Miguel Carrasquillo talks with great pride and enthusiasm about how he created a bacon pasta dish featuring fettuccine a few years ago that “everybody loved” at the Italian American restaurant in Chicago where he was a chef.
Today, he is now longer able to cook, or do most other things. He is dying of brain cancer. He also has become the face of a national campaign to have right-to-die legislation passed in states such as Connecticut and to encourage Latinos to consider this issue despite a cultural aversion to talking about death.
Now, the 35-year-old native of Puerto Rico cannot even hold a sautée pan in his hand, he said, resigned to having lost his ability to control motor skills as the result of brain cancer. “The kitchen was my life. I love to cook, ” he said recently, while staying at the New Britain home of his aunt Rosa Centeno and his uncle Tomas Cotto.
The brain tumor has reached Stage IV and will eventually end his life, Miguel said. Meanwhile, he endures painful convulsions, headaches, the inability to sleep restfully, and almost total depends on his mother Nilsa Centeno and other family members. His mother has to take him to the shower where he sits on a stool while washing himself.
His typical day consists of taking 40 pills, occasionally talking with people through Facebook and mostly laying around “praying and waiting for the day this will end,” he said. “That is what you think every single day, how do I stop suffering, how do I stop suffering.”
What Miguel desperately wants is to have a doctor prescribe a medication that he can take to die peacefully in his sleep. “I want the option to choose how I want to die,” he said.
However, medical aid in dying is not allowed in Connecticut or Miguel’s home state of Illinois. It also is not available in Puerto Rico, where Miguel was born and will likely spend his final days with his family amid what he described as “beautiful weather, beautiful beaches, beautiful mountains and one of the biggest rainforests in the world.” He is not sure if he will ever return to Chicago.
While Miguel Carrasquillo’s ability to help himself steadily declines, he has chosen to share his story in a bilingual video produced by Compassion & Choices, a national nonprofit organization working to improve care and expand choice at the end of life by having states like Connecticut join the five that already have passed right-to-die legislation.
In addition to supporting this cause, Miguel wanted to help dispel what has been described as the Hispanic taboo about discussing death.
Miguel talks freely about his condition and his desire to die. Cancer has been a force in his life since 2012, when the disease was first diagnosed. Since then, he has endured innumerable treatments, including surgery to remove tumors that had spread to his stomach and liver when the cancer spread. An attempt at brain surgery, he said, had to be halted because exposure to oxygen caused the tumor to grow rapidly.
At this point, Miguel has accepted that he is dying and plans to stop his treatment shortly and doubts he will ever return to Chicago. He has a morphine pump in his body that helps with the pain and he says this will need to be enlarged because the pain is growing.
It is not to be said that Miguel Carrasquillo has not tried to reclaim his life. He has been in and out of Rush University Medical Center in Chicago more times than he count.
In addition, Miguel came to Connecticut from Puerto Rico, where he had moved to be with family, in order to consult with a different doctor. This proved unproductive. He recoiled at her request to start the testing and painful treatment from the beginning, he said.
Moreover, a recent MRI showed the tumor is taking over the right side of his brain and he is losing his vision and soon won’t be able to stand up. “I fall down a lot and I am on the floor a lot,” he said.
Miguel also has accepted that he cannot afford to move to Oregon, Washington, Montana or Vermont, and effective June 9, California, or to Colombia, where this right-to-die option exists. He would need to sustain himself financially during the lengthy residency, from six months in the states to a year in Colombia, that is required before he would be eligible to have a doctor prescribe the fatal medication.
Miguel has medical insurance, but he still spends a lot of money on medication and faces coverage limits that, for example, apply to scans and MRIs.
Also, he does not want to literally start from the beginning again, undergoing the innumerable tests and painful treatments that a physician would need before signing off on his death
Miguel said he participated in the Compassion & Choices project hoping that his story will help convince legislators to pass laws to give terminally ill adults the option of medical aid in dying. His part in the video was taped about a month ago in Puerto Rico where he lives with family.
His message, delivered in Spanish and English, is aimed at Latinos, particularly those with a cultural aversion to talking about death and to convince them to support medical aid in dying as an end-of-life choice. It is a taboo for Latinos to talk about that option “cause people are scared of what other people gonna say. Who are they gonna tell?” he said during the video.
Compassion & Choices currently employs this video in a bilingual campaign to educate terminally ill Californians, their families and medical providers about state’s new medical aid-in-dying law.
The organization also is lobbying heavily in more than two dozen other states, including Connecticut, as well as in Puerto Rico, to have legislatures approve so-called death with dignity legislation, which would allow terminally ill patients to request the aid of physicians in ending their lives.
In Connecticut, an aid-in-dying bill has been stalled in the legislature’s judicial committee for three years. Last year, hundreds of people testified pro and con at a public hearing on the bill with the opposition lead by the Catholic Church, hospice providers, disability rights activist and the Connecticut Medical Society.
Compassion & Choices decided against pursuing this measure again in the current legislative session because the legislature was preoccupied with budget issues and there would not have been enough time, said Tim Appleton, who represents the advocacy group on the East Coast. “We want to wait until the next session,” Appleton said, “and make it an election issue.”
For his part, Miguel said he has not discussed the right to die issue with politicians. “They don’t want to talk about it. They are hiding from me,” he said.
However, he has received a lot of negative comments, mostly from “churches and Christian people” about his participation in the Compassion & Choices campaign. “I don’t pay attention,” said Miguel, who is a Catholic, “but not fanatical,” he adds.
One reason Miguel ignores this criticism is that he believes his message “doesn’t come from nowhere, it comes from God,” he said. “How do I, Miguel, come up with that idea?” he asked. Moreover, he states, “When God puts something in your mind, he wants you to do it.”
Asked what his advice would be to young people, knowing that what happened to him could occur at any age. Miguel said, “First, achieve what you need to achieve in your life so you can go in peace.” He added, “Don’t be afraid to speak (about death). It is not a taboo.”
Miguel said he has “completed all the achievements he wanted.” This includes becoming a chef, traveling, and meeting many people. “I did a lot of stuff,” he said.
His list of accomplishments as a professional chef includes creating his signature pasta dish which consists of fettuccini in a pink (heavy cream and fresh tomato) sauce with bacon, basic and sundried tomatoes topped with fresh mozzarella, that is melted. It produced a “great boom” for the restaurant, he added, with a couple dozen plates prepared each night.
He added that while he has had a lot of girlfriends, he prefers to stay single. “At this point, I can offer nothing to a woman. Miguel only is taking medication and staying in a room all the time,” he said.
The one thing he really wanted to make sure he did, and it is shown in the video, was to meet his three-month-old nephew, Miguel Andres, who is his sister’s child. He achieved this in Puerto Rico and the video shows him proudly holding the infant.
Miguel’s video is posted in Spanish at youtu.be/wn7pseNRkqU and in English at youtu.be/Ehxovh3qhaI.