A lesson in futility

A lesson in futility

Note to self and others:

“Yes, this situation is hard on everyone and can be confusing, but you mustn’t bother with willful ignorance. Your world is different now and not everyone is going to get that.

If there are people in your life who insist upon taking symptoms and side effects of an incurable progressive disease personally, demanding you do things their way...cut em loose.

It sounds harsh, but this scenario can make a brutal situation even worse. In terms of voluntary relationships, like choosing a friend or lover, you do have a choice.

I kept thinking that if I found the right words or tried harder to meet increasing demands, it would heal the situation. The burden of proving that the disease, and not poor attitude, was the problem became exhausting. I was in need of support, but instead resources were depleted even faster as I gave everything to reassure, to help someone else see.

A lesson in futility.

The impossible situations we endure for “love” or “friendship” will force the progression of this disease. Often they aren’t helpful or even healthy. I am here to remind you that you must stop taking superflous hits if you intend to survive.

Our intimates may not have the capacity to understand that life-threatening or life-altering illnesses are not about them. We failed to show up as they expect of relatively normal and healthy people, so they get frustrated and upset with us. Rightly so, but there is a wealth of published medical material to depersonalize and clear this confusion.

Maybe they don’t have access to media or the internet?

Some friends may fill in confusing gaps that they don’t understand with information that does not pertain to you, or your situation. Their fear leaks onto you, and vice versa. When you stop participating in this ridiculous cycle you’ll have more energy for what matters.

This is true in every situation, not just when disease is beating the crap out of a friend or partner. All PwP can do is try to manage symptoms better and continue to communicate clearly.

Unfortunately, we are also forced to suffer random fools who do not even know us tossing opinions like sharp stones into our increasingly difficult fight for survival- one they just do not understand.

These same folks have big ideas about how they would handle your life so much better than you, if they were dx’d with an incurable progressive brain disease. Most people don’t even know they’re looking at a miracle.

I am grateful to be alive and thriving much as possible under challenging circumstances and choose to spend time with people who get this.

My unsolicited advice: 
Stay in the light of love and let go of the rest.”

 

Of note: Thank you to Adyashanti, one of my teachers. His words have  changed the way I respond to life's challenges. 

Communication is the answer

Communication is the answer

Do those in your immediate circle (family & friends) understand the challenges you face with Parkinson’s? If not, what might a creative writer express that could help relatively healthy folks relate to us better?

I’m not talking about sharing links to medical information, I’m asking how things feel on the inside, regardless of how they might appear. Not every Parkie presents the same way. One hour I feel great and move well, but a few hours later you may find me shaky, forced to cancel exquisite plans.

Repeatedly, we see messages in our community that express a deep despair and much suffering over misunderstandings, abandonment, and behavior that confirms a lack of education about Parkinson’s, anxiety and depression. This additional anguish is unnecessary. We all have enough to handle! It’s a challenge though, depending upon the age and level of awareness in our circles.

Prior to and even during the first 4 years of my dx, I was not aware of this iceberg effect, so how can I expect anyone around me to just “get it?”

My goal is to find language that gets as close possible to the root of cruelty of disease. Bleeding onto the page as we have been informed to do by Hemingway is not something I expect to master in this lifetime, but I’m going to give expression a shot...for all of us.

Have you ever read a story or a book that you felt in your own body as you were one of the characters?

I’d be grateful if you might share YOUR THOUGHTS on what part of the Parkinson’s or dystonia or Ataxia or MS (any neuro disorder) experience you feel is the most misunderstood?

If people who love us and who mean well are missing the mark, then communication is the answer.

Here, an image of my youngest, who was “So over talking about anything, Mom,” on this day. She just wants to be a teenager with a consistent place to land, but Parkinson’s continues to be an unpredictable drag...hard on all of us.

Patience

Patience

Patience is not my strong suit.

I intend to lift others and help them see what they are doing right. Hold their hand (not necessarily literal) if they feel isolated or misunderstood... but I can be selfish and scattered and blinded by circumstance.

I’ve learned that I don’t have to agree with or even understand someone’s experience to be helpful. Compassion doesn’t require a degree and I am not here to play judge, I am here to learn to love.

The template that works for my life circumstance does not fit you. How I act and react in a situation might be very different from how you might act and react in the same situation. This part is never personal. It’s not about what someone is doing “to me”, it’s what they are feeling and navigating in each moment.

I try to use the pause button when I observe someone who appears to be acting out. The idea is to override my basic instinct to scrutinize their behavior, and look a bit more deeply to consider there is much I do not know. Human behavior can be confusing and I’m still learning.

Asking questions and being curious rather than drawing absolute conclusions is a pretty good way to roll.

I’m writing a short piece on empathy this morning, though the word is never mentioned. I’ll publish it without an edit for time’s sake, as an offering to someone who woke me up, again. We keep awakening from unconsciousness...how cool is that?

The most potent lessons I’ve encountered were from teachers who did not wear robes and had no particular credentials. This time it was a child who offered a valuable lesson- one I almost missed due to my own impatience and lack of dopamine.

I bow deeply to the kid. 🙏🏽🙏🏻🙏🏼

No one should suffer alone

No one should suffer alone

Depression is made worse by isolation. Find seasoned professionals and fierce bears who will support you in this journey. 

Get a Second Opinion

Get a Second Opinion

Be assertive with your own healthcare professionals and ask questions. If you don't feel heard, find a new practitioner. 

Off Times

Off Times

I just watched a vlog about surviving the holidays that was helpful. Thought you might also find the tips useful too, so the link to MJFF’s version is posted below.

Holidays can be tough on those of us already depleted and or ravaged by disease!

The live video by Jackie Landry of Nova Scotia made this list clear and relatable for anyone who finds this time of year a challenge. Our community benefits from those who take the time to share this info in their own unique way.

Just Dance.

Just Dance.

Just dance.

Anything that gets you moving to a beat is beneficial to your neurology. You can even be in a chair and wiggle around seated if your balance and coordination aren’t cooperating.

Fitness can be incorporated into almost any situation and need not be compartmentalized as something we do apart from the rest of our life, as another chore on our list of things to do.

All you gotta do is groove to the beat. It’s the work out with the most potential for fun, unleashing sacred or silly energy. An expressive mood lifter and toner, dance allows us to connect with our bodies in a playful way.

Get some dopamine by getting your groove on! If you’re feeling locked up and stiff it can help with that as well.

Shoutout to Club 1220 💛 Whether the dance floor is empty or double parked, the people who work and play there make it glow and sparkle. Thank you for the good times!

A 90’s dance playlist link as one option for your boogie time:
https://open.spotify.com/…/121907452/playlist/6qb0EanO1HFnd…

Dancing with the DJ to house music in gold pants is never a bad call.

Not Flinching

Not Flinching

Not flinching. Howling is more fun. 

A Partial List

A Partial List

Giddyup readers!

A partial list of “Things I wish I knew when first diagnosed with a progressive brain disease.”

Well well well, looky here, I dun figured a few things in the last 6 years! Maybe if I share my failures, it will help someone here.

Yeehaw!

Trial and error, two steps forward, one back, and hey cowboy, stop touching my belt buckle. I’m just friendly, darlin’! If I were coming onto you there would be no mistaking it for anything else.

OK, whew, glad we’re clear on that. About that list...

NUMERO UNO by a long shot:
Agonists* warp your impulse control. 
Knowing my usual baseline and practicing hypervigilance in terms of impulses would have been an easier plan. Now I sit with the root that is prior to any reaction, and consider that first. The pause and deeper reflection are keys to the kingdom.

2. How to deal with depression and anxiety in Parkinson’s and communicate better with intimates. It’s not easy even for those who know us quite well to identify and interact with various signs of depression. This condition takes no prisoners! Be ready, because you’re heading into the mental equivalent of an MMA ring with no tapout if you have been dx’d. Those who stand by us are most cherished friends.

3. That the effects of alcohol are not only doubled now, it consistently negates the positive effects of various medications. An amount over two glasses of wine can act as a slow poison for my body. The hook was that one or two drinks stopped all tremors. That’s one seductive hook, to feel sort of normal and more fluid at social functions!

4. That I can no longer jam the family or personal schedules and must be extremely careful about what I take on. It was unrealistic to think that maintaining the same pace would even be an option.

5. Don’t bother explaining this situation to anyone who takes your Parkinson’s symptoms personally. If they insist upon holding you under the wrong microscope and vivisectioning you according to wayward opinion rather than facts, they’re refusing key info. Back away and save your precious energy if this becomes a problem. Not worth it, unless you prefer to die faster.

What are yours?

* A common Parkinson’s medication to assist with mood and movement.

Bringing Raw Ideas to Life

Though it was not good news to learn of Reverend Jackson’s diagnosis, knowing yet another has joined our ranks and will suffer as we do, I was honored yesterday to speak on behalf of our community.

Communicating our experience is key to expanding awareness and compassion, if we can be honest in our responses. Telling the plain truth even though some of what we experience absolutely guts us, is not always easy. We need our dignity, our privacy, and some sense of normalcy intact just to survive.

Parkinson’s and all related conditions = anything but normal!

Given the opportunity to reach thousands or millions, what would your answer have been to this important question?

“What would you like people to know about Parkinson’s?”

A big shout out to Anders M. Leines who is a powerful force of progress in our worldwide community. He brings our raw ideas to life and his work continues to astound and delight! Some of his work can be found here:

https://vimeo.com/user6354186