I’ve had one of those days where I can’t wait for it to be over so I can try again tomorrow. I don’t usually wish days away, but this has been one that no matter what I do, I can’t seem to make myself rise from the funk I’m in. I can honestly say that I didn’t even recognize myself today. I was sad and down and irritable and short and just all around nasty. This has simply not been a good day.
I found myself in a situation last night that left me feeling misunderstood and undervalued. I didn’t realize until now how shaken my confidence is as a result of my diagnosis and well, prognosis. Social situations are my thing. Or at least they used to be. It’s hard to make me uncomfortable and I always know what to say and how to behave. Unfortunately, that’s totally changed and in an unfair way. Now I’m finding it hard to know what to say or how much to say. It’s even difficult sometimes to hear the things that people would say in response to news like mine. Pretending its not there bothers me, but treating me as though terminal illness is all there is to me, is hurtful.
The thing about last night is that I don’t even really know this person. And to be honest, it’s not high on my priority list to get to know them, but their carelessness and insensitivity seemed to push up all these feelings I didn’t realize were such a big deal. I had no idea how insufficient I really feel now. How insecure I had become in light of my illness. Most of today, I have felt like I have little to offer. I mean not as a human being, but maybe as a woman and most definitely as the adventure and fun seeker that my heart still very much longs to be. The sadness today came from the realization of all these dreams I’ve had my whole life that were seemingly stolen in a matter of moments just a few weeks ago. This isn’t a pity party for Beth. It’s just me being honest about how I feel. I’ve had these intense dreams and desires to get married and have a family for as long as I can remember. Trust me, it was hard enough to keep these dreams alive before with my old fashioned or more traditional views on dating but now they seem to have died with little hope of living again. I say that because I don’t believe that hope is ever really gone, but I certainly know that odds are not good.
So, the struggle that remains is this; the disease has not yet taken my freedom. I still look healthy. I can still enjoy, most amazingly, all of the social things that make me so happy. The problem is my dreams can’t live like they used to. And a dreamer is what I am. So how can I be myself with anyone who doesn’t know me well? If you want to see an awkward situation, imagine being next to me when a guy tries to have a conversation with me and when he asks what I do for a living the gist of the answer is, “Nothing, I’m disabled.” Real comfortable. There are only 100 of these scenarios that make socializing with people I don’t know well, a balancing act. And it’s one I’m not good at. I have not yet mastered how to function in this new world I’ve been forced into. And then in comes the insecurity. It’s amazing to me how many people have already avoided and/or walked away from me because I’m sick. I know illness is difficult to deal with and I honestly don’t fault anyone for feeling that way.
So here’s what I want to say to anyone who might read this; I’m gonna screw up with all this. I don’t really know what I’m doing. I’m trying to remain the person I’ve always been and who I’d like to be but also leaving room to grow and change. I may not always respond the way I should or say the right things. But I AM trying. Know that I have no problems talking about it with anyone who might ask, but also understand that scleroderma is not all there is to me. I do in fact have a lot to offerand you might be surprised. I could have something to give and we both might learn something.
