We all know about the ‘healing’ properties of music. Especially for us with chronic illness and pain, music can act as a way to transport ourselves out of our present when things get too much for us – just by hearing that melody.
We inadvertently embed music into our thoughts, especially while we’re young building and experiencing our lives. Do our brains know that we will, at some point, need this music to take us back to an earlier experience as a means of helping us get through a new one? Music does that for me when I lose my bearings on who I am now, living with lupus.
There are two songs that have been pretty significant in my life and my health, that just happen to be associated with experiences a decade apart. The connection between these two times and tunes illustrate to me that there is a thread we follow in life, well or not, that I need reminded of in order to keep moving forward.
In the early 80′s, I decided to take $300 – all that I had- and backpack down through the Baja Peninsula (California) to the southern tip of La Paz and Los Cabos. It was as if I’d lost control over who I was and something else jumped in to decide my future for me. With a last minute tag-along by my friend “Sandra”, I just let it all go embarking on a journey to a glorious unknown -because we were young and, therefore we could.
When we decided to hit the mainland and visit Mazatlan and Puerto Vallarta also, we found that we couldn’t talk them into giving us ferry tickets. Two Canadian windsurfers were our only way onto that ferry and stowed us on their VW Camper (Van) making us a part of their ‘crew’. We jumped at the opportunity, because we were young and, therefore we could – and besides, …well, never mind.
I tell you all this because it sets up the first song that I keep in my ‘life with lupus’ playlist. It was the one playing while sitting in the passenger seat of that van next to “Max” and on our way to Puerto Vallarta - “Road To Nowhere” by the Talking Heads. I can still hear the motor of that VW, see the beautiful flora all around, feel the warm breeze through the windows and thinking- while listening to that song- how grateful I was that I let go for just a moment to be there – on an uncharted journey of mystery (of course, I didn’t realize at the time that his name really wasn’t Max), of risk, of learning, of romance and awe. Granted, there were Coronas involved, but I still hold onto these feelings of it all… being so overwhelmed one minute, then finding myself craving more the next. I knew that I didn’t want this journey to end, when I would have to go back to a life that I didn’t feel a real part of anymore.
Ten years later, another song and experience found their way into my life and involved a car once again (which offers a handy metaphor here). This experience was different, though, …or so I thought.
While in the middle of a brutal divorce and my first year of graduate school, I had gained nearly 40 lbs. of water weight due to, what my doctor at the time concluded, “a low-level depression”. I knew things weren’t looking good for me, but I chose to focus on my girls and the amount of stress they were being put through at that time. After taking them to Disneyland, what I thought would be a great farewell, I met up with a new doctor who got me a ticket into a new crew of physicians that took the time to help me. My first doctor ignored my plea for general tests before exploratory surgery, calling me “uncooperative” and I chose to move on to someone else- it was my body and, therefore, I could. My new doctor asked me to pee in a cup, anything I could muster, and told me what I already knew was true: I had lost my kidneys. I remember being so grateful to him for telling me, even though it wasn’t the news I wanted to hear.
Today, thinking back to that hospital room and isolated from everyone I knew, I can still feel the mystery (of course, I didn’t know what lupus was at the time) and the risk I felt in possibly losing my daughters. Or the romance of being catered to, even if it meant being drained of blood every morning at 5:00 am. Granted, drugs were involved in an effort to try to bring my kidneys back home to me, but the feelings were real. The awe I felt about my body telling me, once again, that I no longer held a sense of control in deciding my fate. I cried an entire day in that room and, when my doc returned to go over preparations for dialysis, he asked me what I had done. When I told him that I simply cried, he told me that it had worked. My kidneys were back to functioning (“somehow”) and I could go home.
I didn’t hear the soundtrack for this experience until they forced me out of that room, which felt like I was being born all over again. Sending me out into a cold, parking garage where my ‘ride to somewhere’ Geo Metro was waiting to take me back to a life that I didn’t feel a part of anymore.
After sitting there crying in my car for what seemed to be hours, I thought about how I had chose not to allow anyone to tag along on this trip and that I preferred to go solo. I knew I couldn’t do that, though – no matter how difficult it would be to not speak the same language or have all the uncertainty about my future packed into my head during my five day hospital stay. I suddenly realized how grateful I was to have my daughters and friends to go home to and how overwhelmed I felt that minute, yet craved a chance to make this new journey my own. At that moment, I slowly turned the key in the ignition. When the radio came on, the lyrics of the song told me my course was true:
“The moment I let go of it was
The moment I got more than I could handle
The moment I jumped off of it was
The moment I touched down“
(“Thank U” by Alanis Morissette 1998, Maverick Records )
“Thank U“ ~ for the music that takes us back to those memories, reminding us to let go and be grateful for not knowing too much about where we are headed. Last year, I celebrated my tenth year anniversary with lupus and that dialysis isn’t a threat right now. My kidneys are still tagging along at 100% – because we’re a team and, therefore, we can.
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Remember: MLWT is hosting a call for guest writers living with lupus or lupus-related conditions to send in submissions. A variety of voices will be posted throughout the month of May for Lupus and Fibromyalgia Awareness Months. The theme for submissions is “What lupus means to me…” and are due by April 25th.
