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Chronic Snarkopolist: Grand Adventure
I have always described myself as a low risk tolerant person. I do not gamble and do not enjoy Vegas. I don’t even play poker because I don’t like handing over plastic chips. I’d rather stack them up and organize them into neat piles. Low risk tolerance is NOT easy when you are chronically ill. In fact, chronic illness is one big cluster fuck of adventure and risk and learning to cope with high ambiguity.
Perhaps for these reasons I prefer low risk in all other areas of my life. Meanwhile – nothing about health is a sure thing except what we know to be true – weight and food and exercise and positive attitude all contribute to better outcomes. But throw in all our jacked of thyroids and prednisone, secondary illnesses caused by medically necessary drugs and treatments and some of what we know goes out the window. Weight gets hard to maintain no matter how healthy we are or how well intentioned our lifestyle.
Still – pondering joy and love and all the big things in life I’m wondering – does anything ever stop us from fully living life? Something I’ve noticed is people either participate in life or they don’t. They wallow or they live. And often we swing back and forth. I know I do.
Mostly we are fueled by a powerful place of curiosity and wondering what is next. Sometimes we are terrified and dread. For me there is only really LOVE and FEAR. I can allow my life to be guided by one or the other. And sometimes I am overwhelmed by darkness and have to allow it to overwhelm me for a bit and hold on.
And something powerful always happens – ALWAYS HAPPENS- just when I’m at the bottom – love- LOVE SHOWERS ME and I float back again. If I could express to you how much love came to me from the tidal wave – friends reaching to me – gifts, letters, cards, phone calls, people LISTENING TO ME, special people being kind. And even just rare strange things like a celebrity drawing a costume sketch for me- all these things build up to delight me and bring me joy. And JOY is something I need to fuel my grand adventure.
We all need this in our life. We need to feel like life is worth living; like we have connections. Like we can reach out and touch each other, laugh, find meaning. And I know during my most sad and despairing moments I feel that nothing is further from the truth. And when I am my most joyful I believe the very trees reach out and the leaves and branches point me on my path.
Somehow we all seek to participate in life – to engage each other and the process of living. We are all here doing our best. Most of us, often feel like we are constantly sacrificing ourselves for others. Especially women and more sensitive men – feel we are giving pieces of ourselves away so others can live happily. And we wake up one day and say WHERE IS MY GRAND ADVENTURE? WHY IS THERE NOTHING FOR ME? WHERE DID I GO?
And I’m here to tell you – this is your life. This now is your place of freedom! This is your place of beginning! This breath is yours! Take it! You can never count on anything – not even your next breath – but we never stop to be grateful for our breath – we just count on it coming and going except those of us who have labored breathing. We never stop to count on our hearts beating except those of us who have implanted heart valves. We never stop to consider our hormones until we take synthetic or additional amounts to regulate ours and know what it feels like when ours are out of balance. We never consider what it feels like when our bodies do not function until ours no longer do.
And the crazy thing is- THIS IS OUR GRAND ADVENTURE. This is our journey. The greatest freedom in life is the one where you stop being afraid of life or death. And that is our great contradiction. Living our best life with joy and fullness becomes the purpose and the goal. And I’m working on it. I’m working on living IN THIS MOMENT and sharing it and being grateful and giving it back to the people I meet along the way.
What grand adventure are you on? Are you there? Have you made it? Did you set out breadcrumbs? Do you live in joy? Can you have joy and still feel pain and fear? Are they contradictory? How do you navigate all your human emotions? How do you find freedom in your life? What is freedom? Tell me! I must know!
I’ll see you next week same place same time! Kiss kiss!
Tags: chronic illness adventures, Chronic Snarkopolist Written by Melissa Travis, coping with ambiguity, coping with chronic illness, finding beauty and hope in chronic illness, managing chronic conditions, managing chronic illness, pondering joy when chronically ill
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20 Responses to “Chronic Snarkopolist: Grand Adventure”
Leave a Reply to Linny
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Oh this is so wonderfully written Melissa …..you have caught me in your spell. I do look at my life in a similar fashion. Trees speak to me too. The wind here is howling today and I even heard a morning owl, whoo who, indeed who! Who am I really? Do you feel this time of year that you don’t need a costume anymore. I catch a look at myself sometimes as I do my stuff. It startles me sometimes I think for a flash , who is that. An d before I even finish the thought I know of course it is indeed one of the many various versions of myself.
Sometimes I’m surprised at how much older I am. Then again I look and think well I’m still young enough. Sometimes my hair is white and I rather like it and another time I wish I had my red hair back.
I rather find myself agreeing with Alice on most subjects. I love the one that tells me I must move very fast if I am to stay in the same place. I drink this I eat this I am feeling different again. It is only the regular stuff too, not something like monkey brains, which I wouldn’t eat to save my life. I love animals and I insist that I only eat the meat that comes in the store must convince myself that there is no connection to anything I would make a pet, or a best friend. Certainly never a rabbit!
And so I painted this mural on my kitchen wall. I have finished the end of my table with Alice sitting at the Mad Hatters table. I will never eat alone and I will always undo birthdays.
The outside world is too big for me most days. I can go out I am not afraid. It is just my house is a nice place to be if you need a cup of tea.
I could go into all the reasons I need a cup of tea and sometimes something even stronger like coffee. Long time ago when I began to know that my life was very hectic, even a bit spicy. If I started to drink drink I might never stop and well I used to be in charge of some children, 2 I had delivered and 2 my husband brought with him when his wife said he could keep them. This all came about when totaling the assets and he asked her to give a value of her doll collection to which (witch) she said “you go after my dolls and I’ll go after our children!”
Can you even catch your breath after reading that?!
Well I didn’t think it would be a problem to add to my children. I rather adore children. Then thinking of myself as a fairy godmother I was corrected by my step daughter that I was probably more like a wicked step mother. Starting another chapter in things I cannot fix.
After a handful of years we are close now and I am Nana to her 3 boys. It was a fight I am proud to say I won even if it cost me an eye.
His son, well I had much work there too. He was stuck and usually looked at his shoes. But having our birth “dates” back to back in the same month of June I found a loyal friend. Also a true brother to my son 5 years younger. They had so much fun. They remained ageless for awhile , just kids and both found safety in each others friendship.
My own daughter, still a bit of a puzzle. I cannot tell you much because it is no over.
So as the song goes It’s going to take some time this time, til” I learn how to bend. Like a young tree in the winter time…..It’s going to take some time. I’m still here. TO WIN! love, Linny
Oh Linny!!!
I love the idea of sitting next to mural so you never eat alone. What a beautiful idea. You are such a marvel and I’m so glad we are in each others lives!!! THANK YOU FOR SHARING THIS!!! You are a dear.
What a story you tell. You are still here. And through you – I am learning from you. Thank you so much for sharing. THANK YOU.
xo
Love,
Melissa
Hi Melissa, I decided to answer each question that you asked because this is such a great post.
🙂
What grand adventure are you on? Living life to its fullest.
Are you there? Almost.
Have you made it? Trying my best.
Did you set out breadcrumbs? Full loaves.
Do you live in joy? Attempt to every day but never know how I’m feeling until I wake up.
Can you have joy and still feel pain and fear? Yes, it’s like yin and yang.
Are they contradictory? One could not exist without the other.
How do you navigate all your human emotions? Go with the flow.
How do you find freedom in your life? By being mindful, not dwelling in the past and worrying about the future.
What is freedom? Not to be stifled by the judgment of others and to appreciate each moment.
☮ ♥
Monica- as usual- this is beautiful. truly. I love the yin and yan. and not being stifled.
Thank you for sharing yourself with me.
xoxo
Melissa
Melissa- as always, you amaze me with your insightfulness. You make me look in the mirror and realize, even though I have a body that fails me at times, I may not be living my possibilities to the fullest. And that’s a good thing. Where others may nag me to try to get the same thing accomplished (which has the opposite effect on me), you tell me to look at myself for these answers, which is really the only place you can find them, within yourself.
And to Linny and Monica- you both seem to be where I need to jump. I would love to see the Alice mural!!
Hello gorgeous! Yes- inside you and inside each of us where we love and support each other. We heal each other and support each other as we look inside ourselves on our grand journey.
Thank you so much for writing in! I love hearing from you!
muah!
xo
Melissa
Melissa,
I love that you leave us with questions every time. I may not always answer them in comments, but they are great to help shake the cobwebs in my mind. I will answer a few.
Do you live in joy? I try to do this each and every day. There are so many stumbling blocks, but I use those to remind myself at how happy I am in my life.
Can you have joy and still feel pain and fear? Absolutely! We can’t have one without the other, but there needs to be balance. That is the key!
Are they contradictory? Life is contradictory! It would be an absolute bore otherwise!
Amanda
Hello Amanda, and I love that you comment! I love when you answer! I love hearing from you and growing from your insights!!!
You’re so fabulous! I have been amazed at your journey here and am SO grateful you are here at DT!
Thank you so much!
xoxo
Melissa
Melly Mel, My Superhero..
Do I live for Joy well if my name hadn’t been Lolly I think it would be jolly because I strive to make each day different so nothing is the same and sometimes I have no choice I have to go with the flow but I always end up laughing at something because I love to laugh even when i feel at my worst.
At the moment I donlt know my arse from my fucking face Have a baby threatening to come early had to travel tro a hosptial miles away because no neo natal beds where we live available. had to try sleeping in an upright chair for tow nights solid wasn;t working and nearly eneded up thorwing the chair out the windoew or beter still getting ontop of Steve kelly’s partner who had the mattress on the floor and looked so cosy I didn’t I suffered because I knew i had too.
At the moment I am on a grand adventure and donlt have time to touch down or really think about myself or even how I am feeling I guess that helps me forget until reality hits back otr I burn out.
Love
Lollyxoxox
Lolly-Lol- My superhero!
You always make me laugh and hold you in my heart. You are such an amazing mad woman full of so much love and wonder!! I never know how you do it all- yet you do. I always want to scoop you up and love you more because of who you are. YOU DESERVE ALL MY LOVE – ALL OF IT.
Thank you so much – for being in the world. We’d implode without the contents of your heart and hands pouring out.
We would.
xoxo
Love,
Melissa
sometimes i wish i had the friends you have. ones who care, share, love, and comfort i know your journey all to well. I have felt so alone through my own battle with thyroid cancer. I’m a nine year survivor. But happy i have not been I have felt numb. i have no support to help me through anything and the after effects i have been through have been hard. this never ends it seems like. I’m so glad i have found this site. I was beginning to just give up and except the fact no one cares. I hope i get to know you all better. and i hope that someday i can feel the joy that you speak of.
Dear lonely_survivor –
your name says it all. I feel you – in my heart. I do. I hope someday you are able to change your name to, “supported survivor” because that is why we are here at DT. THAT IS WHAT WE DO. Most of my friends are people I have met who are emotionally healthy and healing from sharing our stories and healing. We are here LIKE THIS. Doing this thing. Sharing. Growing. Healing.
I AM SO SORRY YOU HAVE DONE THIS ALONE. You deserved better. You still do. I am here for you. We all are. After 9 long years you have built up strength you do not know about- now you can tell people how NOT to go it alone– and — when you are ready– reach out– and we are all here -reaching back.
We all know what it means to be alone. Being sick means losing friends and being alone. We know this story too well. And we are here for you.
love,
Melissa
Dear Melissa,
I love the way your mind works. You have insight into the little nooks and crannies that life offers, and most people would never even consider what questions you bring to the table.
Thank you for being so amazing, and if you ever FEEL like you want to gamble just for the hell of it – I’ll go with you. Vegas is my weakness, and I always win.
xoxo,
Nicole
Dear Nicole,
Child – something about the way you handle life makes me READY TO GAMBLE FOR THE FIRST TIME with something besides health. I love it.
you make me want to do Vegas!
Really!
xo
Melissa
Oh Melissa, what a fantastic post. I’m so happy to have found this site and everyone here. I was getting a little despondent today, fed up that I don’t have the energy to do what I WANT to do, aware that I am lucky to have the luxury of being able to stay at home with my feet up leisurely browsing the internet and that I had a beautiful weekend with lovely friends and food and little outings, yet still getting a little bit down because of the tiredness and sore feet and puffy ankles and so on….I thank you from the bottom of my heart for such a beautiful piece of writing that has lifted my spirits again.
And thanks also with much respect to everyone else who has commented, it’s so good to know you are all out there and we are all sailing in a similar shaped ship, having our different adventures and able to share with each other.
Especially thanks to Linny – what a life you are living so bravely and so beautifully shared.
I am off to now to buy a light box hoping it might give me some ENERGY!!! Thinking positively 😉
Dear Yallolorry,
Your post made me smile. More than you know!! I was just talking on the phone to a beautiful friend and we were sharing stories about “building up energy for a shower.” In the past I might have felt shy or terrible about admitting that I have to find energy for a shower… but it is simply part of my life now. Instead of leaping out of bed to a shower and waltzing into my day- I have to build a shower into my day so I don’t waste energy.
Everything takes energy and effort and thought. Everything I do – preparing food and outings and shopping – takes time to think about. Even having fun with friends takes energy and effort, as much as I like to laugh. There is no judging – only an accepting now- of who and where we are. Celebrating our good days and accepting where we are during our bad ones.
So glad you wrote in. Am so glad to have met you! Keep writing in!
love,
Melissa
Yallolori,
Welcome, how nice of you to join us. I am rather new here myself and I found this spot just about the nicest place to spend some time fueling up.
The people here are very caring. Like you, I am not that very close to many in the flesh. Sometimes it is my fault that this has happened and often it is to protect my dignity and sanity.
Is it the illness that caused this reality, or the other way round, I am not sure.
Nevertheless, I am fighting to find the joy in my life, if only a piece of unravening thread. One must hang on to happiness or the illness has won.
My Rule: never let a villian win.
Afterall there is much beauty in the world and worth fighting for. Maybe some days it is a tiny window but its there and in our sorrows we alone can appreciate the tiniest bit. We are the REAL people, humans being. We can feel it all and do not need to pinch ourselves to know we are awake. We indeed live each moment. Perhaps too intensely but with the gamut of all emotions we are more alive than most.
We hurt, we love, we live with all possible cells. We represent life in every faset. love, Linny
Melissa, what a wonderfully insightful article! I am working on living my best life: relishing the now, finding the strength to love and care for myself and those around me, moving forward fearlessly into my fourth decade, perfectionism be damned. I’m old enough to wish I could have done some things differently, but I realize how fortunate I am, despite living with my faulty gland. Pain and fear are fleeting, but joy is a state of mind I cultivate by focusing on what I love. Dealing with other emotions as they surface without being overwhelmed by them is a work in progress for me. I am working toward what I consider freedom: eliminating useless fear from my decision-making process. I’m not there yet, but I think I’m making progress.
This is a beautiful comment Janel! Thank you so much for writing in!
Every week or so I still get a new fear to process or emotion I need to examine. I am not perfect!! But I love how you point out that you get to eliminate useless fear! It is so true. It is a process and we are always making progress!!
Thank you so much for your comment!
much love!
Melissa
Melissa~ you give back so much. Thanks for being you. I am so touched by the endearments you share with each of us. I see that this illness brings very special people together. I can’t seem to sleep tonight….as you all know. My son drove to Santa Fe from near Chicago were I live. He has moved there. I am so happy for him he is a wonderful son/person. I will miss him so much. It’s right for him to have his own life. But with an illness like ours it makes it hard to have love ones leave. His Art and Music will be so inspired there.xxxxLinny