Happy New Year friends and family! Apologies for the belated update, I had intended to write this post for weeks but could not get it together.
So the past month has been very eventful for me, about three weeks ago, I was sitting in my office at work and looked forward and suddenly my vision aligned. It only lasted a minute, but proved to be the beginning of the end of my double vision. Just as the doctors predicted, almost exactly three months after my surgery (the minimum recovery time), the muscles controlling my eye came back into alignment. While it took about another week for it to become consistent and not fluctuate in and out, it was like an epiphany for me.
The shift immediately quelled my anxiety about it never getting better and provided me hope that I would soon be able to drive again. Sure enough, once I was confident my eye had stabilized, I took a test run with my car just a few blocks to the PCC and found it to be no trouble. The next day I tried a little bit farther and at night and again had no trouble. After that I felt that I was safe to drive again and I have been doing so with no problems ever since. This has greatly improved my ability to get back into the community and volunteer activities I am part of as well as allowed me to get back to the gym and run errands easily.
The improvement in my eyesight has improved the quality of my life tremendously and I am grateful for every day I wake up and can see without struggle or strain. On a lesser level, however, there is still no improvement on my jaw issue and in fact I discovered last week that not only am I not able to open it more than about a half inch, it is now opening crooked. The right side where the TMJ muscle was removed is pulling my lower jaw to it. But it does not hurt and is mostly an annoyance that makes it difficult to eat, but compared with my eyesight, is not too significant. Another residual issue is the feeling in my right temple/scalp which alternates between numb and itchy. This is very common and simply the nerves knitting back together but has resulted in what my friends affectionately call my “Rat Rub” gesture which involves me compulsively and repeatedly rubbing my temple to relieve itchiness and tingling.
Another development over the past few weeks has been in regard to the mugging incident at the Columbia City Link light rail station I wrote about in my last post. While I don’t feel comfortable getting into too much detail here, I did want people to know that in conversations with the police detective working on the case, I was told that I was one of seven Asian American people (all but one were women) that were mugged at the same place by the same people. The muggers were intentionally targeting Asian women along that stretch. While I did not have the time to share this more widely, it seemed like an important public safety. I also felt the lack of public information or coverage about it reflects the impact of fewer reporters and media outlets available to cover public safety issues in the city. While I am materially and physically fine from the incident, my sense of confidence is definitely shaken and I can no longer walk down the street by myself at night without looking over my shoulder repeatedly to see if someone is coming up behind me.
But I am determined to not let the experiences of the last few months inhibit me or cause me to be irrationally fearful of risk so it was with great pride last weekend that I, for the first time, went snowboarding with friends at Mt. Baker. While there are very real dangers involved in snowboarding, it is something I always wanted to do and try. The first day was a nightmare. Getting on and controlling the board was way more difficult than I had ever imagined, even after numerous people told me how difficult it would be. My friend hurt her elbow really badly right off the bat and I took several really hard, scary falls and finally got so shaken I gave up on it after about an hour. This was really, really discouraging and disappointing for me. I hate quitting but felt very vulnerable on the slopes and ultimately decided the potential danger was not outweighed by the benefits. But the next day, after thinking, regrouping and reorienting myself to the very foreign feeling of being strapped helplessly to a slippery board on a slippery hill, I gave it another try.
Following my friend Pam’s lead, I found a way to get up on the board slowly, carefully and deliberately and make my way down the run. Being able to conquer my fear and actually get down the mountain was one of my proudest moments and has given me much confidence in what I can achieve in the future.
The emergence of the new year and the new decade has prompted much reflection for me. Despite all that has happened, the only way I can view it is with a tremendous amount of gratitude and appreciation for how lucky I am. I am lucky for too many things to mention, but some notable ones are all of you, health insurance, the aggressive and thorough diagnosis and treatment by my ARNP and surgeons, no cancer, reasonable out-of-pocket maximums, my body’s resiliency and strength, my vision, supportive employer, my friends and family. As we begin the new decade and a new year, I want to rededicate myself to the goal of a world where everyone has the same access to good health, support and freedom from fear and want that I have been blessed with. Thank you all so very much for everything you have done for me the past few months, I will never forget it.
P.S. – A big shout out to the many wonderful new friends I have made in the brain tumor community! (Yes, there is a community.) From the early and reassuring guidance of veterans Mark, Ruth, Dante and Katy to new friends Susan, Sandy, Beth and Wendy on It’s Just Benign, your support and shared experience has been a lifeline. And to John and others who are looking ahead fearfully to what might be in store for you, please know all of us are eager to “pay it forward” and will be there for you as well.