Friday

Sakyong and Family

A New Era for Tagtrug Mukpo

article by Acharya Suzann Duquette
photos by Ted Ballou at a recent Shambhala Art program at Karme Choling

Tagtrug Mukpo, affectionately known as Taggie, is the autistic son of Chogyam Trungpa Rinpoche and his wife, Lady Diana Mukpo. On March 10, Taggie celebrated his 41st birthday at Karme Choling. It was a wonderful event, with more than ten people at Taggie’s head table, lots of momos, spring rolls and a homemade cake. It was a special event with a number of magical moments. After the second round of cheerful birthday by the entire dining room, Taggie said quietly, “Thank you very much.” At the end, he shook hands with everyone who came over to say goodbye to him.

Taggie was back two weeks later for lunch at Karme Choling, and happy to be here. His primary caregiver, Randie Fox, asked him earlier that day what he wanted to do, and he said he wanted to go to Karme Choling. After lunch, he was taking his plate to the dish room and Randie asked Taggie to take hers. He did. When he returned, I had just finished eating and she asked if he would take my tray to the dish room. He smiled and took it right there.

It feels like a new era for Taggie. Over the past nine years, I have been honored to serve as one of six volunteer members of the Tagtrug Mukpo Support Team and Trustee for the Tagtrug Mukpo Trust. In particular, I have appreciated the one-pointed vision of the support team members to ensure Taggie’s physical health and also to facilitate his ability to manifest as fully as possible in this life. I have felt a strong bond with the support team as friends and colleagues and in all of our work together. I am thankful for what I have learned from and along with everyone about how to view and best support Taggie, and am particularly thankful to Ashoka Mukpo, as a representative of his family, for assuming leadership of the support team. It is wonderful that David Mukpo is also part of the support team.

I first met and started working with Taggie fifteen years ago when I was co-director of Karme Choling. Along with many others, I have been amazed at Taggie’s development over these years. It has been a journey for him and all of us. When I first met him, he spent a lot of time tearing pages of books or other paper into small bits or watching television, and there was always an edge of alert to possible aggressive outbursts and his frequent grand mal seizures. I don’t recall any eye contact. His caregivers, supported by Karme Choling at the time, emphasized that he needed “alpha” caregiving, and psychological advisors assessed that any progress for Taggie in this life would be “glacial.” With Susan Taney’s guidance, changes in Taggie’s medications and approach to his physical and psychological care have improved his overall health. Especially in the past three years, with Erin Christie’s love, protectorship and skill as Shared Living Provider (SLP), and her tenacity with dietary changes and the addition of alternative health care, Taggie has begun to manifest truly differently. As Erin has said, depending on the occasion, he might be Taggie or Tenga, or even, on occasion, Tenga Rinpoche, one of several incarnations of Surmang Tenga Rinpoche, as recognized by the Sixteenth Gyalwang Karmapa.

While Taggie still has many past behaviors we are familiar with, he also has evolved in several remarkable ways. These include his higher tolerance for people, confusion, and input; his presence; and his interest in communicating. Many anecdotes about Taggie from Erin, but also from previous caregivers, point to Taggie’s perceptiveness. As we’ve all seen, though, Tenga is now demonstrating more ability to connect, arise to daily activities, take on additional responsibilities, and indicate his needs verbally. It is amazing to hear him speaking in full sentences, see him holding eye contact, and to know that he is finding his voice through music. Erin and Randie Fox, his current SLP, are encouraging these, and more. Personally, I have had conversations with Tenga, including direct eye contact and complete interactions – verbal and nonverbal – that have amazed me. None of this was possible or even dreamt of when I first met him.

It is a relief to know that at that this point Taggie is in a loving and supportive family. Randie Fox has known and worked with Taggie in different capacities for close to nine years. And, as Randi said when she applied to be SLP, she feels Taggie is part of her family. Her children connect with Taggie and her husband has said, “This is where Taggie should be; he should be with us.” It is fortunate, too, that not only is Erin continuing to be involved with Taggie’s care directly and as an advisor, but also her father, mother, and her sister, a respite caregiver for Taggie, are all integrally woven into Taggie’s life. Taggie’s caregiving team is strong.

Currently, with the family’s continuing support and other committed donor support, which complements and extends Taggie’s state and federal support, Taggie also has fundamental financial stability.

While it is never certain or guaranteed, I trust that Taggie will continue to flourish. This will be due to so many factors, but certainly among those are his family’s ongoing love and attention, Susan Taney’s strong and consistent guardianship, Erin Christie’s attention and advice, and the dedication of other support team members: Michael Greenleaf, Gerry Haase, and Bill Brauer. This is in addition to Michael Taney, Carol Hyman, David Wilde, Olive Colon, and others who are involved with Taggie’s support in a variety of ways.

I am so grateful and proud of everyone involved with Taggie. He is strong, his living situation is loving and stable, and his circle of support is fierce. After much consideration, and given other responsibilities to support Sakyong Mipham Rinpoche’s vision for Shambhala, this seems to be an auspicious time to step back from my responsibilities on the support team. At the same time, I hope to stay in touch with Taggie’s developments and, as is our Shambhala tradition, am happy to be called back if needed to help.

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For more stories about Taggie, please also see Taggie’s website: www.taggiemukpo.org