Jim Stanicki: An Online Inspiration on Dying Well

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Jim Stanicki is at a party, where he's having a great time with his family and friends. But when it's time to go, he says he has to go, and his intention is to go well.

Stanicki says it is his life that is the party.

After being diagnosed with bronchoalveolar cancer almost four years ago, Stanicki has shared the highs and lows of his journey with friends online through Inspire.com, a health and wellness social network that covers a wide range of health conditions, diseases, and topics.

For years, Stanicki, 60, a former software developer from Denmark, Maine, said his body was a battleground in the war on cancer. After years of treatments and little success, he said he had enough.

"I realized that, for me, a day living on chemo is a day I'm not living," said Stanicki. "I'd rather walk outside, live a life, and breathe the air for as long as I can."

Stanicki took the option of palliative care.

And since his decision, Stanicki said he feels good most of the time. He is able to enjoy life again and share his experience with the Inspire community, where he has become a voice of reason, comfort and wisdom, particularly for other lung cancer patients and those going through their end-of-life experience.

Stanicki's journey began in January 2007, when he went to the doctor for an X-ray and Stanicki, a former smoker, was diagnosed with bronchoalveolar cancer, a type of non-small cell lung cancer that normally affects non-smokers, Asians, and women. Often known as the "mystery" lung cancer, Stanicki's doctors were perplexed by his results.

Upon hearing his diagnosis, he naturally did what everyone else would do: He Googled.

In the process of surfing the Internet for treatments and explanations, Stanicki came upon Inspire.com. With more than 150,000 members, Inspire.com attracts people from all over the globe who have been diagnosed with a variety of illnesses.

And so, Stanicki found people online who had received similar lung cancer diagnoses. He began discussing his string of chemotherapy and radiation treatments with other members.

"On Inspire, we really understand each other at a level that only people suffering that way would," said Stanicki. "It is a human, not cultural, connection. It is a shared experience that is very powerful."

Jim Stanicki with his wife Leslie.

Then, in February 2010, Stanicki was supposed to have surgery to remove his tumor-stricken right lung.

In a post, Stanicki wrote, "Driving to the hospital for my lung removal, I decided on my new name, Jimmy One Lung."

Doctors opened Stanicki's chest to remove his lung, only to find that doctors had been premature in their plans; the surgery was found to be too risky for Stanicki. Doctors closed him back up with the lung still in place.

"So I had all the fun of lung surgery and I get to keep my tumor filled lung," Stanicki wrote on Inspire after leaving the hospital. "I just can't wait for my next lung cancer adventure."

In response, one Inspire member posted, "I just hate it that you had to go through all the surgery and stuff. You didn't lose your sense of humor, thank God!!"

Another person wrote: "[You] just have to find another way! You are too important to this site!'

An End to the Battle

Kimberly Van Haitsma, a clinical health psychologist at the Polisher Research Institute in North Wales, Pa., said that patients who make the personal decision for palliative care often become the source of support to others facing the same challenges.

"What is different now, given the advent of social media mechanisms, is the use of social media as a means of providing such support," said Van Haitsma. "Of course, the number of potential persons that any given individual may touch in this new medium is also greatly enhanced."

Stanicki said his end-of-life experience hasn't been as difficult for him as it seems to be for other people.

"Reasoned logic seems to work for me," Stanicki said. "What's behind you is behind you and what's in the future is doubtful."

"Don't get me wrong, I'm open for a chance to get better," Stanicki said. "In case anyone's listening, I just want to say that I'm willing to go with that if they want to heal me."

But the reality is that Stanicki, his wife and children are getting ready for his death. No one pretends that it isn't going to happen.

And in turn, Stanicki, who describes himself as an ordinary man, has turned to helping others.

"You're living burden-free, and that's a real gift if you're able to look at it in that way," he said. "I try to tell people that this can really make life delightful."

When End-of-Life Care Starts

According to the National Cancer Institute, end-of-life care begins when a patient's health care team determines that the cancer can no longer be controlled. Testing and treatments stop, and the focus turns to keeping the patient as comfortable as possible.

Nancy Hodgson, a research scientist at the Jefferson Center for Applied Research on Aging and Health, said Stanicki reminds her of Randy Pausch, a Carnegie Mellon professor of computer science and human-computer interaction. He was best known for his "Last Lecture: Really Achieving Your Childhood Dreams."

After learning that he was dying of pancreatic cancer, Pausch encouraged people to live the lives they imagined for themselves.

"[Pausch was] someone who eloquently was able to nurture and comfort others in the face of his own death," said Hodgson. "In our palliative care practice, we commonly see individuals who are facing their own mortality take on the role of the nurturer."

Much like Pausch, Stanicki discusses his end-of-life experiences with ease to his Inspire friends. He continues to post discussions with a William Carlos Williams-type of poetic sparseness.

On Sunday, November 14, he posted a note titled "Enjoying the end of life experience:"

"I had a great day today/ I realized I am enjoying my End of life experience/ I am one fortunate fella/ I just abandon any expectations/ And enjoy all that is."

The Power of Social Media

Danielle Leach, Inspire's director of Partnership, said that she is not surprised that a person like Stanicki has taken on the nurturing role.

"Jim is talking about tough stuff on the website, and it really provides an outlet for these patients and caregivers that maybe can't communicate the same thing with their families," said Leach. "These communities create powerful meaningful connections for practical stuff that people are dealing with."

Leach said social networks and forums have leaders and followers, just like any other community. There are people like Stanicki all over the Inspire website.

Hodgson said that, in developmental psychology terms, these discussion boards allow people come to terms with death by fostering their integrity.

"These sites provide a forum for a person to share their wisdom with others, and this in turn allows them to a reach a level of 'detached concern' with life in the face of death," said Hodgson.

Having worked as a software developer for many years, Stanicki also understands the importance and effect of social networks.

"I think the greatest thing that computers and Internet and communications have done is remove the geography problem from people communicating with each other," Stanicki said. "Most of the time, more than anything people want to do is communicate, and this gives a way for other people to get that communication, support and sharing."

Now, Stanicki encourages his Inspire friends to appreciate nature and be sure to breathe some fresh air. His days are filled biking with friends on bluebird days, puttering around his 10 acres of land in Maine, baking bread and not keeping a schedule.

Online Sharing Can Lead to Acceptance

But any way you shake it, most people would plainly say that dying is scary. It is, he said, no question.

After reacting flippantly to his diagnosis, Stanicki, a man of reason and not too much faith, said he allowed himself to look at his disease for what it was. He looked at it until he cried.

"It's hard to accept something and not be defeated by it," said Stanicki.

But he has done just that.

On Tuesday, Nov. 16, Stanicki wrote a post titled, "When does the end of life experience begin?"

He wrote, "I can no longer put things off. I no longer can save it for later. Everything I mean to accomplish needs to happen soon. Everything I want to say must be said now."

In response to his post, one Inspire member wrote: "Jim...every post of yours I've read I've enjoyed...two words or two sentences...always right to the point...I hope to continue reading you and enjoying you...thank you."

Another person wrote: "Jim- You are one amazing man and I can see why you are so loved on here. God bless you!"

Sandy Kintz, an Inspire member who often contributes to the lung cancer group, was alarmed to see Stanicki's end-of-life posts.

"I sent him a private message just asking what was going on, if he was OK," said Kintz, who was diagnosed with non-small cell lung cancer six years ago. "It's always hard to lose someone on the site, so I was worried when he started writing that."

Kintz and Stanicki have never met in person, but Kintz said that many people look after one another as if they're old friends. When a member dies, the others grieve the loss of that person, just as any friend would. The members often have candlelight vigils in their memory.

Worries aside, Stanicki said it makes him happy to know that his words offer rays of hope.

"People say I've really helped them deal with the idea of dying and their demise," continued Stanicki. "Nothing feels better than hearing, 'you've made this easier for me.' "

"As it turns out, my life's calling is dying," he said. "It's a hell of a thing, isn't it?"

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