Songs of Memories and Memories of Songs

Between projects today, I took a mental break by taking an hour-long drive in somewhat quieter areas of my fair city. I plugged in my phone to load up the music library, placed it on shuffle, and cruised.

The lineup was interesting. Four songs in a row brought back memories of certain people and places in my life.

1) “Overcome” by Live took me back to sitting on the couch in a friend’s living room in Brussels as the sun was rising on a cold morning. That song was on the radio at that moment.

2) “Here Comes the Sun” by George Harrison brought back memories of my godmother singing that song to me as she swayed around her living room and I sat on the floor as a little girl.

3) “Crosses” by José González reminded me of a very dear friend who died in a motorcycle accident four years ago. I always feel he’s speaking to me through that song.

4) “Ave Maria” – Aaron Neville’s version, reminded me of my paternal grandfather. It was the first song I heard on the radio right after my father called to tell me he had died. I didn’t get to know my grandfather well, but I feel this song is “our” song.

If I had kept driving, I wonder what other memories would’ve wafted out of the stereo.

Simply put … depression

The blanket of depression is just getting heavier and heavier. @$$#^!&

I dream of a day of having the luxury of being able to travel whenever and wherever I want again.

I dream of having reliable help/assistance when I need it.

I dream of someone willing to occasionally cook, clean, and pick up things at the store.

I dream of not having people around who promise to help and then disappear.

I dream of people saying what they really mean and not what they think I want to hear.

I dream of being around people who truly accept me for who I am.

I dream of having friends who don’t call me only when they need a favor or want to be nosy.

I dream of having people around who truly appreciate the help I provide them when they ask for it.

I’ve heard countless times from people who say I’m one of the strongest people they know. Inside I laugh. They don’t witness the meltdowns. They don’t feel the heartache and frustration. They don’t experience the inner struggles with worthiness. The don’t hear the daily dialogue between my mind and body of chronic ailments.

I look fine so I must be so?

If I had the energy, I’d just punch the next annoying, nosy, fair-weather friend in the face.

Out of Darkness, Into Light

Happy Diwali

Today is Diwali, the Hindu celebration with many stories behind it. In short, it celebrates moving out of darkness into light. I created a very simple rangoli for it this year.

Odd thing though, I woke up this morning not feeling so light, bright, and cheery. I’ve been fighting all sorts of emotions this week. I’m happy to be doing what I enjoy doing, but at the same time I’m still struggling with having to do so much just to make my humble ends meet. I’m really hoping for that big break one day before I collapse from sheer exhaustion.

Regardless how cruddy I feel, I must keep making forward progress … somehow … some way.

My 42nd birthday is next week. I’m excited at the prospect of having survived another year of good and bad chaos without having been locked away in a cell, mental ward, or urn/casket. A lot has been accomplished since this time last year. I am grateful for it all, but man, I just need some real, high-quality rest without a care in the world and the chance to wake up full of life and light!

Trying to make peace

I saw my myasthenia gravis (MG) neurologist today for a followup. I’ve been having a decent run with symptoms for a few months. I still have crazy, weak episodes but I’m recovering from them faster than I have in the past. I’m only on Imuran (aka, Azathioprine) to treat symptoms. I’ve run the gamut of Mestinon, prednisone, and IVIG. Imuran seems to be the path that’s working for me.

After completing my strength test today, the neuro sat back, looked at me, and had teary eyes and commented that I’ve come a long way since this time last year. Yes, it has been a crazy, long journey. I’m now able to do light exercise (cardio and hand weights along with some general resistance exercises). I’m happy about that. He also noticed I’ve lost a few more prednisone pounds since I last saw him. I’m VERY happy about that! I gained 65 pounds while on prednisone! I’m working my way to losing 45-50 more pounds to get back to my normal and comfortable weight. As long as I can still use my stationary bike and my weights, and stick to a decent diet, I should make it there. If I make it in a year, that would be wonderful.

On the flip side, I’ve been battling envy and jealousy lately over some people in my MG world who have the luxury of travel, vacation, and just generally doing cool things they enjoy with friends and family. Most of these people have a lot more in the way of financial resources to be able to do such things. Some on disability have spouses  who are the primary breadwinners. It’s challenging for me sometimes because it’s just me. I do ALL of my own chores, errands, cooking, cleaning, personal planning, self-care, oh yeah, and I still have to make a living. Dealing with all of it on top of chronic illness (MG isn’t the only chronic beast I battle) is very challenging. I can’t delegate to others because there’s no one to which to delegate. If it has to be accomplished, I’m it.

I try to keep my thoughts and feelings to myself around them—the lucky ones— but sometimes the evil green-eyed one comes out revealing my desire to have the help I really need at times and to be able to go out and truly enjoy the world the way I used to.

With today’s successful neurology followup, I’ll have to make peace and enjoy calmer MG days. Those days will have to serve as my “vacation,” my “exotic travels,” and my general “good times” until resources catch up.

Listening to the world

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I’m doing something unusual right now, or at least something I haven’t done since I was a kid who would sit outside after the sun set and watch the stars appear with her godmother. I’m taking note of every sound I hear both near and far. Why? It’s just a fun and relaxing thing to do — listening to the world around me.

As I write this, I hear:

  • Music coming from a festival going on near me
  • An excited dog barking in the distance
  • Crickets
  • A motorcycle revving on the major road a couple of streets over
  • Clanging of a neighbor’s silverware (just washed dishes?)
  • Gentle drone of traffic
  • An ambulance
  • Murmur of a large group gathered at the bar across the way
  • Squealing brakes of a city bus or truck
  • A screaming cat
  • The gentle ding-ding-ding of my metal wind chime
  • Laughing kids
  • The hum of my refrigerator
  • A train blaring its horn
  • A neighbor playing the piano

It all makes up the sound of existence.