When you are alone with nothing to occupy your fidgeting hands and busy mind, love comes to perch like finches pecking at your shoulders and earlobes. Shoo them away if they try to nest in your hair, but be sure to partake in their vital song over the constant din and chaos. After another restless night when your legs tangle and tremor in sheets damp from sweat, you may need to hear their song as a reminder. In their melodies there are answers. This may surprise you, with all that armor surrounding your fragile heart against potential intruders.
This is going to hurt like hell no matter what you do. Love does not exist for your security, no. On the contrary, it barges in, gallops around crashing into, and usually shattering, all your careful plans and organized possessions that you have been holding onto for so long. Your plans and ideal scenarios… reduced to rubble. Ego burns away revealing an uncomfortable vulnerability, and before you have time to tidy up, hide or perfect anything, you’re all in.
No one is prepared for love’s fluid alchemy.
This does not necessarily refer only to romantic or desirous love, as juicy and life-affirming and tantalizingly seductive as it may sound. Love can also mean that moment your heart cracks wide open, like when your warm newborn is laid on your overworked belly. The first time you see a tiny nose breathing, eyes learning to open, a quivering lip. The miracle of life! Moments ago this human being was inside your throbbing womb, being squished through a cervix dilated at least ten times its normal size. The sacred work of birth is an agony you’ll soon forget.
I know no love as fierce as the first time I heard my baby’s cry.
Though not everyone experiences birth (or death) in the same way. The same tiny hand that squeezes a mother’s pinky, must let go of everything in the end. We have a limited picture of death. It is something far away and happens to other people. How tragic, we say. We pay respects directly, but much too late because the dead don’t care. We grasp one another at the edge of dusty graves so deep and wide that we are afraid to fall in, blurred by grief that never really goes away… because we loved.
Everything must go. This is the paradox of love. We aim to make it last forever, yet we only have a limited “now”. We pine away for that glorious someday when we recognize our ideal partner’s eyes across a crowded room… or by swiping right?
Or is it left?
I give up on making sense of online dating, even from a vantage point in the nosebleed section of that particular auditorium. When we are too young to know better, we crush our bodies against anyone who seems to love us back, making promises to virtual strangers in a vain effort to escape our own limitations or feel less alone in our skin. We may try promiscuous acts or find other ways to cope with the burden of being alive. We think this is the answer. It is certainly not.
We should be promising ourselves we won’t leave our own bodies, but instead we demand loyalty from others. When it’s sodas and sweaters and sharing hot peanut-butter fudge sundaes we get caught in the feel-good times. What about the harsher times, the brutal moments of shocking disconnect from one we thought knew us so well? Are we having fun yet... and who are you?
Let’s toss in a bit of financial hardship, postpartum depression, an overbearing in-law or meddlesome friends. Work, weddings, funerals, errands and constant upkeep of hearth and schedule alike. All the random obligatory shit that makes up a life is exhausting enough in healthy times, with coping mechanisms securely in place. Babies, toddlers and teens, oh my!
The question is about how well we love, not what we are willing to tolerate to get love.
Enter human behavior: The most confounding and bizarre experience you may ever encounter. This includes your own patterns and dysfunctions and the fact that you may feel unworthy. Now add a disease, chronic pain, hospital stays, anxiety and depression. They may not even be your own, but a family member’s - or a partner’s neighbor. Who would sign up for that racket? Simply put: we have no control.
When I was diagnosed with a progressive incurable brain disease I got demolished. Shaking my insignificant fist at the sky until “I” died- or at least the part of me that is resistant to death. That was the easy part. It was watching everyone close to me suffer that killed me. My own body, the mothership was betraying us all. Disillusionment complete. Now what?
To start:
Multifarious vials of pills, diets, workouts, patches, tinctures, powders, rubs, and all kinds of meds, from pharma to farm. The healers, therapists, psychics, energy workers and everything from prayer to a higher entity to a cleanse from hell. Research and modification, readjusting and rescheduling, explanations and abundant devices, inflated costs, missed opportunities. Upside down legs and wobbly heads.
What happened to my hands and where is my mind?
Living with disease is exhausting! And not just for the person with the condition. The partner is called upon. Sometimes reluctantly, possibly resentfully, to be an extraordinary superhero of infinitely divine patience, compassion and understanding. Who also can be your substitute you. Pick up the kids. Do the laundry. Take the dog to the vet. How unrealistic! It is more than a challenge to be in partnership with someone who is chronically ill. Like Parkinson’s itself, even with hyper-vigilance, caregiving means handling something jaggy and wildly unpredictable. And most unwelcome.
I’m concerned about becoming a burden. Some days, I can barely get out of bed or move around prior to noon. This ruins my ability to make plans, with anyone. Other days I can dance into the wee hours of the morning. Who wouldn’t take full advantage of the latter? Carpe Diem! Yet, there have been dark times when it might be easier to die rather than suffer one more string of endless agonies, compliments of my impaired central nervous system. A life of imbalance and unpredictability.
Can I get an electrician in here please? My loved ones are tolerant, but I’m fairly certain most of them will take off if they must endure another, “The meds aren’t kicking in,” or “Sorry I’m late, I had a little trouble with my hands,” or “Can you help me?”
I really hate that last one. Asking for help is just unendurable after a lifetime of extreme independence and a formerly healthy ease with any and all physical endeavors and most mental challenges. It’s completely humiliating. I’d rather crawl than inconvenience anyone.
Oh Parkinson’s, you are a trip! We sure are vocal community, stubbornly dedicated to a strong presence on social media, because it’s our primary database and occasional lifeline. The Parkinson’s community has a prevailing attitude of conquering and alleviating the symptoms, often using labels such as warrior or calling choices “inspiring!” We have no other choice but to keep going forward, keep moving and keep our heads up (literally- the disease forces the upper carriage to stoop forward as everything stiffens and tightens.)
Our partners or caregivers must endure the constant presence of a disease. It’s not fair to anyone, because people with Parkinson's (PwP) can’t follow a linear trajectory and nail a workout or prescription to master all effects of a progressive condition. The minute I get a bit comfortable, the sirens return and Parkinson’s snatches ease away to replace it with suffering. I don’t expect the general population to understand since only motor symptoms show. Despite our best efforts to practice self-care, chronic pain can make anyone appear pallid, drawn and hunted. We are being hunted!
Lest any of us create stories around the way people “leave” or desert, Parkinson’s is a pita, and if we do not keep it on a tight leash, it continues to nip at whoever is closest. This part is solely our job and not our partners. We must appreciate and cherish those who show loyalty and love they shoulder part of our burden by design. I am regularly humbled by love in action.
So, if you want to know about loving someone with Parkinson’s, or better yet- loving someone who stands with you in spite of the discomforts and terrors of such a third wheel in your relationship, there is no one-size-fits-all answer...only this:
Now is all we have. Love accordingly.
No one knows this more than a person who hears the words progressive and incurable simultaneously. So where do you begin?
Forgive everyone and show appreciation for those who care enough to try to comprehend such a complexity as a brain disease. Discern and communicate the difference between personality and what behavior may be due to your specific symptoms or side-effects. If we want to maintain relationships that matter, it is our JOB to learn how to listen to the needs of others and not become engulfed in the self-absorption of our obligatory maintenance.
This disease is not only high maintenance. It is painful, unrelenting and wildly unpredictable. It was the only thing that could bring the greatest fighter in the world to his knees. I have been disabused of any illusion that any of us suffer alone now that I have met hundreds, and interacted with thousands who manage to thrive with Parkinson’s. The WPC is the best party I’ve ever attended, though tragic to realize upon meeting everyone that there are growing numbers of PwP under 30.
I’ve yet to meet a “parkie” who is arrogant or overly-confidant. Even those of us who may appear to an untrained eye seriously vain and arrogant are actually throwing ourselves off the cliff for advocacy, a form of sacrifice on the unpopular but necessary altar of a cause greater than ourselves. Sure, we’ll take turns being poster-children for PD, a most unenviable position.
When I mention this is the last thing I wanted for my children, my now ex-husband, my friends or family or origin, and my lover, I mean it. With all my heart I wish for a cure, for them. They do not deserve to suffer so because someone they love has a body that is slowing becoming a cage. My kids need a Mom, not another challenge. My good days remain ahead of the curve… for now. But the only security we have is knowing that bad days are coming, too.
It takes an extraordinary being to persevere and work through the challenges of a brain disease.
So, go forth and love your people with all you’ve got! Remember to show up for them too, and give back. They are not with you out of pity, nor because you are in the bargain bin or damaged and unworthy. Parkinson’s cannot take our capacity to give and receive love away. We must love fearlessly and fiercely, like the newborn swaddled, with eyes open for the first time, gazing at our lover to say, “Thank you. Forgive me. I love you.”
We are all slowly falling apart, coming undone and learning to let go.
Wouldn’t it be lovely to maintain a soft and safe place to land for one another? I’ve seen and experienced LOVE and will not take advantage of such a miraculous gift.
I love you. No pressure, of course.
A playlist: imperfect love and other delights