Two months after Kristy was diagnosed with breast cancer she lost a huge part of her identity – her hair. Without her hair Kristy felt extreme vulnerability and invisibility. She felt unfeminine and isolated. Kristy scoured the Internet for answers on how others dealt with this enormous loss and found nothing. Then a friend suggested she and another come over for the day to play with head scarves.
Through scarves Kristy’s world changed. Through scarves she found a way, with everything cancer was forcing her to face, to have fun. Now she is training women all over the world do the same.
Here is a bit of her story.
What was your reaction to being diagnosed with breast cancer?
I kept thinking it had to be wrong. They called and told me over the phone. I did not have cancer in my family history. I am healthy. I practice yoga five or six times per week. As I was not believing the doctor they suggested I come to the office, so they could tell me. When I came home, I poured my favorite drink, a bourbon and ginger ale. I turned up the music really loud and I just sang and danced. There is a Gretchen Wilson song I am here for the party and it goes something like, ‘I am here for this party, just try to throw me out,’ and that was kind of my theme song. Cancer chose the wrong person and it was not going to turn out in its favor.
How was the experience of shaving your head the first time?
It was really traumatic. When you are walking around bald everybody knows that you are sick. You can’t hide it. Suddenly everybody knows your business and it makes you really vulnerable.
The second time I shaved it I was much stronger emotionally. I could be more like, ‘I no longer define myself by my hair. I love it, it’s beautiful, I’m grateful to have it, but I don’t think of myself as being my hair. I see myself as whole and perfect with or without my hair.’
The first time I did not feel like that at all. I felt like my identity had been wiped out. It was really hard to take. Cancer is inside your body and you don’t have to look at it, but when you look in the mirror and you are bald, you can’t hide anymore. When it starts falling out it gets everywhere. You would not believe how uncomfortable it gets. It gets in your mouth and your eyes. It gets everywhere. I shaved my head for it to be cleaner and easier.
How long was your hair when you shaved it the second time?
The second time I shaved it to do the scarf videos. It is practically impossible to put a scarf on your head when you have a lot of hair and my hair had grown back so I had to shave it again to show people how to do it. I think doing that had a big impact on people.
It was about two inches long. It was really curly and big. You can tell on the videos where I open my eyes I am just thinking, ‘Oh God, I can’t believe I did this again.’
How did you get the idea of doing the scarf videos?
I felt like it was something I could do to contribute. As soon as I got sick I met a whole bunch of people who were super friendly. I met this woman, Nicole. She lived eight blocks from me. She was diagnosed at the age of 30. I was diagnosed at 40. We have mutual friends. When I was diagnosed she called me out of the blue and said, ‘I just finished chemo myself. If you would like I can answer any of your questions.’ She was so helpful. I thought, ‘What can I do to be someone else’s Nicole? What can I do to help someone else get through this?’ Since I didn’t have anyone standing around me that needed help I thought I could make a video about how to do head scarves. I did not know how I would get that video out because I am not technologically inclined. I had never even heard of YouTube.
You don’t sell the videos?
No. I put them on YouTube for free. Then I had so many people write to me asking where I would get scarves or skull caps that I realized there is a bigger need for this. This where I came up with the idea of scarf kits.
Tell me about your scarf kits.
I am hoping to launch them on June 1st. The kits will have two scarves, two skull caps, pins, links to the videos and cookies. It will have everything you need to get started. I don’t think of my business as selling scarf kits. I think of it as more of an inspirational thing, a validation thing. It is something I am selling, but I think the scarf kits carry more than just scarves in them, do you know what I mean?
Yes, I think so. I would be interested in what you mean by that.
When I am making a scarf kit for somebody I know what they are going through. I know they are afraid and confused. When I first lost my hair I had no idea how to put a scarf on my head. None. So I started talking to one of my girlfriends who had fashion sense. She had a friend that had just been diagnosed with ovarian cancer. So the three of us got together and played. And I say played because that is what we did, but I remember taking my hat off in front of those two women, who I love, and being bald and feeling so vulnerable. Even with my close friends I felt so vulnerable. I would stay up late at night looking for how to put a scarf on my head or what you do when you lose your hair. I know if I would have found what I am offering with the scarf kits on the Internet I would have been so relieved, so grateful. My mom who was desperately looking for ways to support me, she would have been so happy to give this to me. It would have been just so nice to know someone else was in the same place and this is what they did. What if you do not have a Nicole come knock on your door? What if you don’t have your friends to sit and be vulnerable in front of while you learn how to put a scarf on?
Can you talk more about what you mean about feeling vulnerability with cancer?
When you are walking around bald everyone seems to notice. When men are bald it is totally normal, even sexy. When you are a woman and you are bald there are people that just walk up to you and say, ‘So do you have cancer?’ I had one guy come and yank on my scarf and ask if I had hair under there. It becomes very public. Before I got comfortable, I would go to the grocery store and feel like a man in drag. I just did not feel very feminine anymore. I had another girlfriend say that she felt like she was invisible because you not only lose your hair on your head but your eyelashes and your eyebrows and you just feel invisible. That disconnect is very scary.
I think this is a side of cancer that is not spoken about. Do you think you think the feeling of invisibility comes from people not knowing how to approach you?
I think that is part of it. Even to this day I have been in the hot seat where I see a woman who is bald I think, ‘Should I try to give her support or is the most supportive thing I can do just pretend like I do not even notice?’ I have a good girlfriend who encouraged me to do the scarf kits because she had a friend that pretty much willed herself to die because she was just terrified of losing her hair.
I don’t know what to say to somebody half the time either, but I know what it is like to be on other side as well. There were times when people would come up to me and say, ‘I have been there. I have been through the same thing,’ and it would be really comforting. Other times they would come up to me and say the exact same thing and I would be like, ‘Just give me some space.’ One thing I would say is if you know somebody that is going to lose their hair do not make light of it.
When I first was going to lose my hair I went to have my cut really short so I could give my hair to Locks of Love which is the organization that makes wigs for children. I cut it short for that and also so it would not be so traumatic when it started falling out. My girlfriend who went with me was trying to be supportive, but she was kind of laughing about it. She was trying to make light of it. It was almost as painful as losing my hair. I was like, ‘Don’t you see what is going on? This is not funny. I am not going to try and laugh with you.’
How long did it take to go from the extreme trauma of losing your hair to realizing that there could be some fun in this?
It was probably up until I put a scarf on my head. The day I was with my friends and I learned how to put a scarf on my head I was so happy I went out and took a walk in it and the first person I ran into said, ‘Kristy what is going on? What is going on with that thing on your head?’ And I told her and it was the first time I had the confidence to tell anyone. Before that I was kind of hiding. I have heard of women who literally never left the house when they were bald. Once I figured out how to put a scarf on my head I could kind of forget I was bald too until somebody pointed it out to me. When I had a scarf that was a bit braided down the sides I would kind of forget because it felt like I had my hair on my shoulders.
It was fun. I called it scarf therapy. It was something I had control over. I felt like doctors were controlling my life.
How much will a kit cost?
I am still figuring out cost, but it is looking like around $55.
Did it surprise you how much of your identity is in your hair?
It did not surprise me one bit. Everybody has their go-to feature. For me my entire life it was my hair. It was always what people would comment on. People would tell me they loved my hair, that they wanted my hair. I was really attached to it. I am still attached to it, but now I see it as a part of me and not my identity.
How did cancer change the way you approach your life?
I am a real list maker. After I got sick I would walk around the house and there were all of these lists, ‘Change the litter box, update the check book, whatever.’ They were all the same. After I got sick I just realized this stuff is so not important.
When you are sick you learn these lessons , but as you get better you slowly begin to slip into old habits. After cancer, I fell down the stairs and broke my back and pelvis. It was then that I realized that I had been losing track of all of those transformative lessons that cancer had taught me; I had gotten lost in the unimportant stuff again. Falling down the stairs was a huge wake up call and a great reminder that there are much more important things in life than whether or not the litterbox is clean.
I have talked to a number of people who were diagnosed with different diseases, lupus, MS, a woman who had brain aneurysm and almost all of them say, ‘I feel like the world was trying to get me to slow down.’ Do you feel like that is the case with you at all?
Yes. Absolutely. I do not know if I would say the world wanted me to change. I think I would say that my body wanted me to wake up. I think it was symbolic that it was breast cancer. I feel like it was my body telling me I was not taking care of it. I don’t mean physically. I mean emotionally. I was not treating myself with the love and respect I needed. I was working many, many hours and I was just exhausted. It really taught me to value myself. I think women in particular think that they need to take care of everybody else first and then take care of themselves. But the truth is you need to take care of yourself first, because if you don’t then everybody is going to have to take care of you.
Did you change anything about your diet or exercising after you were diagnosed with cancer?
No. All my work was emotional and spiritual work. I didn’t change my diet. I eat butter on my bread every day. That is not what I changed. I changed how I look at my life and how I view myself within it.
What were the tools you used to make these emotional and spiritual changes?
I am a true believer in meditation. I did not know how to meditate before I got sick. Anytime I am feeling sad or kind of out of sorts it is usually because I have not meditated. It is easy to get back into that ‘list mode’ if you don’t have take that time for yourself.
Do you think there is anything that people who have been diagnosed with cancer understand better about life than those who have not?
What I have learned is that it all comes down to a choice. I am not going to say that people who have cancer understand more. What I will say is that you get to choose. There are people who have been diagnosed with cancer who feel like the world has just shit all over them and I don’t think they end up learning anything because they look at it like a curse and that thought process shuts down all creative thought. You don’t really have a choice with cancer, but it is up to you how you are going to approach it. You choose your attitude. You choose what you are going to take away from it. You can choose to simply go into survival mode or you can choose to transform. I think simple survival is overrated. I hope to inspire other women to choose to grow, stop putting off their dreams and truly appreciate their beauty – inside and out. To my mind that is the gift of cancer – it offers each of us the chance to really know in our hearts what is important to us; to us, not to our culture or our parents or our spouse but to us. The diagnosis of cancer, or any significant challenge, has the ability to cut through the noise of everyday life so that we can honestly hear our heart’s desire.
You mentioned earlier that you approached cancer with the, ‘Hell no this is not happening to me,’ kind of attitude. Do you have any examples of how that attitude helped you through certain situations?
I remember talking to my mom and her asking how I was going to pay my bills. I was like, ‘I don’t know, but the universe will take care of me.’ Her response was, ‘It doesn’t always work that way.’ To which I said, ‘Well it does for me.’ If someone would have told me I wouldn’t work for two years and I would not end up on the streets I would have thought they were crazy, but I just chose to trust that things were going to be exactly how they were meant to be and I guess if I would have ended up on the street I would have trusted that that was exactly how it was supposed to be. I would have tried to learn from that.
Before I got diagnosed I was a worry wart. I thought I had to control everything. My sister always told me I was a my way or the highway kind of person. After I got sick I kind of let go of all of that. Clearly I was not in control anyway. At the same time I feel like a lucky person. I felt like everything was going to be just fine. I believed in that and it was; in fact it was better than that.
Anything else you would like to add?
It really comes down to choice. You do not have to have cancer to recognize that in your life.
I do a little public speaking. When I do I tell the kids to close their eyes and think about something they really love and ask them to think about how that feels in their body. And then I tell them to close their eyes and think about something that worries them or upsets them and then ask them how that feels in their body.
I think the more positive you are, the better you will feel in all aspects. I think your first priority should be taking care of yourself. When you see somebody else doing that it is so empowering and inspiring to other people. When I see somebody taking care of themselves and aspiring to do something for their own good I feel inspired to do that for myself. The best thing you can do is shine your light out there. If you keep your light dim nobody else can see. The best thing you can possibly do is to shine your own light, so it gives others a way to see their own path.