The Gift of Baldness
September 1 2010
Like many, I had been searching for that path to my deeper self and to a more meaningful life. I never could have imagined the events that would ultimately show me that path. Given the choice, I would have certainly opted for another path, but so much that comes our way in life is out of our control. I discovered that the only control I did have was that over my responses to life’s up’s and down’s. It was hair, or the loss of it, that showed me my deeper self and allowed me to connect with women across the world in far deeper and more meaningful ways. I now feel that baldness has been the greatest gift of my life. That is not of course where I started. It took a deep descent before I could ascend to my highest self.
At a time when many women are struggling to rediscover who they are without growing children or no longer defined by their job, I was at what could have been the pinnacle of my life. After a very successful career as a stock broker, I stopped work to focus on raising my three sons. I was also very involved in sports. I coached the women’s tennis team at Chestnut Hill College for 8 years, participated in running races, and played competitive golf. In my search for my unique path, I even went back to school and graduated summa cum laude in 1998, the same year my second son graduated from Cornell University.
While searching for my greater purpose in life, my path suddenly veered and descended, pulled down by emerging health conditions. It seemed that almost every year another woman in my family was being diagnosed with breast cancer, making it feel almost inevitable that I too would have my day of diagnosis. After my second sister was diagnosed with breast cancer and coupled with the fact that my grandmother, mother, maternal aunt and yet another sister had had breast cancer, I opted to be tested for the BRCA2 gene. I discovered that I carried the gene and was told that I had an 85 percent lifetime chance of developing breast cancer. I made what may seem to some as a difficult decision, but one that required almost no deliberation for me. I opted to have a prophylactic double mastectomy and my ovaries removed. Medical mishaps sent me back to the hospital with a life-threatening infection following my oopherectomy. My achilles tendon ruptured in response to the antibiotics used to treat the infection. While the mishaps caused me to pause, they did not stop me from removing my breasts and the tissue that had maintained a fog of paranoia over me for far too long. Ten months after my reconstructive surgeries, I knew I was a different woman and that my life would never be quite the same, but my journey was far from over. My path was still descending.
Out of the blue, I began losing her hair in handfuls. Unlike the BRCA2 gene and mastectomies, I had no idea what I was dealing with this time. In three months, I was completely bald and had no eyelashes or eyebrows. I no longer recognized myself in the mirror and felt I had lost my identity. I was devastated and responded by completely withdrawing from life. No one or nothing could lift my spirits. My path had descended into darkness, stalled at the bottom of a pit. Fortunately, my path did not dead-end there. For this I am so thankful, knowing that for too many women with my condition, their path winds on in endless and repetitive co-centric circles at the bottom of a stagnant pit, rarely or never ascending into the light or elevated by a fresh breeze.
I had never heard of Alopecia Universalis until I heard my diagnosis, and that was a long-time coming. I first had to be doubted and dismissed by one medical professional after another before someone had to acknowledge what had become too real and obvious to deny. While Alopecia is not life-threatening, it is an autoimmune disease that can seriously diminish a woman’s quality of life. Bald women are automatically assumed to have cancer, to be sick. We are viewed as unfeminine and abnormal. Despite the fact that at least 40 percent of Americans with medical hair loss are women, maybe 0.01 percent of our bald role models are women. Most of them happen to be fashion models who not only pull off the bald look but who have built their careers around their stunning faces. There are also the defiant types who tatoo their bald heads and form sisterhoods in the desert. The first was not a path open to me, and the second was not a path that appealed to me.
The impact of alopecia on my self esteem and confidence was sudden and relentless. No matter what I did, I felt incomplete, abnormal, unfeminine, ashamed, and isolated. I was constantly trying to compensate for what I was missing with make-up, jewelry and wardrobe, but nothing hit the mark. I was frustrated by the lack of options for bald women - basically wigs, baseball caps and cancer turbans. I had always been fashion-conscious and noticed for my creative wardrobe, but coordinating outfits with my stark face and gleaming head felt beyond my creative means. I discovered that fashion and medical head wear were still worlds apart and that I would have to unite the two worlds if I was ever going to regain my sense of dignity, style and self-esteem. I set about designing my own head scarves. My goal was to design a scarf that would get me noticed for its beauty and elegance, rather than for my baldness. In retrospect, I can see that this is where my path began sloping upward, by no means steeply nor linearly, but upward nonetheless. Because I was not willing to surrender my self-esteem forever nor merely accept a lack of options, I had no other choice than to build my own ladder and climb out of the pit.
I gradually began reemerging into the world, wearing my self-designed head scarves. I felt anything but self-confident, but the feedback was consistent - stranger after stranger remarked at how beautiful my scarves were. It did wonders for my self esteem and confidence to be noticed for my scarves rather than my baldness. One night, at a dinner party with friends, a male friend commented that my scarf was stunning and that I should consider making them for others. The BeauBeau headscarf and my on-line business, 4Women.com, were born largely as a result of that timely suggestion. It was not nearly so easy as that sounds. I never had a conscious idea that I was going to help other women with medical hair loss. While I knew I was receiving no shortage of compliments on my creation, I still doubted that anyone else would want them. After all, I had designed them with no one in mind but myself. I simply had an idea, saw a need, and thought I had a solution. That was 7 years ago. Today 4Women provides scarves for beautiful bald heads on at least four different continents.
My customers constantly reaffirm my feelings with their emotional expressions of gratitude and their stories. They have compelled me to advocate for greater compassion in treating patients, rather than only our diseases. While I have some lifetime customers who are sister Alopecians, most of my customers are women undergoing chemo. They are devastated in more ways than one. They are devastated by their hair loss and of course by cancer, but many women share stories of the double and triple emotional burdens they carry. Thankfully, I did not need to reassure anyone I would survive while grieving the loss of my hair, but many women battling cancer feel the need to put the feelings of others first. Incredibly, some women find it is those closest to them who have the most hurtful reactions to their hair loss. Many spouses and partners rely on some sense of denial to cope with their wives' cancer, something that becomes quite impossible once their wives lose all their hair. Rather than protect her feelings, there are husbands who insist their wives keep their wigs on, even to sleep. Such stories break my heart, but I strive to provide a voice of understanding support and self-empowerment and to inspire women just when they need it most.
Some of my customers are unfortunately return customers. It is always tragic when I recognize the name of a woman who purchased scarves years ago while undergoing chemo, only to come back to 4Women for their second and third duals with cancer. I do my best to offer sincere empathy and understanding while advocating for greater acknowledgment and understanding of the emotional side of hair loss for women. I truly do want the world to know that when we all find emotional understanding and support to be as comprehensive as diagnosis and treatment, the healing journey will be that much easier. In the meantime, the feeling that I can help other women as a result of my own autoimmune condition is the path I gratefully walk daily, the path to my version of a more meaningful life. Now I wake up every day, thankful for being bald, thankful that it is my baldness that connects me to so many other women who are in need of understanding, empathy, and a fashionable accessory to their beautiful bald heads.
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