Something funny happens when you become chronically ill. Ready? You become totally shitty at fulfilling the roles that probably came easy and natural to you before The Grand Interruption. Parent, kid, sibling, husband, wife, friend–all of those roles are going to suffer, because you’re simply unable to do the things you could before. Your capabilities become limited, your time becomes precious and cornered, and your ability to meet your and other peoples expectations will fall short, again and again. I admit it fully, I’m in general an unreliable source of help, or maybe just unreliable period. And if you don’t think that stabs me straight in the ego, then try saying out loud “I’m a human wasteland” and see how it feels. Because that’s about how it feels.
But we have to be fair, to ourselves and others. We can’t hold ourselves to the same standards as before, especially when we don’t have the same working parts. And we have to remember that the adjustments we make are not adaptations that we alone have to get used to. All those people for whom we provided some kind of role, they’re going to be affected too. They’re going to get exhausted, be disappointed, feel the pain of you not being who you used to be, just as you, the sick person will. I don’t know what it’s like to be a friend or a family member of Mary Gelpi, but I know that I begin 90% of my texts, emails, and conversations with an apology–because I couldn’t make it, I’m responding so late, I won’t be able to attend (insert anything important) I’m sure they become as tired of hearing it as I become of saying it. It’s exhaustive, saying sorry all the time. It’s probably tiresome to be on the other end of it too. But you are sorry, you don’t want to be this crappy of a friend or sister or girlfriend–and while being sick is nobody’s fault, it is the reality and it’s going to be painful. Learning to redefine our roles must be a lifelong process, I’m not sure. I just know I’m still learning.
Maybe a part of being proactive in that transition is becoming more honest and realistic with myself about what I’m able to do. I don’t deny that I suffer from wishful thinking, and probably make commitments I shouldn’t. Letting people know that I can’t be counted on, which is still hard to say, would probably let fewer people down less often. They have to know what to expect, which is unfortunately very little, but it’s up to us to fill them in. Sometimes you get so busy being sick, you forget to communicate. You forget that people don’t know, or remember. Or you give up on telling them because it can feel repetitive and pointless, but I don’t think that’s true in reality. If I’m not honest about what I can do, out of fear or pride or whatever it is, I will let people down because they won’t know where the line is
I’ve had to face the reality in the last few years that there is no such thing as “solid plans” for me, or relying on myself 100% to be able to follow through with them. Every plan basically has an invisible “tentatively” written behind it. Last month I rescheduled 3 doctors appointments because I was too sick to make it. I have no idea how I’ll feel one day to the next, and that takes constant adjustment. I remember my whole family coming to visit last summer, they were sitting around my living room trying to figure out who could babysit the kids while they went to the French Quarter for the day. I remember sitting in the room saying Guys, I’m right here, I’ll watch them. I was actually, momentarily, offended that they didn’t consider me. Then someone said Mary, you can’t even do your dishes right now. Oh yeah, whoops. I forgot my own unreliability! As Louis C. K. would put it, I’m a non-contributing zero. Hah, yes. That sounds right. I had to laugh that even I couldn’t remember that I just can’t be counted on right now, and as much as that can be a kick in the gut to admit, it’s sort of silly to take it personally. If you’re sick, you’re sick–just admit it and keep moving.
I said in the beginning that being sick makes us crappy at fulfilling our roles, and in the traditional sense that may be true. But it also remains that when you’re sick, you just can’t do what you can’t do. If you don’t have legs, you can’t walk. It’s toxic to compare yourself to an old life where all your faculties were in place, to a new one where half your parts aren’t working. But being sick forces you to redefine your role, and I think there are ways to use your new way of “being” in the world and still be functioning in your respective roles. It’s not as is being sick effects your ability to love. If anything it’s made me love deeper, made me more grateful, and made the friendships that have lasted grow in certain ways. Still, I fail a lot, and many times it’s because I’m a flawed human being, not a chronically sick person. So I try to be extra cautious of both. Like most things being sick teaches, awareness seems to be key.
I’m always asking the questions that I think everyone is asking; am I doing the right thing, am I good person, what am I meant to do with my life? My circumstances? We all have our different sets of assets and vices, and it’s a balancing act trying to find the middle part where your feet are solid on the ground. Becoming chronically sick picks up your lifeless body and throws it upside down and backwards so that when you land you hardly know which way “up” is. It’s a puzzle, a maze, finding your way, but not impossible. The guru’s are always asking “How are you going to use what’s been given to you?” I always looked at that question as asking how I’d use the gifts I was given–the positive things in my life. Now I realize the question is far deeper than that…I think more often they mean, What will you do with your pain? How will you use this Extreme Disturbance to do better? Well hell, I don’t know. I just know that all we can do is try. Many times that means living with the mystery and not the answer. Also not easy to do.
I think it’s possible to use the condition of being sick in positive ways and to also maintain your roles by newly defining them. It seems to require incredible creativity and ingenuity, and I’ve certainly suffered from a lack of those many times. But I know there are ways to transform your old ways into new ones that are equally rewarding but not costly or impossible. I wouldn’t have confronted these conundrums if I hadn’t become sick and lost control of all the things I used to think of as mine. It has at least opened me up to the possibility of higher consciousness, and compared to who I was, I know the Mary without control has a better grasp on reality, is more compassionate, a better listener, less proud and more forgiving. I hope that doesn’t sound like bragging, I just think it’s good to examine the gifts that our so-called shitty circumstances can uncover. I obviously have a long way to go, but I know being sick has opened up deeper channels for me, and transformed the way I see the world and being in it. Maybe it’s selfish, but I learned forgiveness by having to forgive myself first–for being where I was, for the things I could not do, for always thinking I should be doing better or further along. I had to let the unrealistic expectations go, and forgive myself for not reaching them.
I remember in my first serious relationship, which wasn’t until college, he frequently complained that I never apologized. My response was always “But that’s because I’m not the one who did anything wrong.” Holy cow, I’m the worst! It took years of learning humility and grace that being and saying sorry is a virtuous thing. It means recognizing your wrongdoing and at least becoming temporarily conscious of things you can do better. When you have a fight with someone, sometimes it’s because one person flat-out messed up. But many times, it takes two to tango, and talking things out, forgiving, letting go…all of it is stuff that moves both people forward. I don’t say this pretending as though I’ve mastered the art–I only know it’s there, it’s a choice. And it’s a good thing to know. I don’t know what or who I’d be like, were I still in my structured world, independent, living my life. But I know I enjoy the view from where I am now much more. I almost don’t look at life as mine anymore–I’m not sure whose it is. I’m still the driver, but it’s definitely a borrowed car.
Anyway, I guess this is your healthy reminder to keep those expectations low! And be grateful for the people who love you despite your human-wastelandednesss. They obviously see that you’re still cool despite being sick. And when people ask you to do something you’re incapable of, remind them with a smile: “I’m a non-contributing zero!” Then find new ways to contribute. :)
Health, Happiness, New Expectations
7 thoughts on “Great Expectations…OK Zero Expectations”
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I completely understand you. Trust me I exactly know what it feels like. I saw that you haven’t read any comments or responded to them. I hope you soon get better and do that.
I know it is difficult for you and your loved ones equally. I may sound harsh and rude, but it works this way – practise to be dead cold by heart. Try not to take anything too deeply. Love, help, be compassionate, and everything who you are…but just stop taking everything so seriously. I magine the life of your loved ones without you. And do not go into the trap of self pity my dear. It might drive you to the darkness from which you may never come out. You can still feel, see beautiful things, eat tasty food, laugh, cry, see the sunset, feel the water coming to the shores, hear a baby laugh…life in any form or stage is beautiful and you are very much alive. You said you have changed so much after knowing about your illness. Change a little bit more – appreciate yourself my dear. If you need to talk you can DM me on my insta handle @pink_logs
Live long and live strong🙂🙂👍
Wow, this post struck a chord with me. I suffered burn-out at age 21 and have not been able to return to most of the roles I fulfilled before then (I’m now 31). That being said, my life is much more meaningful now than it was before. Part of the reason for this is I’ve had my disabilities that contributed to the burn-out symptoms my whole life, so before I fell apart, I was basically pretending to function well. In this sense, I can’t relate to life with an acquired chronic illness or disability (though I do have some acquired physical ailments).
I can also totally relate to the adjustments the people around me have to make. I hardly knew my husband yet before I fell apart (having met him three times), but my parents and sister had/have a very hard time accepting that I didn’t finish college, never worked and spent over 9 years in an institution.
MARY!!! As always, I feel like I’m a smarter, better, more forgiving person (of myself and everyone else) after reading your words. Thank you for sharing your wisdom (how you get so smart & insightful gurrll) and making me feel better about what often seems to be a stupid existence. Big hugs to you. m Sent from my iPhone
I can so relate to this …all of it… even the rescheduled appointments … my one dr even tho I called in plenty of time gave them over 24 hours notice wants to start charging me 150.00 for rescheduled appointments when hes the one treating me for fibro n lupus … This healthcare down here is really getting bad… I’m sure it is every where…
Another wonderful post. I’m sure most of us are sick-to-death of apologizing and disappointing people. And I feel like such a whiner if I post a quote or a blurb or an article on FB about how I don’t mean to not follow through but I am unable to predict how I will feel in the next hour, let alone three weeks from now.
Yesterday, I was feeling pretty bad and my daughter called and asked if I could babysit for the day and because I love my grandbabies I said yes and by the time they left after being here for 9 hours, (four kids, 7,5,3,1) I was beyond exhausted and knew that I would have to cancel out on my plans for today and disappoint yet another person. And I am finding out that my dream of having my own studio/shop is much harder on me physically than I thought it might be. Just having to be somewhere besides home is hard even if the place is a happy place. Sometimes I just want to crawl into a small, dark space and just “be”…..no commitments, no interaction, no noise, no smells, no guilt, no responsibilities, no nothing. I suppose I have just described being dead!
I love this one, as always! I thought I had the whole living within my limitations down pat… So of course I went and over did it and am still trying to meet the plans I made at the time while also trying to unplan for the coming weeks so I can rest and recover! It’s a never ending battle. But it’s certainly not without its upsides, it was lovely to be able to help a fellow chronically ill friend a couple of weeks ago and have her tell me how nice it was to have a friend who truly understood.
Thankyou for the reminder to look after myself and keep reminding myself and others what my limitations are so we can all be happier with what I can achieve!
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