Posts tagged ‘cognitive disabilities’
May 1, 2010 was Will’s birthday, his 45th. It should have been a new beginning for him. After 22 years of struggle, he’d left the Ray Graham Association. He’d been granted Medicaid waiver funding, hired a personal assistant. He had a plan mapped out – reading and language therapy, cooking lessons, computer lessons. A new beginning was indeed promised – instead, it was the beginning of the end.
The single agent chemotherapy had failed; we’d known that for six weeks. We were waiting for a clinical trial to open up in Chicago. In desperation, I’d located the same trial in New Jersey and had begun preparations for taking him there. It was becoming increasingly clear we could wait no longer. He kept working, part time at a retail store, long past the time most people would have given up. I cannot imagine how he did it. His determination left me astounded, always. On the last night, I picked him up to drive him home. We’d driven a few blocks when he asked me to stop the car. He got out, violently ill. He was never able to return to work. On May 3, we took him back to his oncologist. No more delays were possible.
She examined him, told him he needed to be hospitalized, and then Will and I returned to the waiting room while his two siblings, both fighting serious health issues of their own, and his friend and advocate, Kevin, remained behind to speak to the doctor. They came out looking shaken. I rushed to Kevin. “He’s very ill…,” Kevin began. He held up three fingers. “Three months?” I asked, shocked – even though I should not have been. “No – weeks…” Kevin said, quietly.
Unless the “Hail Mary” treatment worked, there would be no time for any of his plans. And so he began “Biochemotherapy”, a regimen of three chemotherapy drugs and two immunotherapy drugs that, we hoped, would finally arrest the growth of this disease long enough for him to begin a clinical trial with a new drug that promised better odds, offered more hope. Nights of rigors, chills so violent that only morphine shots would ease them, emergency EKGs to monitor racing heartbeats, pleural effusions and capillaries leaking fluid, fevers and rashes and endless pain. And Will never complained, not once. He had fought to get out of Ray Graham, he had won. He was not giving up the promise of a real future, a future of self direction, without the fight of his life. And so he fought, seven times down and eight times up. Again and again.
Ray Graham continued to stonewall his lawyer’s demands for the return of his documents, continued to neglect Mike, his roommate. Will survived the first round of biochemotherapy and returned, along with a team of his friends and family and his personal assistant in support, to his condo – HIS home – surrounded by the people who loved him, whom he’d chosen to care for him – and fought this illness on his terms. None of which would have been possible had he stayed with the Ray Graham Association.
In September of 2009, Will’s oncologist told him that the two rounds of Interleukin 2, an immune system stimulating treatment that is so brutal it is usually administered in an ICU setting, had arrested the melanoma. We were thrilled; Interleukin 2 (one of the “best” approved treatments for metastatic melanoma) has a 20% response rate. The odds were not great, but they were worth taking. He had suffered terribly during the treatments but worked hard to regain strength. Perhaps Will would be one of the few “complete responders” and would get a miracle. His next scan was scheduled for January 2010.
Will made the most of the time. Friends had helped him enroll in a class called “Stepping Stones”, run by Access Living, Chicago’s excellent resource and support organization for all persons with disabilities. Will was applying for Medicaid Waiver funding that would enable him to, at last, leave Ray Graham and direct his own services. He made plans – at Access Living he finally had instruction in computer use, and was excited by the possibilities that offered. He had long wanted to improve his reading and language skills and we were lining up special help for that. He was always interested in exercise and nutrition and hoped to increase his cooking skills. His 22 years with the Ray Graham Association had done nothing to help him, he felt, with the things that were most important to him. Worse, they had undermined his efforts to gain more independence. He wanted out. He designated a friend, Kevin, to deal with the administrative aspects of the Medicaid Waiver application (he was applying for the funding both on Ray Graham’s group list, as the grant-funded program he was in was being ended, and Ray Graham urged all effected clients to do this) as well as on an expedited emergency basis. He hoped the emergency funding would be approved, as that would allow him to leave faster – and even with the good news he’d received, he sensed time was short. If he got sicker, he knew, Ray Graham wanted him to re-enter a “CILA”, or group home, the same sort group home that did nothing to help him when he was healthy. He was absolutely determined to never let that happen.
That fall and early winter was a beautiful time for him. Between classes at Access Living, trips to the city to explore interests, and planning for the future with friends, he was optimistic and excited. There were frustrations – Ray Graham had removed his “clinical book”, a file containing many documents (personal as well as related to his time with the organization) from his condominium, apparently to process his part of their group Medicaid Waiver application. But he needed documents that were in that file – a social security card and birth certificate, and troublingly, Ray Graham kept insisting they did not have these documents (later, after the advocacy group Equip for Equality and a private attorney intervened, the documents were returned by Ray Graham). But Will saw an exit to his time with Ray Graham approaching and remained positive. Ray Graham, in the meantime, had realized that Will intended to leave as soon as his Medicaid Waiver funding was approved. They were angry. They were likewise upset that Will was asking them to deal with his designated advocate whenever possible.
He was feeling pretty well, and life seemed possibility – laden. But the January scans ended all that, with the devastating news that not only had the cancer grown again, it was now in his liver. Sitting in the oncologist’s office, waiting for her to return with some information about the next steps, Will’s cell phone rang. Still in shock, Will answered it. On the other end was an administrator from Ray Graham, demanding Will come to a meeting to discuss “modes of communication” – the next day. Will said he’d call back – and thus began a whole new level of hostility and attacks from Ray Graham. The meeting never happened, as Will was getting a brain MRI the following day, and from that moment on, the fight for his life became a full blown war. Unfortunately, Ray Graham chose that moment to escalate their own war against Will, this time apparently to make sure he did *not* receive the Medicaid Waiver funding that would allow him to leave.