living life in the margins

[Welcome to our annual Guest Writers Series. Meet articulate contributor #11...]

Have you ever stopped to think of all the lives you could have lived? We made so many choices to get to where we are today, and if we had heeded another call on our time, where would we be? Would our lives be better or worse? Or would it simply be different with the happiness factor remaining the same? 

For me, some illnesses have forced me to make changes to my life in a profound way, and summer is when I find myself growing resentful. Though I try to embrace and accept everything that falls into my life, this one is bitter. It’s lupus, and I cannot get any sun at all, ever, or I’ll get very sick, as in lying in bed in pain with no energy left to get up and do something, anything. And while I’m in bed, lupus is attacking my kidneys, so the whole thing can be serious.

I skirt along the edges of summer, by making my peace with her. I come out to garden close to sunset, and I water my outdoor plants after dark. I set the sprinklers after sunset and I read outside in a deep back porch that’s shaded to have a slice of summer. 

Many people live life in the margins. It doesn’t have to be an illness. It could be an addiction that needs to be avoided, such as alcohol, so hanging out with people who drink a lot is out. Going to the bars is also a no-no. Weddings can be difficult to attend, and so many parties are fraught with temptation. 

Or are you an introvert to the point where trying to hang out in groups sucks all the energy out of you? Maybe it’s a career, or motherhood, or dealing with depression. Whatever it is, many of us live lives we never thought we would, but to survive and thrive we must. We bow to our circumstances and give in or give up some of our ground, and the boundaries change all over again. 

When I’m frustrated by my limitations I recite a verse from the bible saying, “The Lord giveth, and the Lord taketh away. Blessed be the Name of the Lord.” Short, but it’s very effective. I don’t know how people without God in their lives get through a terminal disease. Or a life so full of trials that a person needs to lean on someone or something. God has to enter the equation at some point, or what was the point of it all? 

I don’t want my life to be wasted, so I decided long ago to watch who I spend time with, since being with others drains my tank, and lupus compounds it now. I have only so much to give to others, and if I do see someone that day, I’m usually lying flat on the couch that evening. No cooking dinner. No chores. Just letting my body have the rest it requires of me. 

How do those of us on the sidelines decide to make our lives meaningful? That’s where the idea of all the lives we could have lived comes into play. What if we had never fallen ill? Then again, there are good lessons to be learned from our fragile bodies. Maybe they’re not lessons we ever wanted to learn, but doing so makes us so much better as long as we don’t become bitter and brittle. Who wants to hang around someone who’s mean and angry at life? No one. 

So we pick ourselves up after a small pity party and head out. Those of us who can manage a schedule can join in on clubs and groups. I left the neighborhood book club when I could tell the leader was feeling angry about my missing many of the Thursday night meetings. She didn’t understand how I had used up every ounce of energy that day and had nothing left for book club. The leader felt rejected by my actions. 

I can’t be friends with someone whose feelings are very hurt if I cancel plans. I had a friend who felt so rejected, I spent most of the next phone call reassuring her that our friendship was good and valuable to me. And you know what? After being hospitalized one time I decided I needed to be free of this person, and so I quietly slipped away from her. 

If we’re clinging to the walls while the rest of humanity is in the center of the room, we can be ignored, feel less than, feel tired of the game we’re forced to play, or we can choose not to be around many others. It can be so much easier if we don’t have to consistently explain why we are the way we are. It’s easier to have one or two people who are willing to understand, even if it means talking on the phone rather than meeting for coffee. 

What I have decided is to be present for my family, and since my children and their families live locally, they are the ones I choose to be present for. I take their calls, though on days when I get my infusions I might delay while I sleep away that day and night. Other than that, if I see a call or text from anyone in the family, I reply or take the call. That might explain the friendship issues, since my family has grown from five of us to seventeen all told. (I’m a grandmother to nine, and mother to three.)

If someone needs help, I try to help. Sometimes it just looks like me dropping off their favorite coffee drink. Sometimes it means making memories with my grandchildren. And other times it’s listening. I can’t fix most things for my children anymore, but I can walk with them (figuratively). They all know the challenges I face, though grace comes from each one in different measure, and I am trying to accept it. This life requires listening, and it’s taken decades for me to learn how to do this. I still have days where I forget how to listen, how to know when to help, when to push past my limits due to needs that simply must be met, and when to say no. 

Those of us living in the margins of life are still living, we just do life a bit differently. It might take a long time to accept the way life is going for us, but there’s a quiet peace once acceptance occurs. We might wistfully compare ourselves to those who look like they have it all, or at least more than we do, but that’s another part of this kind of life. We have to refuse to compare, and that’s often part of the learning curve. 

When we who watch from the sidelines wonder about those many different lives we could have lived, it truly is something we dream about and sometimes want. We can’t have it all; that’s the point. We can’t have most of it, perhaps. So we take a slice of our dream lives if we’re willing, or take a sliver of anything, which isn’t as fulfilling, and we live. 

Those of us in the margins are still living. This life is all we have this side of heaven, so we try. We keep trying, even if the road is dark and lonely at times, as it is for many people. That’s the point for all of us, isn’t it? Never give up. I like to think it’s called hope. 

Respectfully...

ED