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Voices of COHP



I just registered for a full course load at my local college, at the age of 51. I think I might be able to do it this time, in addition to working full time and taking care of a family and home. I don’t think it’s a stretch to say that this would have been much easier to accomplish thirty-three years ago. More on that later. 


When you grow up with a mentally ill mother, by association, the rest of the world thinks something is wrong with you, too. Beyond “What kind of child doesn’t check in on their elderly mom?” or “Oh, you have no idea how you will miss her when she is gone!” there is another assumption — that any daughter who has a mother who won’t talk to her must be a terrible person herself. My mother has been absent for over 10 years. She has missed children’s births, first days of school, grandparent’s days, high school and college graduations, weddings and the addition of grandchildren. The world is full of beaming, proud moms of every description. I seem to have misplaced mine.


In addition to a host of unspecified and largely undiagnosed mental illnesses, my mother is a hoarder. 


I nearly said no when I was approached to write about my experiences growing up as a child of a hoarder. First, there are so many issues associated with hoarding, and particularly, children living in hoarded homes. Where do you start? More than that, though, I had just finished a particularly harrowing bout of therapy that was punctuated by a request from my therapist to write about a traumatic experience I’ve had — “complicated PTSD” is the diagnosis they give to people like me — and I chose to write about my fiance dying on my living room floor in front of me and my 7 year old son because that was easier than writing about my mother.


The thing with abuse — and I absolutely consider hoarding with children in the home abuse — is that things are never all bad; none of us would survive to adulthood if that were so. Some of my earliest memories are of myself sitting beside our console hi-fi on meticulously clean red carpet, listening to “I Saw Her Standing There.” My mom was a Beatles fan, she lived in Stockport, across the river from Liverpool when the Beatles were getting their start. Her copy of “Meet the Beatles” was a cherished possession that later, was lost under piles of garbage. There was a period of time — short and sweet — where I really had a pretty great childhood: a racially and ethnically rich, vibrant neighborhood, a big sunny apartment next door to our school with friends coming over to play, doting grandparents who were there at the end of the day, meals cooked and enjoyed around the table. I never had a father and never missed one, honestly. I never even conceived of a world that contained such a person. It was terribly confusing when all of that changed within the course of a year.


Dr. Jamie Feusner, from UCLA’s School of Medicine, has stated that most hoarders are single, either because their behavior has driven away those around them or has prevented them from forming meaningful relationships to begin with.


My mother started hoarding in earnest the year I turned six. That year, my grandfather, who was the sole male role model in our family, died suddenly, my grandmother returned to England, and my long-absent father was killed in a horrific car wreck — a trifecta that caused us to move to a different and more expensive neighborhood we could ill afford. My mother worked long hours and several jobs. At first, her lack of interest in housekeeping seemed to make sense — why couldn’t us kids pitch in more? If we helped, certainly things wouldn’t be so out of control! But children can’t keep up with the household duties of a regular home. When it’s a home that keeps filling up with more things, when you are strictly prohibited from throwing anything away, when you are six and your mother dissolves into hysterics when you try to remove a bag of garbage from your home — it’s impossible.


My mother would emotionally collapse whenever there was a discussion of any description about the house. So, I learned at a very early age that it was an absolute necessity to maintain strict boundaries between the family and the outside world. A few weeks ago, I had an argument with a man who tried to tell me that everyone — every child born anywhere in the world — has the exact same opportunities and advantages of everyone else: that with the proper amount of hard work and perseverance we all should be playing sports and buying homes and attending the college of our choice and living the good life. “Tell that to my mother!” I hissed, because the need to defend, to let the world know that she tried her best with what she had, she raised her children alone and I’ll be damned if you minimize her struggles! is strong, even now.


It seems strange to admit, but I probably was very fortunate that we moved so often — in most apartments, the full fledged hoarding was slowed (never stopped!) by a move to a new place. I have lived in 29 homes during the course of my life, 11 before I was 18. When I was a child, we moved almost every year — usually due to a fight with a landlord, a perceived slight or cross word.


I remember one notable move that happened because our landlord was somehow related to a man who had an ugly breakup with a coworker of my mom’s, but in general it was because my mother has a knack for absolutely destroying a home in the shortest time possible. How much damage can a person do in a year? It turns out, a lot. The longest we ever lived anywhere was 5 years, and that was the home that was inarguably the worst.


Usually, moving means a fresh start, but since we were not allowed to dispose of anything, the contents of one home were always boxed and bagged and moved to the next one — by taxi, wheeled cart, wagon or foot. There was never any rhyme or reason as to what went where — I remember opening a bag of children’s clothing in the basement of an apartment once that contained a loaf of long mummified bread and what looked to be a plate of food that had dissolved into slime a decade earlier— and as an adult, my health has suffered the effects. I have such a severe allergy to dust that I wake up with my eyes swollen shut if I if I miss one week in washing all of my bedding. Last year I was diagnosed with Hashimoto’s Thyroiditis and am now being tested for Rheumatoid Arthritis — both autoimmune diseases that are triggered by stress. Studies indicate that childhood traumatic stress increases the likelihood of a diagnosed autoimmune disease decades into adulthood. There is also evidence that stress induced hormones, especially on a chronic basis, may lead to alterations in the immune system. When it comes to hoarding related illness, I call myself exhibit A.


Out of all the stressors involved in living in a hoarded home, though, the biggest one I remember — and what gives me nightmares even now — is time. The amount of time that is wasted in doing the most mundane tasks. Nothing was ever easy. When I was in high school, we had no working bathroom, no refrigerator, intermittent power outages due to non payment, no food in the house, no washing machine and no car. When I woke up in the morning (in the dining room, as my bedroom was filled with stuff) the first thing I had to do was get dressed, find my way through the hoard, go outside and walk a block down the alley to use a park district bathroom. On lucky days, I started my day as a lifeguard for swim team, taking three city buses to school and jumping in the pool for a few quick laps before anyone else arrived — a perfect excuse to shower at school. I also had a job at the YMCA, so was able to shower and use bathroom facilities there, too.


We’re pretty tricky, us children of hoarders — what other high school kid would choose their job because of it’s proximity to running water? We had a bathtub that ran, but didn’t drain, so I could sometimes bail water and wash clothes, and we could always go to the laundromat if we had the money (not often). But everything, always, was work. This is the case with most children living in hoarded homes. Your mind is constantly processing conflicting and mundane information; where your next meal is coming from to how you can use a bathroom to how you can maintain friendships while keeping people out of your house and trying to clear a space for your homework and do you have forty cents to take the bus to school? while simultaneously dealing with actual physical stuff; on every surface, blocking doorways and making you slip and lose things.


There is no room for rest. There is no time that your brain is not operating at full speed. My brain has never learned to stop, to calm down. This manic thought process combines with secrecy about your home, and a fear of the hoarder’s reaction. Revealing the “secret” is absolutely not allowed or acceptable — and discussion about it, even as an adult, is so taboo that most can’t even discuss it with siblings who grew up in the same home. The shame is so ingrained that it can’t even enter into the conversation.


The reason I wasn’t able to finish college when I was younger? Because I couldn’t apply for the FAFSA, so unless I paid cash — which I did as long as I could — I couldn’t attend. Why couldn’t I apply for the FAFSA? Because my mother would not release her tax information to my university. Why wouldn’t she release her tax information? Because she hadn’t filed a tax return in 27 years. The unraveling of one issue after another has defined my whole life — not just the lack of opportunities, but the words and promises and stories and chatter and stuff — not just the physical items but the need to fill every moment, every room, every thought with layers upon layers of clutter.


My mother’s hoarding has led to homelessness, a few stints in an SRO (Single Resident Occupancy — a step above true homelessness), different periods of time where she has lived with me or my brother temporarily — but none of these experiences have led to lasting change on the real reason for her financial woes: storage units — some climate controlled — to house her hoard. At one point she had five units over three states — storage units for china, or pillows, or thrift store finds, paid for with Social Security which left her nothing for taking care of herself. She has lived in abandoned homes without heat, people’s basements, women’s shelters and with relatives, and for several years we have had no communication from her at all.


My brother and I have involved Adult Protective Services, Catholic Charities, and the Chicago Police Department. She has been lost and then found and then lost again. Once, we were actually able to find her from a chance Google Map image of her long deceased car parked outside an SRO. A few years ago, I started a routine when I visited my home town of Chicago, where I would drive around my old neighborhood (and the last neighborhood where my mother had a mailing address) looking for her. That’s stupid, right? The chances of running into a lone 85 year old woman in a city of three million people is so minuscule it’s hardly worth mentioning. Only, when I was in town for my 50th birthday, after a day at the beach with a friend, I decided to go for just one more drive around Edgewater, and there was my mother, race-walking down the street.


I cut across a lane of traffic, made an illegal turn and sped around the block, and was able to block her as she crossed a side street. 


I got out of the car and we talked. I showed her pictures of my kids and grand-kids on my phone. She changed the subject when I asked her where she has been. She appeared to be physically well, although a bit confused, and promised to respond if I sent her pictures of the children. I verified her address (and drove past later to check for her name on the bell to make sure she was telling me the truth about living there). I hugged her when she said goodbye. It struck me that this woman who has caused me so much anger and stress over the years — whom I have imagined into such a large presence in my life — is in fact a very small, frail woman.


In the year and a half since I last saw my mother, I have sent her cards and photos, letters and updates, an invitation to my son’s wedding and birth announcements for my grandchildren. She has not responded to any of them. In the long run, studies have shown that hoarding results in unhealthy attachments to objects and an inability to form meaningful relationships with others, and if given an ultimatum, hoarders will usually choose possessions over friends and family. My mother made her choice. I don’t expect to see her again.




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