Im staring into a dark abyss as my husband and I head into tomorrow, and I am nervous. I’d even go so far to say scared. The husband starts a trial drug (Zilucoplan) for ALS and the number one thing I don’t want to do is get my hopes up. Which is ridiculous to even say because we all know I will. Even I am well aware of that. It’s just part of human nature. We hope.
It’s been almost a year that my husband and I received the diagnosis that he has ALS. And here we are on the precipice of something that could help slow the progression. That is, of course, if he gets the actual drug. Neither the doctors, nor we, will know. Probably not even for some time after the preliminary 6 month trial. There is a chance that he could get the placebo. And this disease is not one to “wait.” So, I’m hoping beyond all hope that gets the drug. (See, impossible not to.)
The odds are good (75%), but our luck hasn’t been the best these last two years. Which is why I hesitate to let myself have even an inkling of optimism. I don’t want to be wrong. The hurt would be even worse to have this expectation for positive results, but in the end to not have them at all. It would almost be better to never try it to begin with. However my husband wants his struggle to mean something. And regardless of him receiving the true drug or the placebo will still greatly contribute to the cause. It will help make someone else’s future life better.
All opportunities worth doing in life are scary. These actions are filled with infinite unknown variables. Which is why we do them, why we take these risks. We want to see what comes to us out of the dark. We just hope they’re shimmering in our favor.
I find it quite humorous that after writing a post on how I have this uncanny ability to remember tiny details of memories I have done the opposite. My memory is shit. It is almost as if my brain said, “Oh, is that a problem? Good luck, bitch. I’m out.” Since then I struggle to recall anything. It genuinely sucks and stresses me out like no other. (Well, it’s comprable to the stress I have when I lose my balance.)
The cause of this is trauma. I have mentally and emotionally been through a lot (selling my house, buying the new house, moving, my husband’s ALS, my mom’s alzheimer’s, work, the state of our country) that it’s really my brain trying to protect itself. At least, I hope. Otherwise, this may be permanent and that bothers me.
Last night, my husband told me that I am not present anymore. That whenever I am around I am only half there, the other is somewhere entirely different. Upon my own inspection, he’s right. (He usually is.) Lately, I do drift mentally. At times I will genuinely ask someone something they had just told me. It’s as if my brain heard it, but failed to move it into a permanent file. Other times I’m trying to do multiple things at once and keeping myself from enjoying the present, like when I was playing a game of magic with the boyfriend. I was watching tv, playing on my phone, and playing the game. Even though I won, I don’t really know how or why.
In an effort to combat this “adrift” mental state, I’m going to try and limit doing “too much” all at once. I need to be focused on individual tasks (for the time being.) Maybe then I can get my mind less foggy.
In regards to trauma, I just need to accept that this is life. There is no sense fighting against what is actually happening. There is so much power in acceptance, because then I can focus on the things I do have control over. Standing in place and wishing it all away is wasting precious hours that are better suited for making life bearable.
I need to write more. For a few reasons. One, to keep my skills sharp. Lately even my texts have gotten off and that bothers me like no other. I hate sounding like an idiot.
Two, It keeps me sane. I have been described as a very “cerebral” person and that could not be more on target. Living in my head is my favorite past time. Thinking about everything that is going on in my life ends up turning into toxic sludge which poisons my thoughts and actions. Writing them out extracts all of it and leaves peace
Three, I have a story to tell. not many people do. I use to worry I never did. Maybe that’s why all of this happened. My desire to be “interesting” caused all of those around me to suffer. Which lends credence to the old saying “be careful what you wish for.”
I know that, I didn’t really cause these things to happen (my dad’s death, my mom dying of Alzheimer’s, and my husband dying of ALS). Yet there is also the belief that the words we speak actually effect our lives.
Be careful what you think and feel.
With perseverance I will write more. I have to.
Somewhere along the way I began to doubt myself. My decisions, my beliefs, my wants, my desires. Anything that requires a definitive choice I always second-guess it. Is it the right one? At times it leaves me in limbo and others it keeps me from enjoying something because I spend most of my time wondering if it’s the right one.
My biggest regret in life is that I doubted my want of my husband. For a good length of our relationship I have questioned if this was the right one for me. There were times when I told my doubt to get lost, but for the most part I couldn’t believe. In this fear, I ended up doing and saying things I wish I hadn’t. It kept me from loving as much as I have found is possible. Only now have these feelings left me. And I’m ashamed.
Death makes forces you to look at your life. It makes you make snap decisions that you then have to live with. It also provides clarity. After my husband’s diagnosis any cloudy judgment vanished. I knew what was important. I knew where I needed to be. It’s just now, I have to live with the shame that comes with being so blinded by my inability to make a choice and the second-guessing.
Feeling sure about something is a myth. There is absolutely no certainty in life. You just take leaps and hope you land on your feet. Once you’re in the air there is no turning back. I wish I had understood this then.
I must let these feelings of guilt go or I risk diving into a depression and keeping myself from further enjoying the calm of my realization.
Don’t let yourself question, after the fact.