Maia Calloway is a woman in her early 40s who lives in Taos, NM and deals every day with the significant challenges from a severe form of Progressive Multiple Sclerosis. Maia works hard to find joy in daily living, and at the same time she is acutely aware that at least for now, there is no cure and only limited treatments that provide some relief from the debilitating and painful symptoms of her disease. Her prognosis is grim and her life is filled with uncertainty, except for the declining and terminal nature of her condition.
Nonetheless, Maia has become very involved with understanding her end of life options, including the medical aid in dying movement internationally and here in the U.S. She reads extensively and has become her own best advocate to work towards comfort and control as her disease inevitably progresses. Several members of the New Mexico End of Life Options Coalition have been regularly interacting with Maia for the last year and encouraged her to participate in our advocacy efforts to enact the Elizabeth Whitefield End of Life Options Act.
Maia sent letters to her local legislators to describe her condition and solicit their support for our legislative initiative. She made phone calls and left messages. As the legislative session progressed, Maia was able to arrange the necessary support to make the trip down to Santa Fe on two occasions to briefly tell her story during the House Judiciary and Senate Public Affairs committee hearings. In both cases her testimony was on target and extremely compelling.
Maia also wrote and submitted a My View oped piece for the local Santa Fe paper. Although it did not get published, we are proud that you can read it here. We salute Maia Calloway as an active supporter and member of our End of Life Options Coalition.
What Medical Aid in Dying Means to Me
by Maia Calloway
As someone who suffers from a severe form of Progressive Multiple Sclerosis that will eventually result in my death, medical aid in dying is the ultimate mercy from what will be a cruel and brutal end. I fully support House Bill 90, the Elizabeth Whitefield End of Life Options Act.
For me, the burden of this disease is in my spinal cord and brain stem. Almost every segment in my spinal cord has a demyelinating lesion, meaning the underlying nerve fibers have been permanently damaged or destroyed. On a daily basis, I suffer from symptoms that include loss of control of my torso and legs, loss of control of bodily functions, profound weakness, pain when moving my pulmonary muscles, and severe, intractable pain that cannot be ameliorated by the best of palliative medicine. My body has become a prison. The authorization of Medical Aid in Dying means freedom for patients like me.
As my MS continues to progress, I know my future suffering will only continue to worsen. I can expect such things as complete paralysis, loss of the ability to communicate or breathe, and forced to live an existence that I would wish no human being to ever endure. Right now, I am inside a medical nightmare. They can’t get me better. They can’t stop my suffering. They will not offer me the assistance to “opt out” of this medical nightmare and die peacefully. I am being robbed of quality of life by having to think of all of the desperate ways to die and be free of this illness.
Let me assure you. I am not suicidal. I do not want to die, but I am dying, so what are my options? This is the question that consumes me and leaves me with only a few undesirable choices. Do I pack up my belongings, leave my doctors, caregivers, and the loving support of my family and friends to move to another state or country where medical aid in dying has been authorized? Or do I search the dark web for ways to illegally obtain the medication, knowing that I could be arrested, scammed or subjected to something even worse.
If I knew I had medical aid in dying as an option in my future, I wouldn’t have to live in this horrible place of desperation and fear. I could spend time with my loved ones and enjoy the quality of life I have left.
Knowing that I could get that prescription from my family doctor without shame or fear of arrest, that I could be with my family and friends, and, if and when the time is right I could self-administer the final medications to end my suffering. That would make all the difference to me.
If, because of your religious, principled or personal reasons, medical aid in dying is not for you, I respect your choice. You have the option not to use it. But please do not make that decision for me by continuing to advocate for having medical aid in dying remain illegal here in New Mexico. The State Legislature should support all end of life options—palliative care, hospice, and medical aid in dying. It should be left to the dying person to decide how much they wish to endure and how they want the end to be…rather than the government by limiting our options.
Maia Calloway from Taos, NM is a former film and television freelancer and activist. Born and raised in Santa Fe, Maia struggles everyday with a severe, debilitating, untreatable and degenerative form of Multiple Sclerosis.