I suspect that there are a great many people who feel as if I have been in denial about my situation, talking about how blessed I am, how I want to use this opportunity I have been given and so on and so forth. I for one, think that I have been very open and honest about my experience thus far. The hard part is to continue to be open when some of these less enjoyable emotions kick in (as they have). But, I said that my goal was to document my journey, and the negative emotions are also part of this parcel.
One of the most humbling things that I have to reconcile myself to these days is the fact that I have zero independence. I am at risk for having spontaneous seizures (especially during the six weeks of receiving radiation treatment since it causes swelling in the brain), and this makes me the equivalent of an adult who has the freedom of a child. I can not be left home alone. I can not take care of the boys by myself. My driver's license has been revoked. Any type of cooking or chopping should be with someone else. I can't even go to my own doctor's appointments by myself. If I want to go to the corner store to buy something, I need to pull someone along with me.
It feels a bit like I've been tied on a string and hung around the necks of those around me. Everyday, James, my parents and I must review the day. Who will be home with the boys when? Who will be with Jessica when she needs to rest? Not only has my independence been removed, but the ability of those around me to function is also greatly limited.
What makes it even harder to swallow is that so far, I'm doing fine! I'm told that it is in the last half of my six weeks that the more cumulative effects kick in and that at that time, I'll probably be a pretty unhappy camper. But for now, I have learned how to control my nausea and exhaustion, and other than not having hair, you'd never guess that I have a brain tumor. I have a lot of small side effects, but they are the kinds of things that I am accustomed to ignoring in myself. Headache? Take some Tylenol, ignore it and it'll go away.
I find myself pondering a lot of "what if?" scenarios. It all happened so suddenly. Other than two incidents of pre-seizure symptoms (referred to as auras) in the two weeks leading up to my seizure, there were no signs, no warnings. I was busing around Beijing by myself, having stimulating and interesting conversations with any old Chinese person who decided they wanted to talk to me, going to the market by myself to bargain for our daily vegetables and then go home and cook them (by myself), flying to other far away Chinese cities for the day to having meetings with people, and able to stay at home with the boys by myself for days at a time so that James could do his work travel. I was playing an important role as an MCC volunteer, helping people.
What if that seizure had just never happened? Obviously the brain tumor would still be there, but what if we just hadn't known about it for another long time? What if I hadn't been instantly put on a regimen of medications? Would I feel more sick? What I be seizing all the time? What if we just hadn't known until one day I collapsed and never woke up again? Do I think that would be better? I don't know.
There is this idea of "the future" that has become a bit of a sore spot for me. I have mentioned this before. Yesterday evening, I felt driven to go for a walk "by myself" (walking up and down the same stretch so that my family could still monitor me). As I walked, I realized that all of my life I have always used walking by myself as a time to dream. When I was in middle school, I started walking the dirt mile roads around my hometown. I would go for hours at a time and spend the whole time dreaming about my future. When James and I started dating, we would walk those same mile roads and dream about our future together. After Ari was born we found a park that followed the river in Winnipeg and we would walk him in his stroller along that path for hours... always dreaming about the future.
Dreaming about the future for me has never been about scorning the present. It has never been done out of wishing that things were different. Thinking about my future has always been a product of being excited about the life that I do have! I always felt that there was so much potential and enjoyed what I was doing at the time, so it seemed like the future could only hold more exciting things. What could those exciting things be?
Yesterday I had an encounter with Jude that I felt summarized the way that I feel now about the future. It was also very telling about how my three year old is handling these circumstances. Jude has always been a much more cuddly boy than Ari. Up until we left for China, he was extremely attached to me, and even as he has become more independent, he still really enjoys getting his hugs and cuddles from me. So far, his reaction to our overthrown lives has been to pull away from me. Now, finally, after almost two months of this, he is tentatively starting to approach me again (like when I put him to bed the other night).
Last night the dam broke. He was crying about something completely unrelated and I was sitting with him in his room holding him. Suddenly he started sobbing huge gulping sobs, grabbing at me desperately, stroking my facing, squeezing me tight and saying over and over again, "Mommy, I want you! I want you!" I felt my heart get ripped open and the two of us cried together. It was as though he felt like he just couldn't get a hold of me, even though I was right there.
Obviously the encounter was heartbreaking for its own reasons, but it also occurred to me that the way that Jude was trying desperately to get a grasp of me is not unlike the way that I feel about the future. Slippery. Shadowy. Right in front of me but having no form.
Lord Jesus, I need a new perspective!