Jay’s Story: No One Should Be Left Behind, Thankful But Still Much To Be Done

homeless youth

( From My Files Friday: This Thanksgiving marks the beginning of my son’s eighth year in recovery! I am grateful to the many people who helped him and am proud of him for finally accepting his illness and taking steps to recover. I realize, however, there are many who are very sick and for their loved ones, Thanksgiving can be a difficult time. A year ago, I published a powerful blog by Joanne Kelly about her son, Jay. I recently asked if Jay’s situation had improved and, sadly, the answer was no. Joanne, please know that you and Jay are in our thoughts and prayers. You are why we must continue our fight for a better system. No one should be left behind.)

Please God Keep Jay Safe For Another Week: A Mother’s Ritual

          RITUALS   —   By Joanne Kelly

If you are an astute observer and you stand in the courtyard of my son’s apartment building, you might notice that everyone’s window blinds are white except Jay’s. The blinds in his windows are a golden brown, the outward manifestation of a two-packs-a-day smoking habit multiplied by four years of occupancy in this particular apartment. joanne

Today is pretty typical of my visits over the last few months. Jay hasn’t answered any of my phone calls this week. It is 4:00 in the afternoon on a sunny day in late November. I knock. I wait. I knock again. I wait some more. Finally I hear him unlock the deadbolt. He opens the door looking disheveled and groggy. Obviously, I have interrupted his sleep.

I step inside and wait for my eyes to adjust to the gloom. The nicotine-coated blinds block all vestiges of daylight.  One dim bulb casts its feeble light directly inside the front door. It is the only light he turns on because he pays for his own electricity. Heat, however, is included in the rent. It is at least 80 degrees in his apartment. Nonetheless, I don’t take off my coat. I am hoping the extra layer of clothing will offer a modicum of extra protection from the suffocating fog of cigarette and pot smoke that hangs in the air.

I move his backpack off the picnic cooler he keeps next to his front door and sit down on it. I avoid the couch because I don’t want to risk finding a bedbug hitchhiking in my clothes when I get home. He has had his apartment doused with poison multiple times in an effort to keep the bedbugs at bay. They always come back.

Mercifully, he turns off the radio, which blares a Christian rock station. He knows it is the first request I will make, because at the volume he prefers, the music feels like an assault on my aging ears.  I am grateful he remembers and accommodates my needs.

He excuses himself to go to the bathroom. From my perch next to the door, I can see most of his tiny apartment. Three plastic grocery bags overflowing with garbage sit on the floor next to his kitchen garbage can, which is also overflowing. Every flat surface in his kitchen, even the stove top, is filled with empty pop and beer bottles, empty soup cans, empty cereal boxes. As far as I can tell, they are in the same position they were in last week when I stopped by.

His living room is a little more orderly, but piles of cigarette ash have collected on the floor around the edges of his furniture.

As I wait for Jay to come out of the bathroom, my cheeks begin to tingle. It is an early warning sign that my chemical sensitivities are kicking in. I don’t know if it is the cigarette smoke or the residual bedbug poison. It doesn’t  matter much. I know I will soon be overcome with exhaustion and my head will begin to feel like it is splitting open.

Jay finally emerges from the bathroom and goes to his kitchen sink to wash his hands. I suspect his bathroom sink is too disgusting to use, because it has been months since I have paid someone to clean his place. Frequently, I have his apartment cleaned for him when he is in the hospital. But after five hospitalizations in the past year, I decided I didn’t want him to consider the housecleaning a perk of being ill. After his last discharge, I told Jay I would pay someone to help him clean his apartment, rather than paying someone to do the cleaning for him, but he would have to call the housecleaner to set it up. That was months ago. It hasn’t happened yet. I know schizoaffective disorder zaps your ability to initiate action, but on the other hand, he is trying hard to be an independent adult. I wrestle daily with the location of the line between doing too much for him and not doing enough.

He uses his elbows to turn on the kitchen faucets and squirts dish soap on his hands. He scrubs each finger individually with such vigor and thoroughness it reminds me of a surgeon prepping for an operation. I wait patiently for the scrubbing ritual to end. When he is finished, he turns the faucets back off with his elbows. He does not dry his hands.

He sits at the end of the couch with his forearms resting on his thighs, his dripping hands hanging gracefully a few inches beyond his knees. His long, thin fingers seem to glow in the dim light. Frequent vigorous washings have left the skin on his knuckles cracked and oozing.

I start my usual questioning. He tells me he is sleeping well, from late afternoon until about midnight. Today he had two cans of soup for breakfast, the only meal he has eaten in 24 hours. He is out of Honey Nut Cheerios, his usual breakfast (and also frequently his only meal of the day) and has not made it to the store to get more. He is not interested in having me take him to the store right now to fill his cupboards and stock his refrigerator.

“I’ll get to it, Mom,” he says.

He has not done laundry in weeks.

“I’ll get to it, Mom,” he repeats, this time with a note of irritation in his voice.

He has not seen any of his friends except the neighbor from whom he procures his pot.

The good news: Every day this week he has taken a bus across town to pick up his daily medications from the mental health center.

He looks like he hasn’t showered in days, but I don’t ask if that is true. He agrees to let me take him out to dinner for his 41st birthday, which is just over a week away. I know the answer in advance, but I ask anyway: Does he want to join us for Thanksgiving dinner?

As expected, he politely declines. He cannot be under the same roof as my husband, whom he believes is the one who fills his brain with “interference” – his word for the negative, intrusive voices that crowd his thoughts.

My eyelids and limbs grow heavy.  As the exhaustion infiltrates my bones, I decide to leave before I get too groggy  to drive. I open the door and gulp the crisp fresh air that rushes in.

When I get home, I perform my own ritual: I walk to the laundry room and remove my coat and all my clothes, dropping them directly into the washing machine. Even my underwear reeks of smoke.

I proceed to the bathroom. I sit in the empty tub, hugging my knees, and turn on the water. The rumble of the water filling the tub muffles my sobs.  When the tub is full, I relax into the water’s soothing embrace. I close my eyes and ask God to keep Jay safe for another week.

Until my next visit.

Joanne Kelley is a former state president of the National Alliance on Mental Illness in Colorado and a founding member of the Interfaith Network on Mental Illness, whose mission is  to help increase awareness and a better understanding of mental illness among clergy, staff,  lay leaders and faith communities. This blog was originally posted as part of the Caring Clergy Project

About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.