The other day, I fainted in PT. I had had a really good session, making it up to 80 degrees on the tilt table and tolerated it for 13 minutes. However, while trying to sit up after the session, I fainted, giving one of the med students on my case, the OT, the PT, and my mom and sister a good scare.
While I was trying to recollect myself, the group discussed how they could tell I was about to faint. My mom said her classic line, "I can see it in her eyes. They lose their sparkle." My OT said she could see it in my breathing. My PT said he saw it in my heart rate. But they all agreed that my eyes go a little duller right before I pass out. They even compared me to the Genie in Aladdin.
Our discussion about my fainting eyes got me thinking. I've learned a lot during this process and one of the biggest things I've noticed is how people respond to this tumultuous journey. You can always see it in their eyes.
When I bring up Lyme to the cardiologists, their eyes almost glaze over as if that simple word gives them the cue to snap out of the conversation and tune my questions and concerns out. I'm barely finished my sentence before I can see that they have stopped listening.
On the other hand, some of the most striking images I have seen during the last few weeks consist of the fear and worry I see in people's eyes when I come to. Sometimes I don't even realize I've passed out until I open my eyes and see worried faces hovering over me.
When I started using my wheelchair in public, I could instantly feel more eyes on me. While waiting in doctors' offices in the wheelchair, I could feel the wondering, curious, pitiful eyes locked on me. On one particular visit to my cardiologist I remember sitting in the waiting room in my chair with my knitting. My mom helped push me into the office and get me settled. As I waited for my appointment I could feel the eyes of an older woman locked onto my hands as I knit. When I would look up to smile at her reassuringly, she would look away. But her eyes always came back. And now, knowing what I know and meeting who I've met and being where I am, I know that she was looking at me with what is so indescribably "cancer eyes."
The second day of my MRI's the radiologist was much more distant with our conversations. In between images, I asked my mom if she sensed that the woman, once so nice and friendly, seemed a bit more standoffish that day. In hindsight, we both realized that this was because she had already viewed my MRI that showed my tumor. She knew I was sick. She didn't know much about my tumor but she knew I was sick, so she looked at me with undeniable "cancer eyes."
Then, the day of my diagnosis, the moment I saw my neurologist after hearing his message requesting an urgent follow up appointment, I knew something was wrong. The friendly conversational interest that had once been in his eyes while greeting me had been replaced with concern and something else, something I still can't put into words. Maybe it was the dread he felt about giving me the news. Or maybe it was his own fear. Maybe it was pity. Maybe, it was "cancer eyes."
All this being said, maybe everyone can see unspoken thoughts and feelings in my eyes. Maybe they can see that I'm sick and tired of being so sick and tired. Maybe they can see how hopeless I feel somedays. Maybe they can see that I'm still a little scared.
I had a piano/voice teacher who used to always tell me to stop closing my eyes while performing. She used to say that the eyes are the windows into the soul and if you are going to connect with anyone, in a performance or a song, you had to let them see your soul. So maybe it's good that we can't always control what people can see in our eyes. Maybe we need to let other people know that we are concerned, scared, worried, hurt, anything. And when we are all so scared of speaking up about these feelings, maybe it's best that our eyes do it for us.
I am so sorry you are going through all this. However, your entries in this blog are so insightful and helpful to me, a fellow chronic illness/chronic pain person. Life is so hard for those of us who have chronic health problems...And, yes, there are always people out there who have it worse than we do, but that does not diminish what we have to handle. Daily life can be so difficult for us, and many "healthy people" don't get it...Or, maybe they just choose not to be a part of it. Regardless, I can relate to so much of what you write. I know how hard you are fighting to restore your health, your identity and your self-worth. Stay strong, Tori, but remember, like the rest of us, you are only human. We push ourselves through all that we can everyday. But, sometimes it becomes so physically and emotionally draining that we break down. We need that release sometimes. I am a big believer in the power of a positive attitude, but I am also a realist. Sometimes, we need to allow ourselves to get frustrated, angry, and, as you have said,"sick and tired of being sick and tired". But, we then collect ourselves and push on. Sometimes we do it for ourselves; sometimes we do it for the ones we love. Regardless, we do it. And, we keep doing it over and over again because we are literally fighting for our lives and the quality of our lives. So, Tori, you keep fighting and keep doing your best. You are a wonderful, gifted person and you will leave your mark on this world. I am praying for you and your family.
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