Thursday, 28 September 2006
Because her Medicaid D plan has a cap on the money allocated to prescriptions, Pata often has to decide between taking her anti-depressants and taking asthma medication (Massachusetts).
More recently, Pata has been diagnosed with treatment-resistant depression. "My depression is overwhelming at times," says Pata. "I feel exhausted, can't sleep, and feel bad about myself. It is hard for me to concentrate and read, even decide what to buy at the grocery store."
Successfully managing her depression has not been easy. Over the last 15 years, Pata has tried many medications. Her severe depression interferes so much with day-to-day functioning that she has had to go on disability and Medicare. Getting this help has been difficult. "Just filling out the paperwork is overwhelming," Pata says. "Here you are already depressed, and you have to go through this horrendous list of all the things you can't do, and put down on paper all the ways you can't function. Emotionally, it's very taxing." The application process is complex. Pata holds a PhD, but even she needed the support of knowledgeable therapists and physicians. She recommends that people applying for assistance seek the help of people who know the system.
Medicare D pays for medication, but has monetary limitations that hinder access to the most effective drugs for Pata. Treatment-resistant depression often requires the newest drugs for which there are no inexpensive generics. Medicare D's financial limit is quickly used up, which leaves Pata with no coverage until she pays a certain amount out of pocket. "People on Medicare D are most often elderly or disabled and on a fixed income," Pata says. "They don't have cash." Faced with this coverage gap commonly known as the "donut hole," Pata has resorted to skipping her medications, or choosing cheaper, less-effective drugs, which has compromised her wellness.
Pata's depression is further complicated by exercise-induced asthma. "I love to bicycle," she says. The cycling has a positive effect on her depression, but when she reaches the donut hole gap, she can't afford the medication that prevents her asthma, so she has to be especially careful when exercising.
Pata's father is Japanese-American, and it took him a long time to accept her illness. "Among the Japanese, depression is often viewed as a weakness of character," explains Pata. "My father had a hard time accepting it. It was also difficult to find therapists who understand my cultural background."
Therapists are human," she says. "And they have biases that might affect your treatment." She recommends making a list of what's most important to you in a clinician. "Then interview several over the phone," she says.
Your list might include availability, religious or gender preferences, and other conditions that affect wellness such as PTSD or trauma.
It is important to Pata that she be a good mother to her daughter Nariko, and not get derailed by depression. "Being a mother is my greatest challenge," says Pata, "But, Nariko's presence has kept me strong when I have struggled the most."
Pata has made a conscious decision that Nariko not wonder what's going on and not blame herself for Pata's illness, like Pata did with her mother. "I tell Nariko when I'm sad and that my illness causes it, not her," she says. "But, I know Nariko has trouble accepting it. One time, she dressed up as a clown in hopes of cheering me up. I made it a point to tell her that although I appreciated her efforts, it was not her responsibility and that I have other people to help take care of me"
Pata has taken significant ownership in getting well. From talk therapy, she developed an extensive list of coping mechanisms. These include connecting with her daughter, talking to her friends, reading Mary Oliver poems, and her bike riding. She has used every resource available to help manage her condition, including alternative approaches such as acupuncture and Reiki.
To help Nariko understand her illness, Pata wrote a children's book with her from the perspective of a child, on a mother's depression and what it means. Pata says, "I wrote things like 'Sometimes I cannot go to the movies with my mom,' and 'My mommy tells me it's not my fault. It's an illness."
Riding her bike has been a salvation. She rides about 4500 miles and year, including a one day 125 mile AIDS charity ride. Although the exercise undoubtedly helps on a biochemical level, it is the spiritual aspect of riding in the wind that sustains her.
When times are really tough, Pata expresses her pain through artwork and writing. "I like to think that my depression is not all negative," says Pata, "It has enriched my artistic expression, and helped me grow as a person. I think I can help others understand depression and open a new dialogue about what depression is." To this end, she is currently working on a book project called The Breaking Silences Project that explores the issues of Asian American women and mental health.