What it takes

I have had a great many people comment with surprise and/or praise about despite my disability, I’m still working towards doing what I want with my life. It’s always been something that has mildly bewildered me, to be completely honest. From my point of view, the alternatives are substantially more unpleasant.

So today, I’m trying to put aside my feelings that it’s the only obvious choice and think (and talk) about what it takes, what it means, to keep going.

In complete honesty, the first thing it takes is support. I’ve been lucky; most people in my life have been supportive. I think the real keys for me are the support I get from my boyfriend, from my service dog, from my medical professionals, from my law school, and from the state I live in. My boyfriend keeps track of my medications and refills them (and reminds me to take them), does housework, drives me to and from places, fetches things, carries and moves things, and occasionally literally half-carries me around (when I’ve dislocated something). My service dog literally supports me walking, picks things up, opens doors, pushes buttons, nags me out of bed, reminds me to play, and gives me affection. My medical professionals treat my symptoms and occasionally fill out paperwork for things like my parking placard, my service dog, and my state-provided support, not to mention fighting the insurance system on my behalf. My law school has done things like get me electronic copies of my textbooks, arrange for note takers, put in an electronic door opener, and provide a mentor for a year to help me to really do well in school. The state provides me with a personal care assistant for 18.5 hours a week to do all the things I can’t, like laundry and dishes and moving things around the house, and gives me medicaid health insurance. Without all of these, I don’t think I’d be able to keep on going. And that’s without even getting into the harder to define sorts of support that I get from friends, classmates, and family.

After that, I suppose what it takes is inside. The thing about having a disability is that it gives you a great excuse not to do things, one that few people will badger you over. It’s that much easier to say “I can’t”. More than that, it’s that much easier to believe you can’t. Particularly so when what you’re dealing with is mental illness, because it fundamentally screws up your perception of things.

So what does it take? You have to have some kind of goal, some dream, first. Once you have that target to aim at, you need the drive to get there. Perseverence. Hope. Faith in yourself. You need the ability to recognize your limitations and either make attaining your goal work within those limitations or extend your limitations. You have to ask for help. You have to figure out how to differentiate between compromising your goals and allowing them to evolve (which is a really tough line!).

I wonder sometimes if the real bottom line is whether you think there’s a choice in continuing towards your dreams. For me, the alternative – throwing my hands up and giving in – is so unpalatable that it isn’t a choice. Because I don’t see giving up as a choice, I have to find a way to make things work. If giving up was something I could concieve of doing without massive amounts of emotional pain and a terrible sense of loss of self, then I would imagine it would be harder to scrap together what it takes to keep going.

It’s usually not conscious choices to keep going, just a tendancy to put one foot in front of the other. If it required making that decision over and over, re-weighing and such, all the time, I don’t know that I could do it. The fact that I don’t often question whether or not I ought to keep going is in and of itself a means of protecting myself – if I do not ask if I should give up, it makes it harder to do so.

Most often, it is a habit of continuance and making things work, rather than some brave decision to keep going in the face of rising odds. It is the day to day trudging, not a risky and daring feat of perseverence.

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Sliding sideways

I know I mostly talk about my physical illnesses/disabilities, but they aren’t the only ones I deal with. I am bipolar type II, though I flirt with type I when under pressure. I also have a bit of OCD – enough for it to be mildly disruptive and entirely annoying to people around me. I have PTSD (relatively mild) and occasionally have panic attacks. I’m also a pathological planner/worrier.

Now, the OCD is for the most part pretty managable and it springs from things that are originally reasonable. For example, because of the fibromyalgia and sensitive skin, I’m extremely sensitive to folds, seams, tags, fabric softener, quality of fabric, and so on. However, this turns into an obsession with the sheets being pulled so that there are no wrinkles. A desire to have my clothing folded JUST SO. Disliking having shoes or socks on. Extreme particularism about how the laundry is done. The list goes on and on. Fortunately, my boyfriend is an exceptionally tolerant, patient person, and he rarely gets ruffled by this…twitch…of mine. I think the fact that he has an office that I never even look at, and thus a place he can do whatever he wants, probably helps with the balance of things.

Day to day, the OCD is a nuisance but not really hard to work with. It just kind of…is. It dictates a lot about the details of how things are done, but of all the things about me that require coping skills, it’s a relatively mild one (except the occasional night where I keep having to check that the doors are locked…those are very rough on my joints as I go up and down the stairs again and again and again). Yeah, once in a while the boyfriend and I end up snapping at each other over it, but on the whole, it doesn’t change our lives much.

I would not be surprised if my need to plan things and figure out what happens IF (fill in the blank) are OCD behaviors. It’s definitely compulsive, and something I am absolutely incapable of stopping. I can sometimes…manage…it, but usually the best option is to give in, sit down and do the planning/worrying/projecting, get best case and wrost case scenarios, and try to estimate likelihood of the various outcomes. Then, I can finally get on with life again. Knowing what will happen in the worst case really helps me maintain sanity and let go a little of this worry. Did I mention that I don’t really like change, and tend to react to it poorly initially? I think that falls under this, too, because it’s harder for me to plot the potential future outcomes when I have some new variable to deal with. There is little that troubles me as much as financial/job insecurity.

Bipolarism is another matter altogether. Part of the trouble with it is the vigilance needed. I (and to a lesser extent, the boyfriend) have to watch for hints of mania and depression. Am I sleeping less than usual? More? Do I end up talking faster and getting excited about seemingly insignificant things? Am I…grey, with no strong feelings about anything? (sorry, it’s a state that’s hard to describe).

And then there’s when it hits. Both upswings and downswings are dangerous to my relationships. In upswings, I am easily angered and prone to snapping and fighting. I have boundless enthusiasm and am less than pleasant when others don’t go along with it. I’m thin skinned and easily hurt. There’s a lurking mild paranoia that everyone is talking about me behind my back and secretly can’t stand me (which has only been aggrivated by periods in my life where that has been mostly true). In downswings, I have such a deep inertia that it is almost impossible to get me moving, physically or emotionally. Physically, I am tired and want to sleep a lot, and I don’t really want to get out of bed. I don’t care about eating, which means I either forget to eat or eat far too much of things I find tempting. I also eat a lot of convenience food, because preparing something more wholesome is just too much work. I worry deeply about the future, and question the futility of continuing with law school constantly. I often go incommunicado, speaking only in class or when spoken to directly. I don’t sign on instant messenger or call people, and I often retreat into books. When I’m depressed, it’s incredibly hard to manage basic self-care, so things like showering tend to get farther apart than I would like, and my physical disabilities make this worse.

A lot of literature and some people talk about sliding ‘down’ into depression. For me, none of the psych issues I have feel like sliding ‘down’ or ‘up’ so much as they feel like a shift…sideways. A paradigm shift, a fundamental change in the relationship between me and the universe. Sometimes, as with a bipolar depression cycle, it’s a subtle, slow shift that can be hard to spot until I’m really far out and start getting a bit irrational. Other times, like panic attacks, it is as if the world SNAPS sideways, violently and suddenly, and the change is painful and frightening. My perspective is so altered that my former perspective is incomprehensible, or worse yet it feels like my former perspective is completely, utterly wrong.

With those more sudden shifts, I cannot actually tell that what I feel and sense is not rational processing. I am so completely in thrall to my mental state that reality does not have a bearing on how I feel. To give an example, if I end up in a car during a panic attack (which is a REALLY BAD IDEA), I am usually convinced that everyone on the road could potentially kill me at any moment. They might crash into me or pull out a gun on me or god only knows what, but any one of them could harm me. Now, my rational self knows that this is not the case. I drive defensively and am very aware of where cars are around me, so that I can change my position relative to them if there is a sudden accident or something similar, but I am not normally afraid of them. A panic attack takes rational caution and turns it into unthinking, unprocessed fear. The best way of dealing with a panic attack that I have discovered is to lock myself into my house, and then lock myself into my bedroom, and take the panic attack medication. Being in an otherwise empty room in an otherwise empty house is about the only thing that can assist the medication in bringing me down out of that terrified state.

You have to understand, when you are dealing with mental illness of any sort, part of what you are dealing with is fundamentally irrational thought. ‘Everyone thinks I am stupid and ugly and annoying’ is not rational. After all, I know that I have friends and that the boyfriend thinks I am incredibly sexy. But the depression-colored lenses make it much harder, if not impossible, to see that. That’s how depression gets you. You aren’t just sad or down in the dumps, you’re irrational. That’s how depressed suicides happen. You believe something like, ‘I hurt the people around me so much and so often that they will be happier if I no longer exist to hurt them.’ In a depressed state, you can honestly believe that the hurt your death will cause is less than the hurt you will cause by existing. Anyone who has true friends and loved ones can tell you that this is emphatically not so! But in a depressed state, the trouble you cause by existing is often magnified so dramatically in your mind that you cannot believe that your death could possibly cause more.

Likewise, in a depressed state, your present pain can be dramatically magnified, to the point where you cannot believe that it is worth continuing.

Suicide is not a selfish act. It is an act of great pain and desperation, and sometimes the person trying to kill his- or herself actually believes they are doing an altruistic thing by removing the pain they cause their loved ones. Suicide is an act of irrational views and skewed thought. It is the product of a mental state that is fundamentally unhealthy.

So I guess that brings us to the question of what you DO about mental illness.

If you are very privileged and very lucky, you find a good therapist and a good psychiatrist or doctor. That involves a lot, though – it involves having the financial resources to get ‘help’. It often involves a lot of phone calls and searching and trying out new people, which is incredibly difficult when you’re starting from that slide sideways. It involves recognizing that you actually need help, which a great many people never do. It involves an element of luck – finding the right drug and the right doctor and the right therapist is really hard.

For the sake of argument, let’s say you have the privileges to be able to access appropriate treatment.

First, you have to find a doctor and/or shrink who has openings for new patients.
If you’re lucky, their personality and approach to therapy will be a match for you. I’ve only had a good match with about 1/3 of the therapists I have seen over my lifetime, with a more-or-less adequate match with another 1/3, leaving 1/3 who were absolutely abysmal and actually harmful to my wellbeing.

Next, you get to start the drug merry-go-round. We don’t know exactly why or how psychoactive drugs work, so we can’t predict with any accuracy how an individual will react to them. For any individual, some drugs will make him/her better, some will make him/her worse, and some will either cause other problems of equal weight or just not work. A drug may make someone better, but not better ENOUGH. Even drugs that work may eventually cease to be effective. We don’t know why, we only know that it happens. Personally, the worst depression I’ve ever had was made deeper by a mood stabilizer that didn’t work for me. I’ve also had a prescription make me sleep 18-20 hours a day. I’ve had one kick me out of a depression and straight into mania. I’ve had a drug that worked for circa 6 years abruptly cease to work. It is a journey of great potential dangers and great potential rewards. You can’t just skip off to your doctors and get some pills and be all better – not unless you are unbelievably, deeply lucky.

Now, even if you have insurance that allows you to do all of this, most companies will make you fight for it. Argue to keep your therapy covered. Struggle to get the prescription that works covered and keep it covered. Fight to get enough visits to do you any good. And heaven help you if you need to be hospitalized, because many insurance plans do not cover mental health hospitalizations.

A big part of what makes mental health issues so hard to deal with is the prejudice and misunderstanding. In dealing with my particular disabilities, I have to accept that there are times that I am not particularly sane. However, not being particularly sane doesn’t mean I grab a kitchen knife and start whacking people up. It’s far more likely to mean that I go curl up in bed and only get out when I MUST go to the bathroom or eat. Being mentally ill doesn’t make me a danger. I’m not hazardous to other people, and frankly most of the time I’m not even hazardous to myself. I’m not some ticking time bomb. I’m just…a person who has greater ups and downs than average, and I am sometimes ruled for very short periods of time by my irrational fears or my irrational needs for cleanliness in the house. I’m sure that can make being close to me difficult at times, but I shouldn’t be treated like some kind of harmful, dangerous freak.

Forgive me if this piece is long and rambling. I don’t talk about mental health all that often, and this was kind of triggered by reading a very good piece written by my friend here – http://naamah-darling.livejournal.com/437140.html.

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Whoops, guess I took a break

Last week was my spring break. I didn’t intend to take a break from everything, but I went to a book store and bought a pile of new books. And, well, to be perfectly honest, I was kind of getting tired and burned out, and I think I needed it.

I was also working on my new hobby: spinning. I learned to spin on a drop spindle over the holidays, and eventually decided to purchase a spinning wheel. I spun about a dozen skeins of 2-ply yarn over spring break, and I’m rather pleased with that.

I had intended to get work done towards preparing for my exams and my trial at the end of the semester. But combine mental exhaustion, back pain, and major construction on our street, and I did a lot of sleeping, reading, and spinning.

I think I needed the break. It sets me back on the things I needed to do, but hopefully I’ll be able to catch up quickly.

Now if only my body would take a break from injuring itself! My left elbow, both shoulders, my left hip, and both knees have been dislocating like it was going out of style.

And if I could just get enough sleep…there is major construction happening on our street, and it starts at 7:00 AM all week. Yours truely is more of a night-owl, and waking up before 10:00 AM is very much contrary to my normal schedule. So I’ve been having my sleep broken up and interrupted for the last few weeks, including my spring break.

Have you ever noticed that no matter how much you want to take a break and get some rest, something keeps you from it?

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Remembering…

Before I got up to exercise today, I had been reading a few blogs. One of them mentioned a song off a CD I bought back in 1999. I was laced with the desire to hear it again.

I turned 16 in 1999. To me, this CD speaks of my first year in college. That first opening of the world, finding all the choices in my hands. Believing that I could do anything (well, anything except play a sport on any level other than recreational – being 5’2 and not especially athletic does come with some reality checks). Discovering that I could be that good at any intellectual endeavor I turned my hand to.

It’s an almost painful memory, because of how different life is now. I carried overloads more semesters than not as an undergrad. I stayed up until 3 in the morning talking to friends all around the world. I was incandescently intense. And my idealism was boundless. I threw myself into Amnesty International, swing dancing, a small club that did volunteering on a mostly local scale. I was a Salvation Army bellringer at Christmas, and I didn’t just stand there ringing the bell, I sang Christmas carols. I was finding my voice in writing, and training it in singing. I was also finding my eye for creating clothing and costumes.

My intensity is somewhat tempered now; the result of not being a teenager anymore, I suppose (fortunately, that includes my temper, which burned very hot back then). My idealism, as well, though not my determination to do something GOOD with myself. My love for music and dance still burn bright. My ability to volunteer and take heavy courseloads is much abridged by my disability. And my creativity has found an enormous array of outlets, to the point where I could keep myself busy for months with nothing more than them. Instead of the wildfire of a relationship that knew no rhyme or reason, I have the warmth and tenderness of finding someone who balances and complements me.

I am not who I was. I am so different that it is hard to wrap my mind around who I was. I like to think I am wiser. I’m not sure. I am still, and probably always will be, someone who is not a ‘popular person’. But I am gregarious and friendly, and if I am not especially close with many people, I do at least have a few friends I would trust at my back and a great number of acquaintences to keep me busy. I like to think that my pride has changed from that huberus of discovering how easy things are for me to a pride that is based on my accomplishments and my choices.

So, who were you a decade ago? How does who you are now compare to who you were then?

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Sometimes, you owe your dog an apology

This is one of the frustrating parts of being a service dog partner – sometimes you screw up and all you can do is apologize to your dog.

Sometimes, you put something too close to the edge of a shelf, and it falls on your dog.

Sometimes, you give a nonsensical command, or forget the command you need.

Sometimes, you trip on your dog, or walk into him, or step on his paws.

Sometimes, you don’t notice that harness straps are twisted or that he’s tangled in the leash.

Sometimes, you get so exhausted, you forget to feed your pet.

Sometimes, when you are sick, someone else has to take your pet out to do his business because you can’t.

These are hard to live with, in all honesty. Why? Because that dog trusts you, and has faith in you, and relies on you.

My latest ‘I’m sorry’ moment involved a toy. Hudson has this toy that he adores, but isn’t allowed to play with much because he’s destroying it. He’s a very determined chewer, so anything but a Kong or a Galileo bone, he quickly chews to bits. I told him to get his Kong, which is a command that tells him to find and bring me the treat. He couldn’t find it because it was under a shopping bag, so I felt bad. I grabbed his favorite toy, and was going to give it to him when I spotted the Kong. I moved the bag and told him to get the Kong, which he did…and then sat and stared at the other toy. I ended up putting the other toy in a cupboard, because he was ignoring the Kong even though it had a treat in it, in favor of his favorite toy.

He spent the next 10 minutes searching for his favorite toy, and finally gave up. Instead of his normally exuberant play with the Kong, which involves dropping it and pouncing on it as well as licking and chewing, he just settled down to lick at the treat in the Kong. It seemed pretty clear to me he was sulking over the favorite toy.

Over the next two days, he occasionally searched for the favorite toy.

He’s finally given up. I feel bad, because I know how much he loves that toy, but I realized when I picked it up that it was far more destroyed than I thought and that I really needed to save it for when he deserves a big reward – for example, after he gets clipped.

But oh, it is pitiful the way a dog looks for his favorite toy. We couldn’t help but laugh a bit, as well. It was downright comical how forlorn he was over…just a toy. Mostly it’s pitiful, though, and it makes you feel like quite the bad guy to know where the toy is but not give it.

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