My biggest fear is that someone…you, anyone, will think that I am using my brain issues as an excuse for things.
Not the Cowden Syndrome, but my brain (gangliocytoma and now problems) since surgery. Tonight, I had a big, fat, “IN YOUR FACE” experience of this. I had dinner tonight with a friend, a girl who I’ve known for over 4 years. I don’t know what she was thinking, or why she thought it was OK to come off the wall with me about my life and choices since surgery, but she did. Did she not think there would be serious repercussions? She kept saying, “As your friend”…..It was awful.
Initially dinner seemed nice, I listened to her go on and on about her work things. No problem. I try not to share my medical things unless someone asks. I don’t know who reads, or who has, this blog so I figure if someone wants to know the updates they will ask. If they don’t ask, then I don’t bring it up. I learned the hard way these last few years that it’s a small group of people in my life that I can trust and really vent to when I need to about stuff in my life. No one wants to hear really scary medical stuff. No one really cares, plain and simple. Everyone is worried about the next movie or the next whatever, and while I was hurt at first, it’s just acceptance (like I’ve written about before). Accepting people where they are at. It was a painful process for me, but this blog, therapy, and many other things has really gotten me to a better place of dealing with My Life with Rare Diseases. Anyway, she and I don’t really talk much about my medical stuff; she doesn’t ask, I don’t offer. A happy medium, right?
But when she begins to tell me that I’m using my brain and other issues as an excuse to “not live life” or whatever, then I really take issue. It hit me like a ton of bricks. Her judgement. Her condescension. Her combativeness towards me. This was off the wall like nothing I’ve experienced in a long time. I felt so much irritation and disdain from her when 10 minutes earlier I was just listening to her vent about her work stuff! I was, and am still, so very confused! She doesn’t know about how I am busting my tail working out, I only began to mention a temporary job I am at for this month, she doesn’t know (didn’t ask) about the abnormal EEG, and began quoting me on things I said MANY MONTHS AGO about certain people and “expectations” I had for them and how they didn’t measure up and I just “cut them” and then blah blah blah……
My head is still spinning. I wish I would have said, “Your perspective. Not my business.” I have no memory of what, or when I said these things. But, first off, don’t friends irritate each other? Don’t friends say things about one another at certain points in relationships? But that doesn’t mean they sever their friendship? I never said that about these friends. I feel 100% confident that I didn’t say that. Her comment was, sarcastically, “You don’t remember saying that?” And I responded that I did not. I told her, had she asked, I had an abnormal EEG and have memory problems now with certain things. She said, “That was before then.” And I said, “I KNOW. THAT’S WHY I CANNOT REMEMBER.”
Then, in the midst of all this she said that she was fine with this being our last dinner and us not talking for 6 months or something. I was shocked. I am shocked. I am still shocked. Does she know how I am working out? No. Does she know how I am coordinating a Rare Disease Day Event? No. Has she asked about anything going on in MY life? No. This outburst from her floored me. Really hurt me, very deeply. Every single fear and insecurity about myself she called me out on. After I tried to stick up for myself as best I could, I too said I was fine with this being our last conversation too, grabbed a paper I brought to share with her, and left the restaurant. Deleted her number and texts from my phone. I’m done.
Before I got home I went by the exercise studio I am working out at and told the owner I needed a pep talk. She said no one has any right to judge me with my life choices and decisions and that I should not give this person the power to affect my energy. I am not making it all about me and have tried and am struggling so hard to NOT make it about me. (That’s part of the reason why I still have this freaking blog!)
To all of you who have friends who have chronic medical issues: Please do not stand in judgement of them. Support them and ask them what they need. If you’re not able to do that, just send them a text, “Thinking of you”, or invite them for frozen yogurt or something like that. I guarantee that gesture will mean the world. What I have to do now is work now on “not taking it personal” but that’s really hard. Tonight, I’m just mad. The rest will come later.