The American Indian Cancer Foundation eagle staff at Lake Vermilion, primed and ready for Grand Entry. Endaso-Giizhik Ojibwemong Makwa Nindoodem Miskwaagamiiwi-zaaga’iganiing indoojibaa Niin amogo-ishkwanidiwin (My Ojibwe Spirit Name is Everyday I belong to the Bear Clan, I am from Red Lake I am a cancer survivor.) This was usually the way I introduced myself in my speeches for the Powwow Colon Cancer Initiative. The initiative was a project that was sponsored by the American Indian Cancer Foundation (AICAF) with a grant from the Minnesota Department of Health. Six powwows were selected to bring a message of hope and awareness in regard to colon cancer. The initiative began in April and ended on the weekend of June 22-24 at the Lake Vermilion Traditional Powwow located on the Bois Forte Ojibwe Reservation in northern Minnesota along the U.S and Canadian border. The people who lived in the region were called Bois Forte (Strong Wood) by the French. This was based on the name that the people called themselves - Zagaakwaandagowininiwag (Men of the Thick Fir-woods). One place of habitation was Onamni – Lake of the Sunset Glow. It was later translated by the French as Lake Vermilion. Lake Vermilion was established by the treaty of 1854. Nett Lake and Deer Creek were established by a treaty in 1866. All three comprise the Bois Forte Band of Ojibwe. It was my first time at the Lake Vermilion powwow. Somewhat surprising considering that I’ve been dancing for about 35 years, traveling all over Ojibwe country for powwows, but never attended this one. I know the reason why. In previous years, I would have attended the powwow as a dancer. But Gichi-Manidoo (the Creator) moves in mysterious ways and I wouldn’t go to Lake Vermilion until it was meant to happen. My role as an amogo-genawenimaad (cancer advocate) in Indian Country has taken me to places where I’ve never been before to bring a message that, I believe, is a mandate from Gichi-Manidoo. Lake Vermilion was one such place. I brought the AICAF eagle staff with me. This was the third powwow of the initiative that the eagle staff was part of the Grand Entry procession. The eagle staff was made by me and Nan, my wife and caregiver. It was created from a dream vision that I had and was gifted in 2017 to AICAF at the Powwow for Hope. The powwow began on Saturday afternoon. Surprisingly, I was the only one with an eagle staff. (Two Bois Forte eagle staffs would join the Grand Entry for the Saturday evening and Sunday sessions.) Although eagle staffs aren’t necessarily required to begin Grand Entry, their presence brings balance and meaning to a powwow. To me, it was significant that the AICAF eagle staff would open the powwow. It had center stage. It provided the opportunity for the spectators to see this beautiful, and meaningful, eagle staff lead the color guard and dancers into the dance arena. Lining up for the afternoon Grand Entry at Lake Vermilion. Saturday afternoon Grand Entry at Lake Vermilion. Later in the day, I gave my speech. I began this one differently. Rather than beginning with my experiences as a amogo-ishkwanidiwin (cancer survivor), I talked first about the eagle staff. I spoke about the meaning of the feathers and the colors on the staff and that the staff represented those we have lost to cancer, the survivors, and the caregivers. I then spoke about my experiences as a survivor, the effect of cancer in the Native community, and the importance of getting screenings. Giving my speech at Lake Vermilion. Following my speech, a woman came up to me, introduced herself as a cancer survivor, thanked me for speaking for survivors, and shared her story. Her name was Christina Primo-Hujanen. On a Facebook post, she was asked about the nature of our conversation. Christina responded: “Because we are both cancer survivors and he and I were talking about how it affects us but people don't like talking about it and people don't realize the after effects and how people don't understand the traumatic after affects. Remission means it comes back. Just don't know when.” Cancer survivors share a special bond. We are a band of brothers and sisters engaged in a different kind of war. Christina is one of several survivors that I’ve met at various venues that I’ve been to and who have shared their stories with me. It’s people like Christina that make my work worthwhile. One survivor to another. With Christina Premo-Hujanen. I’m grateful for the opportunity that the Powwow Colon Cancer Initiative has provided me with. Hopefully, my words will motivate others to become familiar with symptoms and get screenings. And although the initiative has ended, my work continues. The Journey goes ever on. On the Lake of the Sunset Glow. © Robert DesJarlait, 2018
All photos by Ivy Vainio © Ivy Vainio, 2018
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Caregiver Honor Dance for Nan, 2017 Powwow for Hope, Photo by Ivy Vainio Sometimes I get these odd thoughts early in the morning as I sip my coffee. This morning was a "what-if" thought. What if I had cancer but Nan and I weren't together? If the circumstances were different, would I be an advocate, writer, and blogger of cancer in the Native community today? Probably not. I would most likely be bitter, angry, and depressed. I know that I wouldn't be able to deal with The Beast alone. Over the years (and it's odd to say "years," but I've been on this journey for over six years now), in the cancer wards and clinics that I've been to, I've seen those who are alone. They have no one to accompany them to give them loving support. I've seen the pain, suffering, and depression etched on their faces. Like a conduit, I absorb all that. It strikes me deep within. It becomes the residue of memories and experiences that I’ve had in Cancerland. Memories of the dark, lonely hours in the cancer ward while the patient next to me suffers in silence because there are no loved ones to visit him. In the cancer clinics, people who suffer silently waiting to see their oncologist as they sit alone without loved ones accompanying them. Many of these people have spouses and partners who have abandoned them which deepens their pain. But then there are those who have someone with them and it’s like going from dark to light. They are more comfortable and a bit more relaxed because they are not alone in the darkness that filters through their lives. Their situation is more acceptable because they have someone next to them that usually includes their spouse/partner - and a support group of offspring, siblings or friends. In my language we call them Gaatiniwekweg (female caregivers) or Gaatiniwewininiwag (male caregivers). They play an essential role in our health and well-being. They are there to get us to our appointments. They are there to listen to our diagnosis. They are there to listen to our complaints and our fears. They are there to give us encouragement. But most of all, they are there to give us their unconditional love. Not everyone has one. And without one, the journey can be extremely difficult. Certainly, some people can get through it alone, but for others, it can be an emotional struggle. I’m grateful that I have one. One who has been with me every step of my journey. I know it hasn’t been easy for her. The stress and anxiety of a yet unknown future affects her. But she has never wavered from being my support system during these often difficult times. So, my “what if” moment has turned from what could have been to what it is not. My Gaatiniwekwe has shown me that life has meaning in the darkness of night. © All Rights Reserved, Robert DesJarlait, 2018
On the weekend of June 8-10, I attended the 150th White Earth Annual Powwow. I brought with me the American Indian Cancer Foundation (AICAF) eagle staff. This is an eagle staff my wife and I made from my dream vision and gifted to the organization in 2017. It was created with love and hope from a cancer survivor and a caregiver. The White Earth powwow was an inauguration of sorts – it was the first time that the eagle staff was brought into an outdoor powwow. One of the purposes of eagle staffs is they represent veterans, community organizations, or families. They are the flags of our nations and our people. As such, they lead each Grand Entry at powwows. Following Grand Entry, the first song sung is an eagle staff song that honors the staffs. Like most powwows, Native veterans form a strong presence. They are recognized and honored as Ogichidaag (Warriors) - those who have protected and defended our homelands. White Earth was no exception. For me, it was a powerful experience to be among so many veterans, many of whom were combat vets. I stood in a line with veteran eagle staffs. Behind us was the color guard with flags representing each branch of service, veteran organization flags, tribal flag, and other flags that included the American, Canadian, POW, and KIA flags. As I stood in line, I thought about the eagle staff I was holding. Although the staff didn’t represent veterans per se, it represented veterans of a different sort – Amogo Ogichidaag (Cancer Warriors) who are engaged in an endless war against a ruthless enemy, one who is cunning, baffling, and powerful. Our bodies bear the scars of that war, surgical scars that crisscross our bodies to find The Beast within. Our scars are our Purple Hearts that are earned only in battle. Like a battlefield, many have fallen, yet many have survived. This enemy of ours doesn’t recognize age or race. It shows no mercy for child, adult, or elder. Its weapons come in many shapes and forms. Our weapons are love and hope. It’s a daunting battle but many of us persevere. And we persevere because we cherish life. On a hot June day, the meaning of the eagle staff came to me. We too are ogichidaag. © Robert DesJarlait, 2018
Photo by Joe Marcel Thunder We are lanterns in the darkest night; Our soul-spirits shimmer in the winds that swirl around us. We are but flames of hope amid a force that seeks to extinguish us; Our faith in the unseen lights the shadows. We are the beacons for the unguided; Our light illuminates the long journey’s path. Newly-kindled flames join the age-old flames of those who have passed homeward before us. Together, we are the beams of promise. We are Luminaria. © All Right Reserved, Robert DesJarlait, 2018
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Robert Desjarlait
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