Physical Health:
The good news is that I went 11 days without needing to rest in the middle of the day. It felt like a gift and a huge step in the right direction.
The bad news is that my body had a hard physical crash last Thursday after those 11 days. I was dizzy, nauseated, extremely fatigued, and in a lot of physical pain. We are currently in the process of trying to put the pieces together. We are doing a lot of trial and error to figure out next steps.
Emotional Health:
It can be disorienting to go from 11 days of improvement to a huge physical crash. I have been navigating this health situation for 20+ years, so I am used to the uncertainty. However, that doesn’t mean it is easy not having a baseline for functioning each day. After only 11 days, I was already starting to get used to being able to function at a certain level, but I now, once again, have to wake up each day and see how I feel. There is no level of planning that I can do and feel confident that the plan will actually happen. That part is emotionally exhausting, because I constantly have to be ready for anything and just go with the flow. It doesn’t seem like it would be that hard, but it is extremely difficult when trying to work a job, participate in life, and attend doctor’s appointments. Our society is not built for people who have to live in so much uncertainty each day.
I would say the fact that our society is not built for people in my situation is one of the parts of this journey that feels the most isolating. Most people can go about each day with certain expectations about what they will be able to do, and they have no idea what it is like to not have that. There are times when even my husband forgets that our plans are always tentative. It is easy to get lulled back into some semblance of a routine even after just 11 days. I am lucky that he understands relatively quickly when the plan for the day needs to change, but the rest of our society isn’t always as patient and kind. For example, medical practices usually charge cancellation fees within 24 hours of an appointment, so imagine what it is like to never know until the day of the appointment if I will feel well enough to attend the appointment.
Despite how disorienting abrupt changes in physical symptoms can be, my husband and I have been having quite a bit of fun. We have found some TV shows that we can watch together during the times when my physical health is the most uncertain. I have always known that my husband was the person for me, because we have always had fun doing anything or nothing at all as long as we were doing it together. I can confirm that this statement is still accurate. When life circumstances strip you of a lot of things, what remains is what matters the most. And, what has remained true for me is that my husband is the person I want by my side when all we are capable of doing is sitting next to each other.
I also have a few close friends who are staying in contact and cheering me on. One of them saw this image last week and thought of me:
(credit: unknown)
In addition, a former student texted me yesterday to tell me that he was thinking of me and sending love from a few states away. He is studying to be a doctor, and I can’t imagine anyone being a better doctor than him. He is intelligent, works hard, and is kind and compassionate. He is an amazing human, and I am lucky to know him.
It is easy to see that even during the most difficult times, I have a really wonderful life. There is not a day that goes by that I am not grateful for what I do have, and I have been told by many trained professionals over the years that this is unique for someone in my situation. Just last week, our amazing therapist emailed me to remind me how “awesome” I am. She said that she continues to be impressed by my ability to hold grief and reverence in the same breath (which she says is called “tragic optimism” in the psychology world). She also loves and respects the transparency and vulnerability in my writing. Since she is sitting in the trenches with us and is privy to the intimate details of our life, I highly value her feedback.
Finding joy in the midst of difficult life circumstances comes so naturally to me that I don’t even realize I am doing it. In fact, my inner circle often has to remind me that my mindset is unique and special given my circumstances. Good thing I have such a badass group of people in my life who provide these reminders as needed! ❤️
Brutal. A huge physical crash. Living in constant uncertainty in a society that isn’t built for people living in constant uncertainty.
Beautiful. 11 days in a row without needing to rest in the middle of the day. Being comfortable with uncertainty. Finding joy in the midst of the pain. Feeling seen, safe, and supported by my amazing husband, close friends, former students, and our phenomenal therapist.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
This Brutiful Life 