What can you receive from me?

I went to an event recently where the following question was posed:

Are you a giver or a receiver?

I was impressed with the language of the question. To discard “taker” and to replace it with “receiver” was, to me, brilliant, as it took away so much of the charged morality around the idea of “taking.”

Yet I still felt a jab of shame when I answered that I was a receiver.

Throughout the event I felt myself on the precipice of an understanding that felt huge and yet almost too much to handle. I felt so much an outsider to the experiences and anecdotes of the other individuals in the room with me, because, I eventually realized, their definition of giving and receiving wasn’t quite the same as mine was.

I’ve always viewed myself as a draining individual. I am bipolar and autistic, and I often have an intense emotional energy, which can take a toll on those around me. I am also chronically ill and often require assistance or accommodation that can be taxing, either physically to provide or emotionally to witness. I tend also to be a financial burden, as my disabilities limit the work I can do and thus my income, and so my monetary provisions are often fulfilled by my family. I try to counteract these tolls and taxes and burdens whenever possible by asking for as little as I can afford to.

This extends to things I need, such as doctors appointments and accommodations, I will push through things I shouldn’t, simply out of a desire not to burden someone else with my problems. Many of the times I’ve harmed myself in the past, it was because I felt that asking for help would be too taxing for my friends or family.

This was the level to which I understood that I resist receiving, before I entered this event. What I realized while I was there, was that I have an even stronger resistance to receiving things I want but do not, in my judgment, need.

The most glaring space in which I do this is my relationship with my boyfriend. I have, until now, refused to tell him what I want out of our relationship, opting instead to tell him that whatever makes him happy will make me happy. This has lead to a lot of frustration on both sides, as he tries to lead our relationship half-blind and I try to get my needs met without saying what they are.

So when I went to this event, I realized that the common definitions of giving and receiving were much more broad, to include both needs and wants. A child needs to be cared for and wants to be taught to sing. Providing for these two things would both be considered giving. Having them provided would both be considered receiving.

Something I also noticed was that the common definitions of giving and receiving were much less about obligation and much more about desire. Of course, there is a lot of giving and receiving that is based at least partially in obligation, for example caring for children and going to work, but rarely, it seems is it solely obligation that motivates someone’s giving. There is always desire to give.

When I reflect on this, I think, of course, when I give, I always have the desire to do so, at least in part. When I give my employer my time and energy, I do so out of, yes, obligation because I have committed to do the work and I need the money, but also out of the desire to be productive and to earn the respect of my employer. When I give my friends advice, I do so completely out of a desire to connect to them and a desire for them to be happy and healthy.

Generally the argument is that a balance between giving and receiving is ideal, and I would agree that for those who are healthy, it likely is the best choice. I consider, though, that there are those who do not have the option to give as much as they receive.

For many chronically ill and the disabled, giving as much as one receives is an inconceivable task. Even if one pares down what one receives to the bare minimum, as I attempted to do so, it may yet be impossible, and due to that reduction, one may not have the energy to provide anything to anyone else, regardless of desire.

I would argue that for the chronically ill, a different type of balance must be struck. It is the kind of balance between one’s own quality of life and the quality of life of one’s loved ones. A chronically ill person still has the right to want things, to have passions and interests. Often this is forgotten. Chronically ill individuals are so often viewed as taking up so much energy already that they shouldn’t get to take up more energy doing frivolous things. But they have every right to do things that are just fun or interesting or exciting.  However, their right to these things does not reach any further than their loved ones rights to those same things. I am not advocating that a caretaker give up all of their interests in order to accommodate a chronically ill person’s every fleeting passion.

I found myself, as a disabled person, forgetting sometimes that I am a person. With all the taxes and tolls and burdens I place on others, I started to see myself as simply a weight to be carried. Because I refused to ask for things I wanted, I never had enjoyable experiences, only survivable ones. And I never had the opportunity to have positive shared experiences with where others offered something generous to me. I lost track of who I was, and how I related to others.

I also lost track of the fact that I do, in fact, give. I may not give as much as an abled person does, but I do give what I can, when I can, and joyfully. I do not hoard my resources, receive only to never give any away. I can be a giver, too.

I am still trying to find the balance in my life, between asking for what I need and for what I want, and for giving enough in return. I am still terrified of asking. I am still learning to advocate for myself as a disabled person, to say that I deserve more than survival. I deserve joy. We all deserve joy.

Mara Passio