Come Out, Come Out, Wherever You Are

The Orlando Sentinel recently ran a story about a young man with Parkinson’s (Todd Stewart, who works for the Sentinel).  Todd pretty much kept his diagnosis a secret for six years.  He found the prospect of telling people he had the disease more terrifying than how he felt six years earlier when three little words from his neurologist (“You have Parkinson’s”) turned his life inside out.  However, he finally decided to inform the world, and in a big way:  He invited 25 people to a brunch, and over some heavy-duty Bloody Marys, he announced to one and all that he has PD.  The coming-out session was videotaped, too – you can see it if you click here.

The article has a great quote from Dr. Rachel Dolhun, a Movement Disorder Specialist and the Vice President of Medical Communications at the Michael J. Fox Foundation:

“When you take away the secrecy and you allow yourself to participate in the community and connect with people on a broader and more open level, you start to see how those connections allow you to live so much better with Parkinson’s,” she said.

In other words, your life may well improve after you out yourself.  And the opposite (that is, constantly hiding your status) may have negative consequences.

I’ve written before about coming out as a Parkie (click!  click!  click!, click!).  On the one hand, I don’t think it’s a good idea if it costs you your job.  For example, one man who ran his own business started losing clients after he told everyone (click!– read the paragraph about Rick Seaman).  But aside from that, I think telling people you have PD puts you in a stronger position – it puts you, not the disease, in control, and it allows you to relax.  And if every person with PD came out, it would create greater awareness of the disease and show the population at large that many Parkies live relatively normal lives:  they work jobs, they raise families, they contribute to their communities, they compete in two-mile open water swim races in the ocean (well, at least I did – click!), they run marathons (click!, click!, click!), they play musical instruments (click!), they write books and articles (click!, click!, click!).  They carry on with their lives and participate in society in myriad ways.

Coming out also allows you to develop a keen sense of when someone senilicizes you.  “Senilicize” is a term I came up with; it’s the opposite of “infantilize.”  If “infantilize” means “to reduce (a person) to the state or status of an infant” or “to treat a person like a child” (thanks, Wiktionary!), “senilicize” occurs when someone treats you as if you’re senile, feeble, feeble-minded, gaga.  Even though you aren’t.

I became aware of this phenomenon shortly after I received my own diagnosis.  I started going for physical therapy at a large physical therapy center whose clients tended to be either senior citizens such as myself, or high school athletes who were recovering from injuries on the playing field.  The staff at this place were mostly young adults in their twenties, and they had two ways of interacting with the clientele.  If a high school athlete walked in, the staff talked to the person as if he/she were one of them.  It was all “Hey there, what’s up?  How’s the leg?  Let’s get started.”

But when an elderly client walked in the door, many on the staff spoke to the person the same way you’d speak to a baby or a dog:  They raised the pitch of their voice, sometimes to the point of baby talk.  They ended many of their sentences with “OK” (with rising intonation:  “We’re going to do some exercises with your leg, OK?”) and they often told the elderly clients to just sit in a chair and rest for a while, and then they’d leave the client sitting for fifteen minutes.

Here’s another example of a Parkie being “senilicized”; a reader on my blog wrote this comment at the bottom of one of my recent blog posts (click!):

It has been 4 years since my official diagnosis and, other than doctors and others with a need to know, I have told only a few close friends and family members. My sister is my biggest supporter but also the one person who seemed to suddenly assume that I was no longer able to do the things I was doing minutes before I told her. When we travel, she states she will send her husband to help with my luggage when no help is needed. I have asked her to wait until I ask for help, but she hasn’t remembered this request. When my symptoms become more visible, will others also discount my abilities? Will they hesitate to include me in activities, thinking I am no longer able? I expect that I will be self-conscious and, therefore, reluctant to go out in public as often.

The final sentence (“I expect that I will be self-conscious and, therefore, reluctant to go out in public as often”) points out a dangerous rut some Parkies may find themselves in:  they get irritated either because they need help with some task (say, buttoning a shirt), or because some other person tries to help when no help is needed (as my reader related in her comment), making the Parkie feel useless and/or aggravated.  Either way the result could be the same:  the Parkie stays home more and more.  Unfortunately, this is exactly what Parkies should not do, as it can exacerbate their physical and mental problems.

To my mind, the advantages of coming out as a Parkie far outweigh the disadvantages.  It puts you in control, and it allows you to sharpen your hogwash-detecto-meter.  However, you also need to be proud of who and what you are, maintaining your sense of self-worth.

Of course, as a gay person, I came out through much the same process.  I lived for years in the closet as a high school student and young adult, keeping my sexual orientation a secret, having girlfriends just to show that I was normal, sitting silently when I was in a group and somebody made a fag joke or spoke disparagingly about homosexuals.  Once I came out, however, that all changed.  Instead of me feeling uncomfortable hiding my secret when I was in a group that included homophobes, now the homophobes were uncomfortable having to watch what they said around me.  I had the power.

And there were distinct advantages.  Because I was completely out at graduate school, the administration asked me to serve on university committees that were dealing with AIDS and gay issues.  I attended meetings with the college president and with newspaper reporters.  I helped win the right for gay couples to apply for married student housing at my school, years before New York State ratified gay marriage.  Finally, I felt free to write about gay issues in the courses I took, and one of my gay-related term papers was published in a popular magazine (I earned $150 for that!).

So I encourage almost everyone to out themselves about having PD (and about being LBGTQ, if that’s the case, too).  I am reminded of the words of Harvey Milk, the gay politician in San Francisco, who, back in the 1970s, urged everyone to come out:

On this anniversary of Stonewall [the three days of gay rights protests and riots in New York City in 1968], I ask my gay sisters and brothers to make the commitment to fight. For themselves, for their freedom, for their country … We will not win our rights by staying quietly in our closets … We are coming out to fight the lies, the myths, the distortions. We are coming out to tell the truths about gays, for I am tired of the conspiracy of silence, so I’m going to talk about it. And I want you to talk about it. You must come out. Come out to your parents, your relatives.

I’ll add:  Come out to practically everyone.  And stand proud and tall!

To close this post, here’s what the Orlando Sentinel’s Todd Stewart says at the end of his video, after he’s told everyone he has PD and resumed his life:

It really went as well as I could have hoped for.   The support system around me grew exponentially.  And my workplace was more than accommodating.  More than anything, I got to release the burden I had carried for more than six years.  I have Parkinson’s.  There, I’ve said it.  It’s out there.  And now you know.

Update:  Click here to download a PDF booklet by the Fox Foundation about coming out in the workplace:  Sharing Your PD Diagnosis at Work