You have been given a body. Your body is a temporary vehicle, a resilient shell housing vibrant soul and active mind. It contains a compass to guide you through harsh times or help inform you during ethical or moral dilemmas. In your mind is a shifting landscape of emotions and feelings, which never stop. On a clear day you can watch it blow around like sand in circles, then quiet it with practice. Give yourself a break from all the relentlessly high expectations, but whatever you choose, don't think of an elephant or fixate on any particular state of being. That's like telling yourself (or anyone else) to "Just be happy!", which is as useful as screaming, "Relax!" at someone experiencing a panic attack. People living with disease and chronic pain understand that the only way to go is to take it as it comes and smile at such adversity.
Like we have a choice.
I am not particularly brave or inspirational to be sharing stories, I just happen to realize that we are in this together, for better or worse. It's a marriage born from a recognition of mutual suffering. I do feel sorry for you, because you are stuck with me and I have been silenced too often by those who are fearful and controlling. You probably know what unbreakable and fearless spirits do when they are told to shut up.
"Stick around, this is going to fun!"
"Like a punch in the throat or a root canal?"
More like a magical tour in another universe, with something jagged and slightly menacing nipping at your heels. That feeling of time running out, or not being able to move quickly enough to "keep up" is even stronger after diagnosis. Now bring in the clowns, and let's cause a ruckus! One thing I will not do is smile politely while we get mocked for a disability or handicap- or even for chronic pain, such as PTSD or various auto-immune conditions.
You may mutter, "Take your ring back and shove this club card where the sun don't shine!" I don't blame you if you feel this way, but I'm the least of your worries if you have a progressive incurable disease. Shhh, I know where the exit is located. It's not an escape hatch, but it'll get you through that part about wishing it was different. Acceptance does not mean giving in, it means going forward with less attachment to how things "should" be, instead working with "what is". Not easy to maintain, but worth the effort.
Radical acceptance allows space and energy for real progress.
We may as well dance, sing and bid on miracles. It's a good thing I'm not in charge, or we'd all be in a dive bar doing a karaoke rendition of Tyrone right now. If you think I am kidding, ask the people in attendance at this year's WPC in Portland, Oregon.* Karaoke is free therapy, and good for your mood and vocal health, so get on the train! I find it rather auspicious that the next World Parkinson's Coalition event will be hosted in Karaoke Motherland. Kyoto, put your chin strap on, because even without dopamine agonists, we are a lively crew!
Aside from believing in the healing power of song and dance, I have a keen interest in research, participating in trials and conventions, and when possible, supporting collective efforts via wallet and time. Education and connection are saving us from dropping into the deep dark abyss of our progressive incurable disease. If I may suggest one activity beyond moving around as much as possible, it would be to share valid info or express your unique story...until you are out of breath. There is a sticky and stubborn ignorance surrounding this disease and it's symptoms, and YOU are here, with useful tools. I did not intend to become a writer but was forced into this wobbly seat by a series of situations that almost took my life. I had nowhere else to put them in the aftermath, which was more like a bloodbath. Being misunderstood so often makes living with Parkinson's even more difficult. We've all had quite enough of the common gaffe of mistaking the symptoms of a disease with the person enduring the disease.
We don't have time to keep explaining, yet that is exactly what we must do.
Depression and the non-motor symptoms can be the worst part of any chronic illness. Anything that does not show is a silent killer. I'm not afraid- of challenges or opinions, nor do I fear pain- a constant pain that insists upon an intimate relationship with me, every day and every night. We must prepare for it as if we are each going to war. A softening though, a leaning in with extraordinary compassion. Not war, as in harder, bigger, faster. That $hit never works.
Go toward joy, knowing there will also be pain. Use your compass.
Parkinson's is the only enemy here, because of it's slow dismantling of a human being(you may call it a curse), but it does have silver linings. Knowing I can survive anything and witnessing friends show their true colors has been revelatory. When things began to get extremely difficult, some friends fell away and it hurt to feel such scarcity of understanding and lack of general concern. I know many of you feel similarly about loss, so I have another post ready on the topic of betrayal. The only delay is that I edit your details with great respect and care. Thank you for sharing and trusting me with your personal experiences.
Is it possible to let go and forgive misunderstandings about what you are dealing with? I certainly did not understand disease prior to my diagnosis, and I considered myself fairly well-informed, sensitive and thoughtful. The education of such things is now in our shaky hands. The new friends and family who occupy that terrible space of loss and grief that was formerly overwhelming, are the same ones now delight and astound me, every day. If we can't do the work for ourselves, we create a new purpose to contribute, for all concerned. Acceptance through compassion for self and other.
Everyone gets a turn falling apart.
I am a big fan of simply acknowledging the ring of fire and observe those I meet in various stages of stepping toward, through, around or away from this unavoidable part of our existence. When in pain, people do incredibly stupid things and hurt each other, carelessly, without realizing the extent of harm. It's common to make basic mistakes though, and we should just expect them. I might even do something stupid today! Full disclosure: I was reading with a book in one hand, with precious liquid gold (coffee) in the other around 6 AM this morning in a robe that is too long. It was such a spectacular fall, that I could have been a stunt double! My dog still appears worried, but I got Zen slapped with two persistent lessons:
1. Multi-tasking is no longer my forte. Yes, I probably will be late to my own funeral, so shut up while I do just one more thing before leaving the house.
2. Being mindful and present is not the same as embodying such lofty pursuits. Namaste, bleeping bleepers! (I have no idea what that means either.)
Accepting the present moment is actually not as simple as it sounds. It also does not mean to give up or give in to our troubles, it merely means to be aware of what is right before us. In a vivid world with infinite gifts, life is unfolding as it should be, while we methodically distract ourselves. You get to choose which scintillating distractions will pull you out of a moment.
Oh look, a shoe on the side of the road! Someone must've had one insane kind of night, to actually lose a shoe. I like your shoes, by the way. What were we just discussing? I am pretty sure we are perilously close to unraveling the mysteries of the Universe, but I seem to be missing a shoe. Hey, wait a minute...
Boom! Like that we get sucked in. To shopping, overindulging, staying up all night (not by choice), lost on the super-information highway, arguing with ourselves, or worse- in a debate with virtual strangers, and electronic overuse in general only triggers more OCD. Of course sensory overload is a serious problem for parkies. With our executive functioning deficit, it's common to appear distracted or checked out. Sometimes we just have to get smaller and quiet. If I disappear, you can know it has nothing to do with you. Being perfectly yourself, you are appreciated, but my lids are so heavy that naked celebrities doing cartwheels off my roof into a hot tub would not keep me vertical. It's not you, it really is me. Most artists are like seasons in rotation and have a wide swing to their input/output pendulum to begin with. Wildly unpredictable is my latest vibration- or maybe it's fatigue.
Anyone living with a chronic or incurable disease will tell you it makes life unpredictable. This is what being alive means though, and indeed life does happen while we are busy making plans! If you trust your own compass you know it's going to be OK, even if everything falls apart or away.
I have stories to tell before I launch into lovely topics like my new roommate, DYSTONIA (she is such a jerk!)** The next blog will link the recordings containing fiction. I'll publish a few at a time between regular posts, because the characters won't stop tugging on my shirt, demanding attention. I am only a conduit and must learn to accept this as my current reality. Since my hands don't always work, I'll be recording fiction to begin sharing more than just health-related information with more speed. I promise to remain a strong voice for Parkinson's awareness, but when boisterous fictional characters roar and pound on the door, I'll open it and get out of the way.
"Let the wild rumpus start!" - Maurice Sendak