One way to end up on food stamps… *

I used to be a teacher. That is still a hard statement to write, three years after being laid off. When I was a teacher I told my high school students to never assume they knew what someone else was going through based on their appearances. Behind a person’s smile and in control exterior, he or she could be hiding some very deep wounds. I knew that many of my students were living very difficult experiences, from poverty to homelessness to abuse. I wanted all my kids to be sensitive to others before they knew whether there were problems going on people's lives or not. Waiting until you know is too late. My students generally did not think that I was including myself in that discussion because I tend to be the very kind of person for whom, based on appearances, you assume everything is just fine. While many of them knew my husband was in a wheelchair, they did not know all that I had been through with him in the four years leading up to my teaching debut.  

Three years before I met my husband, when he was a senior in college, he mysteriously contracted viral encephalitis. The disease attacked his brain stem, leaving him in a coma for six weeks. The doctors pronounced him dead twice. When he woke up, he could not move below his neck, he could not talk or even swallow. After a lot of physical therapy, he gained complete mobility from his waist up, although his speech and eye sight in one eye were also affected. When we met living in the San Francisco Bay Area in late 2001, he was a paraplegic wheelchair user, but otherwise healthy. We did most things that twenty something couples do, albeit often with modifications for accessibility. We ate out, we took road trips; we went to concerts and parties. That would change around the time we got engaged three years later. My father had just died of pancreatic cancer at fifty-five, after battling it for two and a half years. Two months after his funeral, in Oct of 2004, I was in the hospital again with my twenty-eight year old fiance fighting the severely infected pressure sore that could have killed him.

Since he could neither feel nor see the sore over the weeks it developed, the skin and tissue had turned completely black with decay and the infection even went into his backbone. By the time he asked me to look at it, the sore was the size of a grapefruit. He had to have two major surgeries to remove the infected area and reconstruct the skin and tissue there. They even chipped away at the infected bone. We called these his Frankenstein operations. Throughout our two year engagement, he was largely bedbound, either preparing for or recovering from surgery. Instead of sharing the bed we had bought for our one bedroom apartment, he was confined to a loud, sunken tub style medical bed at home designed to treat and prevent pressure sores. In addition to becoming his nurse after home care visits ran out, I was a teaching credential student and worked part time at a bookstore. We could not afford to move to a two bedroom apartment, even if we could have found one that was wheelchair accessible. That meant that for the next six years we lived there, his medical bed took up our dining room space. No friends or family ever came over to our house for dinner because there was not room to accommodate a table and chairs. While there was some embarrassment bringing people over to our cramped abode, that was hardly our biggest concern then nor would it be now.

In fall of 2008, a couple of years after we married and my husband healed up from his surgeries, I began teaching full time at a large, urban high school down the street from where we lived. A few times I ran into my students in my apartment complex. Most of the time, they were shocked that I could not afford to live in a house or at least a higher end apartment. It generally made them see me differently than they had before they knew that. It certainly did not make them think that teaching was a lucrative profession, if they had ever been under that delusion before. As my husband and colleagues will attest, I burned the midnight oil making engaging lesson plans, grading, and maintaining good relationships with my students and the adults in their lives. In addition to being a Social Studies teacher, I was also assigned to be an AVID instructor, which is akin to being a second guidance counselor for students who want to go to college, but lack the resources to do so without help. It is a lot of intense mentoring and skill building.

To say I worked hard for all my kids is an understatement. At the end of my first year, just as I had been as a student teacher, I was praised and told I was an asset. At the end of my second year, I was laid off. Since I was still learning, I know that I was far from perfect, but I was a dedicated teacher. I believe everyone from my students to parents to colleagues and administrators knew that. When my AVID students found out I would not continue to be their teacher for their remaining two years, many were upset. When my juniors found out they could not have me as their senior year Social Studies teacher, some were equally upset. A few thought something shady was going on. I will never know, but the reasons I was given for my termination did not seem adequate to me. I still had to teach for six weeks after knowing I would have no job in the fall. It was often hard to hide my emotions from my students.

Life marches on and in my case, it marched to the beat of filing many, many job applications. While I also tutored part time, I amassed good letters of recommendation and examples of my instruction, perfected my resume and cover letters, attended job fairs and professional development workshops, went to schools in person, and continued to develop curriculum for any classes I had not taught, but could be asked to. For over two years I applied to hundreds of jobs and interviewed for many schools throughout California. We moved to areas where I thought there might be more jobs and where my husband could do his stand up comedy since he was now healthy enough to work sporadically, though not a regular schedule. He still had to have very flexible hours because of his extreme tendency to get pressure sores after having the original doozy of one. He has to be able to be in bed without warning, often for very extended periods of time. Employers will not accommodate that. He rarely got paid for the hours he spent honing his comedy sets, but he loved it, had the skills, and was building a name for himself. We knew we had to be open to relocating at the drop of a hat if I got any job. That is not easy when finding a wheelchair accessible apartment is like a needle in a haystack, but we did it a couple of times. 

Two years ago, in late 2011, my husband got another pressure sore, small but vicious. It would not heal for almost a year. He was bedbound most of that time; I was a full time nurse and full time job searcher. For the full time, contract teaching positions I interviewed for, I would often be one in the select pool that was almost chosen, but not make the final cut. I would find out that I was competing against hundreds of applicants for each position. The only work in education I was able to get was tutoring and subbing. Neither ever led to anything full time. Since I was not getting work and our savings was almost gone, we ended up having to move in with my mother-in-law for six months. Once I got a long term, full time substitute position, we moved out and tried to make a go of it again. It was risky since it was not a contract position, but it was all I could get and we could not impose on my mother-in-law's graciousness any longer. It was another dead end.

By late 2012 I realized I would not be able to teach in secondary education at all anymore. My preliminary credential would expire in June 2013 and could not be renewed because I had not been able to complete my second year of BTSA, which stands for Beginning Teacher Support and Assessment. My BTSA mentor died unexpectedly and under strange circumstances in the spring of 2010. They would not give me extended time to finish the extra work that is billed as support for new teachers, but was as far from it as possible in my case. My mentor had not done any of the work he was supposed to for his part before he died, so I had to try to do his and my work, while struggling without support as an exhausted new teacher. His death happened at almost the same moment I was told I did not have a job for the following fall. It was all too much emotionally for me to finish on time. I was just trying to get through each day without crying in front of my kids who needed me to be their strength.

Last year I tried to just to get any job in retail or food service, which I had done years earlier. I was not opposed to doing that or any kind of honest work. I had worked for one bookstore for five years right after college and still had good references from it. No one wanted to hire me for those jobs anymore either, even part time. At the same time, my husband had more health problems. Several months ago, he started coughing up blood suddenly. At first they thought he had pneumonia, but it turned out to be two small lungs clots and a ten inch abscess in his abdomen. They never had an explanation as to why he got either of them. He spent a week in the hospital and came home with blood thinners, hooked up to a drain for the abscess, and shots he had to take. A few weeks later, a small blood vessel in his leg burst, which caused internal bleeding due to being on blood thinners. Another week in the hospital for him and many months more spent in bed. We had Home Care for a bit, but after a few weeks we had to monitor it all ourselves. He is still not able to be out of bed all day yet because he still has stiffness in his leg where the blood vessel burst. He had another pressure sore in there, too, which also kept him bedbound for several months. He basically has not been out of bed since we moved to Sacramento a year ago. The same was true for the year we lived in L.A.

Medicare and MediCal covered most of the medical bills but, by this point, we had no choice but to go on food stamps. Part time tutoring and my husband’s disability benefits only covered rent and (barely) our other needs. You do weird things when you have to make money stretch. There are the obvious first things you try like selling stuff you do not need that people will buy. That does not go very far though because they rarely fetch more than a few dollars. Neither of us has had a professional haircut in years, I forgo make-up and other beauty products except for special occasions. At our most desperate moments, when I would not leave the house or see anyone all day, I would wash my face and brush my teeth just once each to stretch soap and toothpaste. Yeah, ick. We never eat out or go places for entertainment. Lately, few of my clothes fit anymore because I have lost weight from stress, but I cannot afford to replace them. I have not been to the dentist in years because I have not had dental coverage and have gone for extended periods of time without going to the doctor for the same reason. When you only get $200/month of food stamps, you skip meals, too.

I had started my MA in History before completing my teaching credential because I needed to start working full time. Since I have been unable to get any full time work, I thought maybe the only thing that made sense was to go back to grad school, finish my MA and then PhD, so I could teach college in a few years. It definitely appealed to me although I worried about reports that there are plenty of PhDs who cannot find full time work. It was also risky since we had only my husband’s disability benefits coming in and, if I did get one, a full time job would be years away. Part time income and disability benefits do not go very far, but when I am not getting any full time work and my husband can barely get out of bed for years at a time, what else can I do?  We have stayed in Sacramento because the cost of living is much lower here than in the Bay Area. We pay for a two bedroom apartment what we would pay for a one bedroom or even a studio in the Bay Area. We cannot fit both our beds in one room because his bed is big and he needs a lot of room around it to get into and out of it.

Though I was accepted into the MA program, offered a part time TA position, and encouraged by my professors in my research, I was still waiting for financial aid after school started. Since I had turned in my tax information a little late, I thought it was just delayed. No, I did not get any financial aid. Since I am still paying off loans from my time getting my teaching credential; they put me on a payment plan. It is a payment plan I cannot pay and without financial aid to supplement my part time income and my husband's disability benefits, we cannot pay our bills. So here we are at the bottom of the well again, desperately clawing our way back up the rope to reach the surface. I will have to drop out of the MA program at the semester and look for just any job at all again. I hope that I somehow have better luck this time than I have for the past three years. 

The average person over sixty-five will need three yrs of long term care... my husband already broke that record at thirty-five... needing it for five years (not all in a row, but for three long chunks) and counting. We are trying to get In Home Supportive Services care for him. We have tried before and been denied because his bedbound condition, while frequent and regular, is not permanent. When he is not bedbound, he is too independent to qualify. At this point we have gone for such short stretches when that is true though. This has obviously impacted my ability to work outside the home enough so that we are not completely underwater. Since he has MediCal, if he qualifies, they should pay for someone to come out a certain number of hours a week. Would it be enough hours? How long would it last? Someone who is completely incapable of taking care of themselves in any way will get forty hrs a week of home care through IHSS. That would cover me working full time if I can get a job. If we did not qualify for enough home care hours for me to work full time, or if it only covered us for a few years (usually IHSS lasts 2-4 yrs) we would have to have a family member move in to take care of him while I work. If IHSS paid me to be the caretaker indefinitely I would be faced with giving up on any career to take care of him and, depending on the income, possibly still not make ends meet. This whole prospect is terrible for someone as young as he is who wants to and should be able to contribute to the household in his own right. As a paraplegic, he is pretty independent when he does not have other health issues going on. So this idea makes him feel like a child or an elderly person instead of a relatively young adult. Of course, he feels like that now when I have to take care of him day in and day out. And no, that is not good for your relationship.

As far as my other work goes, I know that I have probably made some mistakes along the way, but all in all, I have made reasonable, thoughtful career planning choices. I never expected to be rich and never even wanted to be. I do not even think about the American Dream of owning a home. We have one car that my husband drives when he is not bedbound. Once it wears out, I do not know how we would get another. I used to take the bus for an hour to work when I was single and I may have to again. We could never afford to have a child at this point. Most of the big dreams that couples aspire to as adults, that we are not immune from dreaming, have been outside our reach. Our main goal recently has been to get a dog as companionship for my husband should I get a full time job. How in the world did we get here though? To be in my mid-thirties and struggle to get any work at all. At this stage, I cannot even pinpoint the moment it all went downhill. Does it all go back to my “impractical” choice of college majors (History & Art History)? My “foolish” decision to become a teacher? My “mistake” of marrying a man who is disabled? I certainly hope none of these are true because then I grieve for our society. All I know is that many of my former students would be very angry to learn of my situation. And I am angrier still to know that many of them are probably much worse off than I am with far fewer resources than I have.

*  We are in no way asking for money. But if anyone knows of any jobs I could possibly do, I would appreciate a holler.