New Scientific Possibilities for Help, But Not Hope

Sometimes I question whether I just wasn’t made for this world. That perhaps I was born defective and unable to survive. Many people are born with parts of their body that didn’t fully form or formed differently; some without the necessary components to function or function fully. And lots of people, who may have these differences, adapt and manage, and do not let their difference stop them from enjoying all life has to offer.

But my “defect” is in my brain, and I can’t seem to find a way to adapt or manage on my own. Often times, there are devices and tools to support and help in this process. I have tried the “devices” for my impairment: medications, ECT, exercise, diet, sleep, and a variety of therapies, to try to work with what I have been given. But for some reason, my brain remains resistant to change, unable to manage and function at a level that is personally acceptable.

It’s been exhausting – the entire process. And since I was in my late teens/early 20’s, I never thought I could make it to 35. I assumed my body would simply get too tired of the pain and stop working, or I would have to help do it myself. But even with these dark thoughts, every so often, there were flashes of hope; moments of a belief that things could get better. And so here I am – three weeks into 35, with a new possibility for change at my chemically-enhanced door.

I have had a good year and a half where I seemed to have found a concoction that made me feel more stable. Not perfect – I still dealt with mood swings, depressive dilemmas, and uncomfortable side effects – but enough to make me hopeful that I could work to form a functional and fulfilling life. Then we changed a medication, and the past three months have been a clusterfuck of mood swings, depression, and a melange of side effects. We hit a road block in terms of options and so a few weeks ago, my doctor conferred with her colleagues to see what ideas they may have for bipolar II medication-resistant treatment.

When I saw her last week she told me about two new scientific advancements that could drastically help me get better. (Please forgive my explanations, as I am still learning.)

The first suggestion is a test for genetic markers that show what medications work best in an individual’s brain. There are five markers and they are able to indicate drugs that will work; some that might work; and others that won’t. I found a website of a company that does it called Genesight. I don’t know if this is the company my doctor is referring to – but the hope is that with this test, we will stop having to do so much guesswork with my meds, and may find out if some are actually decreasing the positive effect of other drugs in my system.

The other suggestion is the use of folate. We all know about folic acid. (Okay I didn’t, but everyone else seems to refer to it like I should.) Doctors encourage women who are pregnant to use it to help with a fetus’ growth and have noted that it could help with growth and rehabilitation of other cells. If I were to just ingest folic acid, it would go through my blood stream and I would pee it out. However, this new folate supplement called Deplin specifically goes into the brain blood stream. Evidently, by delivering the folate directly to the brain, it helps with your body’s ability to absorb medications. So for me, while I have slightly benefited, my medication is still not being fully absorbed, and therefore, I’m not actually getting the full impact of the medications.

After explaining these ideas to me, my psychiatrist asked me if I felt hopeful.

The genetic markers sound interesting, though I feel like it isn’t going to be that helpful. I suppose it would provide me with the peace of understanding that there are genetic reasons why I am resistant to so many medications. And perhaps provide new ideas for medication usage. The Deplin definitely sounds too easy. The idea that a supplement is going to help engage my medications and that would help me feel better – I suppose it just sounds too good to be true. Then again, I know people who take incredibly small amounts of anti-depressants, and it changes their life. I find myself skeptical, but willing to give it a try. However, I would not say I am hopeful.

Hope is a complicated emotion for me. I don’t always have control over my hope – sometimes I can feel it behind my cynicism, trying to push through, small bursts getting by, evoking images of peace and contentment. But through the years, it has become an enemy of my depression – spreading fallacies of possible happiness into my brain, only to be devastatingly wrong.

I remember when I started to feel better after a few weeks of ECT. I was ecstatic because I had finally found something that would allow me the chance to have a life worth living. The short term memory loss was a bit annoying, but at the time, it was a small price to pay to have the heavy pressure of depression lifted. I’d found the “piece” that I was born without, that would make me whole – the component that would provide an adaptation to survive. And then it stopped working. And then I found out it wouldn’t work anymore, no matter how many times I tried. And then I was expected to go back to the medication drawing board and start again.

I would say that’s when my trust of hope died. That’s when I started to wonder if I was just too broken, the deficit irreparable and too impairing for me to ever be able to have dreams again. Hope had hurt me one too many times. So am I hopeful? All I can give right now is that I’m not NOT hopeful. I’m open to being pleasantly surprised, but I’m not running around telling the world to watch out because I’ll be out there soon! I have a feeling even if the Deplin works, I will still need to make changes to my meds, there will still be quite a bit of side effects, as well as possible withdrawal and mood swings. I am not naive enough to think that this is “my piece” anymore. But if my doctor is telling me that my what I was feeling this past year was only a fraction of the medication working and that I could feel better than that, I’ll swallow the pill faithfully, I’ll change the dosages, I’ll try medications again, I’ll do whatever it takes. At this point, what do I have to lose?

While some people believe that hope takes less energy than despair, I think there is a key component to that theory that often gets overlooked. Because when you are in the despair, you have to work to get to that hope, and you have so many factors against you. To reach a place of hope you must push through the exhaustion, find a way to ignore all past failures, and find the strength to block out the despair that radiates throughout your body and mind, draining you, beating you down, offering the temptation of rest.

I imagine myself on the side of a sea cliff, trying to pull myself up to get to safety, knowing that if my muscles get too tired; if I miscalculate one move; or a piece of the cliff simply loosens and drops, I could fall quickly into the dark, depressive water below, possibly being killed on impact. I wait, terrified, for a surge of strength or an outreached hand.

I want to have hope that I can feel better and find a new normal that doesn’t include dire mood swings and hypomanic bursts. I want to believe that help is on its’ way. But hoping for help doesn’t save me. And frankly, I’m getting really tired of holding on to this “sea cliff,” waiting for the moment when I can stand on firm ground.

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Accepting the Ignorance of Others

[Disclaimer: I do not suffer from addiction to illegal or recreational drugs or alcohol. I do not portend to know the struggle to recover and manage this specific addiction. I wrote this post to highlight the idea of understanding and respecting different perspectives when it comes to mental health, healing, and recovery in general. I apologize if I offend anyone. Please let me know if there is something incorrect so I may learn from it, and change the post if need be.]

When I was younger, I mistook the knowledge of my idealism as fact and created definitive standards of right and wrong. Maybe my mind was too young to understand the complexities of human experience, or maybe I simply hadn’t lived long enough to see the dynamics of life. But thankfully over time, I have come to see the nuance in all human interaction, and our struggle to find peace and acceptance, especially within ourselves.

I have spent so many years on my quest to manage my mental illness. I have tried a smorgasbord of drugs, therapies, and alternative remedies. Some have worked for a time, and others simply did not fit. A simple example: while I have found DBT an effective form of therapy, group therapy has never worked for me. And while I am still searching, I have witnessed so many find the concoction of tools that help them survive. As long as it does not hurt themselves or others I support them without judgment. In fact, I envy them. I also understand that sometimes, in order to maintain their health, they might proselytize. I think it is common when you have found something that has changed your life. You want others to benefit from your experience and you want to believe in what you are doing, (something I believe plays a large part in what makes it work.)

All of that being said, I was part of a conversation recently where two people were discussing options to help someone who is currently suffering from drug addiction. At the end of the day, we all understand that she will have to want to change, and will have to most likely try a variety of mechanisms to help her battle her addiction. It’s going to be a long road, and I suppose those that love her are trying to find ways they can support and provide her with options for the journey to come.

One of those people is a recovering alcoholic who found his form of AA as key to his recovery. From what I know from others who participate in AA, there are varied forms of AA – it isn’t practiced or used in one way only. I also think it’s important to mention that this person is not educated or familiar with other forms of addiction therapy and tools. I believe he has lived a rather narrow life in terms of interactions and experiences with others. (This is not a criticism, just something to note.) And while I do not think he understands the situation fully, I do appreciate his passion for the techniques that worked for him and that have allowed him to remain sober for so long. I accept that I am not in his shoes and that in his perspective of the world, he has found the right answer – not just for him, but for so many addicts he has helped along the way.

While I held back my frustrations at his simplistic and contradictory ideas of “help,” at some point, I became incredibly frustrated. I told him that this matter was not just about drugs; it was about traumatic experiences, environment, social norms within their network, and a chemical imbalance that makes her have an addictive personality. I noted that while I appreciated that his version of AA had helped him, that for others, therapy, medication, and other forms of help might be better for her and we had to keep our minds open to what might fit her best.

This is when he began his tirade about “pharmaceutical money-scheming” and “bullshit therapy.” He noted that if doctors were to actually “cure” their patients, they would be out of a job. This isn’t the first time I have encountered someone with this opinion, and I know it will not be my last. But it stung. I am currently battling my bipolar II, and given my treatment-resistant depression (TRD,) I am in a frustrating and scary place.

Also, as someone who does take medication, I do not judge those that do not take medications – I know for some, the side effects are too much for them or they simply do not like the idea. Others have had unfortunately negative experiences in therapy, (who hasn’t,) and are weary of trying it again. And that’s okay. But this man has never tried therapy or medication (there are medications that can help with weaning people off addictive medication.) While I do not have a typical addiction, though I tend to see my self-harming personally as an addiction of sorts, I have spoken to those who have, I have read articles, and I have watched those around me get better. And so while I have heard ignorant comments that insult the mechanisms I choose to use, he added injury to insult by assuming I did not know what it might be like to be in a situation where you are not in control of your thoughts, feelings, and actions.

I had so much to say. But like many women, I have been trained to cry instead of show anger. The other person in the conversation, who knows my story, attempted to turn the conversation, and I stepped outside. I was crying because I was angry at his ignorance. I was crying because while I do not know his whole story, I do not belittle his belief in G-d, even though it is an idea I do not believe in. I actually see commonalities in the various techniques used, including in AA, like radical acceptance or letting go of past resentments. But he has developed an idea about medication and therapy, and without knowing what it really is, has decided it is worthless. And in doing so, he is negating the years of trial and error, and my struggle, because to him, it’s not just about proselytizing, it’s about “the right way.”

In the past few days, I have spent time thinking this through, and most likely giving him more time than he deserves. I know he is coming from a place of ignorance, and while some people are open to listening and learning, there are others who simply can not/will not. They say they are, but they already have decided their right and wrong. I have found this to be true when I tell people about ECT. Sometimes they don’t know what it is, and if do know or find out, their reactions are insulting. Often times, they look afraid and aghast, I have had people literally take steps back. You can see their idea of you shifting in their head. I have even had doctors look at me with horror and what feels like judgment. I always imagine they are thinking, “how can someone who seems so normal, be so fucked up? Who knew she was actually crazy – I mean she let herself be electrocuted.” Some are willing to listen and learn; others aren’t. And like this man, I allow them to make me feel ashamed of my choices.

I also think his comments hurt more than usual because I am currently struggling with my faith in the process. I am frustrated, scared, tired, and my hope is dwindling. Having someone exacerbate my fear is unsettling. Both of these reasons have more to do with me and my issues, and not him. I accept that.

I suppose in my own way, I want to proselytize my reasoning for being open-minded to all voices. I have found that if I allow myself to listen to the other side, I see how much we have in common, am able to analyze and understand some of what they dislike in my choice, and while I still may maintain my belief, find value in the challenge of learning to see it from different perspectives. I walk away with the understanding that nothing in life is as simple as we might want it to be. But not everyone works that way and it is not my place to tell them to do so.

I am trying to see this experience as a lesson. An opportunity for the radical acceptance that the nuance of humans includes those that are unwilling to open their minds. Understanding that he is a complex person, that this is one part of him that I do not like, but there are reasons why he is the way he is, he is not hurting anyone, and at the end of the day, he is more than just that one opinion. And he is entitled to that opinion, even if I do not agree.

Well, that is the ideal anyway.

the void of feeling

A lot has been happening these past few months, most of it a blur of attempts to keep my head above water. When the meds go awry, life turns into a triage – doing what needs to be done to get through the day.

And keeping busy seems to be working. If I keep busy, I can try to ignore the massive anxiety pulsating in my chest, underneath my skin, in my head. If I keep busy, I can attempt to jump over the deep wells of depression that have become ever more frequent in my path. If I keep busy, no one will have time to really see my pain, so they won’t panic, try to fix it, worry about something they cannot control. If I keep busy, I can disassociate – or at least, I think that’s what is happening.

But I’m running low on energy; on the ability to keep busy. My regiments are slipping. I can see it, and it upsets me, but I can’t pull myself back up. It reminds me of when I’m lifting weights. I usually do 4 sets of 15, depending on the exercise. And sometimes, during the middle of the 3rd set, I attempt to lift and the muscle won’t move. It’s not that it hurts, it just won’t do what I’m telling it to do. Sometimes, the muscle may start to shake, but mostly it just stops – gets stuck, unable to finish the movement. And it boggles me. First, I never know when it will happen. Sometimes I make it through all the sets just fine. I mean there are weird faces made and grunting, but I finish. And sometimes, I get through two sets and it just happens. Second, because I always would imagine it would hurt; that my body would signal in a more active way to let me know it could not move forward anymore. And three, it just gives up. The arm doesn’t collapse: it just gets to a point, and it can’t move any further.

That’s basically where my brain is currently residing at this time. No outbursts, no screaming – just unable to do anything.

I guess the scariest part of my meds being off right now is the calmness of my swings into the depths of despair. In the past, I would be crying hysterically, hyperventilating, screaming inside my head, craving to hurt myself. It feels intense, immediate, uncontrolled, and messy. Right now, it feels simple. Almost as though my mind has come to peace with it, or maybe, just stopped caring. It doesn’t necessarily want to give up, but it doesn’t want to try. My mind is blank a lot and then I will envision dying. Then I will go and watch television. The next morning, I don’t get out of bed when I should, but I do get up eventually. And I do some things. Not the things I know I should do, but I get a few things done, and then I just stop. At first, my mind tries to fight itself, to run through the contradictions in my head, the choices, the fears, the needs. And it just resigns itself. All of the feelings, ideas, thoughts – they become blurry, they turn into one massive overwhelming encompassing nothing. Every so often, an idea comes through – good or bad; depressing or anxious; even hopeful. It’s intense and catches my breath. I feel like I’m going to explode. And then it goes blank again. Or maybe it’s the opposite of blank. Like my mind is so overloaded, it just shuts down.

I’m seeing my doctor this week. She has conferred with her colleagues about bipolar II resistant brains to see if we can try something different. I’m starting to think I won’t ever go back to the place I was – a possibility I always knew, though could never control. A part of me is tired of fighting, of trying, of thinking that maybe there is hope that my life could have meaning. And the other, just doesn’t give a fuck. How do i feel about that? I don’t know. Nothing. Or everything. It doesn’t seem to matter either way.

I’ve been tired before. It was an angry tired. A “kicking my feet,” pissed-off tired. This is like walking away and sitting down in the middle of the race because i just don’t want to participate – I don’t want to win or lose.

For some reason, that scares me. It makes me wish for the times when I was self-destructive, when I felt something, no matter how much it hurt. Just like my muscle, i just can’t anymore.

the pointless nature of “crying for help”

disclaimer: some stuff about suicide, self-harm, and just basically scary, downer stuff. don’t read this if it’s going to trigger you. i assure you it’s not worth it: just some ramblings but without a filter.

They say that an attempted suicide is a cry for help. While I have never attempted, I will say that based on my experience leading up to a moment like that, you are definitely past a “shout out.” Asking for help can be difficult for anyone. Some people don’t like to ask for help doing a difficult DIY project. A lot of people think they should be able to deal with something on their own, or maybe they don’t want to bother someone.

But I’m trying to understand this idea of crying out for help when it comes to depression. I never have really understood it, even when I have tried to do it. So let’s see, sometimes when I’m getting down, when I feel myself getting closer to a destructive ledge, I may call someone. When they ask “Hey, how are you?” I don’t say anything like: “You know how it is…I guess I just feel like i’m getting closer to a destructive ledge.” I don’t think that’s actually what they’re expecting and frankly I don’t think it’s what they want to hear. I usually just ask them about how their life is. I’m trying to get better at not hiding everything, so I might even say, “Hey, I’m just feeling out of sorts and just wanted to hear your voice and focus on you, because i love you, and i need to get out of my selfishly depressed brain right now.” But people are busy. And you’re calling “just” to talk? That doesn’t really take precedence over preparing for a party, or going out to dinner with someone. it doesn’t take precedence over a crying baby, or a timer for the oven.

So then you get to that destructive ledge. I suppose you can call out before doing something. Sometimes i have called someone before I harm myself. It’s hard – trying to express you’re scared without freaking everyone out. Because they don’t know where you are: maybe you have the knife to your wrist; or maybe you just are in bed and don’t want to get out. And besides, by that point, I have either decided to do something or not. In fact, the only thing that might stop me is if someone called me right in that moment. But that’s not going to happen.

Then there’s the “I’ve already done it and I’m ashamed” call for help. I’ve done that one a few times. Not sure it helps. I mean, it pulls me out of the chaos usually. Makes me remember that I don’t want to hurt others or to scare them with my unacceptable behaviors. Situations, that if and when things settle, I will have to explain, will never really be understood by loved ones because it won’t sound like a “good enough” reason to have done something they think is so unnecessary.

Recently, I was sitting and i could feel the wave coming. And i could feel that I wasn’t strong enough to push it down. I couldn’t help myself. And that “couldn’t” was turning into a “I don’t wanna” really fast. So I think: maybe I text someone? Maybe something vague with this hope that somehow they see through it and understand I need them to come save me? Because honestly, how the fuck is a text convo with emojis really going to help? And haven’t we had this conversation before, the last time I was in this position?

Then, what if it does pass? What if it wasn’t as bad as I thought it would be? Now I’ve scared them and they need me to call them all the time; they don’t want me to be alone. Now those things that took precedent before don’t, but you know it’s because of you, and the guilt is worse than if you had just gone through with it. By the time they call you back or get to your house, the immediacy has passed.

The thing about a call for help, is you have to want to make it. You have to have the strength and gumption to say that you need help. But maybe you don’t want to use up your “helps.” I mean, everyone says they will always be there, but lest you be the “boy that cried wolf.” Plus, you are bothering that person, you are impacting their life in a selfish way, so you kind of want to use those moments when they really matter. But then of course, how do you know if this time will matter, and what if you realize it but you’re too far committed to turn back and make that call?

I don’t know about this cry for help. During a time when I feel pointless, frustrated, exhausted, tired of trying, I am supposed to call someone and tell them that I am feeling those things and that I need them to help me. I mean, isn’t that contradictory?

And now it’s time for me to go off topic, because it makes sense in my head.

I was writing to a friend today and wrote this huge explanation of the past three months: what has happened, how i have felt, all the shit. And then I erased it. I didn’t want to freak him out. And I realized, I only share, I only ask for help, after I don’t need it anymore. So i will tell someone that the night before, I had wanted to die. I will email with a friend across the pond to tell them about a scary period of time I had the past month when I didn’t know whether I was going to be ok or not.

Because if provided through this viewpoint, it’s something they can handle. They need to know it’s ok so they don’t feel helpless. And I don’t want to burden them with something they can’t control – so i tell them after, as if it was just a momentary weakness. And you have to, because if you don’t, then they don’t trust you. When you say you’re ok in the future, they don’t believe you. They call you all the time or attempt to subtly make sure you’re alive by “just passing by” or “thinking of you and deciding to call.” And it’s funny, because even though at one point I thought that was what I needed; by that point, it just feels like they are reaching out for themselves. So they feel better knowing they were doing “their part.” In fact, I’m not sure they actually want to understand what I would need in terms of help.

Many people offer their help to me and in doing so, I see the love they want to provide. They are good people; caring people. People I am lucky to have in my life. But they don’t get it. I don’t know if they can’t because they don’t know what it feels like, or maybe because they aren’t really listening to me the way I need to be listened to. Or maybe I’m not being clear because I don’t know what I need, let alone what I need specifically from them.

To me a cry for help needs to be answered immediately and never is. To me a cry of help is yet another pathetic demonstration of why no one should answer. Honestly, i’m pretty sure just a good cry would be more helpful than anything else.