February 17, 2017

Helpless

A series of health problems over the last decade or so have my dad mostly confined to a motorized chair, and in dialysis three times a week.

My dad has a lot of physical health issues, but the greatest concern is mental - the trauma of near-constant serious health issues and hospital visits has translated into a lot of depression, and he is from a generation (or maybe just a particular family) where mental health care has always been stigmatized. The sixth of nine children, two of his brothers were diagnosed with paranoid schizophrenia in the 1970s, and another committed suicide in the mid 90s. What should be regarded as necessary self-care has instead been regarded as something negative, that if you need *that kind* of help, it's something bad, it's a failure.

Before his heart attack in 2006, my dad was diabetic. He didn't properly take care of himself, which lead to larger issues later on, neuropathy in his legs, loss of fingers. It's been hard for him to go through that, and it's been humbling, as his child, to realize the humanity of your heroes. Because before he was diabetic, he was strong. He was always big, but he was an athlete. Our childhood home had a portrait of him as an all-star football player hanging in the hallway. He was the strongest man we knew, and we never knew there was any struggle underneath.

In school, my dad's contribution to the athletics department were significant, so his teachers were happy to pass him along, with whatever grades were needed to maintain his position on the football, basketball, track and field teams. Street smart, athletic - but he deeply struggled with literacy. When his first child was born - me - he started reading to me from day one. He wanted better for his baby than he'd had for himself, and he knew this was the key. By three, I was reading on my own - an anecdote I'd heard my whole life but only now, as the parent of a three-year-old, do I truly understand how amazing the feat was.

I was the first in my family to go to college, and my dad's pride in my achievements has never faltered. When I got an interview for a job in California, before the interview even happened, he jumped right in his pick up truck and headed to my apartment in Chicago - "If you get the job, we'll move you out there; if you don't, we'll have some adventures in the city." Less than a week later, it was me and him, headed west with a truck full of boxes and powerful blind faith keeping us positive. Other than an address, we had no idea what we were driving into - but his belief in me was enough.

In my apartment in California, there was an exposed bit of nail in between the kitchen and dining area. One day I noticed a trail of blood drops through the house, and realized my dad had stepped on it but hadn't noticed, he hadn't felt it. He promised he'd see a doctor when he got back to Connecticut, and headed out a few days later. That was one of his last times driving, and the beginning of the end for his physical mobility.

I've never stopped feeling guilty about being away from my family. It's a little ironic, I suppose: they are proud of my academic and career achievements, while I always feel like a terrible child and sibling for the fact that those very achievements have brought and kept me so far away from them.

Days like today, in particular, that pain is heavier.

Today, my dad is in the hospital. He's been very lucky to have been in my sister's good care for the last year and a half, and the number of hospital visits has dropped drastically. What used to be a weekly occurrence is now incredibly rare. But yesterday, with a chill, and the feeling of a cold coming on, he left his room in the middle of the night to sit in the living room closer to the wood stove. Three feet away, he said, but when he woke up a little while later, his legs were burned. He hadn't felt it, because of the diabetic neuropathy.

He called me, and very quickly fell into tears. This may be it for me, he said.

He's already homebound most of the time, unable to drive himself around. While half his week is spent in dialysis, it feels like the rest of his time is just spent waiting for the next treatment. The amputated fingers make doing many things for himself difficult or impossible.

If I lose my leg, he said, and his voice trailed off before drowning in sobs. I have no life. I have no friends. I don't think I can do much more of this.

I'm devastated. The man who dropped everything to get me to California feels helpless, and I'm trapped in South Carolina. I can't just run up there and be at his side. I can't help my siblings with the care our parents need. I can't be there long-term to get him out of the house once in a while.

The strongest man I know feels terminally helpless, and I can't save him. It makes me feel helpless, too. And guilty. And sad. And angry. And a million complicated and painful things.