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Tuesday, December 9, 2014

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"You must have chaos within you to give birth to a dancing star." — Friedrich Nietzsche



Perhaps you know that I used to do a couple of zines. I don't make zines anymore, but I am still friends with several of the people who wrote for my zine, or have zines of their own, or both. Nyx is one of those people.

After a brief hiatus from the world of zining – she wrote a couple novels! - Nyx is back with her first personal zine. I love a good personal zine. They're like little diaries, but the pages are usually made with a lot more love. The pages of Don't Call Me Cupcake are like the pages of a black and white scrapbook. Most of the entries are handwritten, but the focal point of the zine – a discussion of Nyx's mental medical experiences – is typed in order to fit quite a bit of information in a small setting.

Nyx has been diagnosed as bipolar. It has been a struggle for her to accept this diagnosis and find the best possible treatment. While I have not been diagnoses as bipolar, I have known many people who carry around this label and have either dismissed it or made it a part of their identity. I have, however, been diagnoses with major depressive disorder and SAD (the one where you literally get sad when you don't get enough sunshine). I know a little about having to experiment with medications before finding the right one, and the desire to get off the medications as soon as possible.

Now, if you're interested in reading Nyx's story you really should write to her and request a copy of her zine (Nyx * Po Box 786 * Bendigo Central, VIC 3552 * Australia). She loves receiving mail and accepts trades in payment – as you may have noticed, she's in Australia so American money isn't going to really work for her, but you can also check out her etsy shop (etsy.com/au/shop/inkyblots)

It's been a year since I got off my meds – well, a little more than a year because I went off them before I was given the okay. It's been about a year since I stopped receiving my weekly talk therapy. Lately, not a week goes by where I don't wonder if I should start again. I wake up and there's no spark. I don't look forward to anything. I just want to sleep for weeks but my body won't let me. Thing is, I don't know how talking is out with a therapist is going to change anything. I went through at least eight different therapists (they were all students doing their internships) during my years of counseling and only the last was an actual doctor. And only he seemed to have any feedback for me that wasn't some drivel that he had obviously just read in the textbook, and he has since moved on to work at a psychiatric hospital.

I talk to Jeremy all the time about what happened and how I feel about it (outraged and disappointed, mostly). What I want is to forget and move on. Okay, maybe not forget because then I will have lost anything that I could have possibly learned from this situation: don't put your guard down, don't trust anyone, don't share too much with your family (or people you hope will one day be family) because they will use your confidences against you as weapons, don't buy extravagant gifts for others hoping to prove that you are important to them... I just want to close that door and its a big one and I don't know how.

Nyx hints that she may understand these problems. She's originally from Wisconsin, and has no desire to go back to the States. And, to tell you the truth, I'm a little bit jealous that I can't just pack my shit and go (somewhere, anywhere but here). But there are complicated reasons to why I can't leave Maryland for the next couple of years, and the not so complicated reason of I don't think I can afford to live anywhere else.

One thing that seems to have worked for both me and Nyx is art therapy. And we both kind of stumbled on it after a long battle with cognitive therapy just not working for us. My first five (or so)therapists were all about “put in the work, try changing your own behavior” which really wasn't helping while I was living in a house where I was being abused and neglected. When I rediscovered my inner artist I was so... I wouldn't qualify it as happy (I was heavily medicated at the time – on three different anti-depressants, two of which were sleep aids), but at least I had something that gave me a sense of accomplishment.

I created a couple new pieces after my success at the Art in the Round event in November, but the creative zing doesn't inhabit me like it did back when I was medicated and drunk. I make art and some of it is good, but I don't know what to do with it. I don't have any hanging on the walls in the apartment. It's all just stacked up against the wall by my dresser. Should I hang it even though no one comes to my apartment? Should I just amass this huge collection of my own art and have someone find it after my death? (cuz really, whoever finds it is not going to think they found the next Van Gogh, and it will probably all end up in the trash). What do I think is going to happen to these pieces ten, twenty years down the road? And how much of the art that I made in the last two years and gave away has already been trashed? Not that I want to be known for my art, but I created this stuff and it's a little heartbreaking to think that it will lose its appeal (or perhaps it never had any appeal to some of the people I gave it to). Should I continue to give it away and hope for the best? Or should I only sell it to people who are willing to pay something for it to prove that they DO actually want it?

There's only so much art that I can make for myself. And now it's become this 'why am I making this?' thought looping through my head that takes away a lot of the appeal of making a new piece. So I can also see how art therapy isn't going to work for everyone and why counselors don't recommend it more often. Still, it makes me wonder how helpful a therapist can be when you've told them a dozen times that you're a writer (creative) and cognitive behavior therapy isn't working that they don't suggest art therapy.

Oh! You like to write! You make zines and create stories! Have you ever painted or done any art?

Why, yes. Art was one of my favorite goddamned things until middle school! How astute of you!

I mean, seriously therapists, are you listening to us at all?

I'm not suggesting that if you are struggling with depression or mental illness that you throw all your current treatment out the window. No, please stick with it. However, if you feel like your medications and talk therapy aren't working for you, maybe the answer isn't MORE pills, but a different method of expressing yourself. If your world seems ugly, maybe you need to sit down and make something beautiful. Or maybe you just need to splash some black paint all over something and then make that beautiful. If modifying your behavior in a world of people who don't seem interested in modifying their own isn't working for you, perhaps you need to get your ass to the craft store and buy a couple cheap bottles of acrylic paint, or some sketch pencils, or whatever catches your eye.


And perhaps I should take my own advice. Because when you open my paint case, all you see is blue. I need some new colors.

Thursday, November 20, 2014

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"A diplomat is a man who always remembers a woman's birthday but never remembers her age." — Robert Frost



Tomorrow is my one-year anniversary of my engagement to Jeremy – it's also my 38th birthday.

Usually I try to do a year-in-review the day before my birthday as a sort of list of my victories. I'm having a hard time with it this year.

  • I have been with Jeremy for over a year and a half, which is a victory in itself considering how many people tried to pull us apart
  • I moved out (again)
  • I sold over $450 worth of art
  • I survived being homeless for several months (even though I always had a roof over my head, it was still a traumatic experience)
  • Jeremy became my official, paid caregiver

There should be more.

If I actually wait until the end of the year, I can add “going to Boston for Christmas.”

I bought my Greyhound tickets a couple weeks ago. It's a nine hour trip, with a transfer in New York City. Jeremy and I are going to spend the holiday with my best friend Elle, and her sweetie P.

Elle and I have been friends since I was right out of high school. The details are fuzzy now because it's been 20 years since I've been out of high school and to be honest, I have tried to block most of that part of my life out of my memory. It's not that I had a terrible high school experience. I just didn't really have any kind of high school experience and I regret that. I was raised to believe that I had nothing to offer people, that to be someone's friend forced a burden of care upon that person, and that I should just keep to myself and not make any waves. So I did.

Thing is, I look back at pictures of me and I realize I was pretty. I had/have a great personality and people did actually like me, but I was trained not to trust that. I could have been popular and dated. I could have been more average, if I hadn't realized that my family’s' feelings about my wheelchair were not the whole worlds' opinion about my wheelchair. It took me forever to come to that conclusion.

But because I didn't have any friends who actually came over to my house, and I could never get a ride to go to someone else's house (or there was the whole 'how will you use the bathroom if you go there?' debate) I was one of the first people anyone knew who was online.

I met Elle in an AOL chatroom. I met a lot of weird teenaged people in that chatroom, but Elle is the only one who held on. I've known her since she was like... 14-years-old. I knew her when she got married TO A MAN when she was not even in her twenties. We've seen each other through some shit.

And it's about time we met.

Since neither Jeremy nor I have any sort of family obligations this year (to put it nicely), we were tying to figure out some new tradition for us. I think that traveling somewhere new will be our Christmas tradition. While I have been to Boston and other places in MA (I've seen the Mayflower, but wasn't allowed to go on it with my sisters because, well, you know... cripples aren't allowed to participate in family explorations. We sit outside, out of the way), Jeremy has never been that far north. And the Greyhound tickets weren't too expensive. I do worry about having to store my wheelchair under the bus, with the luggage, but with it being holiday travel week I doubt there will be room on the bus.

But I am thrilled that I won't spend my holiday here, wishing that I was having one of those commercialized holiday meals with friends and family (though even in the past, when I was having a family holiday, I would be making that same wish in my heart). I will actually be having a big holiday meal with friends who won't yell and make me cry at the dinner table.

THAT will be the highlight of my year.

Wednesday, November 5, 2014

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These dreams go on when I close my eyes Every second of the night I live another life - Heart


(Bain À La Grenouillère Claude Monet)

11.4.14

I had one of those dreams this morning – you know, the kind where you wake up and you're crying in real life?

I dreamed that I was at an extended family function – though I didn't recognize anyone in the dream, save one. It was a reunion or something, cousins of cousins that I had no connection to but I didn't feel out of place. Everyone was happy and enjoying themselves.

We were at a house on the banks of a river. Further up the river I knew there were secluded spots, half-marshes, perfect swimming to be had. I've been there before, in my dreams. I've never been to this place in real life.

I was inside the house, looking out a French door – the kind with the white paned frames – telling my sister (the only person in the dream I recognized) how excited I was to join everyone outside, swimming. But just then a huge snake swam by. Instead of being nervous, I thought 'Jeremy will protect me from that snake.' I was happy.

Then I turned around and my sister, who was incredibly thin and fit, and wearing REALLY nice-fitting jeans, was spraying herself with some new perfume and telling me that she had just been at some antique store that morning.

For some reason this made me SO upset, and I ran out of the house (because, as usual, I was not disabled in the dream), and down this narrow sidewalk that was lined on both sides by dying, dry hedges that scraped my legs. I ran past a bunch of kids, to the corner and thought I could stop there – I could sit on the curb and be okay. But I continued on to a park where there were all these patios and pavilions. I thought, I could sit here. It's nice. But still I couldn't.

Then a woman – a stranger – came up behind me and hugged me and told me, “You need to pray.” She was loving and supportive. I went inside a building, slid down the wall and saw an old poster of the Virgin of Guadeloupe in front of me, and a huge, gaping dark pit of despair opened up inside of me and I just sobbed. And I knew that my crying so hard was like opening my soul, and it was an acceptable version of praying.

And I woke up and my eyes were wet.


4. "DEPRESSION", REFLECTION, LONELINESS-
Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving.

During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things you did with your lost one, and focus on memories of the past. You may sense feelings of emptiness or despair. “

I think I'm going through this stage. I hope that I am going through this stage because the next step is supposedly the upward turn. I'm trying to move through these stages as quickly as possible, but apparently I can only go so fast. I want to get on with life, without hoping that somehow everything will go back to the way it used to be – even though it was never good. Okay, sometimes it was good, but most of the time I was just trying to get through it. And so I am torn. Why would I want to return to something that wasn't even that good? Why would I want to return to tolerating and trying to put myself in a box so that others could tolerate me?

I'm wishing for something that only briefly existed, if it ever existed at all. I saw the way I wanted things to be in real life, but they only existed in bits and pieces, scattered throughout time. They never existed together, during the same moment. When I face the reality of the situation, I don't want to return to what I had. And now that all this shit has happened (and not happened, because it's the things that didn't happen that hurt the most), it can never go back to that level. If I was living at a 4 before I was shown the door, it's only ever going to be a 3 now, because no one cared enough to ask if I was okay.

No one could bother to pick up their phone and text four letters, “R U OK?” Because they really did not care. When my mom talks to them about it, they talk about guilt, but they don't talk about remorse.

And so I am grieving.

And I am trying to figure out how to make a life with just Jeremy (step six). That shouldn't be so difficult because he loves me and I know it. He supports me and makes me laugh. He shows me that it is possible to have a decent relationship with someone by just being by my side and trudging through this life with me. I spent a long time hoping to find someone who let me know that I mattered. It's just ironic that when I found that person who loves me, I lost 95% of the people I had hoped so much would eventually come to love me.

Step 7: Acceptance (that just because they're family doesn't mean that they love you) and hope: “You will start to look forward and actually plan things for the future. Eventually, you will be able to think about your lost loved one without pain; sadness, yes, but the wrenching pain will be gone. You will once again anticipate some good times to come, and yes, even find joy again in the experience of living.”


Wouldn't that be something?

Thursday, October 30, 2014

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"If you're in trouble, or hurt or need - go to the poor people. They're the only ones that'll help - the only ones." — John Steinbeck (The Grapes of Wrath)



It's raining here, and I have about three hours until Jeremy gets home from work... probably longer, considering he has to rely on buses – yes, two of them, with about a half-mile walk between the transfers. I mentioned that I was making those trips with him, but I quit doing that last week when the weather stopped cooperating. I've been staying home alone, and it's been okay but last Friday I had to pee so badly, and I couldn't wait. So I ended up trapped in the bathroom for an hour and a half, until Jeremy got home and rescued me. This bathroom is nowhere near as accessible as the one I had in TABCO. I about had a nervous breakdown getting onto the toilet, but it was either gather my courage and make a move or pee my pants. Once I got over to the toilet though, I couldn't get back off. There angle of the wheelchair is all wrong, and there's not much space in the bathroom to maneuver it.

Yeah, I'm still not fond of this apartment. I had a case worker (from the county, I think) come around today, asking me about how long have I been on the waiting list for Section 8, talking about finding me an accessible apartment. Asking if there were any one-bedrooms I could rent? How am I supposed to afford a one-bedroom when this place alone costs me exactly $100 less than I get from SSI every month? Where was this help three months ago when I called her organization and talked to my other caseworker (who has since left the organization), telling her that I was homeless? There aren't any accessible apartments. I can't even afford this apartment without Jeremy's help.

The case worker was here today because Jeremy applied to become my caregiver last month, took the CPR class and then here comes this caseworker saying “We have classes once a month, for free.” Telling me this after I spent well over $100 so Jeremy could take that class. Meanwhile, we are still waiting for his official paperwork, with his provider numbers on it. And this plan of care that has been submitted to the state still has to be approved before Jeremy can start getting paid. The forms saying he's gonna get paid $3.14 an hour. How is that legal? That's not the wage the nurse practitioner (from AERS) quoted us two/three weeks ago when she was here (though when I called her last week, she had no idea who I was or what I was talking about). That's not the wage that is quoted on several websites about how much caregivers in Maryland are paid.

Then there's the whole 'can't get a straight answer from anyone' problem concerning whether or not it's going to be an issue that Jeremy lives here and is my boyfriend/fiance. Because apparently you cannot get paid to be your husband/wife's caregiver, but parents who live with their children can get paid for being their child's caregiver. So sometimes it's fine if you live with your caregiver, sometimes its not. I'm not married, and never will be, but does engaged equal married in this case?

I'm dealing with three different organizations and none of them communicate with each other, and none of them seem to understand the rules because “they recently changed the rules” - you know, the mysterious 'they.'

But I can get the state to pay for my disposable diapers if I need them – I don't. And I'm really tired of these people trying to sidetrack me with what they think are shiny presents instead of helping me have someone in my life who will be around when I need to use the bathroom (rather than sitting around in my own shit until it's convenient for someone to come change my diaper). Because I qualify for 40 hours of caregiving and I'd like those 40 hours, but I need them spaced out all day so that I don't find myself falling on the floor trying to transfer back into my chair in the middle of the night because I had to pee. And I think that it would just be more convenient to have someone here all the time, who wants to be here all the time, and who just happens to need a job. Because if he isn't paid to be my caregiver, he has to be gone for at least seven hours, and that means I can't hydrate because I can't go to the bathroom from noon until after 7pm!

Like right now, it's 4:15pm and it would be a relief to use the bathroom, but nope... gotta hold it. Using the bathroom on other peoples' schedules has been the story of my life.

Not to mention I am pretty thirsty and my skin is all broken out because I don't get enough water.

Three organizations out there that are supposed to be looking out for me as a disabled individual who needs a lot of personal assistance and care, yet here I am waiting around for the next hoop to jump through so I can get the help I need.


Here, sign these forms.

Saturday, October 18, 2014

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Every unpleasant incident or temptation is a test of your inner strength. Therefore nil desperandum. March forward hero! — Sivananda Saraswati



I've had a difficult time finding the time to do much of anything these days. Jeremy went back to work two weeks ago. While it would only take 25 minutes (if that) for him to get to work, we do not have a car. Half the week we take Mobility, the other half we take the bus.

Mobility costs $1.85 for me (Jeremy rides for free), one way. If we were to use their service every day, we'd spend one of Jeremy's four paychecks just on fare alone. While Jeremy doesn't start work until 2pm, Mobility is supposed to pick us up at 12:20. Except that's just the start of the window. They can come whenever they want after that time. Sometimes they'll make you wait an hour and a half. Sometimes they will take us directly to work. Other times we have to ride along while they pick up other customers and drop those people off at their destinations. When we didn't get home until after 9pm last Wednesday (Jeremy gets off work around 5:30) we decided that maybe we should avoid Mobility on Wednesdays. A couple days later a driver confirmed that Wednesdays are one of their worst days, that everything runs late.

If we ride the bus, we both ride for free but we have to catch a bus and go all the way into the city (saw them filming “House of Cards” yesterday), only to catch another bus and go all the way back into the county. The bus from the city into the county (the 15) is always standing room only until we get to the county, then it clears out. Sometimes I have to ride backward on that bus because there's not enough room for me to spin my chair. If we take the bus, we leave the apartment at noon.

Either way, if we make it home before dark it's like we won a contest. That doesn't happen often.

But I have seen a helicopter with its searchlight on circling the next block over as we stood at the bus stop in “Spanish Town.” I listened to live mariachi type music at the bar across the street from the bus stop the night before that. I've twice crossed the spot where Poe died, and we can't walk down Broadway in front of the 7-11 at the corner of the block where the drug rehab center is located without someone bumming a cigarette from Jeremy. And you know what? ALL of this happens on Broadway, which happens to be the street that runs through the center of the John's Hopkins campus.

I don't live in the city, but almost.

When we get home I must immediately pee and have something to drink. Jeremy makes dinner; I do my online auctions and surveys. We eat dinner. If it's not too late and we will sometimes shower. Then I go to sleep.

We get up around 9 am and do it all again.

Today we are catching up on things that need to be done. As I write this, Jeremy is sawing wood to replace the big bump of wood that separated the kitchen from the carpet. I couldn't get into the kitchen without fighting against that bump for three minutes. I couldn't get out of the kitchen without almost falling out of my chair several times while trying to throw my body weight over the bump. We could have gone to the Russian Festival, but I couldn't handle the idea of getting on a bus today. We could have gone to the outdoor screening of Hitchcock's “The Birds” at the theater down the street, but I'd like to get the apartment vacuumed. We could have gone to the outdoor festival at the mall, but I'd like to get the bathroom cleaned. We missed the flea market out front because we couldn't get out of bed until after noon.

Hopefully tomorrow my computer desk will finally arrive from my parents' house. Last week my mom ended up filling her van with my dresser and some boxes, after Jeremy's friend with a truck had something else pop up. This will take forever if I can only get one piece of furniture a week.

The walls here are paper-thin. I have named the chatty man next door Charlie. There seems to be another guy living there, too. I've named him Dan, but I can't remember why. Everyone outside loves to yell. We bought adjustable screens to put in our windows (the building is about 100 years old - see above pic. The window sills don't have grooves for screens) only to discover that after a long day of baking in the heat, the half-dozen dumpsters in the alley behind our apartment smell pretty rancid. We bought scented candles, but we're also right next to all the air conditioners for the apartment building and some huge contraption that runs sporadically and loudly all the time.

But Jeremy and I are making this our home.

We can make this good. 

Sunday, September 28, 2014

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"When we meet real tragedy in life, we can react in two ways--either by losing hope and falling into self-destructive habits, or by using the challenge to find our inner strength." — Dalai Lama XIV



9/26/14 2:15pm

I signed the lease about two hours ago and saw the apartment for the first time.

I'm sitting alone in said apartment while my mom and Jeremy go pick up some of our belongings from where we have been staying for this past month and a half, and I feel shaky and weird. Not because I'm alone, but because this is it – and I don't do well with new situations.

First, let me say Thank You.

Thank You Tina, Parker and Draven for being so kind and gracious and allowing me and Jeremy to crash in your home for so long. I appreciate the sacrifices you made and the patience it took to have two additional people living in your space. Thank you for letting us cook in your kitchen and not murdering Jeremy every time he set off the fire alarm. Thank you for providing refuge in our time of crisis and for stepping up and pulling us out of a bad situation when no one else did. Draven, thank you for letting me find comfort and a place to work out my emotional shit in your bedroom.

Thank you to Julie for letting us stomp through her apartment at least once a week. And for letting us use your car, and for all the treats. Thank you for your company and sharing your life with us, and for your friendship.

Thank You to Elle (and Priscilla) for the endless pep-texts and helping me process some major bullshit. You helped me calm down and make plans for the future. You helped me find those silver linings and gave all the right responses when I was bitching it out. And, as I listen to people screaming outside, I realize that there;s probably a lot more bitching to come. (Why is that fool so loud? I guess he's taking advantage of the chance to use his outside voice.)

And while she will never read this, Thank You to my mom. She was the one family member who did not turn her back on me or abandon me. She continues to help/support me on this journey and has done her best to be a positive influence.

Lastly, Thank You to Jeremy. As long as I can snuggle next to you at night I know I will be all right. I love you.

Okay, now that's out of the way...

The apartment is nothing like what was pictured in the brochure, but it will work. It's small, but probably around the same size as Tabco. I'll know better once the furniture is in. Unfortunately, Big Len is off all this weekend and Monday so it seems unlikely that we will get any of the furniture until next week. Right now we will make do with the air mattress and my drop-table that my mom brought from her house. The bathroom is tight with my motorize chair. I haven’t actually tried to transfer yet, but I think it will be possible. It has to be, so I will work on it until I can do it without fear. We have a dishwasher, which is a first. But the microwave is above the stove, so I can't reach it. I can hear my neighbor talking through the wall, that's going to take some getting used to. Thankfully I somehow I learned to sleep with the television on. I think that skill might come in handy here.

I've already decided to remove the closet doors and the doors on the vanity in the bathroom. I'm putting Spot's litter box in the vanity. So far we've found a penny and an earring (some probably fake diamond stud). There was a whole page about bedbugs in the lease. That can't be good, but they had them at Tabco because people are dirty slobs. My wheels make it difficult for me to be messy. If there's stuff all over the ground then I can't get around. I can only reach a small portion of any environment, so I like to have things in their places.


But this is it – for the next year and I'm not excited at all. I wanted more than this in my life. I mean, I never thought I would find someone who loves me like Jeremy, and I wish that I could just be grateful and blissful about that dream coming true. But I'm sad, and... I'll feel better in a couple of days. I just need to settle in. 

(9.28: Doing better. I still have about 100 inner freak outs a day, but I'm not bursting into tears. That's something, right?)

Wednesday, September 17, 2014

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"I have learned that if you must leave a place that you have lived in and loved and where all your yesteryears are buried deep, leave it any way except a slow way, leave it the fastest way you can. Never turn back and never believe that an hour you remember is a better hour because it is dead." — Beryl Markham (West with the Night)

Took a trip to the doctor's office... well, okay... it's a clinic. I have medical assistance so my general practitioner is based in a clinic at a local hospital. It's a learning facility, so doctors can stay there anywhere between six months to two years. The doctor I saw on Monday was new to me, new to the hospital she reminded me twice, and I will be fine if I never see her again. She is not the doctor assigned to me, but if I had waited to see my assigned doctor I wouldn't have been able to get an appointment until mid-October. I had to wait two weeks for this appointment, as it was, and when I called I was kinda in crisis.

I went to see about getting a mental health therapist. I was having a very hard time and wanted to explore my options when it came to not feeling so sad/depressed/dark/hopeless/desperate. To be honest, I also was hoping for a sedative, but the doctor refused to prescribe me anything (even though I scored the second to lowest on their weird depression quiz). She told me to call and make an appointment to see a therapist, which is what I expected. But still, it's already been two weeks. How long will I have to wait to see a therapist? I called the place and left a message, because for some reason, even when you're feeling mentally unwell you can't talk directly to someone who can help – unless you call the suicide prevention hotline, which I have not done.

I see the light at the end of the tunnel, and I feel like I should be excited and happy, but I'm not. I'm still waiting for everything to go sideways again. I got my move-in date for the last Friday in September, which is less than ten days away, but I don't think I will feel anything except relief and only after I have spent the night in the apartment and not been molested by roaches. At this point, I don't know if my rent will be “prorated.” It would be nice to just take care of October's rent and be done with it. We also have to figure out how to get electricity in the apartment, since that's not included.

Jeremy has been trying his best to get me excited. It will be great to have our own space again, but I can't work up any enthusiasm. I'm stuck in a rut. All I can think of is how once I pay my rent I will have $100 to get through the month, and my cell phone bill will take that. I gave away all my household items when I left TABCO, so I have to find a way to get new (or used) pots and pans, a coffeemaker, a dish drain board, and all that other stuff that you say, “I thought I had...” and you kinda need it right then. Plus my food stamps will be gone by the time I move, and they don't hit again until the 6th. I know I am not the only person who needs stuff, and that millions of people live from paycheck to paycheck and go without. I know I can do it, it probably won't even be all that bad, but my inner spoiled princess is being smashed while she screams, “But I want to see the ocean! I want to do something fun!” Sorry, Princess, you've gone years without seeing the ocean, what's a couple more?

Then there's the whole actually moving all my shit again. Because my move-in date is a Friday, I can't even get my bed to the apartment until Sunday (at the earliest) because I will not go back to my parents' house when Big Len is home. I will not endure that hostility. I will not provoke that rage. And considering the fact that Betty got junked, we don't have a truck to transport the bed. I may have to find the money to rent a U-haul, which yes they claim to only be $19, but it's also 79 cents a mile, plus gas.

My mother has already started packing my room. She gets boxes from work and has packed my clothes and knickknacks. She's trying to be helpful. She's finally realized that I cannot come back. Not until she's the only one still living there, and by then I hope that I won't still be in this state. There must be somewhere cheaper (without the crazy drug crime) to live than Baltimore. Though, if my mom were living alone, I wouldn't be above going back to live with her and make sure she's okay. Modifications would definitely have to be made. That's been the long and terrible battle of my life, and I've lost almost every single round. But if Big Len's not there to break everything (like my shower chair, like my portable ramp) and throw all my adaptive equipment in the trash, then there might be hope.

The doctor also said she was going to refer my case to a social worker. I suppose that I should call her but I don't have the energy. After contacting so many agencies and finding them to be useless, I don't know what this social worker can offer me. Especially now that I have already found an apartment. But I will call, because maybe there's... something... a Uhaul fund. A Mr Coffee fund. Energy assistance. Supplemental monetary assistance. Something.


Though something tells me that I'm gonna end up doing this on my own (with some help from Jeremy) because that's how it's been thus far.

Wednesday, September 10, 2014

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"At the end of life we will not be judged by how many diplomas we have received, how much money we have made, how many great things we have done. We will be judged by "I was hungry, and you gave me something to eat, I was naked and you clothed me. I was homeless, and you took me in." — Mother Teresa

It's been a while since I posted anything because that thing I feared was going to happen – it happened.

I vacillate between telling people I'm homeless, or “between homes” right now.

It's been almost a month since I fled from my parents' house. I woke up one day not realizing that would be the last time I slept in that room. All that planning I did, all that saving, I'm glad I started when I did. I didn't have a place lined up when I finally left my parents' house, but I was hysterical and heartbroken and incapable of taking any more abuse. So we packed a couple of bags, and the cat, and a friend came to get us.

I haven't had to sleep outside. I haven't had to seek out a shelter, or a mission, or a soup kitchen and for that I am grateful. This could have been a whole lot worse and so I shy away from claiming homelessness, but I am currently without a home of my own. Hopefully that will change in a couple weeks. Hopefully I will be signing a lease by next week. I'm nervous as hell that this is going to fall through. It took weeks for me to find a place that was not only within my price range, but also accessible. I need to see the light at the end of the tunnel.

After making at least 50 phone calls, Jeremy and I did manage to find two accessible and affordable places. I also called the Department of Disabilities, the IMAGE center (an organization that supposedly helps disabled people live independently), the caseworker who came to my parents house in the Spring to access what kind of money I needed to make my life easier (who then referred me to the woman in charge of housing who I have yet to speak to, after two weeks of leaving messages and returning calls), social services and Catholic Charities... none of which helped me. The woman from the IMAGE Center even got online and did a brief search that came up with zero results. Instead of being outraged, she brushed me off, telling me that she would print out some information of senior communities that sometime take disabled residents under 62. She didn't care when I told her I called most of those places and they had 3 year waiting lists for those under 62-years-old.

I've been to social services and talked to their housing department. I filled out paperwork to see if I'm eligible for renter's assistance but that takes 1.5 years to go through. I filled out paperwork to see where I am on the Section8 wait-list because that takes 7 years and I'm sure I've been on it for at least two years.

I had one organization tell me that there are shelters for disabled people, but this person could not tell me which shelters or how any of them worked. I'm pretty sure shelters where I would be able to use the bathroom and get in an out of a bed are the stuff of legends. It's more likely that I wouldn't be able to have Jeremy help me; that I would be on my own, without a caregiver, which means I wouldn't be able to get on or off the cot/mats on the floor. I wouldn't be able to use the bathroom, or get dressed, or shower. My motorized chair would be in danger of being stolen.

And while all of this has been difficult, I think the worst part of this whole situation is that no one in my family cares (except my mother). I haven't heard from any of them, including my two sisters. And I can't help but feel that their lack of support or concern means that they think I deserve this. But I don't know why they would think that.

Every week it gets easier. I was crying hard, all the time, for the first couple of weeks. I felt this deep, soul-sucking blackness inside of me. I felt like worthless trash thrown into the street. Yes, I left. It was my choice, but the amount of abuse that I was suffering was making me suicidal. It sickens me to think that anyone in my family believes that I actually deserve to be treated that way. And so, every week it gets a little easier to see a future without them. Because a good holiday celebration or a great piece of birthday cake cannot balance out being told that everything you do is “too little too late” by someone who sits on his fat ass and does nothing at all (except make people miserable), who can't see me for the wonderful, giving person that I am while I was trying SO HARD to make him happy. And anyone who wants to stand in silence when my mother asks, “Why do you hate your daughter so much?” and he answers “I don't know” stands with him.

It's been hard for me to see out of the darkness this past month. I'm a logical person, trying to apply sense to a situation that cannot be understood. The only thing that I can conclude is that I will never be a human woman to many people, because I am disabled. And some of those close-minded, mean-spirited people just happen to share my DNA. I am officially estranged, but I will find people who do care, and who know what it is to love, and I will make my own family. I will start with Jeremy and I will go from there.


If you could keep me in your thoughts and prayers, I would appreciate it. I'm still pretty scared and nervous. Any positive thoughts will help.