Sometimes I wonder…”Am I just fooling myself?” I mean, I try to be a positive person despite my sarcoidosis, this chronic illness that so changed my life. I try to focus on what I have instead of what I lost. I do know how important attitude and outlook are when it comes to managing your body! The brain and the body are connected. If I ever doubted this or once didn’t give it much thought, I am wholly aware of it now. I’ve also become aware of the mental games I must play to stay ahead of a sinking, soul sucking sorrow that my body has betrayed me.
Last week, I had to go for an MRI. I’ve had them before. I knew what to expect and I’d never had a problem getting in that stupid metal tube before. This time, right after I laid down on that cold hard table and the tech put that cage around my neck…YIKES! I’ve never had a panic attack before so I wasn’t sure if this was what was happening but I could not breath, I started to sweat, I wanted to cry and run away at the same time and, I thought I might die. The tech realized quickly what was going on, took the cage off my neck, had me sit up and take deep breaths. She was very kind about it. She distracted me by asking why I was there and what was going on. During our conversation, she confessed that she too has a chronic illness. She shared some of her awful experiences with the medical community. Only someone else with a chronic illness can understand how this would put me at ease.
Something she said has stayed with me. She talked about how ever since she got sick, weird things, things she doesn’t expect or never experienced before now frighten her. She mentioned a new fear of heights. I thought about that a lot after I got comfortable enough to finally get in the tube and have my imaging done. Apparently I am now claustrophobic. Thank you sarcoidosis. Her words ring so true though, that while I know I am brave in new ways, ways other people could not be, I also now feel like a chicken much of the time, unsure and often ill at ease. It’s a feeling I have to constantly fight but has become so second nature that I don’t even know the battle is raging until, well…I have to go for an MRI! It’s a quiet state of panic until something tiggers it.
Here’s the other thing that happened during my MRI, my husband had to come in the room and hold my hand. Ugh, talk about embarrassing. Now, my husband is a wonderful man. He would never say or do anything to discourage me or further embarrass me. He came in the room, put that handsome big smile on his face that still makes my heart melt and said…”Come on, let’s do this thing.” I took a few more deep breaths, the tech said she’d keep the cage off my neck if I promised to keep still, my husband grabbed my hand and held on for dear life. I survived the MRI!
On the way home from the imaging, I found myself silently shaken and a feeling of complete inadequacy came over me. I hate how depend I feel sometimes now. I used to be so strong, could face every fear and jump into life with both feet. Not anymore. My brother once told me that he was shocked that I’m not afraid of anything. Well Bro…I am now. Some people say I’m brave because I make living in constant pain and uncertainly look easy. Sometimes I feel like a phony, like that smile I plaster on my face just thinly veils an underlying misery.
It occurs to me that the amount of emotional gymnastics that I have to play just to try to be happy, let alone have any peace, is astounding. It’s a choice to try to be happy and all the twisting and contorting I put my mind through to be grateful certainly feels like exercise. It’s hard work but it is worth it. No amount of mental gaming playing is ever going to change the fact that I hate feeling weak and dependent though. Yet, in order to shake this feeling of inadequacy, I know that I must now bend my mind around something other than my sorrow. I must push away the feeling that just because I needed my husband, I am not enough. I must focus on the fact that I have such wonderful support in my life, that he was there when I needed him and that mentally, I did overcome my new found claustrophobia. I am not deficient because I needed help. Everyone needs help sometimes. Or, maybe I am deficient but, you know what…who isn’t? However I look at it, I know that I need to accept that getting help the you need is more a sign of strength than it is of weakness.
So, “Am I fooling myself?” Maybe. Sometimes. Does this mean that I’m a phony? I don’t think so. It makes me just like anyone else who is looking for peace of mind no matter their circumstances. I don’t pretend living with sarcoidosis is easy, I never have. Learning to tumble through all the feelings that come with life with an unpredictable, possibly life limiting, illness is probably the only way for me find any happiness at all. I will allow myself those breath stopping, gut wrenching moments of reality from time to time. Life IS harder when you’re constantly sick. I will also continue to zig zag, dodge, jump and twist my way toward acceptance. I will play whatever emotional games I need to play in order to let go of hopeless fears and unproductive self loathing. I didn’t ask to be sick but, it is up to me to figure how to cope with it now! And, there’s nothing fake or phony about smiling sometimes when you’d rather cry or laughing when you’re scared. I’m not an imposter. I’m human.