Image provided by: University of Oregon Libraries; Eugene, OR
About Street roots. (Portland, OR) 1998-current | View Entire Issue (Feb. 19, 2016)
Page 8 News New s J.C.: Exactly. It’s funny because I have been down that road since then. It took me a while to go down it, more it was just the thought of it. I don’t remember it, so it doesn’t bother me. Jennifer Chambers, a writer experiencing traumatic brain injury and a rare genetic disorder, shares stories of Oregon women who truly live up to the title of remarkable. BY SUE ZALOKAR S T A F F W R IT E R "P art of aty impetus for w ritin g 111® bools were the pioneer fonrnals of the women who crossed on the Oregon T ra il. The things they went through are really unfath omable - the kinds o i de p riva tion and lo n eline ss/" JE N N IFE R CHAMBERS, AUTHOROF '•R E M A R K A B L E OREGON W O M E N : R E V O LU T IO N A R IE S & V IS IO N A R IE S ” S.Z.: Are there genetic markers? Are you able to tell if your children have a genetic disposition to this disease? color) written about in Oregon because Oregon was founded as such a racist state. I did want to include women with as diverse backgrounds as possible. I wanted to dispute the fact that it was so racist. There were these amazing women who happen to be of color that were doing amazing things here. ennifer Chambers is drawn to remarkable Oregon women, and so she writes about them. It’s no coincidence; she is one herself. Her most recent book, “Remarkable Oregon Women: Revolutionaries & Visionaries” (Arcadia Publishing) was pubh'shed in S.Z.: Do you have a favorite of the women you November and features extraordinary and featured in the book? ordinary women spanning both the geography and the history of the state. J.C.: Kind of (laughter). I don’t have just Chambers began experiencing symptoms of one. Part of what was really fascinating to me a rare genetic disorder around the age of 12. and part of my impetus for writing the book Parts of her body would become inflamed for were the pioneer journals of the women who no apparent reason. To date, there is no one crossed on the Oregon Trail. else in the U.S. known to have this disease. The things they went through are really Chambers said the National Health Institute, unfathomable - the kinds of deprivation and who helped diagnose her condition in 2013, loneliness. Putting yourself in that spot is might name the disorder after her, as she is really interesting. the first person documented to have i t When she was 15, Chambers sustained a S.Z.: It struck me as I was reading her story traumatic brain injury that almost took her in the book that it was interesting that you chose life. It was a long road back. Marie Dorian because really, her contribution Today, Chambers is a mother of three, a was specifically to her family. She didn’t do published author, and a speaker for the Body something historic for the state of Oregon, but the Love movement, which celebrates sexual importance of the work she did for her children, fluidity and feeling open with oneself at any that was pretty remarkable. It speaks to the huge age, size, gender or ability. She’s also a role, which is often not valued, that mothers play co-owner and an editor of Groundwaters, a in society. Lane County magazine that showcases the literary voices of rural people. J.C.: Marie embodied this precisely, with . Chambers wrote a piece that was selected very little recognition from her husbands. for the book “Chicken Soup for the Fat Lady’s Except for the last one, I think they were all Soul” and is working on a book about her own not real fantastic. She really did everything by experience with traumatic brain injury, called herself. She kept her family together and she “Try, Try Again.” did what she had to do to make things happen For her latest book on Oregon women, for her family legacy to continue. Not just the Chambers said she sought to tell the stories future of her family, but the future of the she had missed out on as a student in Oregon. state. “I didn’t understand why there were all of these women, who I should know about,” S.Z.: In reading your personal bio, you are a Chambers said. “I grew up here, and I went to pretty remarkable Oregon woman yourself. school here, and why wasn’t I taught about these women? It would have been amazing to J.C.: I have a genetic disorder. It is so rare read about these women to me personally as I that the National Institute of Health might was recovering from my brain injury. Part of name it after me. what really helped me when I was relearning They have no idea what it is. It took about things was reading about women who had also 20 years to find any kind of help for it. It’s accomplished things that were really super rare. They think that six people in the insurmountable. world might have it besides me. I thought these people should all be together in one place. S.Z.: What? Wow. How does it present for you? Sue Zalokar: Surely there are many remarkable Oregon women. What were your J.C.: It’s similar to a fever disorder. Parts of criteria for selecting women to feature in the my body will swell, like my calves or forearms book? or face, and then my joints hurt and my muscles h u rt It’s a lot like rheumatoid Jennifer Chambers: It was hard for me arthritis, which is what they thought it was for that there were many (women) who have been a long time. It’s really debilitating, and it covered in other places. And some were so big makes it so that I can’t walk (sometimes), that I couldn’t not cover them. which is crappy because I also don’t drive It was as much geography as impact, because my brain injury happened when I was because each woman was important in her 15. own way. I really wanted to show women that I’m very lucky, but I also use a lot of were important to each, different part of the strategies that help me. state. I’ve really learned how to schedule stuff. If I spoke recently at Powell’s, and afterward I everything’s down to the minute detail, I can was asked if I had purposely chosen people of get it all done. Mostly. color. If I were going to do that, it would have been hard. There aren’t as many (people of S.Z.: There is a lot of talk about the brain J.C.: Actually I just went to see NIH. I was looking on the Internet, and I found that I fit their study. They did all of my genetic testing, and they have my DNA all mapped out. They are still trying to pinpoint which specific gene has the abnormality. They know that something does, but they don’t know for sure because they haven’t matched anyone else who has i t The hope is they can figure out exactly what (gene is effected). They’re keeping (my genome) in their database and if somebody matches me, hopefully within the next 10 to 15 years ... I just asked someone on my team about my kids. And until they show any symptoms, (they might have lucked out). They do know that the two abnormal genes have to mate to make the bad cocktail of me. So far, my husband has strong genes. S.Z.: But your children may be carrying the recessive gene for this rare disorder, so their children could be affected. J.C.: Yeah. Absolutely. S.Z.: You have written a lot of horror. It seems like an interesting mesh - historical fiction and horror? J.C.: It was an easy place for me to break in and start writing something that was non threatening. Genre fiction is fun because people want it. They kept buying it, so I kept selling it to them. I can identify with things that are horrific. There is nothing really more frightening than things that I have experienced. After my accident, my brain was impaired. My body was better before my brain was, and so I got to experience some really horrible human beings. S.Z.: I ’m so sorry. J.C.: It happens. . S.Z.: Tell me about Groundwaters. Why is it important? injuries that football players sustain and the condition of chronic traumatic encephalopathy, or CTE. It is something you have been living with for a long time. Can you talk about that? J.C.: The experience of having this has given me a lot of gifts. It’s been truly awful at other times. But I’m really very appreciative of everything that I have. I don’t know any other experience. And I don’t remember anything from before my accident Everything from before 15 years old is completely a blank. I had to re-leam everything. I didn’t know who my parents were. For the longest time, I , called my dad by the name of my dog. I had incredible doctol I was very lucky in that because of my weird genetic disease tta [they didn’t know about, I had an incident here the inside of my eye hemorrhaged am J went to an opthalmologist and they bjected steroids into my eye to stop it. By dffl g that, I found out that I was allergic to ste feds. This information came in han fy a few years later when I experienced my rain injury. At that time - it was ’92 - they reated brain injuries with a giant dose of ster ids, which would have made me blind. I don’t know that I be eve in things happening for a reason, |u t I was in a coma for about 10 days and then I was in in-patient (care) for about six weeks. I was eventually able to go back and finish high school and go to college. It was very traumatic and dramatic, but the thing that is germane is that the community really pulled together. Living in such a small town, there can always be (downsides), but part of the reason I’m so lucky is that the people at the school and all of the neighbors came together and helped us. I was very lucky to be in the place where I was when it happened. S.Z.: That idea of “it takes a village.” J.C.: I had just had my second child, and I was really starting to feel serious and competent as a writer, having done a few of those horror stories. I answered an open call for submissions here in the Willamette Valley, and it ended up being the magazine was based here in Veneta. I thought that was a cool coincidence. I went to the meeting and started writing for them. The owner of the magazine started it as a gift to the community, and her whole thought was to make it possible for people who lived in rural areas to be heard. Because of my brain injury, part of my whole operating idea was I wanted people to understand where I was coming from. I felt so foreign and other and different. It was awesome to find (an organization) that wanted to hear what I had to say. I kept writing for them and I became an editor, and eventually the owner decided to Page 9 sell it so three other people and I bought it, and we kept it going until just this last year. We decided to stop producing the magazine because it was becoming too expensive even with grants. Now we do a yearly anthology, and we publish other people’s work. S.Z.: I have a few favorite women you feature in your book, “Remarkable Oregon Women: Revolutionaries & Visionaries,” but one that leaps to mind is Sarah Winnemucca. She was a Nevada-born Paiute woman. Many members of her family were killed by U.S: Cavalry in the Paiute War. She became a Native American activist and wrote the first known autobiography by a Native American woman. What do you think she would have to say about the what took place at the Malheur National Wildlife Refuge? J.C.: That’s an interesting question. My husband’s family is Paiute. My husband’s grandmother was half Paiute, so they are of that area. For me, I think - she would be so appalled. She wouldn’t want those resources that had been preserved to be taken away. The building of roads that might damage the artifacts there, that’s the part that is such a shame - public land vs. private land aside. It is just reprehensible. I personally get the struggle for land, but I think that is the wrong place to do i t I understand the struggle for small ranchers; that’s very real. Small ranchers need a place to run their cattle; I get that. They are trying to make a big point, but they are hurting a lot more than they are going to gain. S.Z.: Full circle, where are you on the spectrum of healing? J.C.: Sometimes things are easier than others - just like everybody. I think that I am very determined and super stubborn, and I think that has served me well. I’m interested in everything. That has served me well, too. I like to learn, and I’ve learned how to learn. It’s humiliating to have to ask for help, but I have to ask for help. Learning to ask for help has been incredibly useful. I think that being willing to ask has been my saving grace. S.Z.: And then being able to receive it. J.C.: Yeah. There’s the trick. It’s really hard to admit that you can’t do it or that you don’t know how. There is an image in our society that you should know that already. So often, I don’t already know. I have to figure it out W IK IM E D IA C O M M O N S Sarah Winnemucca, a Native American activist, and wrote the first known autobiography by a Native American woman.
