JUST… KEEP… GOING… keep writing, keep dreaming, keep planning, keep playing, keep recording… keep “doing”…
If I had to sum up my head space during the calm before the storm, those 3 months from June through August 2010, which were anything but calm, three words would have been my mantra: Just… Keep… Going… keep doing everything I can to not think about what was happening… Just… Keep… Going… until… well, I didn’t know until what. At the time, those words Just… Keep… Going… must have been stuck on repeat like some old broken record, somewhere in the recesses of my mind… I tried to calm the mind through meditation, which at least temporarily dampened that urge, enabled me to tap into some deeper truths, to come to some realizations that I may have never reached while blazing forward full speed on go… go… go.. mode every waking hour. Comforting truths such as, “I am exactly where I need to be,” or “I have everything I will ever need.”
But those insights were fleeting… and next thing I knew, during the month of June 2010, I was pulling material and collaborators together to submit for a short July 2010 artistic innovation grant for a 2011 start time. My project was Alice in Waterland, and used story, music and film to connect Bay Area teens with their watersheds. Part of me honestly was encouraged by submitting a grant for a project that was far in the future. It made me consider that if awarded, perhaps I could focus my new boundless energy (because in my mind, in 2011, 2012 I would be back to doing full activities having kicked this DM to the curb) on a worthwhile and creative project. The other sneering part of me shuddered at the thought of being awarded a grant. How would I even be able to implement it given the hand I was given?? I couldn’t work; I couldn’t drive; I couldn’t even leave the house most days for fatigue and stamina! (footnote: I wasn’t able to find out which part was right as I learned in November 2010 my project was not awarded.)
I also found myself chipping away at my young adult novel by the same name (I was on Chapter 7 as of July 1 2010!). Having never written a novel, let alone a young adult novel, I also was reading how-to books, studying fantasy books and doing research on my characters, scenes, plot, and everything water-related…
“Success and failure… we think of them as opposites, but they’re really not. They’re companions: the hero and the sidekick.” Laurence Shames
Having caught the recording bug in May, I was even inspired in June to write a few fresh new songs to record. One of these songs,“What You Got,” became my “anthem” through my storm. When life is hurling lemons at you; when you’re so tired you can’t get out of bed; whatever life throws at you, you got to pick yourself up and do what you can with what you got! It’s easy to want to give up-on a dream, on a path, a project, on finishing a song…especially when life throws you curve balls; I wrote this song to instill hope and encouragement-in others and I suppose in myself as well…
The first weekend of July, I flew down to LA, and Dave drove and met me, to record 3 more songs that would be destined for what would become Affair with the Muse: “Fairy Tale Love”-one part Disney, two parts fractured fairy tale; “Fall on your Deaf Ears”-a poignant tale of a love on the rocks not allowed to end; and “What You Got.” What was fantastic to me was, in addition to again getting to work with my amazing producer and wonderfully talented and inspiring musicians, two of these tunes would be arranged by Rob Shrock for the Section Quartet-a phenomenal string quartet that specializes in turning popular rock songs into quartet pieces! Rob arranges and works with accomplished artists such as Burt Bacharach and Dionne Warwick.
I remember feeling as if in a dream watching all these amazing players get inspired by my songs. It was enough to give me the needed energy to get through the recording session. I recall singing scratch vocals and playing through the songs and then asking to take breaks to rest while the players used my scratch takes as their guide. I also remember that when the adrenaline rush wore off, the exhaustion kicked in big time. By the end of the second day, when I had spent the majority of the day doing lead vocals, I fell short on one song… and ended up doing vocals for it later at another studio in the Bay Area.
Isn’t it interesting how sometimes we focus on what we don’t get done, or what we failed to accomplish rather than on all we actually have achieved? In one weekend, we had recorded drums, bass, all piano parts (thanks to an unexpected and wonderful contribution by Rob!), strings, scratch guitars and scratch vocals on 3 songs, and lead vocals on 2 songs… that was a lot of great work and a major accomplishment in a super short time. Yes, no wonder after 2 days of excitement, adrenaline, energy, and vocal work, my body was exhausted… anyone’s would have been!
“Act as if you have already achieved your goal and it is yours.” Dr. Robert Anthony
In July 2010, I wrote down some pretty ambitious goals in my journal… including:
What is super revealing to me is what I wrote under improve energy, stamina, health:
So maybe I did pay some attention to what was happening to my body, my waxing and waning energy levels, my need to sleep, my struggle with taking drugs daily… I just find it telling where health rated in terms of my priorities. I think I would rather focus on anything but and Just… Keep… Going!
I thrived on my walks around the neighborhood during July. I even made a game out of seeing something new on each trip: a row of flowers, a sculpture, a cool awning. In July, I also applied for Social Security Disability and officially retired from the State on Disability at 37. Receiving approval from the State was a significant milestone, and I am so blessed to be able to continue health coverage with a chronic disease like DM.
On July 31st, Dave and I went to my 20-year high school reunion. We all downloaded the highlights of 20 years to our peers like speed dating searching for just the right connection; checking out each others high school photo name tags for simple recognition, for how we used to look, who we once were; noticing who was bald, who looked like life had hardened them; who hadn’t changed; most drinking way too much. Time stopped for no one, I noticed. Surprisingly, many people asked about and said they’d listened to my music thanks to facebook. The pop rocks were a big hit. I spent the majority of the evening sitting outside at tables and really enjoying catching up with friend, many who I hadn’t spoken to since high school. I faded early, and Dave and I returned to our room while others talked, danced, drank and partied the night away… kind of like 20 years ago…. maybe some things never change.
August 2010 saw a few cool musical developments… On August 23rd I was already setting the ball in motion for something to happen with these new recorded singles. I knew I wasn’t going to do a physical album and focused instead on contacting my distribution company to determine the best strategy for getting the new songs out digitally. I also received my first licensing contract for some of the new songs. Further, I learned through an email on August 19th that one of my songs, “I Lost, You Win” had charted as an International Top 15! All this just weeks before the main event…
“A Perilous voyage is Life: And often storm-tost, we worse than shipwreck make on the rocky shore of the sea.”
In Dermatowhat?? Pt. 6, which took me through June 2010, I ended by asking, “Could anyone have predicted back then what would happen next?” I know I sure could not have seen the signs then, although in 2011, it is a different story…
By August 2010, I think I was down to about 10 mg of Prednisone. I noticed I was still losing weight, and food really wasn’t going down easily. I kept feeling that I just didn’t want to eat because I had a hard time swallowing, and eating required too much energy. Strangely enough, I didn’t connect my issue with food not going easily with trouble swallowing for weeks. Not until perhaps the last few days of August did I realize I wasn’t swallowing well. I hadn’t even thought to mention it to my rheumatologist! When pieces of food did go down, I didn’t digest them well. At one point, I remember drinking a raw (and typical) shake with apple juice, carrot, kale, celery, etc., and within 15 minutes I had severe cramps… I didn’t know what was happening; just that I wasn’t digesting food even with digestive aids!
I recall telling my rheumatologist about my weight and digestive issues. She suggested stopping Cellcept for the time as perhaps that was causing my stomach problems, and maybe the problems would resolve if I was off the meds.
This is the sequence of events leading up to September 4th, the best I can piece together:
August 17th: I went down from 10 mg to 9 mg Prednisone
August 23rd: I stopped Cellcept.
August 24th: Dave and I went to our only concert for as long as I can recall-and one of the only evening activities too since Cellcept kind of put an end to going out at night for awhile. We saw Crowded House at the Mountain Winery: an outdoor show on a crazy warm night in an amphitheater. I remember not wanting to be in the heat. I remember walking to and from the event being very tiring; I was exhausted from activity and the heat perhaps.
August 25th: I decided to pay a visit to my old friends at Immune Matrix to see if they could assess bio-energetically what was happening to me. Could they explain my weight loss, my inability to digest? Could they tell me whether I was toxic, not absorbing or draining? I figured I needed to follow up on the comprehensive testing I had done in Dec 2008 (see Dermatowhat?? Pt. 2). I recall it was extremely hot for San Jose-even in the hundreds. Heat and I DO NOT get along well… even pre-DM. Heat now really seems to exacerbate my DM symptoms especially lethargy, fatigue and depletion. I remember my energy was so strangely low, even the clinician commented on it. Absorption was somewhat of an issue; toxicity much less. I remember “reacting” to certain antigens but not to entire groups like I once did. I remember receiving a treatment for whatever antigens the computer spit out that my body was reacting to that day, including foods that my body had become sensitized to again (such as bananas, almonds, avocados, citrus: e.g., all the stuff I was putting in my daily shakes!), metabolic pathways, etc.. I suppose I went back seeking one obvious and glaring answer. I would have to continue my search.
August 26th: I had an appointment with a GI specialist to evaluate my digestive issues, pain and weight loss. At that point I was having more abdominal pain and recall I had an X-ray that didn’t show much. I was told to eat foods that I tolerated.
August 28th: Dave and I went to our second evening activity: a friend’s CD release party at Slims. I remember leaving less than an hour after arriving.
August 29th: the next day we played our last gig: a multi-hour gig outdoors that luckily was very low key. I recall standing and playing guitar and singing for as much of it as I could, until I needed to sit. I was crazy exhausted after the gig. I remember thinking I shouldn’t be this exhausted.
September 2nd: my digestive symptoms didn’t resolve, and I went back to another GI specialist. They scheduled an endoscopy for 2 weeks-around September 16th, since I believe the GI specialist would be going out of town prior to that date. I took the appointment but didn’t end up using it… I recall not being able to sleep that night because of breathing/swallowing issues.
September 4th: I remember sleeping more than usual. I remember not being able to swallow very well even without food. I remember making a vega shake and drinking it during the day. I remember feeling extra lethargic and thinking that a walk outside might just revive me, give me some needed energy. I remember taking a walk around the block around 6:15 pm. I remember coming home and reaching for my pills but deciding against it as I didn’t want to swallow them. I remember feeling dry and reaching for water. I remember not being able to swallow for several seconds, as if there was pain in my throat, clicking, and no ability to make saliva, and then I remember my heart starting to beat fast as if it was kick starting my body, like when you get a rush of adrenaline.
Then I remember calling Dave. Speaking like a robot and being unable to lift my body were unplanned events…