one of my new year’s resolutions determined to follow through on my physical therapy.
Sleep and Reading:
I strongly believe (…and scientific evidence has proven) that physical and mental wellbeing are intertwined with one another. You already know I haven’t been the best at the physical part, and I also haven’t been great at some of the factors that contribute to mental health. To give myself some credit (…because resolutions are not just about bashing yourself for things you’ve done wrong in the past year), I have continued to virtually see my therapist almost every week. This has been critical to my mental wellbeing particularly during the pandemic. One of my strongest beliefs is that everyone should have, (…and should have the access and resources to) a therapist. Working with a therapist can be tough. It is often a process of forcing myself to pull apart pieces of my life to step back and look at them in new ways. When I put those parts back together, no matter how difficult, or at times heartbreaking it may be, it has always led to growth.
Now back to sleeping and reading. The pandemic has lent itself to needing to find distractions, particularly as I lay alone in my apartment at night. This has resulted in A LOT more screen time. Case and point: I have downloaded Tik Tok on my phone. Due to this, I find myself getting into bed at 10pm and going to sleep around 12am. Less sleep results in exhaustion the next day, poor mental health, less motivation for exercise, and a need for further distraction the following night. It’s an endless cycle. As I will talk about later in this post, we cannot judge ourselves for our coping mechanisms to this unprecedented year of disasters, and while my writing may seem self-judgmental, it is mostly a reminder for WHY I want to prioritize these changes. As I enter the new year, I want to adopt better sleep patterns. This means less screen time (…and maybe deleting Tik Tok).
An alternative I propose for myself in 2021, is to read more. When I have found books that grab my attention, I have not only slept better, but also my creativity and overall happiness has improved too.
Make the world a better place for my nephews
You read that right! In the span of this past year, my brother & sister-in-law, sister & brother-in-law, and stepsister all had baby boys (Zachary, Lucas, and Noah)! My nephews have kept my heart full throughout 2020 even during periods when I have not been able to see them in person or without a mask for long stretches of time. As their uncle, my goal is to make their life as happy as possible.
While a lot of their happiness will include way more ice cream than their parents will ever know of, it will also involve the state of the world they will inherit. We have seen in 2020 that we cannot protect children from all that can happen in this world whether it is wildfires or pandemics, but I want to tell my nephews I did everything I could to make a positive difference.
That is why last May, I started a job with the Planetary Health Alliance, a global consortium of 210+ organizations from over 40 countries dedicated to solving the most pressing issues related to how global environmental change impacts human health. While I will not go into detail here, the pandemic is a planetary health issue, and a worldwide movement focused on planetary health is the only way we will stop future pandemics. I am privileged to have a job, let alone one that I am passionate about, during this pandemic. I do not take this privilege lightly, nor the opportunity I have to somehow make a difference in this world for my nephews and future generations.
To leave a better world also means making sure I am committed to justice, equity, and compassion. To never stay on the sidelines but be an active participant in making sure the arc always bends towards justice.
Pursue my dreams to sail and write my book
In late summer/early fall, I started having some sensory seizures in my right arm. The changes in sensation would start in my fingertips and slowly creep its way up through my arm and eventually to the right side of my face. Naturally, this freaked me out, and made me incredibly anxious for my fall MRI scan. I went into my scan and doctor’s appointment 95% sure that we were going to get bad news.
Good thing I did not make that bet. The scan was stable! And to those who have been wondering how my health is, my scans have continued to be stable since my radiation treatments in October 2018. While this was definitely news worth celebrating, I was still left with the unknown of why I suddenly started having sensory seizures. Switching up my sleep schedule though has for the most part stopped the sensory changes. Also, I have worked to change my mindset about these symptom changes. Rather than obsess over every symptom, I take notice, but let it be. I’m not doing this in a pessimistic way. Instead, I’ve realized that I don’t want my tumor to take up more brain space than it already has (…pun definitely intended).
I cannot do anything to change what has and what will happen. I am already doing everything I can. I started Idhifa, the targeted molecular therapy I was originally on before radiation that didn’t stop the tumor growth. Why you may ask? Because the intention of doing immunotherapy has always been to get to the point of pairing the Pembrolizumab with the Idhifa since some biomedical evidence shows that they may have co-benefits (…as a reminder, this is all experimental).
With all that said, again, I am doing everything I can do medically, so I may as well use my relatively good health and time to pursue my passions and dreams.
One of those dreams is sailing. During the summer, I learned to sail small boats on the Charles River. As I already know from past sailing experiences (…including a month sailing a tallship in the Atlantic Ocean), sailing brings me into a flow state. A state of being where I am completely present. A state when I am tuned into the water, wind, sails, and nature. Only a few activities have brought me into this state of being including scuba diving and white-water kayaking, but I can no longer do those for medical reasons. I can, however, sail.
My dream is to get my certifications to sail and charter large sailboats. While my ultimate dream is to have my own sailboat to sail to places like the Caribbean (…or perhaps the Pacific!), for 2021, I want to simply start the first step and get my certifications.
Write my book
I have done a lot of writing as reflected in this blog, other articles, and my master’s thesis. Despite this, there is still a lot more that I want to write about. My motivation to write my book is two-fold. First, I believe what I have gone through can help others whether it is cancer related or not. Second, I simply want to put my life down on paper before I get to a point when it is too difficult to do that (…whenever that may be). I have lived a full life in a short amount of time. I know, whenever my health declines, that I will have regrets if I do not write down all that I have been fortunate enough to experience, and what I have learned. I primarily want to do this for my Mom since it is because of her that I have been able to fit several lives into one. I know this resolution will be difficult, but I at least want to get started.
Stay true to my values: My family
I moved back to the East Coast because I wanted to be closer to my family. The pandemic threw a wrench into easily visiting anyone I wanted to see. I have been incredibly lucky though that no one has gotten seriously ill.
2020 has been a year of uncertainty. I have lived with uncertainty ever since I was 12. Over time uncertainty has molded my values to the point of understanding that what I value most is my family. Regardless of what happens to me, if I am with my family, I will have no regrets. It is this value that has helped me through 2020 and will continue to support me throughout whatever challenges lay ahead.
That is my final resolution for 2021, and a resolution I know I will make for 2022, 2023, and hopefully for decades to come. Yet this must always be an active pursuit. Recognizing the value does not make it come true just like moving to 2021 will not leave behind the trials of 2020.
Midnight will come soon, and the years will passively transition, but to move to a better year, we must be active in our resolutions. I, we, must also not put too much pressure on ourselves. We still live in a tumultuous world, one with more uncertainty than many have ever faced. We must, above all else, be easy on ourselves. Be easy on each other. Help those who are struggling.
It is good to set resolutions, and I am glad I decided to write this blog post, but in the end, the most important resolution may be kindness to each other, and to ourselves.
To all of those who have lost someone this past year, may their memory be a blessing.
I wish you all a healthy and rejuvenating new year,