HEY LITTLE ROCK STAR

Where have I been? Well, where have we all been, really… …I mean seriously, look around, take it all in. What ARE we up to here?

I’d like to comment on the chaos of our times, but really…I think the best I can do right now is just tell you the story of where I have been since I finished my last record – and why most of you have probably not heard it since I barely promoted it beyond Facebook. But I digress…

To really get to the meat of this story, you have to journey with me to when I was making the record. It was a really cool time, and I had a lot of good times and good challenges with my good friends. And then, everything was finished, and it was time to put a polished vocal on the songs. I decided to do most of them at my little home studio I called The Magic Room.  It was a warm place (quite literally) with deep vibes and dark blue velvet curtains. It was all mine, and I met myself there. Because it really wasn’t sound proofed, I had to wait until the traffic cleared and the evening gave way to the night. Then came the coyote chorus. A half hour of those guys, and then I had a good few hours before the bars and clubs closed and my neighbors raced up the street with their fancy engines perforating the stillness. After the march of the engine parade, I would have a bit more time until the birds began their morning song. It was reverent, really. And I loved and relished every second of it.

But underneath the joy, something else was happening. Something troubling, though I barely cared to acknowledge it. I felt it must be some sort of deficiency within my own confidence, so I pushed on, determined to prevail. As I recorded each evening in the relative silence, occasionally I would pull one headphone off to listen to my voice live in the room as I tracked along to the instrumental. I did notice a difference in the sound between my left and right ear, but I carelessly pushed concern aside.

Looking back, I really had trouble singing those vocals. True, it was a different record than the first, and my voice had grown. I wanted it to be bigger, to really be bounding from the depths of my soul.  But I found challenges in hitting the big strong notes in the choruses. My throat, at times, felt raw and achy. My jaw was tight and clicky. Again, this must be just how it is. I will journey onward.

With the record done, I couldn’t have been more pleased. I wrote the songs as a reflection on not only my life, but also the wider vision of what I saw happening in America. Being from Texas, but living in California, I really got to experience the differences in our society and the dichotomies in our American culture. I wanted to heal those divisions and bring us together through love and harmony and music.

And then came a big kaboom to my life – the universe / God / divine intervention says…

 Hey you – little rock star, this awesome home you’ve been renting is now for sale, and it’s more than you can afford right now.

 Great. OK. I will find a new place for myself, my seven-foot piano, two dogs, and a cat.

 Then the universe says, Not so fast, go live in a hotel first and then a short-term rental before we get you settled again.

 Oh sure. Sensational. Will do. Everything goes to storage. I’ll live in stress for a while. No worries...

 And yet the universe volleys back, Hey, while we are at it, let us end a romantic relationship and let you really feel unwell too.

 Spectacular! I can take it, I say triumphantly, if not quite arrogantly.

But four months on, and it was wearing thin on my confidence. Here I had this beautiful album with rich, meaningful songs that sent chills up both my arms, and I had no rock under me anymore. Finally, I got into a new long-term rental that would take me, a big grand piano, and two dogs and a cat. But the house had issue after issue, and it was very distracting. And as I prepped for the road, rehearsed, and practiced, I began to notice something that was definitely not good:

 I got a headache every time I played. It hurt to sing. I couldn’t hit the notes anymore. I was short of breath.

And I slid deep into a funk for about a year as I decided to pull the plug on my dying dream.

And YES I noticed that things sounded like a transistor radio in my left ear. And doctors, sure – I saw doctors. I passed hearing tests. I was told I had TMJ and to go fix it, and that I shouldn’t tell anyone that things sounded like a transistor radio because it gave away my age. Yes, a doctor actually did say that to me. At least he didn’t tell me that I should eat more beef as one endocrine specialist had suggested to me years before…but again, I digress…

I sought acupuncture, massage, chiropractic work, and dutifully practiced yoga to reduce stress. And I watched other artists take center stage and my record just stagnate. I was so sad.

 Depressed? No, not really that. I had experienced true depression before…

…But the hue had gone blue – most definitely.

And then one day, a poem hit me in the head. No, not my poem; it was another’s words. But it was perfect – And perfectly timed as it entered my life. And then I took it to heart. And I realized, that no matter how much I wanted to be sad about my dead dream that I couldn’t be sad anymore. I had a great life. I lived in a fabulous place. I had good friends who cared about me and two dogs and a cat who loved me. Oh yes, and a mother and father who adored me.

So I refocused and did what any good entrepreneur with training would do: I rebranded. I had been writing poetry for nearly two decades. I had built up quite the catalog in a multitude of hand-written journals, and other than a few song inspirations, the poems were sitting in dusty journals in a box. It took nearly a month, but I managed to catalog them into a large digital file. And then the holidays approached…what to get that loving mother and father of mine? I know – a collection of my poems!

I had found some nearly square handmade paper in the softest shade of pink. I chose thirty poems or so, and made a book. I sewed the binding myself. I wrapped it in a very special paper, and on Christmas Eve, I had the pleasure of creating one of the best memories EVER: sitting between my mom and dad on their living room sofa and reading my poetry to them. The poem I placed first in the book was actually one of my newest, but I put it first because it began with Once upon a time…

After I finished reading to them, my mother asked to hear the first poem again, so I delighted in reading it to her. When I finished she said, It reminds me of Goodnight Moon. I think you could turn that into a children’s book.

Whoa. What? I never – but mom, that poem is nothing like Goodnight Moon...

But I couldn’t shake the idea. And when I returned to LA, I made a mockup of what the book could look like and set about learning how to draw. I spent the better part of that year illustrating for that little book, which became my first of three (so far) illustrated art books for children. I titled it The Naked House, which is a metaphor for the soul, but little did I know that the little story was a foreshadow of things yet to come for me.

That whole year as I fell into this beautiful illustrating flow, I did notice how my stamina was weakening. I thought maybe it was age. I was, after all, over 40. I would get headaches and neck pain, but I was leaning over drawing for hours at a time. I dropped things all the time, but I just thought I was clumsy. I would feel overwhelmed in public spaces, but I thought I was just no longer confident in my being. After all, I’ve always been a bit shy.

And then one Thursday morning in February of 2016, I awoke with what felt like a cold. I turned on my music player, and the Beatles were grooving out, but their guitar arpeggios were out of tune. Well, that’s weird, I thought, and I went about my day. By Friday evening, I knew something was terribly wrong. I contemplated going to the ER, but then I realized that it wasn’t life threatening, so I promised myself that if I wasn’t better by Monday, I would go see my favorite ENT in town.

At the time, I was keeping a night schedule: waking up around noon, taking care of things that had to be done in business hours, then having lunch around a normal dinner time, and hiking with the dogs and socializing with my neighbors for sunset. I would eat dinner around 10pm, then start a creative session around 11 and work until just before dawn. I loved that schedule because I got to escape into the silences and privacy of the night to work in solitude and mystery and magic. It was enchanting.

But that Monday morning, I was calling the doctor at 8am, and I was in his office by 10:30. I failed the hearing test. He told me it was actually an emergency, and he was going to give me a steroid injection, oral steroids, antibiotics, antivirals, send me to a specialist that day for an intratympanic steroid injection (OUCH), followed by an MRI the next day. Most of the time, when someone presents as I did…with what I learned that day is called sensorineural hearing loss, it is a virus or bacterial infection that must be combatted immediately or you lose your hearing. A few days later, the result of the MRI came back, and my sweet ENT called to give me the news. Like a bullet from a gun, he said the words:

You have a very rare brain tumor called an acoustic neuroma. They are always benign, but you will have to have surgery to remove it, and the surgery is going to leave you deaf in your left ear because the tumor is very large.

 FULL. STOP. <deep breath> <hold back tears>

After I hung up the phone, I quite literally threw myself on the floor and vocalized primal screams for about 10 minutes. I can only imagine what the neighbors must have thought in that moment. Then I called my mom. I could barely get the words out. I was sobbing, devastated, scared, shaking.

How could this be happening…to me?

I then had to go down to the MRI facility to collect the disc of images for my surgical consult the next day. I got in my car, and I was still very upset. But about a mile away from my house, my energy shifted.

 I suddenly realized that the only way out was through. And I would heal. And no matter what, I would live.

But that was just the beginning of my being a patient. What came next was even more daunting. The ride was filled with all kinds of despair, anguish, confusion, and even trauma. My Naked House would have to wait. My non-metaphorical soul needed to grow first.

So – when someone has one of these rare tumors, the first stop is an internet search or a meeting with a surgeon or both. What you quickly come to realize is just how rare an acoustic neuroma, also called a vestibular schwannoma, really is. Fewer than 3,000 cases are diagnosed in any given year, and while there are quite a few surgeons out there who will or can do the surgery, I quickly deduced that having THE BEST for my very large, brain-stem compressing tumor was in my best interest. Luckily for me at the time, two of the country’s top four teams were in Los Angeles.

I met with the skull surgeon of my first choice, and I knew I wanted him to be my surgeon. There was something about his energy that was very calming and kind, and I immediately trusted him. Meeting the rest of the team wasn’t as significant to me, although I did meet with them and learned more about the plan, the surgery, the risks, and what I could expect. I submitted to the surgery in April of 2016. In the pre-dawn hours of that morning, I said goodbye to my dogs, promising them I would return as soon as I could. Escorted by both of my parents and my very good friend who had come all the way from the East Coast to help me with whatever I needed, we set out for the hospital.

I will never forget that pre-op moment. There was something about it that reminded me of being at a big rock show – the adrenaline pumping, the egos building, the rarified feeling of being in a special place before a Big Thing is about to happen. As the moment of the surgery drew nearer, I was going through my process, but my team – a skull surgeon, a neurosurgeon, an anesthesiologist, and probably another handful of people I did not meet that morning, were working behind the scenes, getting ready for my arrival to the OR. I said goodbye to my family and was whisked down a corridor to the operating room. The last thing I remember was a sharp pinch in my arm as one of them gave me the first dose of something that nearly immediately made me feel groggy and icky. I remember asking what it was and being told, just something to calm your nerves. I remember thinking, I really wanted the name of the drug, and I am not nervous.

Then next thing I remember is awakening as if from a nightmare. My limbs were thrashing out of my control. The room was as bright as the Sun, but there was the equivalent of Vaseline in my eyes. Everything was blurry. There was lots of commotion around me. I was cold and uncontrollably shivering. I think I asked what was happening and why was I so cold. My teeth were chattering. From somewhere behind me, I heard my surgeon’s voice saying in kind of an abrupt manner, You’ve had a reaction to something we’ve given you and we’ve had to stop the surgery. You’ll have to come back again.

WHAT. THE. ACTUAL…WHAT…wait…WHAT??

And then he paused. Suddenly, the gentle surgeon was at my side. He put his hand on my shoulder and said softly,

We’ve had to abort the surgery because you have had an allergic reaction to something. But you’re ok. You’re alright. You are going to be ok.

I will never forget that moment. I immediately felt calm and restful. They wheeled me back down the hall and into the recovery area. I was groggy from the anesthesia. I remember the anesthesiologist came to my bedside almost immediately. She held my arm and just stared into my eyes intensely and said nothing. I felt like she was apologizing. For what, I did not know. I still don’t know.

A bit later, a technician came in and did an echocardiogram. I think I fell asleep. I remember him leaning down when he was done, and he said to me, your heart is just fine. I remember thinking, I had no doubt there. I then heard my team at the end of my bed having a conference to figure out what to give me to control the pain. I am allergic to several of the standard narcotics, but having had anesthesia twice before with no complications, I also was confused as to why this had happened. Recently, I had been given a particular drug for pain during a rather brilliant facial laser to make me look more youthful (yes, we all do things like that in Hollywood). My team was, I think, terrified of what to do next…them knowing everything that had happened, me just knowing that my doctor said I would be ok. So I shouted out the name of the drug I knew I could tolerate. They were surprised, I think, to find me listening to them. But to their relief and mine, they approved it.

I was then taken to ICU. My parents were allowed to come in to see me. The terror in their eyes drove through me like the sharpest sword. In that moment, I couldn’t understand why they were so upset.

 I was fine, see? Here I am. All is well...

…And then I looked in the mirror…

I finally understood what anaphylaxis is. My face, my lips, my hands, my feet – every single part of me was swollen up like a puffer fish. Hives covered my body. It was a very strange reality to be seeing in the mirror. I did not look like me.

I spent two days in that ICU. I was the least serious patient on the ward. Next door was someone who was gravely ill. The second night that person coded. It was an intense moment. I could feel everything that was happening around me – in every person. I was trying to process my own feelings which was not easy. Thankfully, I did have tremendous help in a nurturing, calming, and quite-gifted therapist who made herself available to me over the phone whenever I needed her. I owe her a debt of gratitude for all that she did for me those two days and in the months and months after. I owe the same debt to the cast of supportive healers, friends, and family who have nurtured me with kindness, patience, support, and love. 

It has been a lot to process – spiritually, mentally, and physically.

During my ICU stay, I was told about my surgery. The surgeon started with the Cochlear BAHA implant which is a small Titanium implant (much like what they use in dentistry), except this one goes into the skull with a small, port-like protrusion from the scalp called an abutment. Once the skin around the abutment heals and the bone has had a chance to anchor in the Titanium implant, you can attach this very covert looking Bluetooth receiver/transmitter. This piece of tech is so cool – it picks up all of the sound on the deaf side, and transmits it through the bone of the skull. The working hearing nerve on the other side picks it up and hears it. It can be controlled through an app on your iPhone, and you can stream content directly to it, including music, television, and phone calls. But I still had functional hearing in that ear since he didn’t get very far in drilling out a hole in my mastoid bone to go after the tumor. According to the record, he installed the BAHA, and then about 10 minutes later, I was in Grade III anaphylaxis, which is the grade before where your heart completely stops.

The day I was to be discharged, my favorite surgeon – the only one who was operating on me at the time of the anaphylaxis, came by my room. He was still a little shell-shocked, I think, but he was cheerful and said, “You’ll need to have some allergy testing before you come back.” I asked for referrals, and I was sent a list of two or three allergists on the West Side. None of them could do testing for the highly-controlled substances given in an OR setting.

I was on my own.

But I am adopted. I am an only child. I have always been independent. I thrive being on my own. It’s what I know. So, I dove all in. I began researching – and not reading silly internet things, but real research published by the NIH and other reputable medical sources…things that were well above any science education I had in my time at university. I educated myself on anaphylactic reactions to the very best of my ability. I finally learned that only a university allergy department would have access to such highly controlled substances, so I started calling around. A local university could do the testing, but I had to wait. It was a bureaucratic thing. Policies were being rewritten. Finally, in August, four months after the aborted surgery, I was able to have the testing.

 And the results were…

…inconclusive.

The facility I had been going to had become exceedingly frustrating to deal with. The more I learned about anaphylaxis, the more questions I asked. Since I had had all of the drugs before in two previous surgeries, could it have been the preparations they used? Were they using generics instead of brand names? It was likely with the number of generics on the market, so which generic brands did they use in my surgery? Surely with the litigious society in which we live today, there must be a record of the brand, lot, and bottle used…especially during a surgery that was aborted due to anaphylaxis. Ultimately, they stopped cooperating. They told me they would just give me extra Benadryl and steroids in the pre-op and that I would be fine. But I had research papers from the NIH stating that finding the culprit was very important…that if I was exposed to the substance again, I might not survive.

 So – I did what any conscious human who wants to live would do…

…I fired my team.

I personally called my favorite surgeon and told him why – that it was not him, but that I couldn’t agree with the rest of the team. I told him who I was going to see (one of his colleagues at a competing facility), and he gave me great confidence in saying that I was probably in the best hands. He maintained that he would be there for me if ever I needed him.

I told him I was grateful, and I meant it.

Without having answers, I had to proceed. While the tumor was not life threatening, my health and quality of life were continuing to decline. These tumors will eventually kill you if you don’t seek treatment. Thankfully, my new facility immediately connected me with the head of anesthesia, and I really trusted her. She listened to my concerns. She spent hours reviewing the case and doing research. She devised a plan whereby I would skip most of the normal pre-op and be taken up to the surgical suite early. She would personally administer micro-doses of each of the drugs and monitor me for reactions for an hour before administering the full dose.

Everyone would wait to start the surgery until I agreed it was ok.

It was very empowering.

In November 2016, I arrived in the wee hours to my new facility. Aside from the surgeons, all of the other medical professionals on my case were women. After I had no reactions to the micro-doses and just before they took me into the operating suite, the women surrounded me like a female version of a football huddle, and in the form of a fun, non-religious prayer, one of them said, “women power unite.”

I knew I was going to be ok.

I don’t really remember waking up from that surgery, which apparently lasted 11 hours, and my vitals were solid the entire time. I do remember being in ICU that night. I remember my family coming by to see me. I remember mucous in the back of my throat and feeling like I was going to choke on it. I clogged up more than one cannula that night, and God Bless that sweet and very new nurse who tended to me all night long. I don’t know your name, but you are a superstar in my book.

I spent a week in hospital recovering. My family never left my side. My memories are filled with a wonderful parade of kind souls who took the best care of me. My East Coast friend, who was still in California helping me, brought me food from my favorite restaurants and cooked my favorite healing meals so I didn’t have to eat hospital food. I was never in pain, except once when I had to be disconnected from my glorious pain pump for a very short ultrasound of my legs – which turned into a several hour tour because the transport personnel disappeared. Thankfully, the ultrasound technician drove me back to my room where I was reconnected to those wonderful drugs.

Now, normally – in my daily life – I am a present individual. I don’t drink alcohol, I don’t smoke, I don’t get high. I tend to lean toward plant medicine and homeopathy. But after skull and brain surgery, I think it’s totally advisable and very much OK to take, and dare I say it, ENJOY the very fine narcotics being offered. 

A week later, I got to go home. But my story doesn’t end there. Of course not. How could it? There were too many questions still unanswered. And I was now permanently and irreversibly deaf in my left ear with a balance impairment covered under the ADA. My life, as I knew it, would never be the same.

THANK GOD!

I immediately took solace in the fact that I could have my Labrador, Daisy, become my legitimate, ADA Mobility Service Dog. I hired a trainer, and we began group classes and two private sessions per week. It was a good distraction for all that had changed. I was wobbly, but getting stronger. I felt more clear, relaxed, and free than I had in years. Christmas came, and it was a welcome celebration. Then, my birthday on New Year’s Eve:

Another year, I survived! Hello 2017…

I took long, slow walks with my friends and dogs in the canyon. Spring was just around the corner. My family surprised me with a trip home to Kauai, and I was stoked to get to be in the land of aloha and rainbows. Daisy wasn’t ready to go to work and fly with me, so I traveled by myself and met my parents on island. I had been getting stronger going on those walks in the canyon, and I had been thinking that maybe I was taking advantage of the wonderful piece of legislation that is the ADA.

But then I arrived at LAX.

The moment my feet hit the curb, my head spun. I may have regained some balance while hiking, but that was nothing compared to a busy airport with thousands of noisy and frantically moving people. I was escorted through security by an airline representative that I had hired to help me. I was standing with my back to the TSA screener sort of in a daze of dizziness accompanied by a wall of sound I couldn’t quite understand. Arms outstretched, I just stood there, waiting for the pat down, then all of a sudden, one of the TSA agents crept in front of me and pointed behind me and said, they are trying to talk to you.

Gregarious as I am, I turned around and leaned toward them as I said, I am so sorry… They literally recoiled in fear. I then said, I am sorry. I am deaf in my left ear. I did not hear you. They then breathed a sigh of relief, finished the pat down, and I was on my way. The long walk to the plane was difficult. The whole airport spun around me. I felt like we were walking too fast. Finally, I was escorted to my seat on the plane. I breathed a sigh of relief that the spinning had stopped when I sat down. I decided in that very moment I would keep working with Daisy and make her ready for her service debut.

Kauai was a joy. I had such a good time with my family, seeing old friends, and being in the energy of that spectacular island. If ever you can’t find me, that’s where I’ll be! And I discovered that being single-sided deaf really wasn’t that awful. Sure, it was an adjustment. I missed what some people talking to me said if they were on my deaf side or if I was in a noisy place (like the airport). I had to be mindful on walks and in restaurants about my friends being on my hearing side or my good ear facing a solid surface so that I could get reflected sound and keep up with conversations.

Sound travels in waves, bouncing off of surfaces along the way. When you lose hearing on one side,

you not only lose the ability to locate where a sound originated, but also the ability to distinguish individual sounds in a noisy environment.

But I think the real pleasure for me came when I realized three primary benefits to single-sided deafness: First, when I slept on my good ear, the silence was magical and informed a deeper sleep than I had ever experienced. Second, I became aware that I am now part of a larger community of people who share deafness and hearing loss. From these warm and inviting humans, I have recognized that this disability is not the end of the world, but rather, it gives me the opportunity to connect with people in a way that is, perhaps, more meaningful than I have experienced before. Simply put, this new aspect of my life was not a tragedy. It did not change my ability to enjoy life, to love, or even to listen to or play music – which I must admit, was an overriding fear of mine prior to the surgery.

 That fear of hearing loss, at one point, was actually quite traumatizing. The reality, however, wasn’t scary or even disempowering – at all.

Other than being thankful that I did not choose to be a sound engineer, being deaf on one side is actually a gift in many ways – which brings me to my third massive realization:

 My perceptive senses have become heightened. I am more aware of others’ energy, intentions, and feelings. While I have always been a somewhat astute individual, I now suddenly just know things.

Returning home from Kauai, I got busy with the dog training. I was trying to incorporate the BAHA into my lifestyle, but it just wasn’t suiting me. Maybe if I had a job in an office or a university it would have been more useful, but being an artist, it wasn’t really necessary. Besides, my scalp around the abutment was always inflamed, even though I fastidiously took care of it. My favorite surgeon who had installed it told me that if I didn’t like it, the removal of it was really not a big deal – a quick outpatient day surgery that would last less than an hour. Since I was now a patient at a new facility, I met with that surgeon instead, and he offered to take it out right then and there. And I was like, wait – um, I thought this was a surgery… But he explained that he always left the implant in the skull and just removed the abutment. And I just accepted it. I had been getting headaches on the left (now deaf) side, I suspected the implant was not something my body was enjoying, and I was ready to have it removed. I did feel better almost immediately.

A month or so went by, and I started having strange sinus allergy symptoms coupled with low-frequency tinnitus that at times made it difficult for me to hear human speech. I felt pressure inside my skull. Occasionally, I thought the left side of my face looked swollen. I was told to take Benadryl, so I did. It helped, but of course, it made me sleepy. The symptoms eventually abated, and since my dog trainer was on leave to have a baby, and I needed to go to Texas to do some filming for a real estate marketing project, Daisy and I embarked on a road trip to Texas. And it was a great learning for us both.

I put her in a service harness and took her everywhere. She did OK. She absolutely could not fathom what waiting in a line meant. She was fascinated by public bathrooms and the people and smells in them. She deeply wanted the beef jerky placed perfectly at her nose level beneath the checkout counter of every truck stop along I40. She demolished an entire stand of reading glasses with her enthusiastic tail when a trucker said hello to her. She loved hotels, and she helped me cart the gear in and out of the hotel every night and every morning. She only barked once to greet the day (as was her norm), but I glared at her…and she quickly realized she was learning a different set of rules. She definitely noticed that she was the only dog going in human places. And she felt very special and proud to be with me. She tried so hard to please me, and really, astound me is what she did.

It was on this trip, as I drove three full days each way, I discovered one of the best things about my acoustic neuroma surgical result:

I could sing again – and perhaps like never before. Big notes, high notes, strong notes, soft notes…I had them all back. I could easily create nuance in my delivery. Sure, I was out of practice, but really, it was like upgrading to a fancy sportscar: the power was just…THERE.

Unbeknownst to me and prior to learning of the tumor, my soft palate had become mostly paralyzed. The reason the vocals on my record were so difficult to manifest was because my instrument was actually disabled. The skill, expertise, and care of my neurosurgeon (who I think may be the best neurosurgeon in the world for acoustic neuroma) quite literally saved my voice.

I will remain forever grateful to him for so many reasons, but getting my voice back, perhaps, is the very best one.

When you lose vestibular function on one side, the brain does adapt quite a bit, but the way it adapts is by taking information from sight and touch to find its location in space. When presented with lots of visual movement and choices, like when shopping for groceries, it can really affect the balance. I had rejoined life in public, and Daisy went everywhere with me, but the first couple of months were challenging. I had as much to learn about working with a service dog as Daisy had to learn about being a service dog.

At first, she was terrified of the refrigerators and freezers at the supermarket. She would back away, when what I needed her to do was lean in and brace so I could use my hands to pick up merchandise. So, once back in LA, our dog trainer had had her baby, and the serious work of adding skills to Daisy began. We met weekly for several months in the public space for sessions. We had an entire session dedicated to freezers. We tried every technique in the book, but in the end, what did it take? My trainer took some of the fresh chicken I had brought with me, snuck around the corner, and put little pieces at nose level inside a freezer. She told me which freezer door to open, and I took Daisy there. Now, every time I open a freezer door, she leans in to see if there is chicken inside. I smile because it never gets old.

Out in the world, we have learned a new rhythm. We take our time. We plan ahead. And we have found that many people are uncomfortable with disability. But we have also found that many souls are incredibly open and kind and supportive. What has been most surprising to me is the sheer number of people who claim their dogs are service dogs. And while I do feel deep empathy for anyone who loves dogs and their companionship, claiming your dog is a service dog when it’s not is not only illegal, it is potentially dangerous.

Daisy and I have encountered a multitude of these not so servicey service dogs…way more of them than I can count.

In fact, in our almost four years of working so far, we have only encountered two teams that exhibited the skill and manners that are acquired through this very demanding, but very rewarding process.

Daisy has been lunged at, barked at, growled at, and nearly bitten by pets masquerading as service dogs in the supermarket. Most of these dogs are on retractable leashes. One woman was overjoyed to have her fluffy white “service” dog do a meet and greet in the produce section while I was perusing the lettuce. She became hostile when I told her it was not ok.

It is a shame that more people don’t understand the reality of those with physical disabilities – even when the physical disability is almost invisible, as is the case with me. My balance is such that if Daisy – who is providing balance assistance for me – is distracted whilst I am trying to choose peppers, it could actually cause me to fall and get hurt…or worse, injure my dog or another person.

Luckily, the more we have worked together, the more I am able to attune to her every breath. I usually know when she is about to be distracted. And she has learned to ignore other dogs and people in public.

I did not teach her this.

She did, however, totally notice the two, seemingly real service dogs we encountered. I swear, she stood in her place next to me and literally gave what seemed like a professional nod to these clearly well-trained dogs.

She is my pride and joy and best friend. Our bond is deeper than any I have experienced with another animal (and perhaps human), and I am beyond grateful to her for her help. LAX and air travel are exciting for both her and me. It is a showcase of her skills, and it is also a chance to bring calmness and joy to others during the stresses of travel. Children are the best, and in many ways, more respectful than their adult counterparts. I have had more children ask politely if they could say hello to Daisy whereas most adults will try to steal a pet, a look, or a touch whilst ignoring me.

God bless all children and dogs.

One year after my surgery, and I was much improved. I still dealt with bouts of allergy that couldn’t be explained. Benadryl did help. I did not have my level of fitness back, but I wasn’t lethargic, so that was ok. I decided to buy a home! And as luck would have it, I found my dream in a white box of glass with an enchanting view. It turned out, it was actually The Naked House –with the colors I had chosen for my illustrations – lots of white space with small accents of gold, blue, violet, and silver: Art creating life creating art.

The house needed a little work, so for the next couple of years, I remodeled the entire exterior, painted everything, repaired some water damage requiring a re-build of the main bedroom, and customized a storage space to house a home gym and art studio so I could finish illustrations on the two remaining children’s books. As all of this was going on and taking my attention away from writing music, those mild allergy symptoms became more severe and more and more constant. I began seeking medical opinions.

The symptoms eventually got so debilitating that I couldn’t exercise. I could barely move through the house. I had muscle weakness. I was nauseas. I had migraines and light sensitivity. I had shortness of breath. I couldn’t hear people…in person or on television. Closed captioning became a necessity. The tinnitus in my head was so loud it kept me up at night. I couldn’t listen to music, let alone stand to play it. Singing made my head literally throb. Audiology confirmed hearing loss in the lower frequencies in my right, good ear. I wanted to cry. Was music over? Was I to be totally deaf now? And if so, could I please have silence and not this pulsating, humming, vibrating nonsense in my head? What was causing all of this?

Three years, and no kidding – twelve doctors – and several diagnoses later, guess what – I am, it appears, actually allergic to Titanium. It is thought that this allergy caused inflammation at the site of the implant in my skull which festered and then expanded into a bacterial infection throughout my skull.

Whether or not it caused the initial anaphylaxis, I may never know.

I returned to my original, favorite skull surgeon (who is now at a different facility in Southern California), and he happily removed it. I then had 21 days of IV antibiotics. And I felt cured! Finally, after all of this…I AM WELL.

And what happened next? Why – a global pandemic.

I have spent my lockdown, super-quarantined time to reflect…a reflection of my journey and of what is to come next. I have been finishing those illustrations and playing and writing and singing. I have been getting fit, because I finally feel well enough to do so. And I have realized something:

I may not have been promoting my last record, aptly titled Darkness Comes Before the Dawn….but I sure have been living it.

And from my view of the world outside, we ALL are living that truth, just a bit, right now in this very moment.

Just the other day, I listened to the record for the first time in years, and I couldn’t help but feel the power of those words…how timely, how needed…RIGHT NOW.

And I still get goosebumps when I let those melodies and lyrics inside my soul.

I can’t say what will come next for me or for you or for our world. But I can end this story with these thoughts:

It is acutely important that no matter what life situation you are facing that you first attune to yourself. Listen to your loudest inner voice. Believe in your own gifts of intuition, for that is your divine spirit, your own personal part of God that WILL tell you what to do and what is best for you, if only you will take the time to discern that voice, to listen to it, and to heed its advice.

Second, just love everyone…starting with yourself. Be patient. Be kind. Be generous with your time. Every person on the planet is fighting a battle that you know nothing about. They may not even know about the battle they are fighting, but they are still fighting it. You may not know every part of the battle you are fighting, so love, love, and love some more. Love yourself, love others, and forgive everyone of any shortcomings or judgements, because they know not what they do. Forgiveness breeds gratitude, and gratitude enables joy.

Third, surrender to the process. If there is anything I have learned, it’s that I cannot force an outcome. I can fight for it, fight for truth, fight for acceptance, for equity, for fairness, for love. But ultimately, success is found in the letting go. Really, there comes a point where it’s just all about faith.

Fourth, advocate, advocate, advocate for yourself, especially in matters of health. For all of our advances in science (and we need more of those right now for sure), each person has a body that is unique and not every doctor will have the right answer for every patient. But somewhere out there, a doctor will have the answer for you. It is just the way it is, so believe in your intuition and in your own personal knowledge of your body whilst educating yourself on the current research to the very best of your ability. Then advocate for your own highest good and best outcome.

I am living proof it can be achieved. I am a testament to triumph.

And indeed it is true – what we think we create, and darkness really does come before the dawn.