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.)
A captioned version of the music video is here at dotSub.
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
After Gadget 
I am so very sorry for your loss. Wish I could ease the pain somehow. *hugs*
I have empathy for you regarding music. I used to love music…all kinds. Now it is so difficult to listen to it. It hurts my ears.
But Gadget? I lost a husband 25 years ago. I grieved and moved on. But just thinking about the time when my dog Jager wont’ be with me just drives a knife into my heart. I try not to think about it but I know it will happen. Jager is not a service dog but he is my best, best-est buddy. More so than the husband, go figure?
I hurt so much for you. I am so sorry for the loses you have endured. But that you are enduring and working towards something positive with Barnum and THAT gives me hope. I wish I could help (as Sarah said above) ease your pain. You’ve helped me so much. I wish I could return the favor…
You touched another nerve.
Hit me hard…again.
I do not have a service dog, but one of my very best friends is my dog. She’ll soon be 19, and has been battling bladder cancer for almost 2.5 years now. (I say battling but really, just the surgery was a battle for her…after that,..she acts like nothing is wrong) July 1st, 2010 they told us her cancer had returned, we thought…she’d have to have surgery again (the first was in March of 2009), but no, they said her bladder was too small, and the cancer was too aggressive. She had 6 months to a Year to live…and it would be hard when she got to the end because she wouldn’t be able to urinate. We’d have to make some hard decisions.
Of course, we are almost 4 months past that year mark, but we know, it will come. She now is hard of hearing, has cognitive behavioral disorder (Alzheimer’s for dogs) , and cataracts. But she runs, and plays and jumps and chases the cat…this dog just doesn’t believe there’s anything wrong! Thank goodness.
But I have been grieving since they told me, I look and her and know I’m going to lose her. The grief for her, brings back the grief I felt for my mother when she died…it’s been 19 years since she died. (yes, Sandy was born shortly after she died, or so we think, she was found in a garbage can and the vet guessed at her age.)
Right now I’m also going through the grieving process of losing my normal life. And realizing, I won’t be getting most of it back.. Losing my hearing.
The music theme for the blog carnivals has been a tough one for me too.
I can’t hear it any more. Well, I can hear some, but some hurts, and some just sounds garbled. I have a good friend who lives for music…he cannot understand how I can be ok without it. Well, it’s not completely gone, I have memories, and my hubby and I sing sill songs…very off key…
But music wasn’t my life before. Don’t get me wrong I liked it, I’ve been to many shows, concerts….there are certain memories that are triggered by music. The music from my wedding will always be with me.
But it’s not a big part of my life now. And thankfully, it never meant to me what it means to my friend. (although, I really can’t stand most of the music he likes, and it really, hurts me to hear…he wants me to like it…it almost seems as if he needs me to hear…..I can’t…and you have to accept that.)
Oh the things that are going through my mind.
I’m glad you felt you could share your story.
wendy
Thank you, Sarah. I actually am doing okay. Being able to grieve *is* easing my pain — being able to write about it, to talk to people about Gadget, to write about my grief — has been very good for me. I am feeling grief now, yes, but it’s not the kind of stabbing, relentless, consuming, no-way-to-see-through-the-tunnel-of-pain kind of grief I had when Gadget had recently died. And all the horrible stuffing-down of my feelings and numbness. Now, I have actually been able to cry about him to people and feel a great weight has been lifted from me. I feel lighter, more present, more hopeful. So, even though this post (and more to come, probably) seems very sad, once I have written it and set it free, I do *feel* more free.
Hi Kathy,
I’m sorry to hear that you have lost the joy you used to experience with music. Illness can bring so many losses that are often not apparent to others.
You are definitely not the first person I’ve heard say that the loss of a person, even a spouse, parent, or child, was less painful than the loss of an animal companion. I think this is very hard for some people to understand and/or accept.
It really touches me and brings me joy to read this:
“You’ve helped me so much.”
I just feel surprised and delighted to know that. I would love it if you felt like sharing more about that — either in the comments, or in an email if you’d like to keep it private. Or maybe we could have a discussion and cross-post it on our blogs? There are so many bloggers I want to do that with, and I keep suggesting it to people, and then not following through. But my intentions are absolutely sincere! LOL. You know how it is.
And also this:
“But that you are enduring and working towards something positive with Barnum and THAT gives me hope.”
Yes, I have a lot of hope with Barnum, especially lately, because we’ve had some little breakthroughs that I hope to write about soon. Also, he just brings me so much joy — he’s such a sweetie and a love-muffin. He is lying on my bed right now, snoring very loudly for a young dog, and twitching his big paws and whiskers. (Awww….)
I always appreciate your comments, and often learn from them. I really value having “met” you through blogging. That’s been one of the unexpected gifts of blogging, for me — meeting people through the comments and developing online friendships.
Oh Wendy, I thought of you when I wrote about “everyone likes music.” I wondered if I should qualify that. I used to be friends with several Deaf people, and most of them had no interest in music, even when interpreted by a gifted ASL performance interpreter. However, my PCA and friend who was Deaf actually liked music quite a lot and had a hearing-aid feature to allow more music enjoyment, so then I dithered about a footnote, etc.
But I know that it’s not just people with neuro issues, like me, who can’t tolerate music, but also can be an issue with tinnitus or hyperaccusis or Meniere’s, etc. And it’s certainly very different to be hearing and then lose your hearing, especially if music was important to you. That sounds like a very painful loss.
And of course, everything is harder when others don’t understand. I often feel like the losses or struggles of the illnesses themselves are not nearly as painful as specific types of reactions to them by other people. Not accepting disabilities/limitations is very hard for me to take. I can imagine that your friend not accepting that you are not as upset about the loss of music as he thinks you “should” be is very difficult. I would want my friend to say, “Thank goodness you are not feeling destroyed by losing the ability to hear/enjoy music.” I have always felt grateful for the losses I didn’t suffer when I became disabled by chronic illness. For example, I got sick young enough that I had no long-term relationship, important career, or other things like that to lose that friends who got sick later in life were quite bitter and depressed about.
“Right now I’m also going through the grieving process of losing my normal life.”
Yes, this is such an intense process, has so many layers, and can take time because of changes in your life or in your condition, and how those losses change. Often it seems like I get to a place of acceptance for a while, and then I face new layers of loss before I can move on again. I think the first year or two of a new illness are often the hardest. In my dog grief group, we talk about a “new normal.” You still have the loss, but you also adjust eventually to a different kind of normal. It’s sort of a paradox and can be hard for others to understand or accept when they see us go through it.
Wendy,
I meant to respond also about your dog who has bladder cancer. I don’t think you gave her name. It sounds like you are really dealing with the canine cancer roller-coaster. The successful treatment for the initial diagnosis and then the recurrence and the waiting game. It’s all so hard. So much joy, but also so much fear and worry and work and loss.
It sounds like you are dealing with a lot of anticipatory grief, which is just so normal for what you are going through. I think in some ways anticipatory grief was the worst for me, because I knew Gadget was dying, and yet he was still here, and I was devoting all my time and energy, and all my thoughts — sleeping and waking — to him, dreading him dying, and also just totally overwhelmed with grief and exhaustion in caretaking. And it’s an invisible sort of grief, because your loved one has not died yet, so other people don’t really understand. And I felt a lot of confusion about it, myself.
I really encourage you, if you are able, to get support. Remembering Niko has a very good anticipatory grief page — http://rememberingniko.wordpress.com/saying-goodbye/anticipatory-grief/ — and I also wrote a post that dealt some with anticipatory grief: https://aftergadget.wordpress.com/2011/07/29/flashback-of-grief-and-relief/
Some of the pet loss hotlines and websites now have material and provide support on anticipatory grief, too. One thing to keep in mind is that your relationship has changed, and so you are already mourning the loss of that relationship, and perhaps of that sense of sureness or security in her continuing presence.
I know it can be very difficult to approach a hotline situation using relay (if that’s what you’re using), so I want to acknowledge that that can sometimes end up leaving one feeling more alone. However, sometimes people surprised me and were familiar with relay or natural about it. There are also now more internet resources, which I think is sometimes more accessible.
This is a page from the Washington State vet school’s grief site. They have really good resources: http://www.vetmed.wsu.edu/plhl/grief/
I hope this helps.
I feel like I always learn something new when I read your posts. Thank you for that.
Thank you so much. You know your site is a wonderful resource for people who are dealing with the death or terminal illness of their dogs. I refer people to RememberingNiko often.