LOVE come, destroy me. Make me nothing, again. This body has become such a burden and my endurance and patience are wearing thin. I used to feel more at ease here, but I can’t tell where my body ends and yours begins. Ending a relationship is an excruciating experience- the 2 AM heart palpitations and lack of appetite are just the tip of that iceberg.
The impact this particular kind of death has upon anyone suffering from a disease is more intense because we are already being pulverized by grief and loss. We are already isolated and alone. I kneel outside the church of love and plead for my life, for your life, and for mercy. Will you recognize me? Release me from this terrible infinite ache and please let me in. I’ve traveled so far just to rest my head upon your chest.
Living with Parkinson’s, my fear of being a burden is far greater than my fear of being hurt.
There will always be the glittering prize of someone easier, richer, hipper, prettier, younger… healthier, but this exploration is one of intimacy and real love, not perfection or convenience. I have no intention of pulling someone off a barstool at this point in my life, not because there is anything wrong with that but because pure hedonism is boring and predictable. Like dried parsley, it has no taste and may as well be confetti. Messy, useless, and painfully short-lived as our dizzy libido gets drunk on itself ...until things get real.
When we fall in love someone, we tend to want to know if they will love us back. And not only love us, but love us even when our lives get complicated, because they will.
Look at this old wound! Do you still love me?
I am filled with imperfections.
Care for a terrible bit of history?
How about when I do the ugly cry thing?
My closets are a disaster.
Wow, you really do love me!
Imagine the possibilities if we could love ourselves unconditionally. I used to be with someone who was focused on silencing and changing me into a version of a woman I am definitely not. It took me a while to realize how much I had compromised and given in order to fit into someone else's warped idea of the perfect representative for his "personal brand". He must have been terribly disappointed that he caught a wild woman, a feminist and a passionate artist who lives outside the box. Then I met someone who accepted me as I am, with a few glitches along the way. The endless pathways to the church of love are worth the treachery and confusion, but this is how meet ourselves in our rawest, purest and most authentic forms. True love is not particularly pretty and rarely convenient. The mystical and abiding love I seek is not an illusion, yet it remains just outside my grasp when I am not grounded in a practice of acceptance.
We all have work to do in the church of love.
Life is complicated and frenetically busy. Likely you have never met someone who doesn’t occasionally express a sense of overwhelm. We fight our own reality much of the time. In our relationships, feelings get trampled in the chaos of opposite schedules and we are pulled apart by outside influences that are not only invasive, but incapable of comprehending our situation. This is especially true for those of us who are judged because of chronic conditions that do not show. We only harm one another with such ignorance.
Nothing compares to the pain of heartache. If you meet someone who handles it skillfully, would you please send them my way? I have a few questions! Our partners don’t break our hearts, but they always manage to crush expectations. When we don’t get what we really want (so badly!) we turn into tall children and take turns whining and bickering, until we manage our own pain.
Exposed and further humiliated by prying eyes, I go inside to ask God and wise elders for council and some form of shelter. They offer no solution, but they hold a lamp up, with just enough light for me to find the path once more. I am Persephone and Hades, Zeus and Aphrodite in a single day, and do not have time to await a hero. There is no escape or distraction from this journey we must each make alone.
It’s difficult to love fully and selflessly unless we are whole and embodying a practice… or at least hungry on our path of self-inquiry. How can one be “whole” as she is dismantled while in the vice grip of Parkinson’s? The challenges of Parkinson’s demand that I take responsibility for my own healthcare, but it isn’t always a smooth process because I have other responsibilities, just like anyone else.
I have incorrectly assumed educated adults can discern the symptoms of Parkinson’s from my personality. It’s not easy to parcel and separate the two, even for neuroscientists, therapists, neurologists and caregivers. Understanding a brain condition without having one is the equivalent of researching a country vs. living in that country. A partner can only understand if they are incredibly compassionate, trusting and patient. This is a lot to ask of anyone, and can easily knock a relationship off balance. Disaster and chaos do not occur in a vacuum, they show up just as the sky is falling and the wheels come off.
Sometimes the meds hit correctly and on time, and that is when we dance and sing (or whatever gives us juice!) PwP make the most of “on times” it because they are increasingly rare. A good friend just reminded me that today is his best day, and that tomorrow will be his new best day. We know what lies ahead, and carry on. “Off times” are filled with internal and external tremors, dystonia, relentless insomnia, digestion problems, bradykinesia and brain fog. Imagine feeling temporarily released from these burdens. Of course I want a drink and wild dancing! Yeehaw! If I can MOVE with fluidity and relative ease, I am elated!
I long for a partner who fully understands this situation, although must be maddening to attempt making plans with someone who endures constantly shifting levels of capability. Of course it’s frustrating for everyone involved! Parkinson’s sucks. I tend to hide when I am not well, so people only see me when I am pulled together and feeling OK. Why would it be shocking to witness someone articulate and in an awareness practice behaving from such an unconscious state? Two words: chronic pain. PwP are getting beat up by an opponent invisible to most in a ring we are forced to enter every day of our lives. When you are getting hit from all sides, I challenge you to keep your composure.
I am grateful when a loving friend steps in and helps instead of judging. We can all take turns being in service and it feels good to be helpful to those we care about. Sometimes we can be close to someone and still not see them clearly or have the ability to give them what they need. PwP aren't needy, but we may be in shock from the way our bodies suddenly change. Imagine reaching out for your dinner utensils and not being able to gracefully bring food to your mouth or rushing to get dressed for an event, but suddenly you can barely tie your own shoes. When you arrive your partner let's you know they are more than inconvenienced by your tardiness. They just don't understand, so you apologize knowing all you can do is practice gross overcompensation for this unpredictable lack of fine motor skills.
It is not necessary to be a caregiver if you are partnering with someone who has Parkinson's or another progressive disease. It is imperative that you are capable of trusting each other so that when symptoms arise, they are not taken personally or punished. Fear kills relationships. It is impossible to be with someone who is fearful, because managing a neurologic condition requires too much energy to manage. No one can successfully manage symptoms and therapies and medications if forced to constantly reassure a nervous or mistrustful partner. It's the equivalent of stopping every mile during an Ironman event to explain your process. You'll never make it. Perhaps we should all make checklists of our needs BEFORE the first kiss. How "unmagical" and unromantic is that?
Chronic pain is something I squirm to avoid- it also wrecks plans about half the time. With an open heart I ask for forgiveness, but also consideration for the difference between willingness and capacity. Mistaking the person for the disease is the most painful thing to do. Usually the partner is just caught up in their own world, forgetting what it means to live with the uncertainty our bodies may simply say, “Nope, not today!”
A young girl with knobby knees and tangled hair is tugging at my purple robe. She is asking for one thing: to be seen. I have looked through her all these years, thinking she was OK without my affections and now she is starving and angry. Her fears of abandonment are not imagined as I have left this body too often in the aftermath of betrayals and losses. We leave ourselves and temporarily disconnect from our bodies when the pain is too much.
How do you cope when your pain gets intense?
“Do no harm” is easier said than done when our coping mechanisms disappear. Insomnia and disease dismantle even the fiercest and most evolved love warriors. Your pain, our pain, my pain- it’s all the same circle of life. Let yourself be a release from your pain, because looking for it “out there” is a lesson in futility guaranteed to disappoint.
I want to sleep for a year. I'm kinda hoping someone will magically appear to deliver me to some remote beach with a breeze tickling our necks and we sip spritzers and groove to music. Only rule: no screens please. Text and social media be damned! Humans are insatiable creatures, but we can only allow ourselves to be exactly who we are in every moment if we can stay awake and not check out- even when pain becomes intense. If you can’t do this for yourself, do it for someone you love.
The world drops away until I can see my love clearly penetrating all the veils and layers I’ve spent a lifetime hiding. Love is never a burden, yet it continually exposes us in torturous ways. There is no place to hide and that is such a gift! How excruciatingly beautiful is an opportunity to care so deeply about another being! It is the closest to divinity we can be- loving and in service.
Parkinson’s may challenge our senses and befuddle our intimates, but LOVE is the most powerful force in the Universe. May we all be free to love divinely, fully and without fear, in spite of our humanness.
A playlist with some love tunes, for your listening pleasure: