Sometimes I momentarily detach myself from my situation and think “Damn, this guy sure asks for a lot,” as if I impose an insane amount of caregiving requirements. I get sucked into that thinking and feel like the most selfish person. I know I’m being a bit harsh, so I do cut myself a lot of slack. After all, it’s not like I’m a healthy, bored suburbanite constantly asking for help or unloading my personal problems on other people without reciprocation. Instead, I have to rely on other people to do just about everything for (or with) me because I’m sick.
It’s easy for a healthy person to look at my life and say something dismissive like, “Oh, I bet he’s glad to not do laundry,” but that’s just not true. I used to love doing things for myself, even mundane or laborious chores. I loved doing dishes and cleaning surfaces. I even sort of enjoyed doing laundry. And perhaps now more than ever I wish I could do those things. I wish I could feel the warm water flow over my hands as I wipe down a plate with a sudsy sponge. I wish I could bury myself under a pile of warm laundry until the heat dissipates and it’s time to fold my clothes. For my entire adult life, I’ve had a method — a routine or process — of doing these things and many others. But all that went out the window when I could no longer do them. Inevitably, that’s when things changed.
My Way Meets The Rigors of Caregiving Requirements
Now that I rely on caregivers to do things for (or with) me, autonomy is but a faded memory, a blissful part of a life lost long ago, or at best, a sliver of my former independence. Perhaps that’s why doing things on my terms has become so important to me, it’s a small slice of normalcy and control in a situation of which I have neither.
The downside is that my caregiving requirements often become more difficult for my caregivers. I get so wrapped up in doing things my way, as if I’m still completely autonomous, living my best life, doing things on my terms. I have engineered most aspects of my life to fit my disabilities. I have a Ziploc bag beside my bed because I can’t walk over to the trash bin; I drink from straws because I can’t lift the glass to my mouth; I use a dim flashlight because a desk lamp or overhead light is too bright. The list goes on and on, but the common denominator is that I have carefully crafted these things to fit my preferences while I’ve been sick.
The problem is: There are few instances over the last three years in which I’ve done anything substantial by myself. I need help doing most of my daily tasks, even the ones I have so carefully tailored to my current lifestyle and preferences.
So, when I find myself completely immersed in whatever I’m doing, I eventually snap out of it and remember: Oh hey, there’s another person here, someone helping me and we’re supposed to be working together. But I don’t want to work together, not on things I’ve done alone my entire life — bathing is not a team sport, eating is not a partnership, and brushing my teeth is not a meeting of minds.
But for me, nearly everything I do has to be collaborative. I have no choice, at least for now, until I get better. Otherwise my needs won’t get met.
To me, asking for help has always seemed like eating food — if you don’t do it life will be difficult, but if you do it too much people will start to judge you. And if you’re like me, you’ll start to judge yourself.
I judge myself every day for asking for help doing the simplest tasks. Yet, there is something inside of me, something engrained deep within my psyche, that insists on doing things my way, even when I’m getting help from someone, who undoubtedly has their own way of doing things. I suppose this is an issue because I have paid caregivers. I’m paying them, so I feel entitled to do things my way. But, at the same time, I’m not a tyrant. I would like to be open to the input of others. It’s just that I never expected to have to consider someone else’s opinions and methods while performing my most intimate tasks, things that most people do alone.
This is where my caregiving requirements get especially difficult. I’ve grown accustomed to asking people to make me meals the way I would have made them prior to losing my ability to do so. And I’ll ask my caregiver to put a specific set of sheets on my bed, but I begin to worry about this dynamic when I find myself micromanaging, usually to the point of exhaustion. Why do I care so much about how things are done? Do I actually care or am I just bored with such an uneventful life? Does it really matter what sheets are on my bed?
These things aren’t going to make me better. Sleeping on my favorite sheets isn’t going to miraculously bring me back to health, using coconut oil instead of canola oil isn’t going to cure my illness.
For this reason, I worry that my delegating is too much — too much for me and too much for my caregivers. It’s exhausting to micromanage my life, for everyone involved. So for my health’s sake and the sake of the people helping me, I should probably knock it off a bit. But it has become a matter of principle for me: Because I can’t do things on my own, I want to do them exactly how I would have done them had I not gotten sick.
But sometimes I’m so particular and neurotic about the way my life is orchestrated, it often feels like I’m being selfish. Although nobody has told me directly, I’m sure the people in my life have noticed. Maybe they don’t consider me to be selfish, but probably annoying at times. Awhile ago, I overheard someone ask one of my caregivers about the things I ask her to do. I forget the exact question, but she replied by saying, “He’s very particular.” I can’t argue with that, but my rationale runs much deeper. I am the way I am because of years of fighting for my health. I am the sum of my life’s experiences and many of those experiences have been a struggle. So sometimes I need to do things illogically because that’s just how I’m wired.
About a year after I first got sick, I was searching for answers to my poor health and needed help getting to a doctor’s appointment. I lived with two roommates whom I was fairly close with and could have asked for help. I’m sure they would have gladly taken me to the doctor’s office, but because of pride and a fear of vulnerability — perhaps not wanting the people I lived with to know how sick I was or simply not wanting to inconvenience them — I couldn’t bring myself to ask my roommates for help. But also, I felt like shit, physically, and I was afraid. I didn’t want a friend to help me, I wanted, perhaps even needed, family. So instead of doing the logical thing, asking my roommates for help, I asked my dad to drive three hours to take me across town to see the doctor.
I was very grateful he did that for me, just as I’m grateful for all the help I’ve received from other people over the years. I know there will come a time, and to a certain extent that time has already come, when I can no longer rely on these people for help. It’s scary to recognize that this is the case, and to not know what will happen in the future. All I can do is hope things get better, not worse, and that just how I’ve adapted to my current situation, I will figure out a way to get my needs met in the future. Though, I may need to be less particular about how things are done. So it goes.
BEFORE YOU GO . . .
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