Finding My Tribe
Parkinson's is such a pain in the neck! I'm not being flippant, and it's not only hurting my neck, it affects every part of my body.
If you have Parkinson's you are constantly negotiating with an unreasonable, mercurial and hostile occupation of your own body, with scant relief in sight.
It's more than just my body, it's everything. My relationships, family, career, and general sense of well-being have been getting crushed. There is no part of life Parkinson's leaves undisturbed. Torturing from within, PD is a sharp quadruple threat of depression, anxiety, chronic pain and exhaustion. A slow humiliating dismantling of a human being.
You may find your bff forever friends are too uncomfortable with your life-altering condition to stick around. Your situation a harsh reminder of mortality or failure or who knows what in their shaky (no pun) worldview, and that has nothing to do with you.
I feel mostly alone in the community where I reside, as friends enjoy normal activities with freedom and fewer obstacles. They resist any frustration with my decreasing speed and mean well, but along with strangers, they may relate with much less significant health issues, insisting they understand or offering medical advice...until I want to scream.
I know you want to scream too, because I can see the smoke coming out of your ears. Maybe you should try that cross body therapy that's so good for us, and punch things. Just make sure that you put boxing gloves on and stick with inanimate objects. This condition is maddening and lonely and entirely disorienting, at best.
With Parkinson's the body behaves as if disjointed from your intentions, disconnected your brain. You can will your hands to move in a particular way, but Parkinson's will make your limbs tremor and stall, awkwardly, often painfully. This tends to keep you apart from everything and everyone going on around you as you move through society among a majority who does not recognize your condition.
Any of us want to hide when we are not doing well. We shield our friends and family from the worst so that we don't disturb or upset them but also because we don't wish to humiliate ourselves. It's hard to go from being an athlete to a stooped figure. It can make anyone feel so small and insignificant in the lives of others.
Parkinson's has control over the master panel of your intentions now. The great Oz has spoken, now take your pills, check your head, and be on your way! Memento mori.
There are other ways to live. You are not alone nor are you particularly unique.
Welcome to The World Parkinson Congress! You are among thousands of people who you don't have to explain yourself to. There is nothing about your behavior they will find unusual or off... even your off times you waste so much energy trying to hide everywhere else.
Every three years we have the opportunity to meet in a different city to explore together. As conference convenes emotions run high, the scope of optional activities and presentations are overwhelming, and exhaustion is imminent.
Before the Congress in Kyoto I planned like we'd be entering a realm of absolute Armageddon, then burning the candle at both ends and left with the equivalent of pneumonia, bedridden for weeks. I felt disconnected because I'd chosen a hotel too far from the main activities, and was grossly unprepared for culture shock. Unexpected issues with claustrophobia and a language barrier I could not overcome further depleted my resources and usual coping mechanisms.
Once within the Congress Halls it was easy… Because I was with my tribe.
My entire life I've been searching for my tribe. Always feeling disjointed and apart, the odd one out, and most lonely in a crowd, so it is most healing on a number of levels to just to be accepted as I am. My appreciation for the WPC runs deep. I have met people I call friends and family, people whom I adore and cannot wait to see again.
It has been dubbed the parkie jamboree and the family reunion, and mecca, because it unites us with one another and with the researchers and geneticists and companies in support. Without this I might've succumbed to crippling depression, or limited the scope of my interactions with PwP in the US alone. In a typical week, I now collaborate with Norway and Sweden and Canada and The UK and Spain and various countries in South America and Africa. I owe the WPC the greatest debt because it cracked the world of Parkinson's treatments and possibilities open!
There is no other place you can meet such a wealth of of internationally recognized researchers, and gain access to smaller group discussions and talks. You get to individualize the experience however you like because there are so many choices.
You may intend to get a lot done in one day or meet up with people at a specific time, but these details are no longer up to you. Careful to avoid words like incapability or handicapped for good reason- your condition fluctuates wildly, depending upon a number of factors including the efficacy of medications that allow you an amount of fluidity
During the Kyoto Congress I was excited to learn geneticists may be closer to finding a key to slowing or maybe even halting the progression of our condition. Imagine, some relief! I left hopeful about the future of Parkinson's, including the possibility of early detection.
I'm excited too, about various collaborative groups meeting between the congresses. YOPD patients have different immediate needs, and this was addressed, with a clunky introduction. Change and organization are never smooth in Parkinson's. It really is a herding of cats! To see the full scope of Parkinson's patients as a result of meeting people at the congress informs our care.
I had the opportunity to meet some extraordinary people including a Nobel prize winning researcher, and others I have great faith in. We traversed land and sea to convene in places I'd not otherwise experience. Depending upon where you're based, it can be an actual nightmare for people with motor symptom disorders to plan or travel or navigate upon arrival. I wrote a bit about the difficulty I had finding gluten-free meal options in Kyoto, and was absolutely thrown by the tactile ground surface indicators that made walking or pulling luggage even more challenging.
Japan is a rather private and formal culture, one that doesn't appear to be vocal about any such challenges, and this silences and isolates (killers). Parkinson's patients need to find our tribe to feel connected and involved in the society they live in. This is not easy in a place where tradition is not easy to question, but bringing this international event to a culture that had never seen anything quite like it had a profound effect on PwP in Japan. For those who spoke only Japanese, it is the only World Parkinson Congress they will be able to attend. I am positive that their experience at the congress has forever changed the Parkinson’s community there.
The lack of handicap access and dense population on this island are not kind to anyone with a movement disorder. I noticed the elevators were out or too small for wheelchairs in several train stations, and though I didn't need the elevator I thought of people who do… How did they get around?
Maybe I should've called customer service to inform Japan that a suburban American mom wants them restructuring their ancient civilization to meet her specific needs!
"Hello Japan, this is Heather. May I please speak with your customer service?"
"Pardon me?" (Painfully polite Japanese Citizen speaking perfect English, because they learned various languages, unlike a typical American who thinks her country is the center of the Universe.
"Are-eee-gaaaahtoh, I would like to make a complaint to the customer service management of Japan. Please change your civilization and The structure of your transportation and walkways, and add English signage!"
I'm sharing my satirical "customer service of Japan" call, because even though the last location was not particularly easy for many of us, it is the traveler who must find ways to adapt.
This is what managing Parkinson's is- constant and relentless pain, within and without, that we are called to manage during this hostile occupation of our bodies. This includes all manner of labyrinthian and sisyphean locations and tasks we must navigate.
To paraphrase Pema Chodron," You can try to put leather over the entire world or you can tie a small piece of leather around your feet to protect them and carry on. Parkinson's will restrict more of your movement when you are stressed, and travel is stressful. Your choices and conveniences will be fewer too, but there's very little you can do about this, other than trying to gracefully accept your fate. (Gracefully, hah!)
I'm not being fatalistic or negative- this is plain talk. "It is what it is" is the least favorite phrase of any visionary or dreamer, and I admit to both, but we are talking about a progressive incurable and degenerative disease... at least for now. If we can maintain contact, there is a greater possibility of success with research and benefits we will all enjoy. WPC connects researchers, specialists, Advocates, activists and patients, working together for a common goal.
Look at all the giants upon whose shoulders we stand! There are heroes in our midst to have donated their brains to science so that we might have a better life and we can do same for the next generations in various ways. Many have sacrificed to attend these congresses, and it was their presence that made all the difference.
What matters most is connection To repeat Dr. Mischley's conclusion that the single most deciding factor in the progression of this disease is whether or not a patient answers yes to the question, "Are you lonely?"
PWP need time alone to reflect and restore easily depleted reserves. Our private cave begins to look comfortable and safe. People can disappear, and may choose to if they feel beaten by a society that remains unforgiving and willfully ignorant. If every interaction you have in a day includes someone who thinks you're drunk, it's discouraging.
In these challenges, we are nothing without one another. I am no different than anyone I used to know, except that in every moment I am humbled by this uninvited guest, this creeping occupation of my body. Though I maintain dominion over my soul and feel whole, waves of grief might drag me under at any time. This is caused by disconnection during a time of such constant loss.
To isolate or allow our condition to diminish and silence us is to ensure the progression of this cruel and unusual punishment. Of course we are not paying any karmic debt, and we didn't do anything to invite this nightmarish condition, but it sure feels that way.
Though the path of least resistance is the one that causes the most pain- it would be much easier to isolate and stay out of treacherous public places. Don't do this- you have to keep moving to stay alive.
We will not go quietly into that gentle night! We may have Parkinson's, and we may temporarily give in to our individual anxieties or bouts of depression and the relentless fatigue, but this is the part that matters most, where we get to take turns carrying one another.
Today I might have energy and feel strong, so you can lean on me. (Not really, I might fall!) Tomorrow I might not be able to move and this will terrify me and I might need to see your face to remind me it can be done.
In spite of physical and cognitive and financial challenges, and from locations around the world we did our best to manage our energies. There is never enough time and I missed many goodbyes. I've never been good at goodbyes anyway.
I returned from Kyoto with walking pneumonia, and it has taken a while for me to feel OK again, because every illness in a system with Parkinson's gets magnified, but the connections and conversations and content of the Congress was worth it.
The WPC informs more options in my own care, and it cracks the larger world open for all. Pulling the lens back so that you can see everything and everyone from a more universal and life affirming perspective is pretty cool.
I can't wait to see our tribe again! We are interconnected and interdependent in many ways, and the Congress provides a powerful platform that's easy to use.
I'll meet you in Barcelona! I know a place we can go to dance. Maybe you can do the robot and I'll do the twist.
Heather Kennedy (aka Kathleen Kiddo) presented at the 5th World Parkinson Congress and served as a WPC Blogger Partner. She is a motivational speaker, writer, visual artist, and mother of two. After many years of misdiagnosis and a disorienting amount of chaos, she was finally diagnosed with Parkinson’s in 2012. She has been interviewed by Michaela Pereira on the on the Los Angeles-based HLN/CNN network show MichaeLA and starred in several Parkinson’s videos which she co-produced with Anders M. Leines, including “Dating With Parkinsons” and “Anger.” In March 2018 she was profiled as a featured blogger by the international magazine Parkinson’s Life and is an active supporter of Davis Phinney, MJFF, and an administrator on several online sites.
Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®