FAQs: How Do You Avoid Depression?

Quadriplegia likes to attack both your body and mind. It doesn’t do it all at once, however – or at least it doesn’t feel that way. It comes on in stages. It typically feels like quadriplegia is attacking your body first, with the loss of your mobility and sensation grabbing all the early headlines and capturing your immediate attention. Then, as you gradually process those losses, and slowly figure out the best ways to keep yourself physically healthy, the struggle turns to how you keep your thoughts positive and your momentum leaning forward. This is perhaps the greatest long-term threat to many individuals in my situation.

Time For Pills. Everybody Happy?

It should probably come as no surprise then that my doctors immediately put me on antidepressants right after I broke my neck. They didn’t ask or even consult me on the matter. They just did it. And with all the other shit going wrong in my life at the time, I really didn’t have any time or grounds on which to object. I just did the only thing I could: I kept working towards getting healthier and moving forward with my life. But I knew I didn’t want to be on those pills for very long if I could help it.

As soon as I was out of the hospital and my health had finally stabilized, I actually tried to stop my antidepressants. I made my first attempt at stopping them in January 2004. I had been home for little more than a month. The only reason I remember the timeline accurately is because my doctors wouldn’t actually let me stop my pills at that time. They thought I might be susceptible to “seasonal affective disorder,” and they said I’d have to wait for some sunshine to properly treat all my mental ailments. But once the flowers were in bloom and the calendar turned to June, I made another appointment, answered all of their questions and threw the rest of my script in the trash when I got home. I was finally done with those pills forever.

I don’t mean to sound overly hostile towards antidepressants. They’re obviously a tool that has helped millions of people effectively manage their mental health, and they have a place in medicine as a result. But I also think they’ve become too heavily relied upon by doctors and patients rather than more constructive forms of treatment, like therapy. It’s not difficult to see why, though; they’re super easy to use. You just pop a pill every morning and you're fixed. Well, definitely not fixed, but popping pills is far easier than doing the dirty work that therapy requires. Those conversations can be messy and painful and expose truths we’d rather leave alone in the dark. So, why wouldn’t you just pop a pill when given the choice?

While I certainly won’t begrudge someone that chooses to take antidepressants for any reason, I personally felt tired and just generally numb while I was on them. And in my situation, numbness isn’t a lot of fun. Paralysis – which is the complete absence of sensation, not the reduction of it – has taken everything I once felt from my shoulders down. I didn’t want some stupid fucking pill to take away whatever I could still manage to feel from the shoulders up, even when those feelings are sometimes shitty. I already know exactly what it’s like to physically feel nothing. I can’t afford to numb myself emotionally, too. Life is too much about experience and interpretation to further impair the ways I can process the world. And what’s left for me if I do that? So I chose early on in my recovery to get clean and face whatever might come as soon and as sober as I possibly could.

This approach has taken me pretty far in my life post-injury, but I haven’t been able to handle all my thoughts and insecurities over the last 15 years. These struggles also seem to be occurring with greater regularity the older I get. And that’s probably natural. It’s easy to put off bigger, existential issues when you’re young. The world is full of new opportunities, experiences and people, and that stuff serves as a bunch of sand for you to stick your head in for a while. That was certainly true for me, even as a cripple. I had college and work and so many other new things to check out (not to mention figuring out my whole new way of life as a quadriplegic). But the hunger I had for many things in my youth has slowly given way to routine and comfort as I’ve gotten older. While other factors like the nursing shortage and a lower income contribute to this issue, ambition might just be chief amongst them. And this is where mental health gets tricky.

The thing most people don’t understand about depression is how it operates. And this is key to figuring out how you can stay happy. Too many people believe depression is a simple one-time foe to be defeated and discarded. But that grossly underestimates just how goddamn insidious depression can be. Think of depression as a slow and patient siege outside your walls rather than a single combatant. And even when you’re happy and healthy, it’s still waiting patiently outside your gates, probing for weaknesses and looking for a new way back into your life. Then, your dog dies, or life steps on your dick in some other cruel, newfound way, and you suddenly slip back into your old mindset again. That’s where the real challenge with depression lies, and that’s precisely why it can be so problematic for many individuals post-injury. Life just loves steppin’ on our dicks, and depression is more than willing to wait for its moment.

So, if depression is so damn insidious, and a cripple’s dick is under constant threat of being mashed by the cruel realities of the world, what exactly is a guy supposed to do?

I honestly can’t answer that question in a general sense. I have no clue what every guy should do to stay happy and healthy. What makes some dudes tick couldn’t hold my attention for a minute. I can only tell you what this guy does to stave off depression, and the easiest thing I do is try to create a schedule that leaves me with things to consistently look forward to on a weekly, monthly and yearly basis. For a realist like myself, I call these things, “manufactured hope.” They’re the shining stars on the horizon that I’m able to lift my head to and gaze at fondly when struggling with something in the moment. But depending on what you’re into and want to do, this might take a little work and a little capital to accomplish. You shouldn’t let that dissuade you, however. Investing time and money into maintaining your mental health will truly pay dividends in the end.

The things I like to keep on my radar revolve mostly around my hobbies – shocking, I know – and the primary hobbies I enjoy are: metal, cinema (horror, in particular) and boardgames. Between those three interests, I’m able to steadily identify new content coming out all the time (I purchase a lot of music and movies throughout the year), and create events that utilize that content for the future. For example, I host a weekly boardgame group at my home almost every Saturday, and I also try to visit my local theater at least once a week for the latest and greatest in cinema (AMC’s Stubs A-List is a fantastic program). Quadriplegia can be quite isolating, especially during the colder winter months, and those two things keep me interacting with people and regularly making trips outside my home. I’ve also discovered over the years that having fun and interesting things to look forward to makes doing all the monotonous, shitty work that quadriplegia necessitates just a little bit easier to tolerate.

These interests are also able to keep my mind active, even when I’m not directly engaging in one of them at the time. I don’t want to imply that idle minds are somehow more susceptible to depression. I have no fucking clue. I just know it’s easier for me to fall back on all my anxieties and insecurities whenever I’m left alone with only my thoughts and nothing to really fill that void. While sometimes even my best efforts can’t break my negative thought patterns, when possible I’d much rather think about pleasant topics, like art and boardgames, than worry about my health or other aspects of my disability. These questions don’t have to originate from really profound thought exercises, either. I’ll often spend part of my night thinking about the perfect doublebill for lesbian vampire movies (yeah, they’re a thing) or the best metal songs inspired by horror movies. And by giving myself these types of things to think about – as stupid as they might appear to some – I’m able to occupy my brain with healthier and more worthwhile pursuits than just fixating on my disability over and over again.

Another thing I try to do is stay the fuck off social media as much as possible. While I loathe most social media platforms, Facebook is honestly the worst. I lost a few of my friends a couple years back to kids and other nefarious acts of domesticity. I can still call them up and bullshit whenever I want, but I rarely have the opportunity to see them anymore. It sucks. But it sucks even more to look at pictures of them doing shit with their family and other friends. It makes me feel like I’m either missing out on things with them or that they’d rather do stuff with people other than yours truly. If you can believe it. While I honestly don’t believe either of those things to be true, it can still be really hard to push those feelings aside. And I’m not alone. Just Google “Facebook missing out” and you’ll see that this is something a lot of people suffer from. Thankfully, nobody I know leads a really interesting life, so I have no reason to lurk around and create that kind of self-doubt for myself.

But of all the things I do to avoid falling into a funk, I believe expressing my inner thoughts to be the most significant. I don’t think anybody can find truly long-lasting solutions to all the dark shit floating around in their head if they’re not willing or able to express that stuff in some way. While I strongly believe in introspection and looking inward to identify the issues that you’re struggling with, at a certain point, your efforts must turn towards some form of outward expression. Writing gives me an outlet where I can express all of the things I can’t really say aloud to other people in my life. I also find that while writing on a particular topic I’ll often discover a few things I didn’t necessarily have in mind at the outset, and it frequently serves as both a source of inspiration and catharsis that allows me to avoid having to endlessly internalize all my thoughts and emotions.

Therapy helps, too. Unfortunately, too many people – and guys, in particular – attach a negative stigma to therapy. It’s seen as an admission of weakness for some reason, and that’s fundamentally wrong. Strength isn’t being able to handle everything alone; it’s being able to admit your vulnerabilities to someone. Because I choose not to confide most things to my family and friends, I value having a therapist that I can chat with regularly. While just being able to make my struggles known to someone else feels great, there’s also a certain empowerment that comes from verbally conveying your thoughts to someone rather than simply writing about them in a vacuum. I feel like there’s a sense of ownership that occurs whenever you sit in front of someone and state your issues out loud and in-person. And a good therapist is able to tear down whatever walls you may have and call you on your shit. I know mine does. This is also a large part of what I still enjoy about speaking publicly on my injury. Sometimes leaving yourself with nowhere to hide can produce some profound revelations, even if the revealing process makes you feel a little uncomfortable.

Ultimately, whether I’m happy or angry or sad or whatever – the particular emotion is never usually all that important – I believe I’m best when I’m operating like your slimy digestive tract: consuming, absorbing and expressing. (Yes, this implies that my “expressions” on a matter are essentially big, stanky turds.) But in laying out how I try to avoid depression, I’m also really just revealing the things I value most in life. And I think that’s the major take away from everything I’ve said. While my approach and my methods probably won’t work for most folks – I realize loud, angry music and violent, gory movies have an admittedly small audience – I’d argue that the best way for anyone to stave off depression is to identify what you value most and cling to it with everything you’ve got.

– King Cripple

FAQs How Does Your Ventilator Work?

One of the challenges that distinguishes my situation from many others is my ventilator dependency. While there are a lot of cripples that have to spend at least some amount of time on a ventilator, those of us that are not completely ventilator dependent may only need to be on a vent when they're having trouble breathing or when they're asleep. But I'm not that lucky. Unfortunately, my spinal cord injury was so severe, or the actual physical trauma to my spinal cord was so high up, that I can no longer breathe on my own whatsoever. I am now a C3 quadriplegic, and any cripple that is a C3 or higher will almost always be completely ventilator dependent as a result.

But before I talk about any of the specifics to my ventilator, there is a common misconception that I want to rectify first: my paralysis does not directly affect my lungs – it directly affects my diaphragm. It's the contraction by my diaphragm that allows me to inhale and my lungs to therefore inflate. Our lungs are also an organ that doesn't require some mechanical process to occur in order to function. They function simply by letting air flow into them, much like how our kidneys function simply by blood flowing through them. And that's why my lungs still function as well as most people's lungs. It's also why the only thing that's now necessary for me to breathe is some new means of getting air down into my lungs. This is where my ventilator comes in.

The ventilator works by drawing air out of the room – this can be supplemented with oxygen if I'm struggling on room air (21% 02) – and forces the air through the ventilator's circuitry, down my airway and into my lungs. At this point, my lungs take over the whole process by extracting the oxygen from the air and infusing it into my bloodstream. But in order for my ventilator to deliver air into my lungs, it first needs access to my airway. While short-term ventilator patients are often intubated or can use a mask, neither of those options are viable for long-term ventilator patients like myself. A tracheostomy tube (trach) provides stable access to my airway that allows the ventilator to deliver air straight into my lungs and bypass my nose and mouth. But because all of my air intake now bypasses my nose, I no longer have access to my sense of smell. While my sense of smell is still intact – food still tastes the same and all of that – I simply cannot inhale through my nose and utilize my olfactory receptors.

The trach also provides me with the necessary ability to take my voice away while I sleep at night. The trach has a small, liquid-filled cuff at its base that is always partially inflated to help keep the trach in place. When I go to sleep at night, I will fully inflate the cuff and ensure that no air escapes out my mouth while I'm asleep. If I fall asleep without inflating the cuff, it's possible that too much air will escape out my mouth and the ventilator will recognize this as a leak or a break in the circuit and alarm. I cannot speak, however, when the cuff is fully inflated, because all of the air from my ventilator is directed down into my lungs and can no longer pass by my vocal cords. I have to then smack my lips together in order to call my caregiver into my room, but this is always easy to do late at night when the rest of my household is asleep.

When my cuff is partially deflated and I can speak, it isn't really difficult for me to talk. The ventilator will provide me with a minimum of 14 breaths per minute, but it will also allow me to trigger additional breaths when necessary (i.e., speaking). Triggering additional breaths is something that doesn't require a lot of effort or conscious thought on my part. The only thing that takes any conscious thought is the adjustments that I make to my phrasing while I'm speaking. I have to make these adjustments, because I never want to run out of air mid-word or trail off while in the middle of making a point. So I usually have to manage my air as I speak and pause ever so briefly in order to receive another breath from the vent before I continue. This isn't something that's really noticeable, however. Only when I point this out to people do they pick up on the fact that I will talk in slightly smaller blocks than the average person.

But having a trach, like most indwelling medical devices, isn't inherently uncomfortable. It's constant presence even makes it fairly easy to forget about. Only when the trach or the ventilator's circuit is moved is it really felt, and only when either is bumped does it hurt. These "bumps" can result in some mild and momentary discomfort, or they can be severe enough to cause some bleeding to occur and my stoma site to be sore for several days. Managing my comfort level with the trach really comes down to ensuring that my caregivers understand what constitutes a safe and comfortable movement with the trach/ventilator circuit, and that they try to avoid any accidental contact with the trach throughout the day. But this isn't anything that's special to just my trach. Competence and safety are two concepts that are necessary to effectively perform all of my cares.

I treat my ventilator dependency with the seriousness that it deserves, because I know I'm only one ventilator issue away from possible brain damage or worse. But even though my inability to breathe poses the most imminent threat to my health, I want to point out that being ventilator dependent isn't nearly as nerve-racking as many people imagine. I think most people feel this way, because they only focus on all of the things that can go wrong with the ventilator. While there are indeed a number of things that can interrupt my breathing, this type of thinking will almost always overcomplicate every situation and make things feel much more impossible than they actually are. I honestly believe that there's a certain simplicity to my situation that makes both identifying a ventilator issue and resolving that issue relatively easy.

When diagnosing a ventilator issue, it really just comes down to whether my ventilator is delivering a breath or not. And the reason why my ventilator isn't delivering a breath is often unimportant, at least until the situation has stabilized and I'm breathing again. So once my caregivers determine that the ventilator isn't delivering a breath, they'll use a bag valve mask, or what's commonly referred to as an Ambu bag, to keep me breathing until the issue is resolved. This is the easiest solution to every ventilator issue and a very easy way to keep me breathing. An Ambu bag is simply a handheld bag that, when manually compressed, will deliver a breath and then reinflate on its own. The point I constantly make to all of my caregivers is that they needn't focus on everything that can go wrong with the vent, because the solution is always the Ambu bag. I can bag for however long it takes to resolve the issue with my current vent or reach my backup vent either on my wheelchair or at my bedside.

While I've blacked out due to a lack of oxygen both at home and in the hospital, it's been many years since I've had a caregiver respond poorly to a ventilator emergency. But it takes a lot of training before I trust that a caregiver will respond correctly to a vent issue. And I have to trust them. If I don't, I must continue to train them until I do or find a new caregiver altogether. Because it only takes one fuck-up to bring my life to an end. So I will frequently break my ventilator's circuit and run drills with new caregivers to ensure that they are prepared. I want to see them arrive at my side with an Ambu bag in hand before they try to diagnose the problem with the vent. I feel like all of my experiences have gotten me better at training new caregivers and simplifying the complexity of my ventilator so that everyone on my staff knows how to effectively respond to any ventilator issue. And that's all anyone can do when it comes to an emergency: plan, prepare and act.

– King Cripple

On Pressure Sores And Positioning

Success post-injury is about a cripple's ability to manage all of their newfound challenges. While there will always be challenges that are unique to every cripple's injury and circumstances, there are three common areas of concern that most of us, if not all, will have to deal with at some point as we age with paralysis: 1) lungs; 2) kidneys; and 3) skin. Infection represents the biggest threat to any cripple's pulmonary and renal health, but both of those issues can usually be managed through certain treatments and with proper suctioning and cathing techniques. But the care plan for those issues can be fairly nebulous and often have aspects that are specific to each injury. So while I plan to write about my experiences managing those issues at some point, I thought the issue of skin integrity would be the best place to start since it allows for a discussion on more concrete concepts that apply to the majority of cripples.

The primary threat to the integrity of my skin is pressure sores. These are wounds that are created whenever enough pressure is applied to an area of soft tissue that it either obstructs or partially obstructs the flow of blood to the area. They typically occur on or around bony prominences where the skin is the thinnest, like on the sacrum, coccyx and heels. Pressure sores are particularly troublesome for cripples with a high level of paralysis, because we can neither feel pressure nor physically shift our weight to relieve that pressure. And when it comes to managing the onset of pressure sores, there are only two real methods of prevention: 1) utilizing materials that can offload pressure; and 2) consistently changing a cripple's positioning.

Air is the most effective material for offloading pressure followed by materials like foam and gel. Every surface that my body contacts on both my mattress and my wheelchair, with the exception of my leg rests, utilize either air or foam or both. I use a Roho cushion on my wheelchair, which is pretty much the standard for anyone with a spinal cord injury, and it offloads a lot of the pressure on to a dozen or so individual air-filled cells. The back of my wheelchair has also been pressure mapped – a process that's used to identify any areas of excessive pressure – and sculpted out of foam to specifically relieve pressure on my shoulder blades. Then there are the custom pads that keep my legs in proper alignment and ensure that they do not roll out and place undue pressure on the outer prominences of my feet. While all of these modifications to my wheelchair provide a lot of pressure relief to my backside, I still have to make sure that I'm not sitting on any wrinkles created by my clothing. And even with all of these things working in concert with each other, I still occasionally run into issues with pressure.

Another reason why pressure sores are particularly troublesome for cripples like myself – and this one really scares the shit out of me – is because I can never tell if I'm putting too much pressure on a particular prominence until a warning sign appears. And those warning signs will always force me to alter my lifestyle until they've been resolved. The earliest and most common sign that too much pressure has been placed on a specific area is red marks on my skin that persist long after pressure on the area has been removed. Anytime a red mark shows up, I will try to offload as much pressure on that area as possible and may even stay off the area altogether by staying in bed for a few days and rolling up on my side. But staying in bed for any prolonged period of time can also lead to secondary complications like pneumonia. So every skin issue requires me to navigate a delicate balancing act where I will stay in bed to take pressure off the area but still get up frequently enough to avoid pneumonia. Or at least that's the hope anyways.

The mattress that I have also utilizes both air and foam to offload pressure. It houses several air-filled cells, much like my wheelchair cushion, inside a foam structure, and then circulates the air throughout those cells to provide further pressure relief. In fact, my mattress and its air exchange offload enough pressure that I can sleep in a single position all night long. I make sure to strategically place pillows and foam blocks under most of my bony prominences, like my knees and elbows, and I always alternate sides from night to night. While this approach admittedly flies in the face of the second method of pressure relief – consistently changing a cripple's positioning – a large part of life post-injury is knowing what you need to do and understanding what you can get away with. So even though the protocol in almost every facility is to change a cripple's positioning every two hours, the equipment I have in my home allows me to get away with a more accommodating lifestyle. There may come a time when I can no longer get away with certain things like I used to, but those adjustments are necessary for all of us as we age.

None of this, however, changes the fact that it is still absolutely imperative for a cripple to change their positioning. The only caveat is that when it's necessary to change positioning can often depend on the surface a cripple is resting on and their history with pressure sores. Unfortunately, when a pressure sore eventually heals, the integrity of the skin will never be as strong as it was originally. So any area that develops a pressure sore will automatically become more prone to developing a future pressure sore. While it isn't necessary for me to change my positioning in bed all that frequently, I do make sure to change my positioning often throughout the day while I'm in my wheelchair. I do this by tilting the entire seating of my wheelchair – this includes the seat, backrest, armrests and headrest – to such a degree that it causes my weight to shift slightly, and therefore changes my positioning in my chair.

I'm not the only one that needs to be cognizant of my positioning, though. All of my caregivers have to realize the danger that pressure sores represent and how quickly they can occur. They must be competent enough to know how to work safely with my body and how to position it appropriately. While proper training can teach the right person how to do those things, one of the things that all my caregivers must inherently possess is an attention to detail. I can't always see my positioning, and I need my caregivers to notice whenever my hands might be curled or my feet are not entirely in my foam boots that I wear in bed. I can keep track of when my positioning changes due to a spasm since my spasms are never confined to a single extremity – they're always full body expressions. But failing to position me correctly can lead to the start of a pressure sore in only a few hours. And what forms in just a few hours can sometimes take days to resolve.

I talk a lot about managing the issues that are under my control, and pressure sores, by and large, are an issue that is under my control. Managing the integrity of my skin often comes down to the decision that I make. I can choose to avoid sitting on wrinkles and to change my positioning when necessary. I can choose to let my caregivers know when I spasm and need to be repositioned. And I can choose to sacrifice my short-term plans for my long-term health when a red mark appears. But I haven't been completely successful at avoiding pressure sores. While I've been lucky enough to avoid developing any large and nagging sores, I've still done battle with their insidious brand of evil twice before – once on my right shoulder and the other on the outer pad of my right foot. Even though the latter was no larger than a pencil's eraser head when I caught it, it still ultimately led to a bone infection, surgical intervention, IV antibiotics, two separate five-day stints in the hospital and a six-week recovery where I kept my foot elevated above my heart the whole time. It also cost me a chunk of my fucking foot. So yeah, pressure sores are no joke.

– King Cripple