Late April in Michigan has brought about a rainy chilly day. Nature is finally in full bloom. The spring flowers have graced us with their presence, and green is the predominant color. To be exact, it's the second to last day of the month. In just a couple weeks, May 13th, it will be the one-year anniversary of the unexpected death of my brother Nathan. As I write this, It's almost too hard for me to express, and I cannot believe a year has nearly passed since the City of Lansing Police and I found him dead in his apartment.
I only got a glimpse of him lying in his bed as the police quickly turned me around and out of the apartment. The cause of death was from a urinary tract infection, as well as an overdose from a ridiculous amount of drugs various doctors had him on. Trays and trays of drugs were removed from his apartment by the police as evidence. Drugs ranging from a litany of anti-depressants, painkillers, and everything in-between. The medicines he could barely comprehend taking, and never should have been in possession of, including Morphine.
He was thirty-five.
Nathan was a fairly small man, and to be on this many drugs with such potency was inconceivable. You could have taken down an elephant with all the painkillers he was on.
It was a horrible incident that could have been prevented had he been given access to the right resources, the right supervision, and, frankly, a care facility that actually gave a damn about his well-being.
Nathan was my only sibling, five years my junior. He was born with Spina Bifida on August 20th, in 1980. Spina Bifida is a birth defect in which a developing baby's spinal cord fails to develop properly. Because of the Spina Bifida, Nathan (Nate, ashe preferred to be called), used a wheelchair his whole life, with no feeling from the waist down. My parents did the best they could to take care and provide for him from his youth into adulthood. Nate needed a lot of assistance and was largely dependent on other friends and family. My mother especially shouldered the brunt of this responsibility.
As a brother to Nathan, I always did my very best to make sure he was included in most of my activities. Nate loved and loathed me at
the same time. He loved me as a brother and looked up to me, but loathed me because I could walk and participate in other activities. Still, I tried hard to include him. We played sports together, video games, and I even did my best to get him involved in my brief but horrible foray in skateboarding. This meant me pushing him up and down a launch ramp, which I believe he found to be both terrifying and exhilarating.
Everything in our lives came to a screeching halt, however, when our mother, Amy, passed away unexpectedly from a surgical procedure gone wrong in December of 1996. This was a tragedy Nate would never really recover from. Although we were both devastated, in a way, her death brought him to gain his independence. He had no other choice, really.
He eventually lived in his own fully accessible apartment, had gainful employment as a greeter at Wal-Mart, and lived a fairly normal life. As I was busy with my own life - friends, school, and relationships - I still did my best to make the time to hang out with Nate. I'm a huge music nerd, and naturally, Nate became a music nerd, too. He had a love for bands like Pink Floyd, The Beatles, and
his all-time favorite, the rock and roll metal band Tool. Nate and I attended many concerts together, along with
my buddies who all loved Nate. Nate reveled in the excitement, the music, and the chaos a rock music show
provided. Music touched him deep down in his soul.
One time my friends and I took Nate to a Rage Against The Machine concert at Cobo Hall in Detroit in the late 90s. For those not familiar with the music of Rage Against The Machine, their music is political, loud, and hard rocking. Their blend of anarchic, rock and roll whips people into a frenzy. We had seats on the floor. Nathan wanted to go to the front near the stage and get as close as possible. We pushed him to the front and enjoyed the first band without any incident. As soon as Rage Against The Machine took the stage, it was like a bomb had been set off and people began to riot, jumping from the balconies to the floor. Fearing someone would land on Nate, my friends and I immediately began to push him to the back. "You ok, Nate?" my buddy Shawn asked. Nate just smiled from ear to ear and exclaimed, rather emphatically, "oh yeah!" This was the essence of Nate. This was Nate at his best.
I refused to let him feel left out of anything. Another concert at the State Theater in Detroit (now called The Fillmore), I neglected to get wheelchair accessible tickets, Nateenjoyingand the staff at the venue were being less than favorable towards us or sympathetic. We ended up having seats in the balcony which was obviously not conducive to Nate enjoying the show. I was upset, but I refused to let Nate miss out on the experience. Accepting the fate of the balcony, my buddy Dan and I carried him in his wheelchair up three flights of stairs. We were exhausted when we reached the top, and Nate was understandably scared going up the stairs, but that grin of his he displayed during the show made it all worthwhile.
Nathan struggled in his later years as he never got over the death of our mother. He lived a hard life. A wave of guilt is washing over me for not doing more, or for not getting him the best resources available. I tried to be the best brother to him I could be. To be there for him as much as possible. My own life simply got in the way, and sometimes, he just did not want my help.
Nathan's long, slow decline began a few years ago when he had an issue with his wheelchair that needed to be repaired. I wish I would've kept track of the place that "fixed" it for him. This repair shop took an unacceptable amount of time to get him his chair back. Nate was given a loaner wheelchair, and this is where the trouble began. Because Nate was not in his custom fitted wheelchair,
the loaner caused him to get a pressure wound on his bottom. Soon after, the wound started to get worse. It would get better, and then it would get worse. Better, worse.
Nate was in and out of numerous hospitals while seeing a litany of doctors. Various treatments with none of them really working.
To be fair, Nate was not always compliant with doctors’ orders. He thought he knew what was best. He wanted surgery to close up the wound when at one point had grown to the size of a softball, and as deep to where you could almost fit your fist in the wound. This wound caused many infections for Nate, which was messing with his cognitive abilities. He often believed people were out to get him. The City of Lansing Police were used to his calls, and showing up to his apartment frequently for emergency calls was not out of the ordinary. He was thrown out of one apartment complex because he was convinced his neighbors were out to get him.
I desperately wanted to get Nate into a facility where he would have 24-hour care. This was proving to be difficult because Nate was still considered to be capable of making his own decisions. I would have to get power of attorney, which was also difficult. The State of Michigan would not help. Various agencies gave advice that led to dead ends. It's not easy to get the help you need, and dealing with the various obstacles of the health care system is not easy.
The last few months leading up to his death, he was in a less than favorable care facility that was desperate to get him out of there.
He was not getting the proper care he needed, and the Medicaid/Medicare spend down was making things worse. He had a spend down that was making things difficult for him to stay. This urgency to get Nate out of there led to a lack of care and planted the
seed that Nate would be fine on his own. The wound was not fully healed, and only a little bit better, causing Nate to believe he could go home and take care of himself with the assistance of a visiting nurse.
My second to last conversation with Nate was an argument. I begged him to not check himself out. He insisted, yelled, told me to go to
hell. One of his many, faceless caseworkers sat there in the same room with us in silence. I refused to participate in the conversation any longer and went home. In the back of my mind I knew if he left, he would not make it much longer. The wound was not where it needed to be, he was frail, and he certainly was not in his right mind.
On May 6th, 2016, he checked himself out of the care facility. I begged and pleaded with Nate to stay. In hindsight maybe Nate knew what was best for him after all? Maybe he wanted to go home and die peacefully? I realize, technically, Nathan had full control of his decisions, but the care facility was the best place for him to be. They should've never let him leave in the state he was in.
This is where I believe the problem lies. Anyone over the age of eighteen and "in heir right mind," can be deemed fit to make their own decisions. We know our family members the best. We do not always know what they need, but we have an idea. I knew Nate needed around the clock care, and I couldn't achieve that for him.
My last conversation with Nate was on Mother's Day, a typically hard day for both of us. More so for Nate. We talked about music, our mother and I asked him how he was doing, and why he checked himself out of the care facility. He insisted he was doing fine, so I let it be. As if we almost knew we would never speak again, we both said "I Love You" to each other one last time. We had never really said I love you to each other all that often. It was bizarre, surprising and comforting.
A week later he was gone.
I always felt guilty for being able to live the "normal" life. In addition to his death, I also went through a divorce. It has taken me some time to snap out of my funk and to break through the haze to tell Nathan's story. I just wish I could've done more.
Nate was stubborn, cynical and at times, brutally funny. He was feisty and non-compliant, as my new friends at the Michigan
Disability Rights Coalition like to say. He had every right to be.
Many have said to me, "he's better off now not suffering," or "he's in a better place." A better place, to me, is to still be here with us. We
must do better to protect the vulnerable. Another disabilities protection and advocacy service looked into Nate's case, but (allegedly) did not find any wrongdoing which I find hard to believe and I refuse to accept. He should have never been allowed to leave that facility.
I want to do my best to honor Nate's memory by helping the vulnerable in any way I can. I want to try and prevent this tragedy from happening to other families. I would like to think Nate would have wanted it this way.
Even if it means carrying someone in a wheelchair up three flights of stairs to enjoy a concert.
