I’m not sure if it’s the time of year, or if it’s that I have more support now and am not in a horrible crisis every other day, or if it’s just taken this long for the reality to hit me, but the grief is hitting me. Now, after years. Coming up on the three-year-anniversary of my good friend Norm’s death and the two-year-anniversary of my service dog Gadget’s death, it doesn’t take anything for me to start crying.
The Disability Blog Carnival for October is on the theme of music. It seems as if the theme of music is a popular one for disability- and illness-related blogs. I’ve seen it crop up as a theme for contributions in previous editions of PFAM, ChronicBabe carnival, and disability blog carnival posts. I generally sigh and move on when I see a call for blogs pertaining to music, because — I usually feel like a freak admitting this publicly — I don’t listen to music.
Listening to music is taken as such a given, cutting across age, race, gender, ethnicity, disability or nondisability status. Everyone likes music, right? Wrong.
I used to like music. I used to go clubbing, even. I have my favorite songs, singers, bands, groups. But after I got CFIDS/ME, for the first two or three years, I couldn’t tolerate music at all. It took little to put me in sensory overload. Far and away, the worst sensory assaults I experienced were definitely olfactory, but coming in a distant second was repetitive sound. Then, slowly, I was able to tolerate and enjoy limited periods of certain types of music.
For the next ten years or so, on rare occasions, if I was having a “good energy day,” and everything was just right in my physical, cognitive, emotional, and sensory world, I could put a tape in the boom box (yeah, I was behind the curve), and enjoy some Abba, Madonna, Tori Amos, Sarah McLaughlin, India Arie. . . .
Then, Lyme disease and other tick-borne disease struck in 2007. For years, I could tolerate almost no sensory stimuli — sound, light, touch, even the movement of the air around me was palpably, nauseatingly painful. I couldn’t even imagine wanting to listen to music. Slowly, due to aggressive antibiotic and antiparasitic therapy, I have been improving. I don’t have to wear sunglasses around the clock anymore. People can usually sit on my bed or touch me without me screaming in pain. I still don’t really gravitate toward music. There’s something about it that feels too chaotic. It doesn’t impart information or take me on a carefully constructed journey, like a book on tape does.
But music has an intrinsic emotional sense memory. Hearing a song that was popular when I was in junior high, high school, or college always transports me back to those moments. The emotion of those moments. Because of my neurological damage from CFIDS/ME and tick-borne infections, I have to carefully monitor and modulate my emotions. Sometimes, music jangles too much. On rare occasions, though, because of its direct connection to my emotional core, music is the only thing that “works.”
This was the case when I was grieving for Gadget. Gadget died on November 19 after a successful six-month battle with lymphoma and a ravaging two-month rampage by mast cell cancer. I was numb. I was in shock. I’d already lost most of my friends, and especially my best friends, to death or the complications of my crisis-ridden life, and now my partner, assistant, caretaker, student, teacher, child, companion, brother, and friend was gone from me, too. I was in despair. I had no way to let the feelings out. Everything was too painful.
For a while, the only solace I found, the only way to release just a little grief, to cry just a little bit, was to listen to The Commundard’s version of “Don’t Leave Me This Way.” I remembered it from my college years, from coming out. Even though the lyrics are mostly directed toward a lover, the sorrow, yearning, loneliness, and alienation that Jimmy Somerville conveys in his stellar falsetto, as well as some of the repeated lyrics, called directly to me, spoke my feelings to Gadget:
Don’t leave me this way. I can’t survive. I can’t stay alive. . . . No . . . don’t leave me this way. I can’t exist. . . . Don’t leave me this way.
All I wanted, all I could say, when I was grieving was, “I want him back.” I was abandoned, bereft. I cried to him to come back, “Don’t leave me this way.” I couldn’t believe he was gone. I wanted him back. Nothing else made sense.
I plugged my headphones into my computer, found the music video of the song on Youtube, and played it again and again, at the highest volume.
Here’s the music video, if you’d like to watch it. (Note: If you’re reading this post in an email, click here to watch the video.)
I still listen to it, sometimes. I still choke up and think of Gadget and marvel that I am still here, and he is not. I know he didn’t want to leave, but he couldn’t survive and stay alive. He needed me to let him go, to leave me this way.
– Sharon and my long, lost Gadget