• Do Not Go Gently Into that Goodnight

    Posted on July 11, 2011 by Lene Johansen in Blog.

    The last weeks have been about Niki and her family. There have been lots of tears, laughter, love, inspiration, more love, and trying to get things organized before her memorial services that were on Saturday. Tears, laughter, love, and inspiration was always available in abundance around Niki, who died on June 30. She was 38, and left behind two children, a husband, and a sister.

    Niki was already sick by the time I met her in 2009, right after we moved to Philadelphia. My fiancée belongs to a circle of Niki’s Philadelphia friends from her youth, and she had recently come back here because she knew that she would find some of the structure she needed to fight Caspar here.

    Caspar was the name she gave to her brain tumor. He was no friendly ghost either. She fought him for four years. She didn’t just fight Caspar, she fought all the other brain tumors in the world too. She would help other patients and their families get through the darkest hours of diagnosis, treatments, survival, and death, no matter how sick she was herself. She would make them laugh, make them think, arm them with knowledge, share her ever growing network of friends and experts, and help them use sledgehammers to tear down obstacles when that was necessary.

    In the middle of all this, she fought to get better herself. She fought to get access to treatments, to keep her family finances afloat, to find opportunities for her kids to be kids and not just attachments to her fight against Caspar, and to find opportunities to show Zachary, Devin, and her husband Chris how much she loved them. She would even find time for her friends to bring her buckets of fried chicken, which was one of the ways we could give her tokens of our support and love always.

    She will forever stand as a pure force of life in my imagination. She would get up and push on when she was knocked down. I don’t know all the details, but I do know that she was dealt enough knocks over the years to make some people give up and stay down. Awesome is the word that people who knew Niki use most frequently, and they mean awesome as in awe-inspiring. Niki will always be legendary in the minds of the people who knew her and the people she touched in one way or another in the brain cancer community.

    Niki had wild, curly hair. She started dying it in crazy colors after she got sick, so members of the online brain tumor community would be able to find her in the chaos of big convention centers. She kept on dying her hair green, blue, yellow, red, purple, pink or any other bright, happy color she could get her hands on all the way till the end. I think she loved red the most. The woman could carry bright red lipstick better than any glamor diva I ever saw. That is a lipstick color that is hard to carry off in a graceful manner.

    I worry though, that Niki the person will disappear in the rosy light we often view people who are gone. There is no doubt that Niki in some ways was a real-world incarnation of Wonder Woman, a character that did inspire her. However, heroes are heroes because they are heroes despite the demons and pain they carry. I don’t want to lose Niki the person, which made me giggle and cry.

    She had all this strength because she knew her weaknesses and demons intimately. What made her so awe-inspiring is that she lived with her entire being, warts and all. Niki was the embodiment of Henrik Ibsen’s admonishment to “Be what you are with all your heart. And not by pieces and in part”.

    I always aspired to live life in this manner myself and I immediately identified Niki as a fellow traveler when I met her. The family that she and Chris had created was something solid in a world where most of the structures I needed turned fluid at the touch of my hands. They had a solid family, built on love and partnership, something I could recognize, as my own world had grown more fractured and disconnected. I will forever be grateful to Niki for letting me into that world on occasion. It provided me with a compass point, as I started rebuilding my own world.

    I am also very grateful that Chris seems to let me help them rebuild the world Niki and him created for their two kids, now that Niki is gone and focus must change back to caring for those who survived the havoc that Caspar wrecked the last four years.

    Niki left so many gifts for so many people. Inspiration, life saving information, love, but I think the biggest gift she gave everyone she left behind was that she introduced us to each other. I have a whole world of new friends that I am barely starting to know.

    Thank you Niki, for everything. You did rage against the dying of the light.


    “We are all surrounded by her today and will be every day. She is the love and the hope we hold dear to our hearts. When we think of her, whisper to her and remember how she made each of our lives better in only the way Niki could.”
    -Debbie Fry at Niki’s Memorial Service

    Obituary for Niki Perry in the Philadelphia Inquirer

    Niki fighting for access to her own brain tissue samples from the Philadelphia Inqurier

    On tearing down information walls