A little while ago, I was swinging on our porch swing while Monty did acrobatics with a stick and ran laps in the yard. I had been down for some time, but I couldn’t place exactly the source of the sadness. All I knew was that I could feel something missing and the result was not a loneliness but a “looked over” kind of feeling. It’s not uncommon for me to feel lost and uncertain about the direction and usefulness of my life, especially when I’m in a crash period. This feeling felt like it had roots in that. As I let my thoughts wander and my mind clear, these words entered my head and seemed to quiet the residual buzz: “I just want to make myself proud again.” It didn’t repeat itself like an incessant thought, rather the words just stood still in bold print, front and center in my mind. And then all at once I knew what that void I’d been feeling was. It wasn’t just a lack of pride, but the lack of pride and purpose that usually comes from working. Uselessness is a terrible feeling, and I know it arises sometimes from the fact that I don’t have a real job anymore. I haven’t in some time. And yet through this whole ordeal, that loss continues to cuts deep. It has me constantly wondering what I’m doing here and where I’m going and how I’m ever going to get there. As a working girl my path felt so clear-cut. I catch myself daydreaming of my desk and my business cards and the “importance” they implied. But once the crutch of a job was gone, everything inside me felt upside down. Who am I if I don’t “do” anything?
Sitting in my bosses office and having to admit with a quivering voice that I “just physically couldn’t do it anymore” was one of the hardest moments of my life. My whole goal up until then besides getting better, was to find a way to hold onto that job. I knew if I was forced to leave it, it meant everything was irreversibly real. It meant despite what I planned or wanted, the illness was making decisions that I couldn’t change. It meant the scales had tipped and I was no longer in control. (Maybe I never actually was, but the illusion felt good) But now here I had come face to face with the truth that clinging onto the job was only causing me more suffering, besides largely effecting the quality of my work. Were I smarter I would have given in earlier and dedicated myself more seriously to getting well. But I was in a sort of denial up till then. I kept expecting to get better. I didn’t want to believe that this was truly going to be the new state my body. No one really wants to accept something like that, I think out of an inborn fear that doing so means you’re giving into something crappy and letting it take over–That you’re giving up on the possibility of getting well. But it was more just coming to terms with a reality and giving my health the attention it needed. Everyone around me seemed to know the time had come and were just waiting on me to call it, so I finally did.
I can remember solidly a few things from that conversation. I can still see his big sappy eyes as Andrew listened to me speak, and the honest calmness in his voice when he said “It’s been hard to watch. I just can’t understand why this would happen to you.” I tried very hard not to cry but the tears fell anyway, much like they are now just remembering the whole interaction. We hugged goodbye and I tried to compose myself. I remember, I think in an attempt to lighten the sadness of that goodbye, him saying to please stay in touch and to come back and visit often. I said I would, knowing I probably wouldn’t. Knowing that life at the gallery would go on without me, while my own life was drifting into scary, uncharted waters. I punched out for the last time and felt totally numb. The French Quarter had just turned dark, freezing and damp, but I didn’t feel the cold at all. I paid the nice parking attendant with whom I normally joked around without even looking him in the eye. He made some comment about cheering up or smiling but I couldn’t bring myself to respond. I moved on autopilot like a robot. Once in the car all the terrible questions made their rounds. What would become of my life now? Who would I be now, sick and unemployed? What if I never get better? I tried to drown them out but the noise of the radio bothered me. That 40 minute drive home over the bridge felt like a dream. Once home, Monty ran up to me and my mom was sitting in her chair in the living room. Our eyes met and I lost it. “Well, I guess I don’t have a job anymore.” And that, as they say, was that.
Even though I fought it, leaving work was the right thing to do and in my condition, was just a matter of when and not if. In the beginning it was a relief– not to have to fake well, to call in sick, to let down coworkers, and to constantly apologize. But not so long after, I began to feel this noticeable hole, like the gap your tongue slides through after you’ve lost a tooth. I had all this new time to kill but couldn’t spend it how I’d like. The adjustment was extremely difficult. Besides giving me purpose and pride, my job had contributed to my identity and livelihood. There was a little space carved out in the world called Mary, and I was useful there; I fit. I did what was expected of me and was paid every two weeks. But now I no longer occupied that space and I couldn’t make sense of what place I held in the world. Without the distraction of work, I also had to learn to just “be” and accept these new circumstances, which was also hard. When you’re sick like that you can’t just leave and go for a drive, or go get drinks with friends to feel better about it. It makes you confront your life head on since there aren’t the typical escapes. I had to begin accepting my experience and not thinking of my days sick in bed as total wastes. I’m still learning to do this, but it is possible. It began with adjusting the expectations I held for myself, and redefining what my definitions of “work” and “purpose” really meant. For so long work was something you did 40 hours a week and got paid for. And our culture nearly defines who we are by what we do. I no longer had a satisfying answer to that question. “Uh, Unpaid blogger I guess?” It took adapting to where I was at that point and not in the past. I was always going to feel shitty comparing my life sick to someone’s who was well. I had to get real about my truth. Still, those adjustments were hard and I am still learning them.
Life with illness means a lot of time on your hands and a lot of solitude. You have to learn how to be still, which I’ve learned very few people know how to do. You’re away from the typical distractions and noise and chaos often, so there is a lot of “being” and not “doing.” It also means getting to know yourself really well. Luckily, I like myself. We seem to get along. But all of this new vast time without a lot of outside expectation took a long time to really understand and warm up to at all. I had to remind myself that being sick is a part of me but not who I am. That took time too. As time went on I would grow more worried that I hadn’t re-entered the workforce. Or I’d feel these waves of inadequacy like I did recently. But sometimes I wonder if it isn’t the purpose of my soul that’s getting carried out because I have a body that doesn’t allow me to be busy and caught up in the regular tasks of life.
This experience has taught me big things and continues to now. It continues to teach me to let go of things, to be still and not be restless, to be OK being alone, and to accept myself as worthy even if I’m not doing anything impressive or achieving BIG things. Most of these were learned because my body wouldn’t let me achieve all I wanted to, and the lesson in humility has actually made me happier in some ways. All of it has made me come to terms with things that I truly find important, things outside of a job where the ultimate goal was money. If I look at this time away from work another way, it feels more like a gift. It’s allowed me to find and develop my voice for writing, which was my passion all along. It’s let me explore many other parts of myself that were not a part of my life when working. Even small things like learning to play my dads guitar and spending more time with my family that I wouldn’t have otherwise. It’s forced me to find the same joy and fulfillment from the small things that I used to require in the bigger or louder stuff. Today it was just being outside in the sun with monty and appreciating the moment.
I think it’s easy to look back on my life with a “real job” through rose-colored glasses. I was “bringing home the bacon”and dressing in nice clothes and looked and sounded like someone who had it together. But I can still remember sitting at my desk sometimes and thinking is this it? This is what I do the next 60 years and then I retire? I’d be naive to say things were perfect and always made sense then, too. They didn’t. But it looked better on paper and gave me stuff to talk about when people asked what I was up to. Those conversations are funny now ;) I was still wondering about my purpose and the meaning of things then too. I was still asking those same questions. The only difference is, I don’t have the disguise anymore. I am clearly not headed in any predictable direction and I truly don’t know what the plan for my life is. But, at least I’ve got some time to figure it out. All kinds of time.
Still I wonder, were I to be better tomorrow, totally healed and ready to emerge back into the quick-paced world, is that what I would do? Go back to work at some job, have office birthday parties again and two-week vacations, and then all my problems would end? I doubt it. What I mean is, I don’t think that’s what this experience is about. There is something more to it than a temporary roadblock for my life. I know it has more to give me than suffering, and my work is to try and bring light to what has felt very dark. I think by learning to navigate any experience the right way, it’s never a total loss. Sometimes it’s the very thing that propels us or makes us better. There is always more meaning and a path to discover if we stay devoted to following the thing that makes us feel alive– this usually leads to finding our purpose, our spot where we fit. I guess it’s the days when I know that who I am is bigger than the things that have happened, that I still have things to offer the world, and I accept the course of my day even in its smallness, that I make myself proud again. It’s often not in what I do anymore, but in how I receive each day and whether I live it out as a gift or not.
Even if all I do is try, that is truly enough.
Health, Happiness, #SickPride
FibroM.E.-Awesome 
This sums everything up in a wonderful way. I have been out of my job- which I loved and worked hard for, for just over a year now. I dragged my heals for such a long time and refused to admit defeat. I have suffered with Fibro since I was 4 years old (I’m 37 now) and was hit like a shovel in the face with Sarcoidosis, because obviously I didn’t have enough pain to deal with. This bad boy took me down hard, and there was no way I was winning this one. It was such an emotional time for me, and I honestly felt that loosing my job was the end of the world. I remember laying awake one night and suddenly thinking “what do say if someone asks me what I do for a living?” this thought haunted me for a long time.
I now look back and wonder “how the hell did I last so long?” only now can I see how poorly I was working a 37 hour week and bringing up my 4 girls on my own. It was crazy!
I have gained so much since then. I too have learned to stop an be OK with that.
I spend a lot of time just sitting and planning what I’m going to do on my next
“good day” and talking to the cats, but i have also learned to live consciously, as a mum I am no longer just present physically, but im actually present on a whole new level, I can put so much more into out life. I’ve found yoga and Reiki and meditation. I swim; unless its a bad day then I float. Floating is so good and extremely underrated.
Once I stopped being so hard on myself, I started loving myself. I eat better, I rest and most importantly I’m grateful for being alive.
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Awesome! Know exactly what you mean about no longer being as physically capable but being much more present and grateful what you have and being right where you are. I think thats the only attitude that carries someone thru stuff like this. Thanks for writing :)
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I feel so sad for all you young folks who suffer like this. I am an old fart at 60 and eventhough I have had Fibro for most of my life, it is just in the past year that I have stopped working hoping that if I took some time off, I might just get better…not. My issues with Fibro are not so much the pain (it kind of just becomes part of you…always there…some times worse than others) but the “all I can muster up any energy for is just breathing” fatigue. I have a wonderful husband but even he gets exasperated by my lack of wanting to do anything social. I could easily live a life of a hermit as I truly do enjoy my own company which for us is such a blessing since we spend so much time alone. I am so grateful for FB which allows me to keep connected to others and for blogs such as this that helps me feel not so alone or weird.
My dream has always been to have a small shop of my own. I am very creative and if I had the energy I would have such a quirky, eclectic, funky shoppe as ideas run amok throughout my brain. I was hoping that my 60’s would be my time to “shine” and I would finally get my dream but I am as tired now as I was when I was working.
So at my age (I am 60 on paper but only 33 in my head and heart!!) when do I stop dreaming and face reality? Do I finally give up all the creative supplies I have bought over the years (they are in the thousands of dollars) and just keep a few to use for my own enjoyment? If I let my dream die, what then will I have to look forward to? My husband has just bought his dream business on top of working 60 plus hours at his regular job so I am home alone much of the time (which I don’t mind at all). I have never been a “Suzy Homemaker” type so just keeping the house clean is not a high priority and vacuuming kills me (which it almost did when I was doing the stairs and the vacuum came off the top step and landed on my head…I wonder how many people are killed a year by doing housework?)
I so understand the profound sense of not being “useful” or having a purpose. I have been off work for almost a year now and everyday I think, “Geez, what a waste of my talents and gifts by just sitting here in my house not out helping others”. It’s a constant battle inside my head where I ask myself if I am really sick or am I just lazy. I should really keep a record of all the things I do do during the day especially on the rare days when I have energy and rearrange furniture and redecorate and paint the furniture or have crafting classes at my house. Or watch my three little grandbabies.
I bet most of us are way too hard on ourselves and if another ill person were to see what we could do, they would be amazed. I guess, unfortunately, there is always someone sicker than us and our life looks pretty darn good to them!
There is an old saying that we Fibro/CFS need to burn into our minds….”Bloom where you are planted”. God made each one of us for His purpose and He knows what our limitations are but He can still use us as we are. Each one of us has an unique gift that only we possess and a purpose that only we can fulfill. Remember that. Rest in that knowledge. You matter. You have worth. You have a purpose.
And Mary, you have such a way with words and always give us hope. Your purpose might just be to keep writing and maybe turn your blog postings into a book. You matter so much to so many…never, ever forget that.
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Hi, and thank you for such supportive words. As I read your story I felt an instinct to tell you not to sell everything and give up on your dream, but to start small. Start creating in your new time off.. Drawing or painting or whatever your supplies are for. Its something you can do sick in bed or well. You dont need to be moving furniture on your well days, that will set you back. And you dont need to be a betty homemaker now just because you have time. You clearly have a passion and gift for the more creative world, so give yourself over to that side more. Start creating and see what happens. Who knows, maybe the shop you want to run could turn into an online shop and something you could enjoy and run from home. The point is, youre still “33” and youve had a drive to try this other route. Now you have the time, so try.
And let us know how it goes! all the best. ;)
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The metaphor of the lost tooth crushes
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Wow Mary! Great writing here. As someone who continues to go to work everyday and who loves their job, I often feel like there isn’t enough time in the day and that I’m scrambling and what you describe here I feel too in an opposite way. Sometimes I worry that my job is taking over who I am and that it is hard to balance both. Your writing is amazing and getting better and better and you should be proud of it because it touches me and many others too. Keep up the great work. You have a chance to give insight into the world that most people never stop to notice. I am proud of you.
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Aw nick, thank you for your words, and i know just what you mean. Writing this i knew that just as easily i could have very little time and be ultra busy and face similar issues, which i think many people do. In your case maybe the emphasis has to be letting what you do mold and evolve who you are and not take away from it. In other words, how you work could be just as important as what you produce. The race against the clock is difficult and I hear everyone around me talk about it. I think sometimes we forget that we have a choice in what we give ourselves over to, but it usually means letting go of perfection or every desired outcome, because there will never be enough time or jobs or recognition etc. I think the point for you is the same as for me, how do maintain and grow who we are without being taken over by our respective work. And who are you? An awesome, hilarious, loving, smart and caring family guy. Your job there is just as important, but the balance has to be organized proactively, or the work will usually win. You’re awesome, cancel a meeting and eat popcorn and ice cream tonight, Just to try it. I know a few people that would be real excited about that :) see you soon.
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Also nick, youre work ethic and devotion is pretty incredible, and youve always been a role model especially in terms of hard you work despite the circumstances. You make me proud too. Keep it up! But take tiem off when I come to town. Xoxo
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I completely identify with your feeling of ‘less’ because of lack of validation from work. While my experience is nowhere close to how hard it is for you, I shouldn’t even compare really, but I know what you mean when you say you feel directionless.
It might be a bit too cliche, but I’m going to say it anyway – I think life is constantly steering us towards what we are supposed to do and who we are supposed to be. Trouble is we always think we know better and try to hold on to what we want instead. That’s natural, it’s what we’ve been told we ought to do. But, maybe if we relinquished some control, if we didn’t hold on so tight, maybe we could really find what we didn’t know we were looking for :)
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Maybe cliche but totally true.. And it is something we all face, sick or not. Its not what i chose but in the end its given me some amazing things. And taught me to relinquish control– one of the biggies. Thanks for reading and please know, i like hearing of others experiences, sick or not. At the end of the day many of our battles are the same, and its good to hear a lot of perspectives in how to face them. Thx for writing :)
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This post nearly made me cry, I can so relate to that determination to carry on, even when it is clearly not working any more, and the deep sadness when you finally give in. For me the hardest part was losing my fun activities, going for long walks and karate. It took me months after I stopped being able to do kakarate to finally cancel my membership and many more to sell (most) of my equipment, some I still haven’t been able to let go. From a work perspective, I was lucky enough to find a new job which was much less physically demanding than the one I had when I got sick, and where I am working a lot less hours. I am also lucky to have a flexible boss.
I hope you find your sense of purpose again soon and feel happier :) and remember that your posts mean a lot to a lot of people
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Thanks kimberly.. Im working on it! And happy you found work you are able to manage, thats great. Maybe keep a few items because when they find a cure, youll be able to do those activites again :)
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I started crying when i read “I just want to make myself proud again.”
Me too.
I’ve gotten over not having a ‘job’ – it only took about a year and a bit of soul searching and therapy. But I still struggle with the purposelessness of my life. Just being able to do basic things like cook dinner a few nights a week, go for a walk every day, not feel like a huge burden on those around me – if I could only master those then… Well, it would be a start I guess.
You are right, we need to find joy and fulfillment in what we can do, regardless of our circumstances.
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Trust me i know what you mean, and i dont write these words as though making our lives happy meaningful despite being sick as if it were easy. It is definitely not. But i also feel that there is a deeper purpose for people like us, and its not in the conventional 9-5 world. Its just up to us to find it while the docs find us a cure ;) let me know if you find it and ill do the same! Hang in there, and remember to start small. Some days if i can find a reason to laugh, that is enough.
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Your words really got me thinking about how I was OK with not working, but still had ideas about being ‘useful’ and ‘productive’ that were making me stressed and upset. Even though I can’t do certain things, I need to be OK with my lot in life. It’s damn hard, but like you say, I need to start small.
I wrote a short post about it: https://livebedocfs.wordpress.com/2015/05/02/light-bulb-moment/
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Awesome! Start anywhere. Hang in ;)
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