THIS MORNING I HAD POISON FOR BREAKFAST

THIS MORNING I HAD POISON FOR BREAKFAST

I’ve been immobilized all day. I’m staring at the ceiling, imagining the mildew developing on the laundry I failed to move from the washer to the dryer—and contemplating death. By the sixth hour, the suicide scenarios are becoming increasingly hilarious—cinematic in scope, elaborately choreographed as a Balanchine ballet. They involve colorful explosions, cyanide capsules hidden in my spy-glasses, Bengal tigers, katana swords, active volcanoes. 

Who am I kidding? I’d never make it to the crater of an active volcano. Possibly, if I’m very lucky, the toilet will become an option before I (not for the first time) take a whiz on myself. 

Like most animals, humans are wired to monitor their surroundings for threats. Even when you don’t have low dopamine, it’s normative to wake up with automatic negative thoughts: a surge or irritation at your alarm clock, a full-fledged death wish, or anything between—it’s a vast spectrum. No matter how healthy and happy you are, you probably don’t open your eyes most mornings with a halo of cartoon birds chirping around your head and pixie dust sparkling on everything you touch. That’s okay—especially if you’ve figured out how to delete that first thought like it’s a drunken text message to your ex, and move onto a better, less self-poisoning thought.

Any of the great spiritual teachers, regardless of time, place, or tradition, will tell you the same thing: that high-functioning adults are people who have some ability to separate themselves from their thoughts and feelings. On a good day I can even sometimes manage it: 

I am not my thoughts. I am not my feelings. 

Thoughts and feelings are happening to me. I am choosing not to identify with them. I am choosing to observe them with minimal judgment. 

Yet like my meds, this usually doesn’t last long: 


Thoughts and feelings are happening to me.

Why can’t I have better thoughts and feelings? Why does pain need to hog the microphone all the time? I feel sad. Man, I bet that laundry is starting to stink; now I’ll have to wash it again, this time in hot water, and my favorite t-shirt will shrink. Why can’t someone just get my undergarments without pathologizing my current distress? Are my old Speax now on display? Do I have an anger management problem? Is Parkinson’s a karmic punishment for my character flaws? Why does everyone I care about discard me? Am I an inconvenience to everyone near and far? What if I died right now? How many days would it be before someone noticed? 

See? It’s not easy being a non-judgmental witness to your own thoughts. No wonder most people don’t even try. 

When I was a child my parents were working their tails off, so they didn’t exactly knock it out of the park on “paying attention to me.” I developed behaviors you might call “hypervigilant”’ and “needy” because I was desperate for their attention. When my exhausted mother got up at two in the morning to nurse my younger sibling I would magically wake up too, sensing I’d finally have a captive audience. It seemed to bug her (imagine that) which made the cycle worse. The spoils of being helpful to others included praise, so I focused on being useful and independent without learning how to ask for support.

Don’t get me wrong; I know my mom loves me. I vividly remember having two small children—adorable, fascinating little people I loved with all my heart—and feeling utterly desperate for them to be asleep. Loving someone the way we generally love our children is exhausting. It’s a 24/7 encounter with anxiety: are they OK? Are they happy? Am I doing this parenting thing right? Will they hate me when they’re teenagers? What if they don’t know how to ask for support, and break a bone or have a seizure or get hit by a car? What does “happy enough” look like?

See? It’s so easy to get swept up in the tide of your own feelings and thoughts. We’re overwhelmed because it’s really hard to consistently say Sure, inner voice of doom, but if you really look around, you have to admit that in this moment, no one is vomiting, no one has a bone sticking through their skin, no one’s getting punched on the playground, no one’s missing or going hungry. You’re fine: enjoy it for the eye-blink amount of time it lasts. 

Trauma and pain are universal. I know that. Is it worth asking: what if we allowed ourselves to just be that traumatized person, embrace it? What if we invite the depression monster and the anxiety monster and the failure monster and all the other monsters over for tea and chitchat? Clearly, it’s not safe—identifying with your wounds is arguably more poisonous than identifying with your negative self-talk. It’s unsustainable. And ultimately, it’s useless to look outside yourself for solutions, but I still do it. I know switching to “witness mode” is as close as we can reasonably hope to get to “healthy” or “whole” or whatever the hell “happy” is. At the moment, I just want to be capable of standing up and walking.

Rinpoche said the purpose of a spiritual teacher is “to insult you.” By that measure, I’d like to note that you can’t ask for a better spiritual teacher than Parkinson’s. It never stops insulting you. It steals your control over your body and very literally messes with your mind. It humiliates you in public like the worst abusive spouse of all time—and behind closed doors it’s even worse. If it were another human being, you’d get a restraining order against it. 

I can’t get a restraining order. I can’t even get my laundry. So I’m here on the floor contemplating how much of a life is “enough,” and how to keep finding things to be grateful for even if I have now technically peed my pants. It gets ugly, so I stretch my fingers out for the TV remote. And of course, the cable is down and the monitor is flashing a THERE SEEMS TO BE A CONNECTION ISSUE message. 

If that ain’t true I don’t know what is!

But hey, TV: message received. Escape mechanisms don’t work. Being in a war of attrition sucks. Being in one against yourself is draining and ridiculous, so I’m trying—minute to minute, sometimes—to Be Here Now, without being consumed by anger at my body or resentment of all the ways I’m not getting the help and support I’m absurdly convinced everyone else gets when they malfunction. That’s another poisonous lie we tell ourselves—that we’ve been singled out for suffering and that we’re uniquely unsupported. On a decent day, I still know that confronting your mortality is a solo flight no matter who you are, how old you are, or what’s prompting the confrontation. 

The antidote is probably setting your first, crappy thoughts aside, actively reframing them if you can (“Yeah, I feel like I have no help, but in reality, that large spider on the ceiling is totally going to eat the fruitflies that are hovering over the bananas—score!”). And if you can’t? The same panacea as ever: being present, focusing on one breath at a time, appreciating that you’re here to experience the miracle of breathing, knowing it’s all temporary, it’s not just you, we’re all in this together, even if only because in the end, none of us can escape. 

See? Bright side! Now can someone possibly rescue my laundry?

*Poison for Breakfast is also the title of a book by Daniel Handler

SWEATING IT OUT

SWEATING IT OUT

There’s a very rare hereditary syndrome known as CIPA (Congenital Insensitivity to Pain and Anhidrosis) in which people are incapable of feeling physical pain. They have no sensitivity to temperature and partial or complete inability to sweat. Most who are diagnosed with it don’t live past their mid-twenties. For people who literally cannot feel pain, life is, oddly enough, short and brutal, and sometimes “no sweat” puts you at seriously elevated risk for heat stroke and seizures.

Excluding the three-digit number of people known to have this syndrome, though, pain is probably our most universally shared experience. We all know what it is and what it does, so why the hell is it so hard to understand? Doctors still have no idea how to treat it. And if you live with it as your full-time ride-or-die bestie, you quickly discover that no one, even people who really do love you, can handle your bestie for long. We’re annoyed by other people’s pain. No: we’re terrified of it, and we’re annoyed that we’re being put into a confrontation with that fear. 

Ask anyone who lives with chronic pain or disability, “Who’s always there for you?” I guarantee you, the answer will be “no one.” Not your doctor. Not your partner. Not your children. Not your friends. Not your shrink. Not your siblings. Definitely not your cat. Most humans enjoy a neurological system entirely capable of producing and delivering a chemical called dopamine thus no direct experience in being paralytic one hour then shaking violently the next. In their reality, brain signals actually reach the intended target without disruption. 

This is common and it’s not because everyone’s selfish or uneducated about pain or “lacks empathy,” although that can be true of some people. We all have to protect and preserve our own energy, and other people’s pain cannot be our full-time focus. It’s exhausting just being in the same room with it, honestly. Denying the validity of another’s experience just because it’s uncomfortable or unrelatable or inconvenient doesn’t make it go away. Yet matter how closely connected we may be, it’s nearly impossible to fix someone else’s pain, though we might wish we could. Ultimately we need to focus our limited resources on problems we can solve. Of course I have to do the same thing! I have to tell people I love that I cannot hold space for their pain all the time

But there’s another face to this as well. When you’re in intense pain—physical or emotional—you become incapable of focusing on anything else. Live with it long enough and your toxic roommates Pain and Shame will disable your ability to see things from anyone else’s perspective, even if you’re theoretically good at that. Even if you’re an “empath.” Have we reached a scary point in the arc of history when we have to have a special term for “people who are very aware of other people’s feelings?” Empathy means you’re normal, not so rare and special that you need to mention it along with your preferred pronouns when introducing yourself. 

Pain is a jealous pain in the ass who will not readily share you, including with the people who actually are generally there for you. Chronic pain cuts you off from normal contact with the world outside its own tiny little cell. It locks you up like Ingrid Bergman in Gaslight until you start absolutely believing you’ve lost your shit. Given the level of noise caused by our collective agnst alone, it’s no wonder how help could be standing right in front of you and you might not even notice it. Our intentions of being helpful are too easily hijacked by the viral illusions of seperateness or scarcity. Less “What’s in it for me?” and more “How may I be most useful?”, please.

I’ve been wondering if traits like extreme narcissism aren’t really the absolute height of pain. People with profoundly narcissistic, antisocial or sociopathic personalities mostly get talked about for the pain they inflict—but the pain they are in might be worth mining for understanding. Those people, the opposite of the “empath” type, are incapable of experiencing normative emotions. They hurt other people because they fundamentally don’t understand or experience remorse, regret, or compassion, just like people with CIPA don’t feel anything when their own bones break. They exist in a wind-tunnel of their own; an unshared, unshareable, self-absorbed hell. They experience a limited spectrum of primal emotional states (rage, excitement). The especially adaptive and crafty ones can be very good at faking feelings by observing and mirroring other people. But they innately lack the capacity for love or joy or grief. These traits make narcissists and sociopaths unbelievably hard to feel sorry for—but arguably, we should. Their inner landscape is basically an empty theater. That’s a horrible way to have to live, and they didn’t choose it any more than I chose Parkinson’s.     

Interestingly, you don’t need that much distance from pain to benefit from it—when it stops even for a few minutes, you can be filled like a tide pool with a sort of beneficent calm in which it is possible to love and forgive absolutely everyone and everything. In that space, you can confront your own darkest thoughts and put them aside. You can experience a flood of emotional generosity and gratitude, an upwelling of strange connections and insights, or a heightened sense of connectedness to your fellow humans and to the nonhuman world. Pain casts a long shadow making it thoroughly impossible to be grateful for in the moment, but when you live with it chronically and it finally steps outside for a smoke break, you enter a world of radical receptivity—Emily Dickinson’s “formal feeling,” perhaps, or John Keats’ “negative capability,” where you notice the silence between your own heartbeats. 

I still don’t know what to do about the days when the pain doesn’t have an off-switch, but I’m thinking a lot about people who can’t feel things. In my weakest moments I wish I could join them, but it turns out feeling less is no gift. They might be showing up more often because they have something to teach us. And if I figure out what the hell that is? You’ll be the first to know.

I've seen you before

I've seen you before

You say you're done. With your job, the piles of bills and debts, your fair-weather friends, increasingly heavy burdens, the weather, and me. You've reached your limit! You aren’t as subtle or cool as you pretend, so everyone can hear your impotent yelp. You don’t need anything! So go. Just go. Go hunt your own meaning and purpose. There must be a sale on self-help books somewhere. 

I want you to see my eyes when I remind you that you too, are both predator and victim. You and the latest crop of showponies you call friends mistake my generosity for other things, conjured or whispered and I don’t have time for repeats or further rejection of reality. Besides, you’re off by miles, galaxies, and lifetimes. I’ve seen it all before, but offer mercy anyway. What is the word for, “No we can’t hang out, but I sincerely wish you peace and love for the rest of your days”? Perhaps something like this.

Build your temples and altars, then light them all on fire. There is sacred to be found in the profane, and the ordinary. You have not been forsaken, your people are not abandoning you with intention. I did not leave when you broke our agreement, I’m just over here ducking for cover and playing witness, but there is nothing left to resist, or argue over.


This does not mean you are not adored or valued, but humans are known to disappoint, or disappear. I may be a disappointment to you but I’m still here. For reasons we cannot parse, our current condition may excite or repel others into a retelling or dissolution of their own truth.


Not to diminish your experience, nor adorn your dark night of the soul with glittering accessories or lipgloss. You can't pretty up an existential crisis.


This is going to hurt.


If what you expect of me is another glorious phrase borrowed from the wise ones who came before us, playing the eternal optimist or jester for your court, then we've never met. Excuse me while I locate a plunger for the overflow. I can be just like you- full of $hit.


It is hellish, what you must endure. I speak with authority only because I've been forced to become intimate with suffering and grief. I know a few things about suffering, and silver linings too. Parkinson’s has been both degenerative and regenerative. (More on this later.)

I’ve had trouble believing anyone reassuring victims of various abuses and the persecuted that justice will prevail. It feels like the bad guys are winning. Not only winning, but kicking us all in the proverbial nuts on the way to the highest office where they can insert lopsided policy that serves only them and theirs. How can only a few own the air above as well as the land and sea below, when paradise was a gift to all?


I don't see any lines telling us where to stand, do you? 


The reason blood continues pumping through my veins and not spilling into an early grave is LOVE. Love felt, observed, given... lived. I swallow all the pills they sell, but the drugs don't work. My medicine has nothing to do with pharmaceuticals, or MDs or PhDs or letting everyone know how to be enlightened.


I refuse to bumpersticker this to make you feel better, because there is no way out. Ask Johnathan Briley, or Bal Kishan, or Jill Wieber Lens about choices from the comfort of your home, then let’s talk. We must remain acutely aware that not everyone is having the same experience. After criticizing the use of an infamous rapper as a reason to support educational opportunities from my sweaty keyboard, a wise woman once reminded me of this fact, and I’ve never forgotten it. 


Hold this child, this part of you that died. It's not your fault. We show up under circumstances beyond our control because we have no choice.


My Father used to say, "I'd sit upon a carpet tack and ride around the world and back, for you,” and I knew he would have done this and more, because he loved me completely, unconditionally. He did this without expecting anything in return, apart from an occasional hug and an awareness that son of God, or not, Jesus was right. Indeed, worship or word without works is dead. 


Though there is no substitute for unconditional love, we can learn to give it even if we've never received it. There is an infinite supply of love in our existence, so we can only imagine what is beyond our knowing.


And though we hurt one another, notice how I'm still here. Not as a masochist or another impossibly slow learner, but because I've seen your sweet side. It’s too late for pretending to be hard and impenetrable, because in spite of your efforts to cover it up, I can see you.  


I don't have to believe in us together to believe in you.


You may ask not why am I here but what might I do to alleviate some small portion of this universal suffering? THIS is how you can gather the strength to marine crawl out of your hidden-hole cave of misery. Time has no obligation to be kind, but in my shortened stint on Earth, I can. 


Do you have any idea how many decent human beings it took to revive me this week? Yesterday I woke with bitterness on my tongue, muttering about death and taxes, yet by the graces of many, I am revived. Support is not always what we may think it is or should be, and arrives just in time from unexpected sources


So let's roll...come on it's getting late!  Maybe all you can do is wiggle your toe but there is no getting around or under or avoiding this one. If I can do this, so can you. 


I keep looking around for an adult. Surely, there must be someone here with answers or ideas on how to escape the worst parts of being human? Shall I consult another spiritual advisor? Where do we go and what do we do,now that Dad is gone and Mom is so far away?


If you still feel lost or despondent, here is how to begin:

1.   Listen to that small voice that says get up.

2.  Take your coat off and give it to someone who needs it.

3.  Ask where you might be most useful.

4.  Ask (directly and clearly and specifically) for help and guidance.

5.  Stay in your body and in each moment, even if it hurts.

6.  Find a touchstone and stop drinking so much poison. 

7.   Breathe deeply, then repeat after me, "Human being."

8. Go. Love. Now.


Walk Your Talk

Walk Your Talk

What can I do with my time here? I can write. I can show up and speak truths in creative ways, so you don't fall asleep listening to important, but often clinical and dry research.

If you know a better way, use your unique talents and go for it! Shine a clear light, rather than crapping on someone else's efforts. The only time we should call someone out is when they abuse power, causing additional suffering for personal pleasure and gain. (The latter ought to keep you busy.)

To be effective in inspiring change, advocates must walk their talk. For the sake of convenience, I often use myself as subject and therefore must remain clear and present.

This is why I am no longer drinking.

So the next time some misinformed creep (yes, I'm totally judging them back) projects their familial dysfunction and denial of their own issues onto me I can just say, "I don't drink. This is what young-onset Parkinson's looks like."

I used to like how alcohol stopped the tremor in my left side, but I'd rather shake a bit, than escape into an illusion of temporary normalcy or unconsciousness. I was a social drinker, but find it serves no one and nothing, least of all my highest intention.

I've made my sobriety public for the sake of transparency, so that I may report alternative options I'll explore using self as subject. Maybe someone will find my "research" useful.

Carry on, soldiers of light. Advocacy and activism is a collective experience much bigger than any one of us. Education, information and compassion can change the world!

Please remember to breathe and...

"Stay golden, Pony Boy."

Advocate for Yourself (And Others)

Advocate for Yourself (And Others)

You'd be surprised at who shows up to help you, but you have to ask very clearly and specifically for what you need. We all get distracted, and the language we choose can be confusing.

Last Dance

Last Dance

They used to call this condition St. Vitus’ Dance…

Happy Birthday!

Happy Birthday!

Someone left the cake out in the rain.

Managing a chronic, incurable, and progressive brain disease exhausts most of my time and energy. The worst part is not my pain, but how my challenges impact those around me. In ways I could not have imagined, and certainly never intended, loved ones are inconvenienced and negatively impacted. Anyone with high expectations will be let down. By the time I arrive at an event, I’ve burned dwindling resources on prep and have less energy than a sloth taking a nap.

The probability of upsetting loved ones rises as pressure increases. Many PwP override fatigue in an effort to avoid scenarios that affect others, but we cannot fight gravity.  Living with any chronic condition can make even the best intentions appear self-absorbed and, in my case let’s throw in a hearty serving of scattered, with a side of forgetful. Yummy, right? It’s just icing on the cake!

Once I forgot to pick up a birthday cake on time and kinda missed a friend’s actual birthday. Understandably, she let me (and everyone else) know how disappointed she was. I’d been expected to arrive earlier and my slowness and disorganization was taken personally. The pressure of these expectations caused my body to freeze. It was a valuable lesson in self-care and allowing others to have their own trip.

If I enjoyed healthy neurology and adequate dopamine, this would not have happened. She meant so much to me and I suffered shame inside, too. I appear relatively healthy, and some of my intimates don’t realize the scope of my condition. It is my job (not anyone else’s) to communicate my immediate experience as clearly as possible as things are shifting. Nobody can read invisible cue cards or hear silent screams for help. Hiding my symptoms and feelings became a full-time improvisational gig, and Meryl Streep might be proud of my improvisational acting.

Everything is fine!

I remember standing frozen in bustling downtown with the cake in my shaking hands, awkwardly cradling the phone to one ear as we argued about schedules and priorities. While I was trying hard to keep my cool (yeah, no), I was distracted by an acute pain in my neck, on a day when nothing was working, with exception of my heart and tear ducts.

To start, I don’t go out in public unless my medication is working. What people who do not have direct experience with Parkinson’s fail to realize is its inherent unpredictability. I may have left the house feeling fine, but in another hour I might be tripping up a familiar walkway, then fumbling a ridiculous amount of time at every door for keys or the rearrangement of hair or a jacket. By the way, have you seen my wallet, and why is everyone staring?

Think of a neurologic disease as a werewolf taking over- only it doesn’t happen on a full moon’s cue, it’s random. Ask someone with dystonia how they are getting along, and you’ll always get a different answer.

After arguing and failing to explain to my Birthday Friend why I was not where she wanted me to be at the right time, I did the only thing I could muster the energy for- I dumped this beautifully-crafted and overpriced delicacy into the nearest trash can and turned the phone off. I didn’t have the heart to look down and see her name crumbling and melting into the trash. I loved her better than that, but failed again to meet deadlines normal folks and moms and most citizens of our city seem to manage so flawlessly.

I envy the “perfect” moms who are so proud that they can “do it all”, though we all know exactly what is going on just beyond the glimmering facade. Watch for the crack in her smile as those veneers are exposed. Listen to what she doesn’t say. Perfectionism is the slow path to fresh hell… and it’s boring.

It’s not hard for a person who was denied birthday celebrations by grandparents who feared “spoiling the child” to understand how it feels to feel disappointment from high expectations on your birthday. For her, this was more than a little faux paux- it was unforgivable. Her camp remains blissfully unaware of my real challenges saw it as rude, neglectful and crucified me.

Unfortunately, Parkinson’s is a honey badger and doesn’t care about your calendar or anyone else’s expectations - whether it is missing a birthday or a monumental event that requires your prompt attendance and attention. A neurologic condition forges on. Stress and rushing only feed Parkinson’s, until symptoms kick into high gear just in time for the big event. I have broken into hives in large crowds, and have been known to experience panic attacks on busy highways. Try telling your boss that you were late to work because you were on the side of the road sobbing and hyperventilating for no particular reason.

I enjoy challenging myself and getting out of my comfort zone. Last night it was live karaoke and tomorrow maybe I’ll storm an Embassy in my ‘Puck Farkinson’s’ shirt, demanding  change. Not sure which embassy or what change I think I might facilitate, but darn it, I’ll try!

Cheers to dopamine!

For those of us with neurologic challenges, prepping for formal event requires anticipatory skills of a Jedi level. Heaven forbid we want to wear jewelry that requires clasps or favor heels. I had to say goodbye to that pair of Jimmy Choo Stilettos years ago. I give props to and am terrified watching these dancers dropping to the floor in unfathomably high heels!

Yanis Marshall, those heels are fierce!

It’s imperative we remain acutely aware of the toll our condition takes on our friends, intimates, and families. It’s important to to remember this in order to infuse deeper gratitude for the support we do receive. Regardless of the cause, chronic pain can change personalities and distract us from the abundance and beauty in our world.


Counting my blessings is keeping me quite busy. It’s a lot easier than dredging up times I felt abandoned or betrayed or just disappointed by the ones I presumed to know so well. At least I know it’s not personal, as capacity for tolerating the progressive pummeling of Parkinson’s symptoms may vary. Our loved ones aren’t just passively observing- it affects them too.

Surrounded by thoughtful and kind humans, I feel lifted and enjoy reserves that cannot be depleted. When I communicate clearly, they can hear me and know better how to respond. This exchange does not instantaneously occur in relationships, it takes time and practice - we teach each other. Yes, it requires a lot of work… and compassion. The latter must expand from within.

During off-times with this condition, the friends who took the time to get to know me still come around. I take the time to get to know them well too, and ask how I can support them. Any new friends have never seen me without the burden of chronic pain, but every one of us has  burdens we carry in our bodies and memories. Just because I struggle does not mean that I can’t be helpful. It just means that my help may require flexibility, reminders and maybe a delivery service.

Everyone has their down times though, and for a PwP that means the body refuses to cooperate with basic movements required to move about in the world. I know too many in our communities who never leave their homes- it’s can be too exhausting and humiliating to dive in with the “normal” crowds.

An example of an off-time can be seen in Jasmine Sturr's video short on DBS where her movements are drastically changed by stimulating her brain. My medications and current health routine work similarly to keep me “on”, except when they don’t. I cannot anticipate when they will work well and when I’ll be out of luck. Off-times include brain fog and the inability to maintain a “normal” schedule, and this really bothers people who thrive on consistency and routine.  

My relationships also tolerate my incessant need to dance and sing and move about. They also need to support my compulsive sharing about PD (and all neurologic conditions) even if they have no personal experience with neurologic disorders, beyond our connection. Sometimes I can’t even meet them halfway or focus on their immediate needs because I am overwhelmed managing basic life responsibilities.

“I need you to prep a meal for six and pick up my kids and two bottles of the vino they have at that one place without any parking in 30 minutes.”

Just NO. No can do. No to the no no no. Call a Lyft for them, AND me! I’ll be in my sweats.

PwP’s have so much going on under the surface, it is no wonder we even function half of the time. Forget your “normal” template, filled with great plans… for someone else. In relationships, we must maintain flexibility and humor.

Dude, I try.

Accepting new realities means it is probable that all who follow a strict schedule will be disappointed. I know my lack of organization and timing blunders hurt your feelings...but I’d rather anyone listening hear this: I am not capable all the time. Not on cue and in spite of my finest efforts. I am loads of fun, and happy to keep you laughing, but if you take common symptoms personally you’ll probably grow resentful, if not contemptuous.

I’m not being a jerk, I’m just struggling with brutal symptoms and side effects you probably don’t even notice. OK, well… sometimes I am being a jerk… but it's also true I am no longer capable of multitasking.

If my vibe ain't your cup o' tea, move along. I choose to enjoy quality relationships with people who have this thing called empathy

When we don’t understand someone’s behavior we humans tend to project our evaluations, our fears and sometimes our own issues onto them- this includes armchair diagnoses, misunderstandings and almost comical levels of projection

Although.. this disease is not easy to be around. Partners of PwP need support too… a lot of support! If they are being coached by people who do not know about brain disease, then you’ll hear them parroting phrases crafted only to protect themselves. That’s right, I became not a pleasure, but a THREAT for the Birthday Friend. THE threat. Banished. Denied. Bad. No cake for me!

Some days it’s a miracle that I’m standing upright and my teeth are brushed. Today my shoes match and I sing a song I barely know with the band in front of a packed club. My peeps know off-times are no reflection of my love and respect for them because my inner circle doesn't include insecure or judgey folks who take everything personally. Hey, that's MY job! 

It started to rain after I dumped that pretty cake into the trash bin. I wandered aimlessly then slid into the car, covered my red swollen eyes with my daughter’s ridiculously large sunglasses, opened all the windows and blasted Donna Summer.

 

Macarthur Park

Special thanks to Jodi Smith, Editor Liz Eisinger, drummer Martin Garro, The AMAZING TALENT at Retro Junkie, and to Glen Campbell (who lost his life to Alzheimer's last year) for writing Can't You See (Marshall Tucker Band). I'll keep practicing!  

Exiled Heart

Exiled Heart

Love never goes away, it just changes form. 

Wild Night

Wild Night

How do you get through the night? 

Belts and Beck

Belts and Beck

Belts and Beck, a love note to lyricists and memories