Doing anything but this, the diary of a diseased woman

I have a ton of work to be doing. I mean, a ton. Like if it was not inside this computer it would probably weigh 2000 pounds. See, literally, a ton. And as I started writing this last night I was not doing any of it. I wasn’t even doing this, I had stopped blogging 2 sentences in. I don’t smell a Pulitzer anytime in my future… I wanted to be doing anything but focusing. If it was anything other than sitting in my melancholy, I wasn’t interested. Adding insult to injury there was nothing on TV. Since when did network television turn into 3 hour blocks of the same inane competition show? Why can we not put together quality programming anymore? What about story lines and character arcs? Give me someone to be invested in for longer than a 2 month competition in which nameless faces are replaced with more nameless faces. Dammit Monday night, you are a TV nightmare. I had already worked out, there was nothing on TV, reading, working or being productive were all out of the question so I had to find another way to waste time.

So I sat, with my thoughts, and sang to myself. Ever since I was a kid I have liked singing. Whenever I am sad music makes me feel better. It makes me hopeful or even in the way it magnifies my emotions it helps me heal. Since Herbert reared his big ugly head I have had a tough relationship with music, it’s been on again off again. Having so many emotions bubbling so close to the surface music just brought it out. How can I stifle reality if random singers on the radio seem to be speaking directly to me? How can I avoid the progression of what I have to deal with when the melodies are pushing me forward? It had become problematic but in my infinite paranoia I had decided that I have to sing before I lose the ability. I can already recognize an inability to hit a tone with my marginally diminished hearing. I can only imagine what it will be like when I am carting around my “dead ear” as the doctors called it. I prefer the term decorative ear. It’s not totally dead to me, it’s not like it will start decomposing when it stops hearing. It still will hold my earrings up. Plus I love a good pair of earrings. So I sang, to myself. At times I thought, this is ridiculous, but then I thought, this is therapeutic. It wasn’t like I sang while I did other things, I only sang. I just belted out. Most likely to the dismay of my neighbors. I don’t know if it made me feel better but it did make me see how I felt to begin with.

You see this weekend was different for me. It was not my regular “fun” weekend of studying and snuggling up next to a good book (or mediocre book, or text book, mostly just required reading books), I actually had to socialize. Which was great, I saw some of my favorite people and some I had lost touch with. I was there for other people, one of my favorite things, and I spent the weekend on my toes, presenting myself as the loving person I am. The person who up until the weekend was consumed in a selfish general hatred of all things healthy. I gave up my rage and replaced it with outward flowing happiness. And then, the weekend was over. Having come out of the safe refuge of my house and my homework I had started to let people back in. Not that the people I love most were ever out, all of you will never waver from the true center of my heart as you are all my world. But I had been isolating myself. And then I realized why isolation is such good protection, because when you turn around and go home you return to your “me” space. Which is great but being with people only serves to magnify that you come home alone. I worked hard to combat this feeling. I am overall, even with Herbert a very happy person, but I have my moments and last night was certainly one of them. I started calling all my “regulars” no one was picking up and then I just stopped trying because really I had nothing to say. What do you say? The immense love I was shown over the weekend, the consideration and compassion from a friend dealing with his own deep and difficult life moments, the love from a friend embarking on a new life’s journey, the hugs from old friends, those had sunk me into a deep funk? No way, can’t say that. I ended up silently sitting on the phone with Jason. Just sitting. It was better than sitting alone. Nothing made sense. Nothing. I mean why was The Voice on all night. Why did I have nothing to watch? Why did I suddenly think my deafness would take away my joys in life? Why was I so sad?

Blarg. Maybe it was just that I had a cold. Maybe it was just that I was overwhelmed with love and all I could do was collapse under the beauty of it all. I am not sure. I woke up today early, and got dressed up in another coveted outfit. I can’t leave these outfits for janky faced Samira, they have to make their appearances now. While I can still use my face as an accessory and while my ears can still hear all the compliments I am sure to get 😉 Jokes aside though, one part of the sadness I have been meant to face in this process of understanding my new normal is reframing myself as someone with a disease.

When you hear people talk about disease it can conjure up a lot of different images. For me I think of germs and outbreaks, people with SARS in their little masks. I don’t think of me. Normal old me. It had stuck in my head that a few doctors had referred to Herbert as a disease. I remember brushing it off, thinking no, he’s not a disease. I’m not diseased. I feel fine a lot of the time and even when I don’t, no one would ever know. Diseases are obvious, they are gross, they are what happen to other people. I, I am not diseased. So in an attempt to prove this to myself I googled it.

Define: Disease

Here is what I got back:

Aw crap, I think I have a disease. I had to sit with the negative connotation of this. “signs or symptoms or that affects a specific location and is not simply a direct result of physical injury” I had no physical injury and I am affected. Oh man. Then I thought, okay, well it doesn’t have to be such a bad thing. Then I had to stop myself from becoming that cliche where “my disease saved my life.” My life isn’t in need of saving. I don’t need to appreciate the people around me better. I already appreciate them just fine. I don’t need to be more giving, I give a lot. There is nothing left to give. I don’t need a disease to tell me what is important. I know that. Life told me that. Love told me that. My friends and family have always kept me accountable to them, to love, to life and to learning. You don’t need to be a victim to learn how to love. You just don’t. But that doesn’t mean I’m any less diseased. Ugh, at least you can’t catch it. At least in my moments of darkness I can say, “hey, it’s not my fault, it is just my disease.” I’m willing to bet that would shut up any critics real fast.

So last night I was a singing, diseased, procrastinating fool. And today? I snapped out of it. I have focused on school and class already today. I am working hard and on top of my game. I think I needed last night though, to help me understand. To allow me to sit with the state of my life and understand where it all can go. I needed to learn to live in the now, even if the now isn’t what I thought it would be when I spent my whole life looking forward to my tomorrows.

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