While both my mother and Senator McCain share this daunting diagnosis, their circumstances differ significantly. Unlike the senator, my mother had no health insurance and, residing in Florida, was ineligible for Medicaid.
She had always struggled financially, primarily due to ongoing mental health challenges. At the time, she worked at a laundromat, managing just enough to get by. My brother, who hadn’t spoken to her in two years, was the one to insist she seek emergency care. He had noticed she hadn’t been herself for months, but that day he found her disoriented on the floor of her small apartment, with a broken air conditioner in the sweltering summer heat of South Florida.
It was during that hospital visit that they discovered the malignant tumor, a thief of life that can erase your essence in an instant. My brother reached out to me with the news, and I quickly donned my emotional armor, ready to support her through this ordeal. Little did I know how unprepared I was to be her caretaker.
Senator McCain’s experience will likely be starkly different due to his access to health care. The belief that merely having access to emergency services equates to having genuine health care is misleading. Once the emergency is over, what comes next?
Like Senator McCain, my mother underwent surgery to remove the glioblastoma and was advised to follow up with radiation and chemotherapy. However, without insurance, she couldn’t pursue these critical treatments. Frustratingly, I had to discover on my own that glioblastoma qualifies for Medicaid—information I was never provided, even by the hospital’s social worker. It took nearly three months for her to gain approval.
Sadly, during that waiting period, my mother suffered another emergency visit due to brain inflammation. The steroids prescribed caused significant weight gain, altering her appearance drastically. Losing her sense of self-worth, she became increasingly disconnected from reality. The hope she had felt after the surgery faded, and her mental decline accelerated.
By chance, my mother was eventually accepted into a clinical trial at the University of Miami Miller School of Medicine, which was showing promising results and surprisingly, it was covered by Medicaid. Yet, she refused to attend the appointments; I found myself canceling numerous times. Each day, I urged her to go, but fear overwhelmed her. She believed the treatments would harm her and that I was somehow involved in this conspiracy. As her paranoia escalated, it increasingly turned toward me. Regrettably, I struggled to offer the patience she needed during her darkest moments.
I genuinely hope Senator McCain’s final days are not filled with the same turmoil my mother faced. No one deserves that experience.
In retrospect, those months would have been different had my mother had health insurance. I would have known how to navigate her care, and if I didn’t, I would have had resources to consult. Perhaps, if she’d had coverage, she could have sought medical help sooner, potentially extending her life and improving its quality. Maybe she would have been able to enjoy more time with her grandchildren. Just maybe, she wouldn’t have been so terrified.
Ultimately, it was Medicaid that facilitated her peaceful passing. I could place her in hospice care, offering her a semblance of comfort as she drifted into sleep instead of watching her mental faculties disintegrate. The absence of insurance accelerated her death, while Medicaid allowed her to transition with dignity.
This is my mother’s story with glioblastoma. Senator McCain’s journey, however, will be shaped significantly by his access to health care. And while I am grateful for his coverage, I have become an activist in advocating against legislation that threatens health care access for millions—a cause deeply personal to me.
Each year, only about 12,000 individuals are diagnosed with glioblastoma, making it a rare condition that many do not fully comprehend. I feel a sense of responsibility to share this narrative. Health care should be recognized as a right, not a privilege. Everyone deserves the dignity of facing their illness with grace, especially when it comes to end-of-life care. Senator McCain has the opportunity and influence to protect others from enduring a similar fate as my mother, and I sincerely hope he embraces that role.
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In summary, the contrasting experiences of my mother and Senator McCain highlight the critical need for accessible health care. The right to die with dignity should be a universal guarantee, not a fortunate rarity.