There are songs you listen to because you like the music, and then there are songs that change meaning after life beats the hell out of you for a few decades.

George Michael’s “Don’t Let the Sun Go Down on Me” is one of those songs for me.

On the surface, it is about a relationship falling apart. It is about someone trying to hold on while feeling misunderstood, pushed away and slowly erased. But after living with Parkinson’s for roughly 35 years, I hear something different in it. I hear the voice of someone saying, “I am still here. Do not stop seeing me just because I am harder to recognize.”

That is Parkinson’s in a sentence.

Parkinson’s does not always take everything at once. Most of the time, it steals in pieces. A little movement. A little independence. Some confidence. A career. A marriage. A social life. The ability to get out of a chair without conducting a private negotiation with your own legs.

Nothing dramatic enough for the movie trailer. Just a thousand small losses that eventually add up to a life you barely recognize.

The sun does not suddenly disappear. It goes down slowly.

One of the hardest things about Parkinson’s is that the outside of my body has spent years lying about what is happening inside my head.

My face may look blank when I am listening carefully. My voice may be soft when I feel strongly. My body may freeze while my mind is already halfway across the room. I may look disconnected when I am actually exhausted from trying to make my nervous system do something most people accomplish without thinking.

People judge what they see. I understand that. The problem is that Parkinson’s changes the evidence.

I have looked drunk when I was completely sober. I have looked uninterested when I cared deeply. I have looked confused when I understood everything being said. I have looked weak when I was using every bit of strength I had just to stay upright.

There were times in court when people questioned whether I was on drugs because of the way I moved. I was a lawyer. I was trying to do my job while my body was running its own side business making me look guilty.

That is the part people do not always understand. Parkinson’s does not just affect how I move. It affects how the world reads me.

The song speaks to that feeling. It sounds like someone asking not to be judged entirely by the version of himself other people can see.

When I was first diagnosed during my second year of law school, I did not understand how much of my life would eventually revolve around Parkinson’s.

At first, it was about walking differently. Then it became medication timing, fatigue, stiffness, falls, freezing, dyskinesia and trying to predict what my body might do an hour from now.

Eventually, everything had to be planned around it.

Going to dinner was not simply going to dinner. I had to think about medication timing, how far I would need to walk, whether there were stairs, how long I might have to sit, whether I could get back up and whether the restaurant staff would assume I had been overserved before I even ordered.

Travel became a military operation. Getting dressed became an event. Walking across a parking lot could feel like crossing Nebraska with worse scenery.

People saw me cancel plans. They did not always see the calculation behind it. They did not see how much energy it took to do something simple or how humiliating it could be to lose control of my body in public.

That is how life gets smaller. Not because I stopped wanting to live, but because every ordinary activity started charging an admission fee.

Parkinson’s is usually described as a movement disorder, which is true in the same way that a hurricane is a weather event. Technically accurate, but it leaves out quite a bit.

Movement is simply the part people notice.

Parkinson’s also affects mood, motivation, sleep, attention, processing speed, judgment and the ability to initiate action. It can make you want to do something while removing the neurological signal required to begin.

Apathy has been one of the most difficult parts of this disease for me. It is not exactly depression, and it is not laziness. It is more like the connection between wanting and doing has been cut.

I can know what needs to be done. I can understand why it matters. I can even be annoyed with myself for not doing it, and still sit there like someone unplugged the starter motor.

That is apathy. Parkinson’s in sweatpants.

People may see inactivity and assume I have quit. They may hear less from me and assume I no longer care. They may watch me withdraw and assume I want to be left alone.

Sometimes I do want to be left alone. I am still human.

But sometimes silence is not surrender. Sometimes silence is exhaustion. Sometimes it is depression. Sometimes it is a brain that no longer starts on command.

“Don’t let the sun go down on me” can sound like a plea not to let that darkness become permanent.

There is a difference between asking for help and asking to be rescued.

I have never wanted pity. Pity makes people feel generous while quietly lowering their expectations of you. They stop seeing what you can still do and begin defining you by what you cannot.

I do not need anyone to tell me how brave I am for getting dressed. Some days I am not brave. Some days I am just late.

What I need is for people to see me accurately.

Do not talk to me like I am a child because my speech is slower. Do not assume my mind is gone because my body hesitates. Do not decide I am unhappy because I live differently than you do.

Help me when I need help, but do not take over my life in the name of helping.

Walk beside me, not in front of me. Do not grab me without warning. Do not turn my disability into your opportunity to feel heroic.

Support is useful. Control disguised as support is still control.

The message I hear in the song is not “save me.” It is “do not abandon me inside something I did not choose.”

Parkinson’s does not only affect the person diagnosed. It enters relationships, marriages, families and bedrooms without knocking.

It changes roles. A partner can become a caregiver. Romance can become mixed with medication schedules, mobility problems, sleep disruption and medical appointments.

Nothing says raw passion quite like checking whether the pump site is infected before dinner.

The real danger is not only that someone might leave. Sometimes the greater fear is that they stay physically present but stop seeing you as a man, a woman, a partner or a full human being.

They begin caring for the disease instead of relating to the person.

That is its own kind of loss.

I do not want to be admired from a distance as some noble Parkinson’s warrior. I want to be loved, challenged, laughed with, argued with and occasionally told I am being an ass.

That is normal human connection. Disability should not cancel it.

Real intimacy is not pretending Parkinson’s is not there. It is refusing to let Parkinson’s become the only thing in the room.

I am not going to lie and say Parkinson’s made me better in every way. Some of the things it took were never returned.

It affected my law career. It affected my marriage. It affected how I raised my children, how I worked, how I traveled and how I saw myself.

It gave me years of falls, dyskinesia, medication failures, surgery, depression and one hell of a complicated relationship with dopamine.

There is no inspirational bow to tie around that.

But Parkinson’s did not erase me.

I am still the same person who fought through law school after being diagnosed. I am still the father who raised two children. I am still the lawyer who stood in court while his body made him look like he had been drinking behind the courthouse.

I am still sarcastic. Still stubborn. Still capable of making bad decisions without Parkinson’s taking all the credit.

Vyalev has given me back movement I thought was gone. My DBS is off. The falls, freezing and OFF time that controlled my life have, for now, largely disappeared.

But even before that happened, I was still here.

That matters.

A treatment may improve the body, but my worth was never supposed to depend on how well I walked.

This is where the song hits hardest.

People sometimes begin mourning someone with a progressive illness long before that person is gone. They speak about who he used to be. They lower expectations. They assume the important chapters are over.

I reject that completely.

Do not turn me into a memory while I am still making new ones.

Do not talk about the old Richie as though the current version is some damaged replacement part.

I am different. Of course I am different. Thirty-five years of Parkinson’s will do that. So will age, divorce, parenthood, loss, survival and spending too many years dealing with insurance companies.

Different does not mean gone.

The person I was is still part of me, but I am not required to spend the rest of my life trying to become him again.

I am allowed to be who I am now.

When I hear George Michael sing “Don’t Let the Sun Go Down on Me,” I hear more than heartbreak.

I hear every person with Parkinson’s who has been overlooked because speaking took too long.

I hear every patient whose symptoms were mistaken for weakness, intoxication, stupidity or surrender.

I hear every spouse who misses the person sitting beside them because the disease has changed the way that person communicates.

I hear the fear of becoming invisible while still being physically present.

Most of all, I hear a request.

Do not pretend Parkinson’s is not real. Do not hand me slogans. Do not tell me everything will be okay when neither of us knows that.

Just do not look away.

See me when my face does not cooperate. Listen when my voice gets quiet. Give me time when my body falls behind. Laugh with me without laughing at me, unless the joke is genuinely funny, in which case I probably deserve it.

I am not asking anyone to stop the sun.

I am asking them to remember that I am still standing in the light.

They can call me disabled.

They can call me difficult.

They can definitely call me stubborn.

Just do not call me done.

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