Yesterday I had my first post-radio surgery MRI. To my surprise, I received the results within hours (thank you, Valley Radiology!).
The MRI showed no change--- which is good! No new bleeds and no edema. Scan-wise, this is the absolute best result imaginable.
So why do I feel sad? It is the reality of my situation. I need to accept a new normal, yet I'm in partial denial. My lack of physical ability does not greatly trouble me; I can accept not being able to run or be some superstar athlete. And I'm learning to not trust my left hand so much anymore (I've dropped my new phone about 8 times in the last few weeks). I have embraced the microphone feature on my cell phone (I am no longer "text" challenged). I have even started working out again to make myself stronger and more coordinated. It is just that brain injury takes so much longer to heal than I want to admit.... I don't want to have constant challenges define me.
My husband was saying just this morning that when he had ACL surgery on his knee, it took him a full year to recover. He says I'm just not being realistic to think that I would feel better in just 8 months after major brain injury. Unfortunately, I could only respond by crying. It is difficult to realize life is indeed very different, and may never be the same again.
The "favorable" MRI also told me that my cascade of symptoms may be my constant companion--- a condition to somehow learn to ignore or put on the back burner so that I can cope with daily life. It is a daunting task for someone so cognizant of bodily and emotional concerns to just learn to ignore feelings. How do I learn to ignore feelings, but at the same time be aware of symptoms that are potentially life-threatening?
I know my thoughts are not unusual for a sufferer of cavernous angioma. Most of us have not been able to find a anyone who can discuss what symptoms are "normal" or expected, and what symptoms ought to be evaluated (other than an obvious symptom like a seizure, etc.). Cavernous angioma patients experience such a plethora of symptoms that it remains difficult to separate out what is disease-related and what is not. Seriously, are there no neurologists who understand this disease? I have learned more about this disease and what to expect through Angioma Alliance and though a couple of private Facebook groups (Cavernoma Support Group and Stemmies).
I find I am in a new stage of life's journey. Oh, Lord, what are the lessons you want me to learn? What are you trying to teach my family? In retrospect, I was pretty arrogant to think I had a handle on God's sovereignty. I intellectually understood God's absolute and total control of all aspects of life. After all, I've read lots of theology books and completed countless Bible studies. But personal suffering is a different teacher. It is entirely another issue to deal with His sovereignty head-on... face-to-face.... It is then that the struggle to trust becomes an hourly battle. Will I trust Him when I can't be the mom I used to be? Will I trust Him when my symptoms interfere with my agenda? Will I trust Him when my kids get diagnosed with a potentially devastating disease?
As a family, we studied Psalm 46 last night. Such a beautiful and encouraging Scripture--- and perfect timing, as usual. God is our refuge and strength... and I need to learn to "cease striving" (verse 10). It is a process. He is God, and I am not. I don't have to like what He chooses for me, but I do need to learn to accept His plan with maturity and grace. He is my stronghold. Pray for me and for my family.