The Disadvantages of Being a Blank Canvas

I used to write poetry, as I suppose many emotionally-wrought young adults do. I remember how intense the words felt, how little I had to try – the release of my pain, my frustrations, my truth just spewed out of me.

I decided to read my poetry today. I think most of it was from college. I remember how soothing it felt to put my emotions on the page. But my goodness, it is truly awful shit. My metaphors are painfully melodramatic. I wrote about things I only understood from movies. I was tangential – though that hasn’t changed.

Since I’ve been on medication, at least when it works, my creativity seems to evaporate. When creative opportunities arise, my mind is blank.

Those with bipolar I often say that medications drain them of their creativity. And many of them refuse to take medication because they fear losing that integral component of themselves. The mania, for many, has helped define their selves, their passions, their art. I have bipolar II so it’s not the same thing in terms of hypomania. However, I do believe my medications dull my mind.

I kinda miss it: the intensity of it all. I think it was indicative of my resolve to find a way to still get what I wanted. I was yelling then – in my behavior and actions: “Someone listen. I am in pain and it is killing me. I want things like love and laughter and all I feel is rot. And I fucking deserve those things. My gentle, loving soul is slowly vanishing and I don’t know how to stop it. This is bullshit and it’s not fair!” I was angry at this disease and how it punished and controlled me. I just wanted it to go away. I’m still angry I suppose. Frustrated by the damage, the uncertainty, the lack of control.

But there is a sad acceptance nowadays. Maybe after medications, ECT, countless attempts at different therapies, efforts in life changes (in diet, exercise, sleep,) I’ve come to a melancholy understanding of the possibilities in my life and the restraints that come with the mental illness that will always be a part of me. Funnily enough, I think I know less about myself now than I did then. Back then, even with all the self-hate and self-harm, I still felt like I knew who I was underneath the depression. But maybe, living so long with the depression, it had come to define me, mold me, make me. But now the depression has lifted and I am, much like my brains’ creative canvas: blank.

 

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Fighting Depression: A Sword Duel With a Wooden Spoon

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Wooden, Silver…You get the idea.

Well, it’s been a few weeks since the tapering debacle. Since about Thursday, I was feeling like I was coming back to “normal.” I will say this past episode really did a number on me…

and it reminded me of a few things:

  • medications are not cures.
  • in terms of mental illness, healthy sustainability, consistency, or complete “repair” are never viable realities.
  • patience is necessary for managing mental illness. and i am shit at it. too bad they don’t have a drug for that.
  • medication is a delicate dance with brain chemistry, and you can only take one step at a time. each time we try to change a med by lowering or upping, i can only do one, and have to wait weeks to see if it works, or if side effects pass or stay. if the med is not working, that means i have two to four weeks of feeling like shit, hoping that maybe it will work. and if it doesn’t, i try a different one and wait.
  • memories may fade, but the feelings of pain you feel from depression never leave you and you never really feel safe.
  • bad habits never truly die, and they feel so comfortable, right, and easy. even when you know it’s wrong, it still seems, at some place in your brain, so very right.
  • and so, every minute of every hour of every day is a fucking testament to will power, resistance, and opposite action, and it’s exhausting.

the scariest part about this past month was how low i got. the thoughts i had. the close calls. being ripped from my path of self-healing was brutal.

i wonder if it’s because my brain has gone to a very deep, dark place in the past. and so when i get depressed, it goes back there. like, if i had never gone that low, then my brain wouldn’t get there right away. but i think of it like a neuro “path” has been burned to that area of thinking in my brain, and so now, when i get sad, instead of just going to point A like a typical sad person reaction, my brain goes all the way past to point B.

and point B is a volatile, dangerous place.

i will say the fact that i know it’s my brain and not “me” really shows the progress i have made and what a lifesaver having this past year has made. because i now know what normal is, and so i know when my brain isn’t at its’ right chemistry. i think it’s what allowed me to reach out and ask for help when in the past i would have spiraled alone.

still, it didn’t matter because as we all know, when your brain tells you stuff it feels real and right and makes sense so it’s really difficult to fight it. it also makes the bad decisions even worse since you know you can do better. it’s a fucking temptress. (what is the male version of that word – tempter?)

i’m just a jumble. i feel great for 12 hours and then i panic and want to drop everything and disconnect. i use my dbt skills and get myself to do something i’m afraid of, and then 5 hours later, i’m sitting there and i just can’t use them. they seem moronic, useless, and dumb.

yesterday, i sat across from my psychiatrist and i talked. i gabbed, really. it might have been the caffeine, but at the end i said to her, “so it sounds like i’m back.” she agreed. and then i got in the car and started to drive. five minutes later i was crying. i got home and didn’t leave the apartment, answer any phone calls, clean, or doing anything positive for myself.

i’m either having mood swings right now as i recover, or i get excited that i’m doing better and am self-sabotaging to protect myself. or both.

either way, i don’t know what to do. or maybe i do, but i can’t. or maybe i can, but i don’t want to.

Depression and Hope Are In the Ring: Who Will Get the Final TKO?

i went to my psychiatrist yesterday. i told her about how the tapering seemed to throw me into a depressive episode and since i’ve gone back on, i haven’t been the same and i have been blaming myself. i’m worried i’m somehow allowing this to continue, that i’m not working hard enough. she basically told me that that is exactly how the depression would make me feel. evidently i’m not going to be able to taper just yet and when i do it’s going to have to be slower. and it’s not a good time. but when will it be a good time? anyway, so she put me on some short release tablets of the drug i’m currently on. kind of like a short term coffee high to get me through the morning and afternoon until i finally balance off. if that doesn’t work i guess i’m going to go up on that med. i’m really scared because i just don’t think i’ll ever be safe or ever be able to fully relax in how i feel. and i’m exhausted. and i’m bored with it.

i wonder a lot lately if i had just tried harder in dc if i could have prevented the last four years. if i hadn’t called uncle and moved home maybe i would have eventually found the right psychiatrist and maybe changed my job or something. and then i wonder, could i just force myself back? i mean, that’s what i did with the job in santa cruz, but what if i went back and even if it was awful, did it anyway? even if my bad habits came back, pushed on like i did for almost 25 years anyway. at what point did i become too weak to suffer?

maybe i’m not meant to find peace. maybe i’m not meant to live long, or have a boyfriend, or a job that i love, or feel secure or sexy or happy. maybe i’m meant to be sad and to give up. the whole point of coming home was to have the breakdown and then go back. and somewhere along the way, i didn’t go back and that breakdown took something from me. it just changed me into a different person. someone who just can’t. i can’t lie to people around me, i can’t admit my destiny is for shit, i can’t allow myself to lose my hope. and i just feel like i’m being pulled in both directions – the depression and the hope – fighting for me, plying me with their charms.

oh shit. i’m still depressed.

Finding My Safety Raft In An Unexpected Depressive Storm

Disclaimer: Possible triggering ideas in this post, specifically in regards to suicidal ideation and self-harming.

A few weeks ago, I attempted to withdraw from one of my medications. It doesn’t do anything for me now, but it’s a benzo that a horrid doctor gave me over a decade ago, and therefore my body is completely addicted. My psychiatrist and I have thought about weaning off of it for a long time, but wanted to make sure I was stable before endeavoring to mess with my system.

I started by dropping my dosage by .25 mg. I wasn’t naive enough to think there wouldn’t be withdrawal symptoms. I was prepared for tremors, sleepless nights, nausea. I was even prepared for a bit of mind scrambling and an increase in anxiety. What I was not prepared for was the onset of clinical depression. It’s been over a year now since I have found medication to stem the depression, but I knew it was there after about two days. I was exhausted, lethargic, and one day I drove to CVS and I couldn’t get out of the car. Everything became overwhelming and I found myself in corners of rooms rocking myself while crying. Most of my DBT skills went out the window (which is actually funny because it’s really intended to be used when people are really in the thick of things but whatever.) I didn’t have the wherewithal or desire to use them. I stopped going to the gym and my diet became unbalanced. My nightmares became intense and shadowed me all day. Talking, thinking, moving – everything left me feeling like it would take days to recover.

I was terrified. I couldn’t tell: was this the meds or me? Was I exacerbating the withdrawal? Feeding into it and falling down into the ease of depression I have been fighting every day for almost two years?

I gave it eight days. It only got worse. And then I went back up on the meds. But I wasn’t feeling better and panicked again. My doctor assured me it would take a while for my brain chemistry to get back on track. I was scared because all of my habits I have developed over the past year had gone out the window. I think it freaked me out not only because I didn’t know I could get them back, but also how quickly they had stopped. I’m always aware in the back of my mind that my medication might not last forever. As has happened in the past, sometimes meds just stop working. I was so disappointed and frightened at how, when I started to feel depressed again, how quickly everything I use to handle daily life just felt too exhausting to use. The depression had not weakened, it was merely in a medical coma and when it awoke, it was as strong as ever.

But I hoped for the best, and started to notice I was slowly getting a little better each day. Even though I felt like shit, I still made myself leave the house once a day. It didn’t matter if I just ran an errand like going to the bank or picking up mouthwash; I just needed to leave the house. I drove to the gym. I didn’t go in except once, but I still tried to get there. I didn’t miss my appointments.

Two days ago, I just jumped into a spiral of despair. I wouldn’t go to London; I wouldn’t ever get a job; I wouldn’t ever get to a point where I would be comfortable with a man and deal with my assault; I would never be able to find a life with the pieces I believe I want. I got home and put together a kit of everything I might need for the ritual. I was so hesitant to call anyone – especially my family. I didn’t want them to start thinking I was back to my old ways after spending so long trying to earn back the trust I was better and could and would take care of myself.

And then I just stopped for a second. There was something inside of me that knew this wasn’t me and that I didn’t want to, no matter how much my mind was telling me to.

So I called my brother. I told him I needed his help, I was scared, and I couldn’t be alone. He came and listened, and we talked. Something about being with someone who is stable felt normalizing. And I realized that this was different. I got out of the house every day. I made appointments on time. I called my therapist a few times while panicking. And at the end, when I could have made a destabilizing decision, I asked for help.

Yesterday I had a training session in the gym. I was so scared that I had turned into a lump of mush, but after, in my soreness, I felt strong. I embraced my screaming shoulders with happiness. I came home, showered, ate, and watched TV. I still overate later in the night but decided that I would have to figure out in the next few days how to work on getting back to my old routine given my new instructions with my sleep.

I fell into depression this month. I tripped and stumbled down some steps and was facing my irrational demons. I was weakened and at times, fell into old habits. I cried at the terrifying understanding that I can never truly be safe or out of the woods completely. I even had a moment of suicidal ideation that felt, at the time, so deeply right.

But I kept going. I did what I had to do. And I reached out for help. I am still scared and know I’m still not myself. But for now, I feel safe. Weakened but safe. Because I made different choices, even when I didn’t want to, and I saved myself. And I hope to do it today. And that hope, no matter how small it is, doing something today reminds me that I haven’t lost the battle yet.

Who Am I: A Life With Fleeting Memories

I hate filling out medical history forms. I don’t remember family history, or what year I saw a doctor, what medications I have taken, surgeries I have had.  In the past few years, now that doctors have online patient portals, I can look stuff up online, but otherwise, it’s a call to my mother for a history of all things about me, my body, and my mental health. As I was filling one out yesterday, I became incredibly agitated and sad. Then this morning, I had to go over dates for my upcoming move to London. I had prepped this stuff when I thought I was going last year, and while everything felt familiar, it was annoyingly still new. The dates were on the tip of the tongue, I just couldn’t pull them out.

When I was prepping for ECT a few years ago, one of the possible side effects was short-term memory loss. For a lot of my friends, this seemed like a scary prospect: to not remember what happened the day before or even a few hours ago. For me, I was at a point where I didn’t feel like I was creating memories anyway, except for maybe sad ones that involved me lying in bed, angry at every breath that continued to push its’ way in and out of my diaphragm. I went three times a week for about a year. A few months in, we noticed some changes. I might ask a question and then half an hour later, ask it again. This was usually on the days of the treatment itself so we would laugh it off. As for the blur of memories of that year, it wasn’t like much was happening. Monday, Wednesday, and Friday, my mom got me up early, I changed my pajamas into other sweat pants, and got in the car. I had the procedure, slept in the car, got back home, usually slept some more, and then watched tv until I fell asleep. I’m not sure what I did on the days when I didn’t have the procedure. I might have walked the dog, or driven in the passenger seat while my mom ran errands. I realized that the tv I was watching, the books I read, probably would blur. Conversations with my friends probably drifted off after a day or two. I probably should have kept a diary so I could reflect on it later.

After about a year of treatment, I was feeling better and I decided I wanted to go back to the world, happy and healthy. I took a job a few hours from home. It wasn’t what I wanted to do, but it was something I was familiar with and good at doing. I continued to receive treatments every couple of weeks, though I’m not sure how I did that, since they didn’t offer them on weekends. Evidently, my memory got worse. My mom told me I would call in a panic forgetting where I placed a file on the computer. I don’t remember this but that’s what she said. And I was starting to get depressed again. It could have been because I didn’t really like the people, the town, or the stress of the job. I knew I was doing well and that people liked me, but I could feel the depression coming back in. I started missing more and more days, until it became weeks. I finished the project and quit. I came home to continue doing treatments full-time. It was at this point, the treatments stopped working and I was re-diagnosed with bipolar II.

But in all honesty, the memories I miss most are not from ECT. Most of my childhood through college, and then my seven years in DC, a year in Berkeley, and the two years after the year of ECT. So yeah, pretty much my life. Sometimes I think I have a memory when I look at a picture, though I’m not sure if I’m just looking at the picture and envisioning a memory from it. Sometimes I tell a story about my childhood and a family member tells me that it was actually them that did that or it wasn’t like that or that never happened. I remember specifically horrible times. When I was bullied as a kid, the times I have been sexually assaulted, some of my self-harming episodes. Mostly, I remember feelings. Like when I think about someone, I get a feeling inside. Or when I think about a time in my life, I have a sense of how moments made me feel. My friends might describe a night in college when I did something particularly ridiculous – I usually don’t remember the moment itself, but I can remember that feeling of doing something ridiculous – the high of making people laugh and feeling free to be myself.

I don’t remember a few weddings – just what others have told me. I barely remember my best friend’s wedding and I was the maid of honor. I recently caught up with someone I haven’t seen for five years and evidently, I did some amazing things to help her while I was in DC.

I also don’t remember things people have told me. Stories of my grandparents, family history, names of people I have met, people I have had coffee with, conversations I have had with people, things I have said or done.

I joke that my best friend and my mom are memory banks for me. I call them sometimes to ask if I went to something or if I liked something. If I had a feud with a certain person or why we no longer kept in touch. Sometimes I will complain about something from my childhood and my mom will tell me that they did actually do something or it wasn’t how I remember it to be.

I laugh it off, but the frustration and irritation lingers and grows. I not only feel I have lost something precious, I feel bad for my friends. They had me in their life-changing moments, and I can’t even remember the speech I gave, or what conversations were had. I know I was there, but can you really share a moment if you can’t remember it? For the most part, I have tried to take this all in stride. I believe the depression blurred a lot of my past – making my memories lose focus, and become distant until they faded. I don’t know if the ECT has anything to do with any long-term memory – they say it’s only short term. For most of my life, we all blamed it on me being an airhead – and that is true. Sometimes I really am listening but almost too hard and I don’t actually absorb the information. I avoided pictures most of my life because I hated looking at myself so I have few pictures to help me store my memories. I rarely kept journals, only when I was really depressed, and in college, I evidently expressed myself through poetry which I can no longer access because Microsoft has some shitty software problems. Most of my time in DC, I complained that I didn’t want to remember – but now there are documents I created, bills I helped fight for, and I can’t even remember unless I look at the date and know I was working at the organization at that point.

I tell people it was all worth it. That maybe that was the sacrifice I had to pay. Maybe it was my brain’s way of protecting me. Or maybe it was depression’s way of punishing me. Maybe my brain is picky, and only maintains what I need to know when I need to know it. Or maybe I’m a free spirit and I live in the moment or some bullshit like that. But the truth is, I miss my memories – good and bad. I feel so empty sometimes, just a body of emotions. It’s embarrassing to look through my contacts and not remember why I know someone, or worse for someone to contact me and I have no idea who they are. I hate having to rely on others for my memories. It’s not that I don’t trust them, but memories are subjective. I take what they say as truth, but deep down I still wonder if maybe I do remember it correctly – and they just remember it their way.

I’m about to embark on a few intense adventures and while self-doubt is a learned trait, I think that my memory loss scares me as well. What if I don’t remember how to write as well? What if I don’t remember what I have learned, or worse, what I am going to learn? I have to write a dissertation, read tons of books. I will be living in a fast-paced environment. It will be an intense, fast year of my life and what if I don’t remember it? What if all the medications, the depression, the ECT – what if it has changed my brain chemistry and I have limitations now that haven’t been tested but I will soon find out through my failure – either at a job or in school?

Not everyone has a rock solid memory bank. While a lot of people I know do remember quite a bit, I was talking to my sister the other day about our childhood. I mentioned that I can’t remember us spending time together growing up. That maybe I was wrong, but I just remember her being gone, and by the time my memories do start, she was already disconnected from the family, out of the house. She told me she doesn’t remember much of childhood at all, so she can’t really tell me if we did spend time together or not. She might remember a memory here or there, but not much. She didn’t seem upset about it – I suppose she knows the main components and remembers what she needs to, and I know she remembers other aspects of her life. So maybe we all just blur parts of our childhood.

But it makes me feel like a liar. I tell a story and I wonder if it’s the truth. I try to express a relationship to someone or to explain a person’s personality and I wonder if I should be trusted. I know at some point, I knew the time and circumstance for each of my self-made scars. Now, I only remember a few, and I don’t even know if I’m right. I’m not planning on having children, and I suppose maybe I will need to get over my self-hate and start taking more pictures of my life. I don’t know if I will never be able to really store information long-term. I don’t know the implications in the long-term, devices I may have to employ, the radical acceptance I may have to have.

I hear people talk about the time when they were five, and I crave to tell a story as well. I keep a general diary card for DBT and my coach will ask what happened that day to make me feel a certain way or give in to a certain urge and I can’t remember. I suppose I could keep copious notes, that’s probably the solution, but I’m bitching now, so no need for thinking rationally.

What I do know is that for the first time, I am angry about it. I suppose that is a good thing – wanting to be in a place in life where I care about remembering. But while I believe we are who we want to be, I still think our past plays a large role in who we are. And if I can’t remember my past, then how can I know who I am, what I have become, what I don’t want to become, and who I strive to be? I feel like an outline, a resume of facts and vague overtures of experiences. But at my core, I feel empty and for some reason, a liar within my own body. People see me but I feel paper thin, merely an echo, an imprint of the experiences that have formed me, but which I cannot remember.

Sitting Alone with My Loneliness

I remember how lonely my depression was. Not just because it often led to cutting people out of my life to “spare” them a burden they couldn’t understand and would never be able to fix, but also because my depression craved to be alone with me, a captive and her abductor. Still, having someone to turn to, even when I resisted, felt sometimes like being saved – whether that person knew it or not.

There were times, sitting in my room, questioning the continuance of living, when someone would happen to text me a message telling me they missed me. Or I would listen to a voicemail (I generally didn’t pick up the phone at that point,) and hear such happiness in a friends’ voice. I knew that even if they couldn’t understand, there were a few people that if I would have been brave enough, would have come to sit next to me or take a walk with me – if I had only been strong enough to ask for help. Just knowing I had that support and that people loved me, gave me enough strength to give myself another day.

I suppose, even though I detest asking for help, I have always felt reassured knowing it was at least there. I never really believed people liked me and therefore would want to help me, given how many times I was discarded growing up. But by college, even though I kept my friends in the dark about the details of my sickness, I knew they were around and no matter how much I wanted to hide in bed, they would eventually come in and drag me out. When I came home after my breakdown, my mother was there for me, checking in every day, sometimes to listen, sometimes to get the wrath of my anger – but just knowing she was there, was a safety against being completely enveloped by the depression.

I have to say that my doctors’ support has also given me the protection and strength I have needed at times. Having people around me that believe me and more importantly, believe in me, gives me strength I never knew I had. Sometimes I worry that I depend too much on this support, but at this point, I need it too much to even think of letting it go.

I look around at others and most of them have someone nearby to lean on, to tell their stories – both important and inane. To get them out of the house or take them somewhere that maybe scares them to go alone. This could be a close friend, a neighbor, a boyfriend, or a husband.

As I have been preparing for London, my mom and I are trying to adjust our relationship by slowly pulling apart. If we don’t start now, I fear the intense change could be devastating for both of us, as we have become tethered quite tight in terms of dependency.

I attempted to withdraw from a medication last week and fell into a horrible place. They do always say side effects can include depression and suicidal thoughts, but I suppose I was expecting tremors and insomnia. I went back on the drug – I guess while it was small, having an addictive medication in your system for over a decade takes a long time and it looks like we are going to have to break the dosage decrease down even further. Still, while I have gone back up, the side effects still linger. I’ve been quite sad, thoughts appear I haven’t had in almost two years, and I find myself unable to leave the house, or do the self-care I have come to regard as a daily lifestyle.

And last night, as I sat against the wall, unable to sleep, crying because I just felt so weak, I realized how alone I felt. I don’t have a friend I can call at any hour. Most are married, some have children, and jobs they must be awake for every morning. My mom is out of town, but honestly, we are just starting to change our habits, and I don’t want to fall back to where we were and have to start over. My therapist is amazing and will arrange 15 minute calls to just let me vent and panic on the phone, which at this point, is what I really need. But I have to call and leave a message and then she gets back to me and then we arrange a time and by then, I have gone through so many thought cycles, I don’t even know what I’m feeling by the time I reach her.

It’s time like these that the loneliness aches so terribly. When I realize the difference a loving husband or boyfriend could make. Even just someone to hold me or distract me. I realize that not having developed a group of friends in the past five years has left me so vulnerable and alone. I literally have no support net to fall back on. I go through my rolodex of possible help in my head, and come up blank. Last night, as I sat there crying, I realized I was more than lonely, I was alone. Alone with my thoughts which are no longer completely my own as my brain still adjusts back to my medication. And it terrified me.

I Couldn’t Let It Go: Be The Match and My Mental Illness

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(Unless you are on disability or take certain medications for mental illness…)

 

Remember when I tried to give bone marrow cells and they said I was disqualified because I was on disability. I wrote about how angry I was and how I am so tired of stigma. Well, turns out…I couldn’t let it go. It’s been a few weeks, but I have been spending time thinking about shame, guilt, and accountability. So, I decided to write and mail this letter. I know that no one will read it, no one will respond, and no one will care. But I wrote it anyway. Because I care. I share it with you because I hope that you care, too.

Also, if you are not on disability, and do not take Lithium, are not diabetic, have HIV/AIDS, (and there might be a few others,) please register to be a bone marrow donor now at BeTheMatch.org. As I say in the letter below: They may take away my right to give, but at least I can help those patients who are dying by getting others to give. Patients shouldn’t suffer because of arcane policy decisions.

To Whom It May Concern:

It has taken me a few weeks to decide to write this letter. I suppose I was trying to evaluate my personal shame and the errors of your organization. However, I think it is important for you to know what happened, why it was hurtful to me and your organization, and what remedies you might consider.

My father lost his arm when I was nine years old. When I was 15 and legally able, I began to donate blood on a regular basis. When I found out I had a high platelet count, I started apheresis. In 2010, at the age of 28, I added myself to the “Be the Match” registry.

Since I was nine years old, I have suffered from depression. In 2010, when I signed up, I was working, but a mess. Just a year later, I had to quit and move back home because I was so ill. However, in the past year and a half, I have found proper medication for my illness. I have a support team of specialists and I work hard every day to make my life better. I am, for the first time since I can remember, in a strong, happy place and while I am not ready to go back to work quite yet, I am ready to start helping others.

A few weeks ago, I received an email informing me that I might possibly be a match! I went online and watched the videos. I filled out my questionnaire immediately. It should be noted that nowhere on the questionnaire did it say what medications would disqualify me, nor did it ask if I was on disability.

I decided to call the hotline to ask why you doing more PBSC now. While on the phone, the woman was polite and friendly. She suggested we review the questionnaire while I was on the phone to save time. When she asked me about my medications, I told her that two were for my depression. Well, to be specific, I unfortunately told her it was for bipolar II which very few people know of and often associate with bipolar I, which is incredibly different. In simple terms, I have depression but need different types of drugs to impact my brain chemistry. Her tone changed: “Well you can’t give if you take Lithium.” She was looking at my questionnaire, with my list of medications, but still felt the need when she heard I had a mental illness to throw out Lithium.  At this point, she became quiet and terse as we continued to review my questionnaire.

This made me incredibly nervous which made me feel the need to validate myself. I told her that I was doing really well, and the best part was, I didn’t work, so I could be there anywhere at anytime! She asked me if I was unemployed and living with my parents or if I was on disability. I told her that I had finally moved out since I was doing better, but had started to receive short-term medical disability for the past two years to help compensate until I could work.

It was at this point she informed me that because I was on disability, I was unable to give. I told her that if it had to do with liability, I would be happy to sign a document declaring I would not sue. I would also have my psychiatrist agree to monitor me or write a note attesting that I was healthy enough to deal with the side effects that I know the shots can give. It wasn’t that I was depressed, though she made it quite clear she was not happy about that. It was because I get a small amount of money from the government every year. When I signed up in 2010, if I had given, I would be more concerned about my mental state than I am now. And yet, because I was working, I would have been able to give? If I was just laying around at my parents’ house, living off of their food and money, I could even give, but because I was trying to be more independent, I was being penalized.

She told me she would “do me a favor” and not take me out of the system completely but rather declare me “invalid” until I called back and told them I was off disability. Now I know there is a stigma in society, and clearly this woman was uneducated but her actions made me feel tainted.

What has been bothering me since is that nowhere in the documents I received did it tell me that if I was on disability, I would be unable to give. You don’t even have a section on the questionnaire that says: “If you take the following medications, please call as you may be unable to give.” You have a question about diabetes – if disability is such a problem, why was it not on there?

I hope you can understand how excited I was to possibly save someone’s life. My friend died a few years ago of Hodgkin’s because she couldn’t find a donor in time. I had already written all of my family and friends telling them that while there was still a slim chance, I had actually been called up! I then had to write them and tell them that because I get government subsidies, I am useless to the program.

The thought that kept going through my head is that if I was actually a match and you told the donor I had a mental illness (that did not impact my cells) and that I was on disability, there is no doubt in my mind they would ever say no to my cells! For an organization that understands how difficult it is to find a match, something this inconsequential is letting people die.

If there are legal reasons, there should be information on the website. And I should be able to talk with someone about it. I am so disappointed in you as an organization. I wrote a blog post about this, and told my family and friends. But I want you to know that I also told them I still thought if they could, they should sign up. You may take away my right to give, but at least I can help those patients who are dying by getting others to give. Patients shouldn’t suffer because of your arcane policy decisions.

I am no longer ashamed of myself. I stand true to my values of helping others. I will continue to give blood and platelets and encourage others to sign up on the registry. But I am ashamed of your organization, and I hope by sharing this story, you are ashamed of yourselves as well. I ask you not to apologize, but to please do something about this. If you don’t want us to give, then make it clear. If there are medications we cannot take, let us know. And make sure you have educated nurses on the phone for the questionnaire who know better than to judge someone on the phone for an illness they did not ask for, who is only trying to help.

We need organizations like yours, but you need to step up. It is 2016, and people are dying who could possibly live. It is your responsibility to make sure that anyone that can give, should be able. I hope you give this time and thought. I know I have.

 

Go The Fuck To Sleep: A Lullabye to My Maniacal, Stubborn Brain

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While I wish I was clever enough to think of that title or write this page, this comes from the book by Adam Mansbach (read aloud by Samuel L. Jackson) and is worth a read…and I don’t even have kids.

Look,  I believe in the lyrics “you can’t always get what you want ”  but I’m having a difficult time wrapping my mind around “But if you try sometime you find You get what you need.”  That’s where I’m going to call bullshit. my body my brain my legs my stomach -they all know that I want to sleep.  That I  don’t just want it, I need it.  And I assure you I am trying as hard as I can.

it’s like my brain is laughing at me as I try breathing exercises, body relaxation, mocking me for my attempts. I even tried doing visualization, which I think is a bunch of shit, and I tried to lock each of my problems  into boxes with keys so that my brain would be empty.  I don’t want to give away the ending but let’s just say I’m still awake.  I’m on day four of this wacky insomnia bout. I was able to lie down and close my eyes and relax my body, but my brain still wouldn’t let me sleep. and so now I’ve been in bed for three hours: I’ve tried reading, writing, (I don’t want to do anything too important since I’m not sure I’m fully awake,)  i’m doing my best to avoid medication but I don’t know what else to do and I don’t know why I can’t have this.

maybe it’s  my depressions’  childish way of telling me to fuck off since I slept so much when I was depressed and now I can’t seem to slow down enough to enjoy a deep dream sleep.

even when I do fall asleep I’m usually half awake, directing my dreams and getting up every few hours. it’s just this process of falling asleep  that I find so fucking frustrating.

it’s such a simple idea. I remember as a kid I was so good at sleeping. I could sleep anywhere, I slept through anything, it was a problem because I was just so damn good at it. it doesn’t make sense to want something so bad, to try so hard, to even deserve it and still eyes open brain thumping racing twirling, body aching, and wanting.

there’s usually a point when I decide whether to keep fighting or just watch TV until I pass out at three or four in the morning.  This is my current conundrum that I’d really prefer not to have.

Traveling Abroad: Making the Jump Without Guarantee of a Parachute

Well the reality of it all just kicked in. I suppose because in two hours and one week I will be on a plane to London.

I have had the fortune to travel to some cool places in my life – both in groups and by myself. I hated the idea of being a tourist so my favorite thing to do was just walk around the neighborhood, maybe go get a coffee and watch people. There, no one knew me and I could be anyone or no one. My mom always freaked out because whenever I traveled, I would unintentionally cut off completely. I once went away for 6 weeks when I was 15 and I only called home twice. I guess when I’m there, I’m just immersed.

It’s funny, because you would think being severely depressed with a lot of hangups about eating in front of people, having people judge me, and overall anxiety, would have held me back from traveling in my 20’s. And while it terrified me, I knew once I got there, at least I’d be somewhere else. A place where I wasn’t defined by my family or my past. (I also drank quite a bit and would meet people in hostels and make “fast friends” that I would never see again.)

But those were my twenties. Since my breakdown in DC, I’ve only left California once in the past five years for a trip back East for a few weeks. And it was a difficult trip given my mental state. So how will traveling be now? To another country, which by the way, has been my fantasy country for as long as I can remember.

In a way, I’m more terrified of it now that I’m feeling better because I don’t know what to expect and I don’t have the same safety nets of when I was younger. I have been working a lot in therapy on choice, decision-making, and skills to help push through my fears. But I have only tested them within the confines of my incredibly small life here. While I don’t want to live in this area where I was born and raised forever, I’m afraid to run away now because for the first time it actually feels like a safe space. I have my doctors, my mom, my siblings. I know, it’s not enough, but it’s a support system that has held me up and kept me alive. Who and how will I be without my safety net?

It’s a bit frustrating. People should be more confident in their 30’s than in their 20’s. In my 20’s, traveling alone made me feel like an adult; now given what I’ve gone through, I’m in my 30’s, but I feel like a child. As I’ve often said, now that the clinical depression has lifted, it turns out I’m still 18 in a lot of ways. And I haven’t experienced very much as a stable, sober person. It also, unfortunately, feels like a bit of a test. I actually think that is one of the main reasons I’m going. Everyone is watching to see – will I actually jump? Has all this work proven that I am strong enough to challenge myself and not have a breakdown or end up in a drunken stupor or hiding in my room with a clif bar because I’m too afraid to go out? And it’s not just them watching – I’m just as curious to see myself.

My family and I discuss the reality that I may never be able to hold a job; that I may never marry; that I may be financially dependent on my parents for the rest of my life. That my expectations of what my life will look like may have to be very different than the picture that was drawn for me or even the one I attempted to draw for myself.

Taking these steps are the only way to know how far I can go and where my stop-point will be. If I can go to graduate school, can I work full-time? Or will it be too much? Do the things I need to be healthy – like the gym, my eating habits, my therapy – which take priority and require time that therefore cannot be provided to other tasks – will that constrict my choices? I know I need these things to be healthy – if I didn’t have them, I certainly couldn’t have a job anyway, as a breakdown would more than likely rear its’ powerful force. So what can I manage while still maintaining my mental health?

And the truth is, I can only know by trying. And that jump, that unknowing, scares me. I want to trust that the parachute will open. Deep in my chest, I hope that I will soar and land softly where I am meant to be. That I will no longer be the person that everyone tip toes around; who if she doesn’t return a text, gets 12 right away with panic; who earned those concerns by pleading for death as I laid in bed for years.

This disease does not go away. The work I need to do – on my self-esteem, my anxieties, my weaknesses – that hold me back from being the person I want to be (or even knowing who that person is) – that’s never going to be “fixed.” My life may end up looking different than I imagined. I know that. I know that there is always a chance that everything I have been fighting for this past year might be taken away. The medication could stop working; I could have a breakdown at school and need to leave. The foundation I have been building could be demolished in a week.

And for so long, that possibility kept me from making the jump. And while I’m terrified, absolutely numb with fear, there is a part of myself, a voice inside that has slowly gotten louder though still timid, telling me to jump.

If not now, when?

(If you write something, does it help you believe it? ‘Cuz while that may be an inspiring ending, the nausea I feel ensures me I may still have doubts.)

 

 

Conversations with My Insomnia

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I’m the one on the far left – I wear a lot of black. And while my hair is brown now, who knows – if I don’t sleep long enough, maybe my hair will turn white?

Insomnia begets itself. This was my sixth night. I’m running out of patience…or maybe that was three days ago and I’m just too tired to be angry anymore.

At least if I couldn’t sleep, but I could get work done and be effective, I could see a small positive to this aggravating problem. Or maybe if I didn’t have a mental illness that made it really important to get sleep, it’d be okay. I mean, there are people that have full lives on 4 hours of sleep. I used to idolize them. Now I just hate them with a deep, dark, irrational jealousy.

But the real bitch of it all is that insomnia’s such a bully. Here’s just a sampling of a few of her dick moves in my battles with sleep. Note: I never seem to get a word in edgewise:

Insomnia: “Oh, you want to sleep? Did you just close your eyes? How cute, with your little mask. I should totally Instagram this. But wait – you’re not forgetting your schedule tomorrow, are you? You think you’re going to be able to get to the gym? Are you going to fuck something up? Oooh, what if you wake up depressed? Or sad? Or fatter than now? But seriously, you don’t want to be tired or you’ll really fuck it up even more than you were most likely going to. Wait, did I interrupt you?”

Insomnia:”How adorable is this. You are trying mindfulness exercises? How’s that ‘breathing’ working out for you? Are you sure your toes are really relaxed? You know, you should really do this better – this whole relaxing, meditative shit. ‘Cuz you suck at it. Maybe you should meditate on that for a bit.”

Insomnia: “You think you’re drifting off thanks to the meds? Well don’t forget you’re sleeping alone, running out of money, still not in shape, and your kitchen is a mess. But seriously, think of ocean waves – that should help with your failing life. Quick! In about half an hour, that sleepy feeling is going to wear off and if you’re not asleep by then…well then you just wasted a very expensive Xanax, you pill-popping loser.”

Insomnia: “Did you fall asleep?! Well I’m going to have you continue your conversation in the dream out loud until you realize you are speaking to yourself in your room and wake yourself up. (And then continue the conversation until you finish your sentence because you clearly were passionate about the argument you were making.) Maybe I’ll even have you physically get out of bed in the middle of your dream, half-awake, and then once you’re up, have you forget what you needed or why.” (snickers…)

Insomnia: “Okay, you got to sleep. Kudos. Let’s see here…yup. Here’s a dream where everyone is yelling at you for something you didn’t do and for some reason no one is listening. And you can’t apologize, and you can’t fix anything, and you still don’t get why everyone is mad. Are you catching the theme that you suck and no one likes you? Okay, just checking. Enjoy.”

Insomnia: “You think you are dreaming, don’t you? Then why did you just make him come back to talk to you? Are you actually trying to ‘replay’ that ‘scene’ again? You know you are totally awake and directing this dream, backseat driver. There’s no REM in that but enjoy what we here in the sleep world call ‘daydreaming.’ Oh, and even though you are directing the dream, he’s still not going to come back and tell you he likes you. Sorry if I ruined the ending – but was it really a surprise? Yeah, that’s called throwing shade.”

Insomnia: “You think you’re asleep? Oops! Well, it looks like you have to go pee. Careful not to wake up. But hey, while you’re peeing, don’t forget this list of things you might fuck up. Ahem, number one…”

Insomnia: “Oh shit! Wake up! Wake up! Are you up?! Syke – I totally got you! It’s only 4am and now you are wide awake. Muhaha, bitch.”

Insomnia:  “Girl, you really should get to sleep. It’s really not a big deal. You know you want to. I know you love sleep, and hey, from what I hear, sleep loves you. After all, aren’t you about to take on a shitload of responsibility when you go to London? You better be awake for that. It would be so sad to see you squander all your money just because you need your ZZZZ’s.

Insomnia: “Oh and P.S. You look worse than shit. There is no concealer that can fix that mess. Maybe you should become an extra – I mean, zombies are really ‘in’ right now and you would really help cut costs – no makeup needed! I’m just trying to be helpful.”

See, she’s a total bully. But damn, she’s good.