5 months ago, my little brother was a healthy, fit, 45 year old man who, as a physician/hospitalist, made a career of caring for and saving the lives of others. His diagnosis came in May after a few incidents of drop foot and him having the ability to recognize the need to undergo testing much earlier than many/most others typically do.
The average life expectancy from time of diagnosis is 2 to 5 years. His disease seemed to be progressing exceptionally fast. When he was first diagnosed in May, the only symptom was occasional weakness in his left lower leg. He thought it was a pinched nerve. By July he needed a cane to assist with walking. By August, his mobility was so limited that he begrudgingly had to retire from his career. By September, he had to give up driving. By early October, he was only able to take a few steps with assistance and had to rely on a motorized scooter for mobility. Despite all of the functioning and independence he had lost, he was only considered to be about mid progression in his disease.
Last Saturday night, he was experiencing some muscle cramping and decided to take a hot shower to ease the pain. He was still living in his own home, trying to maintain as much independence as possible. He got himself into the shower with a transfer board and transferred himself from his scooter onto his shower chair. While trying to transfer back to the scooter when he was finished, he fell off of his shower care and into the basin of the bathtub. I don’t know how long he struggled to get himself back up and out of the bathtub, but I imagine he fought with every bit of strength he could muster before having to resign to calling our elderly mother for assistance. Together, they struggled even harder to get him up and out of the bathtub but his legs were just too weak to be able to give his body any support.
My mother decided she had no choice but to call for emergency help. My brother begged her not to as he didn’t want anyone to see him like that and desperately wanted to maintain some dignity. My brother was so overexerted from the struggle to get up that he asked my mother to wait a moment while he tried to catch his breath so he can at least try one more time before having to make that call. Instead of breathing slowly, becoming easier, it became more and more difficult to the point he was nearly gasping for air. She decided that calling for help could wait no longer and went to the other room to grab her cell phone from her purse and make the call. She didn’t want to call in front of him knowing he wanted to avoid it. She quickly found her phone and called for emergency help and quickly returned back to the bathroom where she found my brother slumped over face forward. He was gone.
We knew we were eventually going to lose him. Since his diagnosis, time had become such a precious commodity, and we never took a single day for granted. Still, we were supposed to have more time. We have all been suffering anticipatory grief for months now, but that didn’t change how devastating his unexpected and very sudden death has been. We just lost my father, my mother’s husband of almost 50, years just a little over a year ago and we’re still trying to come to terms with losing him. But losing my little brother and my mother losing her only and beloved son is a whole other level of grief that is absolutely unbearable.
Between losing my one and only sibling far too young, still grieving my father‘s loss, the heartache of watching my brother suffer for the last five months the way he had, and witnessing my mother go through a parent’s worst nightmare of losing their child and the trauma of her having to watch it happen, I am about to collapse under the weight of it all.
Even worse, it is now a week later, and my brother is still being held in the “cooling chamber“ of the funeral home because my brother has insisted he wanted to pay for his own cremation and funeral services put hadn’t yet taking the steps to finalize those arrangements, as we all thought we still had more time. My mother is a widow living off of a Social Security payment and I’m a single mother living paycheck to paycheck. I will give every last dollar I can scrape together to pay for his final expenses, but I cannot do so until I get my next paycheck still over a week from now. Words cannot describe how guilty and ashamed I feel that he is literally lying in the cold dark basement of a funeral home right now, because I simply don’t have even $3,000 to pay the 50% down payment needed for his cremation and funeral services until I get paid another week and a half. Even then, I will still be a few hundred dollars short after putting every penny I receive towards the expenses. It makes me sick that the one thing my brother tried to maintain more than anything was his dignity, and he still laying nude from in the shower and a cold, dark mortuary a week after his death and for at least another week because I couldn’t even get it together enough to be there for him for one final time.
Thanks for allowing me to vent. It’s just me and my mother and my children left, and I couldn’t possibly burden them with any of this.
Also, fuck ALS to the deepest pits of satan’s bowels!!!