I’m getting asked this question a lot these days. I don’t mind being asked but it has a complicated answer. So, how am I doing? Here’s the multi-layered answer…
As it relates to my 2nd opinion authorization, I’m discouraged and frustrated. It has gone far beyond bureaucratic BS and has become a truly twisted mess. I’m not sure how the process got so out of hand but there are now 3 different entities and multiple personnel working on it. As a result, there is still no approved authorization in hand or date on the calendar. I’m having a hard time connecting with UCLA as well. Unfortunately, the process is only serving to feed my fear and build up some pretty unrealistic expectations for what the 2nd opinion can offer us. I feel like I’m in a “no win” situation, literally, at every turn and my optimism is dwindling.
Physically? My body is fatigued but I’m not in any pain. The weakness in my left leg is causing me to limp. I navigate our home okay but feel self-conscience when I’m out and about. My speech is changing…I’m not sure how noticeable it is, but I’m noticing the change in my ability to form words and project. When I’m emotional, I can hardly articulate words at all. It’s very strange to be thinking the words I want to say but unable to say them correctly. I also have subtle twitches, just underneath the skin, all over my body all the time which is a constant reminder that my body is in a process. Right now the symptoms I’m experiencing are more annoying than debilitating but they certainly are adding to my fatigue and anxiety.
Emotionally? I’m struggling. Home is both the most physically comfortable and the most emotionally difficult place for me to be. I’m grieving and my home is a constant reminder of what I’ve lost and what I’m potentially losing. My mind just can’t process it. Right now the closest I can come to describing where I’m at emotionally is profoundly disappointed. Apathy is beginning to blanket my attitude toward everything. To be totally honest, there isn’t much I “want” to do. When organizing my day, I find myself choosing between the things I don’t want to do the least. My grief over losing Rudy is still so raw and “healing” in the grief process seems impossible because I have very little vision for my future. It’s like trying to treat a festering emotional wound with a salt shaker. I’m just really, really sad…all the time…with no relief.
Spiritually? Hopeful. I know this sounds contradictory to what I shared above but there is hope because God is near and I know that our current situation is just as much a spiritual journey as it is a physical one. One of my all time favorite quotes is from Betsie ten Boom – sister to Corrie ten Boom – who said (my paraphrase) there is no pit so deep that God is not deeper still. I know I can’t compare my experience to the brutality of Nazi Germany but life is brutal for our family right now and I feel like the pit is going to get deeper before life becomes less brutal. It’s the simple truths of God to which I’m clinging right now and they are putting a spotlight on my hope that is ever present whether I feel it or not.
Thank you, dear army of friends, for your prayers. Please continue! Love to you all.