Long time waiting for this last Buh Bye MS entry. I may not have a good excuse for the delay but I have a dandy explanation: I didn’t want to write it.
When we last left our reluctant storyteller—that would be me—she had wrestled her intruder, a.k.a. multiple sclerosis, to a virtual standstill. The symptoms were chronic but not progressing, and nothing new had darkened the horizon for quite awhile, health-wise.
Lest you think I did this all myself, let me assure you I had more help than Houston has during a shuttle launch. My parents supported me emotionally, physically, and monetarily, stalwartly and uncomplainingly, throughout the entire nasty affair. My daughter, Lona (short for Ilona in case you hadn’t figured that out), gave up wide stretches of her childhood, youth, and young adulthood to drive for me, fetch for me, remember for me, do for me, worry for me, and sometimes even think for me. Bera researched, suggested, denounced, prodded, guided, and did everything but slap me upside the head with a 2 x 4 to help me. Ron, bless his wacky, wonderful heart, just kept sending those Chelation tablets. My friends all deserve a Presidential medal just for hanging with me all this time because I was never —trust me on this—stoic or silent. My mother-in-law, Doris, gave me the kind of support one might expect from a BFF without ever once making me feel I was too needy or intrusive. And Tom …
And Tom.
Tom had a psychological break in October, 2006, just about 18 months after his mom died. It was as predictable and expected as Phoenix heat in July or wind down Michigan Avenue in the winter, but remember the old musician story about the guy who knows that in five years, he’s going to turn a corner and somebody’s going to punch him in the nose? As much as I could have clocked Tom’s crash with an egg timer, it was still a punch in the nose.
This was right in the middle of us “acquiring” the three young adults we took into our home (and hearts) and sent to community college. Tom balked at every single new person that came along until the point when he said, “Go get her!” about Tyger (a.k.a. Kathy) after Lona described Tyger’s living conditions down in Texas; “Go get the cat!” about Nyxie (a.k.a. she doesn’t like her real name so I won’t use it) when he heard no one was actively caring for Taru at her parents’ house while she slept on our floor to avoid the 45-minute drive to and from work every day; and “Get your ass in here!” about Kata (a.k.a. Eric) when he was sleeping on our back porch because he’d gotten himself into trouble and had no place else to go and the weather had turned cold and rainy.
My husband was a very strict, hard-nosed guy with a soft, marshmallow center. Or, as one friend wrote on his death: “He was a gentle soul with a bombastic spirit.”
I have to believe our expanded family gave him something and someone else to worry about over the next three and a half years. I know he grew to love and cherish them. And rely on them; he definitely came to rely on every one of them, almost as much as he relied on Lona.
Of course, he relied on me most of all.
Those years were very tough. He rallied now and then, but mostly he wanted to die. He had no plan; he wasn’t actively suicidal. He was just done. The live-music business was dying (it’s beginning to revive again now—also predictable—in a haunting example of too little, too late). He had finally finished his beloved History B.A. the previous semester and was calf-deep in a master’s program but, “To what end?” we bantered endlessly. No one was going to give a 50+ year old life-long freelance musician a straight job, no matter how many letters of recommendation he produced or how many applications he painstakingly filled out. His position playing the piano at Knott’s Berry Farm had become bone-achingly dreary, and his need for constant connection with me drainingly obsessive.
So we talked, which is to say, he talked. I listened. (Ironically [or not] I had written a song for him called “I’ll Still Listen” back at the beginning of our marriage; he wrote one for me called “Just For Laughs”—an unwitting foreshadowing of our lives together.) He despaired; I encouraged. He grew nasty as he got more despondent. I grew angry as I got more impatient.
And the MS gave way, just a little bit.
We both put on weight, which gave him more cause to lose hope. I hated the way I looked, but could not help noticing that for all my extra weight, I physically felt better.
Was my miserable parasite invading his psyche?
In November, 2009, I took him to the ER (whoa—talk about your turnabouts). Doubled over with pain, he “knew” he had another kidney stone, that’s how bad it hurt, and demanded Toridol, if that’s the right spelling, for the pain. The damn ER doctor ignored his belligerent request and ran some tests.
It wasn’t a kidney stone. It was pancreatis. Very painful. He spent three days in the hospital, hallucinating from continual doses of heavy pain medications and telling me to, “Get the hell out of here.” I got the hell out.
I also jumped through a couple dozen hoops to get him on a county medical plan so he could continue to get medical attention when he came home from the hospital.
Instead, he continued to look for a straight job during the day and went out nights to figure out how to break into the dueling-piano world. He was a natural. But he was tired.
Tired was something I understood. My tiredness—not fatigue at this point, just tiredness—came from ghosting for my clients, creating the final edition of the definitive textbook (one reviewer called it the “seminal text”) on ghostwriting, teaching my expanded training program, handling the house, dealing with the kids and their school issues, and providing his almost nonstop psychological support. We tried going to a few actual therapists, but they did not give him what he wanted or needed, which became ever obviously more and more of me.
I didn’t voice it at the time, but in retrospect, the more of my time and energy he demanded, the less the MS did.
Huh.
On April 14, Tom turned 58 playing what would be his last gig, at the Villa Nova in Newport Beach. We’d sent word out that he was subbing for Rick Sherman that night, and friends and fellow musicians filled the room. The kids and I left after a few hours; I had to work in the morning and they had classes.
The next day, I took him to the Emergency Room in pain again. They sent him home with a few prescriptions. We didn’t have time to fill them, because the day after that, he returned via ambulance, spitting up blood.
I’m going to cut to the chase here. Between April 16 and May 29, 2010, we went in and out of the hospital. Tom received first one, then six, then another six units of blood for what was first a bleeding, then an obstructive duodenal ulcer. His demands for pain medication alienated every nurse and hospitalist (yeah, that’s what they’re called) who interacted with him, to the point that one gastroenterologist called me in the middle of a Saturday and said he didn’t want to have anything to do with Tom anymore.
On May 29, after that same gastroenterologist had run some tests and sent Tom to UCI to have a procedure done so he could eat again, we learned Tom had stage 4 cancer that had metastasized to his liver. “He has 6 to 12 months. There’s nothing we can do. You can leave (the outpatient bed) whenever you’re ready. I’m sorry.”
Okay, life changed.
Not going to go through that next month step by step. Use your imagination. Or don’t. Wish my Intermittent Amnesia would kick in for some this. But it won’t.
He died June 28 at 10:35 AM. I was by then functioning with a single brain cell. Did what I had to do, with enormous, above-and-beyond help from my parents, my kids, my brother and sister-in-law, Tom’s brother-by-love Leon Natker, and my own beloved rabbi, Bernie King, alev ha sholem.
The MS did not make a single peep. Not the slightest whimper. Sure, I slept a lot, but that was grief. My hair fell out—textbook grief.
The sun kept coming up every single day. Tom stayed dead long after the joke stopped being funny. He sent me a song the day he died through Bera. I remember the fact and the feel of it, nothing more. Had a few stasis incidents, utterly vanquished by Rescue Remedy. In November, I’d come to the end of my emotional rope and took off with Lona in my new, reliable vehicle (to replace that 1978 van that, yeah, Tom was still driving and Greg Vail now uses “temporarily” until…he doesn’t).
We were only going to be gone for a day or two, so, throwing caution to the wind, and not really caring one way or the other, I took no supplements with me.
We were gone for six days. I was fine until my body reminded me that MS or no MS, I was still a girl with a four-generation gastric dysfunction. Otherwise—no ill effects.
In January, I got sick as a dog. With the flu.
For decades, I never got sick. No cold, no flu, no bug could get very far in my body, which was in active search-and-destroy mode, killing off my nerve connectors and brain cells and—wait, is that something new? Let’s kill it!—whatever else that had the audacity to penetrate my system. Now, I was on my back, coughing, wheezing, hacking, sneezing, whimpering sick. For well over a week.
The MS was definitely gone.
It took me another few months of paying close attention to accept it as a reality, but yeah—the enemy had been vanquished. Banished. Expelled, ejected, cast out.
Like those memory lapses, it was gone, gone, gone.
Did Tom take it with him? Did my physical dreck leech into him and die along with his poor, cancer-ridden body? Did his soul, knowing he was about to shed his corporeal mass, suck it from mine?
Okay, so this isn’t the last blog in this series. I guess I have one more to write. But not now. It’s Sunday, the only time I have to visit my parents. Back anon.
