Viewing entries tagged

Long Night

Long Night

So tired of not being able to rest because of the stiffness and pain. The progress of this disease is incredibly cruel. It has taken so much, mercilessly, silently, and without so much as a blink.

My time is more limited than most of my peers. Because of this, I usually play for keeps and take betrayal particularly hard. If I seem bombastic, or too much, it’s probably true. I am not sorry if this alone makes you uncomfortable.

I have much less to lose than you might realize and do not share the same worries, but you may not realize what you mean to a woman who can feel a mountain looming at her gates.

We all have our invisible burdens. I can appreciate what I have, recognize my privilege, feel deeply for others- and understand I’ve lived a good life. I’ve been in love. I’ve given birth. Many do not get the chance to make those choices or feel the opening of big love!

This is a swan song til my body becomes a cage. Maybe a similar recognition automatically happens as we hit a certain age and our people die. There is no escape. I was a big fan of Six Feet Under and it’s profoundly simple series finale.

If you want to hurt my feelings, or make me completely wrong, first consider that my worst nightmares have already come true. Opinion is are the least of my concerns, and there is nothing you can hurt me with that I’ve not already said or thought of myself.

Things and people fall away. I will remember each person I have known by how I felt as they arrived, or as they left. The rest can be blurry. Did we leave one another better than we found each other?

No drama, no despair- just reality. My body is obviously failing faster now because of Parkinson’s symptoms and the side effects of meds. All parkies know what’s coming. This jagged, ever-present awareness is also based upon observation, experience and science. I can feel the downward spiral gain momentum, and I’m ready for what’s coming.

I don’t need to hear more hang in theres, because we all deal with uncertainty and various forms of chronic pain. I’m strong, I’m just weary. Please don’t mistake this for a solicitation of pity, or wallowing in my own sadness. I’m rather impossibly flawed and wounded, and can hurt people...just like everyone else. So this is no cry for help, it’s a statement that I need to put down. It’s too heavy to hide.

My close friends and loved ones are suffering their own defeats, losses, and disorienting grief. I love them so much and only regret I cannot be more consistent with energies, with capabilities, with focus.

Unfortunately, medications and staying active are the only things that control my ability to move and function now. Also, it’s impossible to have a low anxiety level when you don’t know how long you’re going to be able to function in basic ways we all take for granted.

I will continue looking up and out, with no time for or interest in pretenders. If you see me smile, you can know it is genuine.

There is no space left for anything not rooted in truth.

I can’t even get my kids to take the garbage out. I marine crawl up stairs on bad nights. I am not taking in nutrients as before and keep losing weight. These are just a few things bumping around at 3AM.

Rarely do I feel safe and sound, and the news never helps, but I remain infinitely grateful for the abundance of love. Hearing from you and mirroring it back every chance I get feels good.

Even though my basic kindness is too oft mistaken for other things, it is deeply embedded in my nature.

I remember explaining to a former intimate that symptoms and personality flaws are quite different things, and apologizing for causing her any additional trouble. People will see what they choose, based upon their personal experience. Let em. A few gems have come my way with empathy and kindness and _real_ compassion. These are my people.

Thank you for reading what I write. Hoping it reminds you, because I know you hurt too, that you aren’t alone.

Unedited and a bit raw, for the PwP who wrote to tell me she wants to “give up”. That’s simply not an option. Make another choice. I’ll see you there, OK?

Photo: My son used to fall asleep hunched over his sister. He was so protective of her. I hope they are always close.