It’s been harder than I expected it would be to turn 30 – officially an adult, no longer safely within the confines of being in my 20s (and the prolonged adolescence that seems to afford these days) – and still disabled. Not that I had expectations that once I became an adult I would suddenly be able to drive a car again, or go to the grocery store, or cook for myself; or magically be able to do any of the numerous things I still need help with in my daily life. I think I was simply unprepared for the weight of being 30, and that weight is especially felt given that I’m disabled. It’s somewhat embarrassing to be an adult and still have your mother do your grocery shopping for you. Sure, I have a perfectly valid reason for not being able to go to the grocery store (their overwhelming nature is a sure source of my illness expressing itself, even today). But it’s been hard. It’s led to a sort of crisis this year as I struggle to to find the right balance between independence and assistance.
(As an aside: I think we tend to treat crises as inherently bad things, as things to be avoided. But I don’t subscribe to this thought. Crises can oftentimes be useful, so long as they’re calls-to-action. See my post on Emotions, Worry, and Pragmatism from February for more information.)
I think it’s oftentimes the default for caretakers and loved ones of those with mental illness to not push them, to not give them responsibilities. Or else to grow frustrated at the apparent lack of progress and suddenly push too many responsibilities on them. It’s hard to gauge what someone is capable of when they’re suffering from a mental illness because there’s no obvious sign of disability. There’s no cast, no bandage, no loss pallor – no cuts or bruises. And, in my experience, oftentimes the things a mentally ill person can’t do seem absurd: what kind of illness prevents someone from going to the grocery store? What kind of illness forces someone to sleep on the floor of their parents’ bathroom?
I also become randomly capable sometimes of doing the things I say I cannot do. Crowded bars are a no-go 98% of the time, but last month that’s exactly what I found myself doing; sitting in a crowded bar in Indian Hills, CO, sipping on Folger’s coffee, and listening to a band play loud music. Normally this would produce psychosis and/or a panic attack, but somehow I was able to handle it. Whether it was because I was with people I trusted completely or because I haven’t done anything like that in quite a long time (I can’t actually remember the last time I was in a crowded bar with live music playing) and therefore had some sort of tolerance built up to it, I can’t say. But the rules aren’t set in stone. Sometimes I find myself suddenly and randomly able to do things I wouldn’t otherwise think myself capable of doing.
It leads to confusion. And thus, when dealing with someone disabled by a mental illness it requires a lot of trust. My parents and my friends must trust me that when I say I can’t do something I mean it, that I’m not saying I can’t go to the grocery store because I’m lazy and don’t want to do the shopping for myself. That I don’t refuse to go to bars 98% of the time because I’m a boring person or because I like to ruin other people’s good time. It’s out of a genuine necessity.
One thing mental illness (and in particular depression) robs you of is motivation. Depression makes things you once enjoyed no longer enjoyable or even desirable or attractive. That flood of dopamine you once received from doing something enjoyable is suddenly cut off. And without the dopamine essentially rewarding you for doing those things, there seems to be no point in doing them.
So oftentimes, and especially with depression, you pass away the day doing nothing for hour after agonizing hour. It was certainly that way when I was recovering from ECT, when I woke up as late as possible, turned on the TV to the same movie that was playing on cable day after day, and just laid there – staring at the wall; willing time to go by until my dad came home for lunch.
But depression is best combatted by doing something, anything: walking around the block, making a sandwich, vacuuming the rug – it doesn’t really matter what it is you do, just as long as you do something, anything. It presents a kind of catch-22. Depression makes you miserable and not want to do anything, but doing something is what will make you less miserable. Depression works to suppress your desire to do anything, when it’s doing something that will start to get you out of that depression.
Enter the small ways you can empower your loved one, by giving them responsibilities:
My mom has always left notes for me when I’ve spent the night at her place. The tradition dates back to when I was a kid and during the summer she’d leave me with a list of things to do before she came home from work that afternoon. When I was recovering from ECT, she didn’t leave a list of chores, but simply a reminder that she loved me. It would say something like: Made coffee. Love you much, Mom.
And sure enough, she’d made a whole pot of coffee for me.
I love coffee. Coffee is one of the things someone can make me when I’m not feeling well to help me feel better. It’s grounding. Even just the smell of it brewing can make me feel better.
I don’t know my Mom’s reasoning behind this, but gradually, as the weeks went by, she transitioned from making a whole pot of coffee for me to just leaving about a cup’s worth of coffee in the pot. Maybe I’d complained that she makes coffee that’s too weak, maybe she’d started running a little late in getting to work and didn’t have time to brew an entire pot before heading out the door, or maybe it was a planned way of giving me more responsibility.
Regardless of the reason behind the why of why it happened, it was like she got me into the routine of having an entire pot of coffee every morning (which made my miserable mornings a lot more palatable), and then gradually weaned me off of expecting to have that entire pot made for me by the time I woke up and went downstairs. If I wanted my coffee, I would have to make it myself.
And I did. Not every morning. There were some mornings where I just didn’t have the motivation to make myself an entire pot of coffee. But on those mornings that I did manage to make a pot of coffee, I felt as though I’d accomplished something. It was baby steps to re-learning how to take care of myself after the electric haze of ECT had taken virtually everything away from me. At the time I couldn’t even read for myself and had to have my dad read from a book to me every evening like I was a little kid. I’d sunk pretty low and it was intimidating to try to think of re-learning all the skills I’d lost. It was daunting to think of re-learning how to draw and paint and fix computers and ride a bike and read and write and cook and all of the other things I’d once enjoyed that I could no longer just pick up and do without thinking about it.
And it all started with brewing coffee every morning.
My mom would ask sometimes if I’d managed to make coffee for myself. When I answered that I had she was genuinely proud of me, genuinely pleased with me. There wasn’t any kind of sardonic cynicism in her 24 year-old son finally being able to make coffee for himself; she has always had a tremendous amount of empathy and, though she’s never been through anything similar to what I’ve gone through with ECT, I think her empathy meant she could feel my pain. And on those days, more frequent than the successful days I’m sure, when I didn’t make any coffee there wasn’t any judgement, there wasn’t any demeaning kind of attitude. I don’t remember exactly what her reaction was, but it didn’t make me feel guilty or like a failure. From what I remember of those days, I got a lot of space to just recover how I needed to recover, to find my footing at my own pace and in my own time.
As I mastered the art of making coffee, my Mom started encouraging me to make myself breakfast (which was oftentimes just lunch with how late I was getting up). I’d find a note in the morning saying that I ought to make myself an egg sandwich. Not a patronizing note, just a note of encouragement. She bought my favorite gluten free bread (I had a number of food allergies at the time) and some eggs; and kept us well stocked on organic ketchup and veganaise. Once I figured out that I could fry an egg in approximately the same amount of time it would take for the bread to be toasted, I fed myself a lot more frequently. But it was the same attitude as with the coffee – genuine pleasure at my having fed myself but an utter lack of judgment when I told her that all I’d managed to eat that day was a few spoonfuls of peanut butter.
I think having these responsibilities: making coffee and feeding myself a single meal were crucial in developing my confidence and getting me out of the depression I’d sunk into after ECT. My entire life had fallen apart, I felt as though I had no friends. I had no life, I had no skills; I had no home, no job, no prospects of getting an education. There was nothing left. And it’s best when starting life anew to start with something easy and manageable. Making coffee and feeding myself established a routine, a rhythm to the day. And routine and rhythm continue to be the primary ways with which I continue to combat my depression (and indeed, many other aspects of my illness).
I had been totally unmotivated, I’d been knocked to the ground. And it was comforting to know I had allies in my parents. My mom to gently encourage me to take care of myself and my dad to be there any time I needed him so I could talk his ear off about what it was I was experiencing. Suffering from a mental illness oftentimes means suffering alone, but for someone to offer to listen to me, to sit with me as I’m at my most intolerable made me feel like I am a person worth being around.
The responsibilities my Mom gave me weren’t like the chores she’d given me when I was a little kid. They weren’t tasks on which the family depended on – there was no laundry to do or vacuuming to be done; the tasks were aimed at helping me make myself feel better. It served a dual purpose I suppose. The first purpose being that it made me focus on taking care of myself (because if I don’t take care of myself, how can I take care of other people?). And the second purpose being that it meant the consequences of my failure to complete those tasks were minimal. She wasn’t asking me to cook dinner for the entire family, she was just asking me (and really, she was just suggesting, giving me the opportunity) to feed myself. I wouldn’t feel the shame as much of having failed as I would have if I’d been expected to feed everyone and had failed to do so.
Helping someone with a mental illness requires empathy. Empathy is the ability to relate, on a fundamental level, with someone’s struggles. To have empathy is to put aside your assumptions and your perceptions of the world and put yourself in the other person’s situation, to feel what they feel, in a way. And being empathic toward someone with a mental illness involves realizing that you’re not necessarily going to understand their pain and that it takes time for them to recover from their trauma.
When someone injures themselves physically and goes to a physical therapist, they’re not immediately put on a treadmill and told to run at full speed. That would cause even more damage. No, a physical therapist will slowly work them up to being able to run on the treadmill – will move their legs for them, then have them walk short distances, perhaps with assistance at first, and then gradually work them up to what they were capable of before. A physical therapist will recognize that maybe the damage done is such that the person won’t be able to run at their previous capacity and will set a new limit for the injured person.
And so the caretakers and loved ones of people with mental illness must do the same – gradually introducing a heavier and heavier “load”, using their powers of empathy to calculate how the person with the mental illness is doing.
I’m not as capable as I once was. But it’s an odd sort of “not as capable.” In some ways I’m more capable than I was before. My life with mental illness has taught me to be far more rational than even people without schizoaffective disorder, I have the ability to stop my psychotic episodes from happening in the first place, I’m capable of writing books and possess the discipline to work on them every day with the kind of regularity I couldn’t muster for anything back when I had a job, was going to school, and had a fiancée. But at the same time – I can’t go to school, I can’t hold down a job; I can’t drive a car, I can’t go to the grocery store. With the expansion of certain abilities comes the contraction of other abilities: things change and so do my capabilities.
The following is a short list of Guidelines for Responsibilities:
- Start small and work your way up
- Let your loved one dictate the pace
- Be patient
- Especially at first, make sure the consequences for failing at the responsibility are small
- it was no big deal for me to not make myself coffee. But if I were to have gotten a dog right away, and couldn’t take care of her by feeding, walking, and training her every day I would have felt like a huge failure
- Focus more on rewarding positive behavior than punishing failure
- they probably already feel bad enough as it is, you only alienate them by criticizing them or pointing out their flaws
It’s important to note that these are simply guidelines, what’s worked for me won’t necessarily work for you and your loved one. I’ve tried to keep them as general as possible. It’s also important to go slow. Just like the physical therapist goes slow. Getting diagnosed with a mental illness, having a psychotic break, getting ECT, being sent to the hospital are all traumatic things. It takes a while to recover from the impacts of such blows.
You may not be able to see the impact of said blow, there’s no cast, no bruising, the physical signs of mental illness are almost unrecognizable; but the trauma is just as real. Just because you can’t see it doesn’t mean it’s not real. And just because it seems absurd doesn’t mean it’s an unreasonable request. Mental illness exists with its own kind of logic (see my post on Crazy People Logic from August 2014 for more info). Me sleeping in my parents bathroom might seem like a totally unreasonable request – but it was the only place I felt safe sleeping at night, it was the only place where I wasn’t haunted by psychotic nightmares. Getting good sleep is crucial for anyone, but it’s especially important when you have a mental illness; so virtually anything I can do to ensure a good night’s rest is something I’m going to do. Oftentimes, simply asking why in a welcoming, open, genuine manner will reveal why something seemingly unreasonable is totally reasonable. But there are also times I know I need something but can’t express why I need it until later.
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