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Chronic Snarkopolist: Illness – The Monkey Wrench In My Plans
Hello my sweetest things!
Thank you so much for taking the time to comment and e-mail me. You truly sustain and support me! I’m overjoyed with your beautiful minds. Some of you are going through some difficult medical times others are embarking on the newness of being freshly diagnosed. Whatever the place you are in – we are all here for each other and I want us to stay that way. It is important to all of us to share our stories and heal each other through understanding.
One thing that has come up in repeated conversations in the inability to PLAN. To make real long term plans for our lives.
Plans. Remember those? I do. I remember making tons of plans. List after list in my head and in my to do list that I smugly stuck to my monitor each morning. I had lists in my PDA and other lists for GTD (getting things done). My jaunty plans trumpeted my cocksure intentions all over the place –signifying Plan A, B, and C . Sometimes I made a backup plan D just in case everyone fucked up and I needed to get back on track. In essence my life was guided by fear that I would be not be OK and that there was no real way to be calm or on track without pre-thinking EVERY SINGLE way to the goal I wanted to meet.
Life has a funny way of curing us of our disease. I guess my diseases were perfectionism, a feeling of NEVER being enough no matter how much I accomplished, and a dollop of ego. (just a smidge for that smooth smoky taste). I NEVER liked to be told no. In fact – it was the ONE WAY to make me TICK.
In fact, once when my director told me no, I asked why. And received response that it was “always done that way.” I asked if they minded if I got that changed. When I was positive that it would not hurt my relationship with my director I went to visit the department chair. I asked again for what I wanted. I was moved to the Dean of the entire Arts and Sciences. Again, I proposed a very good argument – succinctly and in only 15 minutes, I made my case for me and for EVERYONE. Not only did I get what I wanted and “rule” for the entire life of the university was dropped. I was successful in being able to pursue what I wanted and some roadblocks for other colleagues were also lifted (as long as it did not interfere with our professional duties).
When my director later asked me why I so vehemently pursued this publically, as I could have easily done it on the sly, I told her, “I don’t like to be told no.” She smiled but I wonder if my dogmatic attitude said something less than positive about me? Was this pure hubris and ego?
Not only did I DEMAND that LIFE conform to my DEMANDS but also that PEOPLE met them too. DO NOT TELL ME NO. Do not tell me anything I don’t want to hear. I worked dogmatically to please people, to do my best, long hours true – but I still EXPECTED THE BEST from myself and from others. I EXPECTED the fabric of life to unfurl and wrap me up in SUCCESS AND TRIUMPH.
Overtime I realize that some gifts are in the hit, not the talent or even the tenacity. I no longer make exotic plans because my health makes them for me. And something new has happened. I have a new grace – a genuine talent for making people feel OK with the crumbling of plans. WE ALL LIKE OUR PLANS. We build them with solid foundations of dreams and hopes.
Even small things like our car registrations and our pharmacy refills are considered HAIR ON FIRE EMERGENCIES. And I have learned though no small effort, that the greatest plans in the world, are no longer my own, they are merely ideas, theories, possibly hopes.
But to a snarkopolist like myself, I no longer get to concretely outline my plan and MAKE IT HAPPEN the way I hammered out my LIFE for the first 25 years – FORCING my IRON WILL upon the gentle tapestries and the rocks alike. THIS IS HOW IT WILL BE I proclaimed. THIS IS HOW I WANT IT.
I railed for a few years against illness. Yes –I did. I was not always zen about being sick. And sometimes, in a snit, I get snarky about how I feel or my losses. But usually now, I sit back and roll with life. It is just easier that way. It is easier to watch life and see it and EXPERIENCE IT FULLY than to PLAN AND FAIL and become FRUSTRATED.
I wonder now if the toll I made on my body has been the price I have paid over the last 11 years of my evolving medical needs. Or – more likely – I am more capable now of learning more and more patience, more and more grace. I am learning to make MEANING instead of whining.
You do not hurry IV or pulse treatments. They happen over the course of certain amount per hour. You no longer calculate time the same way when you’re watching an IV – in fact – you don’t bother watching it anymore. You just setting in and let it happen. Read, play on your laptop, twitter. You just don’t get impatient. Not with nurses or tech.
You learn to laugh at anything funny and make humor if you can. I learned to pick things up with my toes because both arms were so frequently indisposed. I now have incredibly dexterous toes and call them my “monkey toes.” They have come in quite useful to me many a time. Especially when something falls on the MRSA strewn floor and I need to retrieve it but don’t REALLY want to TOUCH it. Toes do that! Because toes are far away- and if you don’t SEE THEM they won’t let the bogyman get you all germy. And then you can wipe your feet off with bleach disinfectant towels and make yourself feel better about the whole nastiness before you continue.
Even in hidden places there ways to have genuine CONNECTION and life altering experiences. How I live for these moments! I actually have time to NOTICE them now. For instance – the new pharmacy student does not know how to pronounce the medications I am on. I was gentle with him on the phone today. I miss my old pharmacy guy- but he is graduating. I’m happy for him. Yet – it was time to break in a new one.
I guided the new student through the process of dealing with my insurance plan. I said, “This is new to you – but I will be your teammate and we will be friends ok.” He sounded grateful and hesitant. He is not used to being spoken to this way. He is used to people simply giving them their refill information and expecting magic – quickly.
My pharmacist knows and trusts me – which is WHY she lets the new students talk to someone as complicated as me. She knows I have patience with them. She used to only talk to me herself and not allow anyone else to handle me. But then she slowly realized that I was a good teacher. In the end I made the new student work hard because I have over 30 medications to refill each month and inevitably the insurance does not wish to refill at least two and at least one or two must be refilled from a doctor.
But he laughed and had fun today too – because I discussed which doctor’s offices check their faxes and which must be called. I gave him sneaky tips. I helped him. And I said to him, “See – we are teammates – all hard to refill people will not be this helpful – you owe me one.” When he mispronounced my medications I repeated the names correctly for him – because when he becomes a pharmacist MANY people every day will mispronounce their meds and he will be in a far different place. I hope he remembers there can be knowledge without pride and still have patience too. It is a skill. I have learned this skill. I said to him, “See – I have learned how this works – it is why I am calling early – and if you cannot get my drugs to me because the insurance is being a whore – then you will keep me alive anyway, right?” And he laughed and agreed.
A decade ago even ONE prescription that was out of place would have made my blood pressure rise. I would have railed about the control of the insurance companies and the medical industrial complex. I would have shaken my fist skyward and stormed about how unfair it is to have to WAIT EVERY MONTH. “How dare they?” I would have vented, – “HOW DARE THEY – THIS DOES NOT FIT MY PLANS?”
I would have NEVER considered using my pharmacist as a TEAMMATE. I would have never considered asking them to be on my side. Now – I have patience with the process. Getting angry does not help. This way- it all works out. Each month SOMETHING ANNOYING HAPPENS – that is my ONLY guarantee. If I get worked up about it I will never be happy at the pharmacy. If I laugh about it – then I have many friends there who enjoy their jobs and my company more.
The pharmacist is a wonderful woman who made a lovely map for me of when and how to take my complex daily drugs. When I go in she stops what she is doing and we have delightful conversations about her life and my life. Sometimes I show her new operation scars. Sometimes she’ll tell me about her own hospital experiences. She is a wonderful person and I would have never gotten to know her if I had been busy making PLANS about how quickly I wanted all my drugs without getting to know the white coats behind the counter.
Indeed – the last pharmacy student said, “I cannot imagine how you have so much fun. I know the drugs you are on and no one on these drugs is ever laughing when they come in here.” And THAT made me smile. THAT made me truly happy. NO ONE PLANS on learning to have joy in life – we just find it. We find joy every day. And on the days when joy eludes us – we accept the love and comfort of the support around us. We are all human and being human means we suffer, we laugh, we cry, we feel pain. And if we run from that – we run from REAL LIVING EXPERIENCES and REAL CONNECTING.
“Never underestimate your customers and their desire to find joy and meaning in life.” And that said, he saw me in pain a few times too – and when he did – he still smiled at me – and realized that I never wanted him to feel sorry for me. I just wanted connection, relationship, wholeness. He gave me that. I hope I gave him that in return.
That is why I always meet my doctors sitting up, never lying down – (not unless I am unconscious – and I know – I still need to get trimming my unruly snatch hair- it’s a mess again… I’ve been busy and haven’t PLANNED IT in my day). I try to always meet my doctors and nurses with a smile no matter how severely I hurt or feel bad. I want to meet them as a human with a connection. I want them to meet ME – deep inside.
My LIFE PLANS are gone now – and so all I have left is ME. And I assess this notion and realize I am everyone I have ever met, everyone I have loved and hated, so too – everyone who has loved me and hated me. We have touched each other’s lives deeply and permanently.
And NOW I am building my life with new ideas – of ALLOWING each shared story to CONNECT me and be REAL. If you suffer- you do not suffer alone anymore. I am not afraid of your suffering – I will stand there and experience it with you – knowing it in my own life – seeing you reflected in me. I know we are all capable of HEALING and getting better.
And more importantly – we are all capable of growing – inside and out. Our life is a process NOT a plan.
What is your process? What are you going through? How are you handling your shit? Do you still make plans? Have you given them up? Tell me your stories. Tell me your fears. I have plenty but I often do it anyway – we get forced to life inspire of our biggest fears don’t we? Dish it to me!
I’ll be seeing you next week! Same time same place! Kisses!
Tags: Chronic Snarkopolist: Illness - The Monkey Wrench In My Plans Written by Melissa Eckert, finding hope in the future despite illness, learning how to assert ourselves, life interrupted, life plans interrupted by illness, managing chronic illness, overcoming the pitfalls and expenses of chronic illness, stories of hopes and dreams fractured by chronic conditions
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19 Responses to “Chronic Snarkopolist: Illness – The Monkey Wrench In My Plans”
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Melissa,
I defined myself through my work for over 20 years so I can relate. I still had a full life outside of it but it was important to me. I was on a mission, there was always more I could do, more I could accomplish, more ways I could make a difference.
Then I had a child and I stopped, I wanted to focus on him instead and my husband supported me with that decision. It worked for me and then came cancer and thyroid disease. That was not my decision.
I don’t make plans like I used to. The reason is because I’m not certain I can show up, like for real show up. We always have a beach vacation in Rhode Island (which is where I grew up) and this year I can’t commit. Maybe next year I can. I might be able to get there but I don’t know if I can deal with long days and the pressure of trying to please everyone. I’m just not sure so I would rather pass.
I do what I can when I can. Important events I rest up for so I know I can make it. I don’t beat myself up about it because I understand that even though I did not choose to get ill, I can choose to get better. I need my rest and my quiet time.
Your words give me permission to be okay with this even more than I was. Those that just want the old Donna to show up don’t understand but I can’t do much about that. I don’t have to justify my illness to them and I won’t. I like to talk about it but mostly because I want them to take care of themselves, not for me.
My son taught me patience but cancer taught me about the process. I’m okay with that, not that I have a choice, lol!
I love your attitude. I love that you make people smile. I love that you represent what DT is all about. Thank you!
Donna xo
Hello Donna!
Thank you so much for writing in! And I LOVE your words! “I didn’t choose to get ill but I can choose to get better!” Yes! I’m feeling this all the way!
Yep- totally get it- being defined by work and thinking that who we are is our job… there are great mysteries in life and more and more WE are becoming the clues… paying attention to each other – healing each other with our time, our love, our words, our attention! YES!
This IS a process. And I’m glad we are part of it together. Thank you so much for writing in and sharing part of it with us! This is a big deal. A big big deal! We are healing each other along the way!!
So much big loving!
x
Melissa
Melissa,
One thing I have come to appreciate about DT is the commonality we share in this community, from the various diseases we possess to how we deal with the daily ups and downs of life.
Kudos to you for articulating so succinctly what I have been feeling and going through since last August. I have a triple type A personality that I have been trying to tame since I retired from my career a decade ago. In my career I was swimming with the sharks but realized I wanted to hang with the clown fish. I often wonder if my zealous perfectionism contributed to the body breaking down.
This past year I took a break from my “life” to figure out who am I. But any joy I had disappeared for a while, what I now know was a necessary process to discover the real me. Now that the dark looming clouds have begun to dissipate, things are looking clearer and brighter. There is no doubt feeling connected to others is very important in my relationships, whether personal or professional.
I look forward to your weekly column. Your words resonate deeply with me and I love that you share your wonderful writing with us.
☮ ♥
Hello Monica!
Thank you so much for writing in!! Yes – I too love the sharing part of this community and how we all take time to heal each other and ourselves through our words and our stories and our experiences! This IS a process – YES. Life is a process! A frustrating, beautiful, annoying, giant wisdom ball of a process!!!
Ha!! I love that you tried to tame a personality that might be THE ABSOLUTE PERFECT BEING INSIDE YOU!! What if your personality has tamed you and created the exact perfect balance right now?! I love it! I’m envisioning the double theatre mask where you are equally understanding (and non-judging of all the different ways of being)… you FLOAT along like a clown fish- yes- but you GET the racy sharks- you get it.
I just today had a giant reaction to a friend who is in med school who was judging what was in someone’s grocery basket… He said to another friend, “I love to predict what their illnesses will be in five years. And I had to STOP myself from becoming angry. I thought, “I used to BE YOU… I USED TO BE YOU you young pup!”
I’m not “there yet”… none of us are! But I think I can SEE his sharkyness better now. He didn’t MEAN to be a judgy jerkwad… it just came off that way. In his zealousness to HEAL and make the world HEALTHIER he just SOUNDS like an arrogant prick. He WANTS people to eat healthy. I have to see through the sharky waters… And this is what swimming with the sharks has given you too!!! EXTRA VISION! A wonderful balance!! Yes?!!! Yay!! *confetti*
I am excited about the real you. I’m sorry that all of us have to go through the gloom (again and again) – but I’m excited that as our vision gets clearer – we get more focused on WHAT IS TRULY IMPORTANT.
Who know that illness could be a REAL GIFT? I never knew – ever- years ago that instead of wallowing I could become a light – a gift – healing people around me that didn’t even know they were disconnected and sick- INCLUDING MY OWN DOCTORS!
Thank you again – for being so wonderful – for your compliments – and for writing in! You rock it!
☮ ♥ back atcha!
x
Melissa
Reply
this disease has taught me patience and even tho there were times I didn’t feel joyful, i never lost my joy for life-i just wasn’t sure if this life would be as long as i’d intended. That thought has probably been the one that has caused me the most soul-searching. And, i have monkey toes too
Hello Bee-biddly-boo-bop!
Thank you for writing in! I ALWAYS need more friends with monkey toes!! Always! Yes – patience! I’ve been ground down so many times I wonder if I’m not as iridescent as some tween vampires!
A friend asked me if I lose my shit sometimes and I said, “Of course, it is my process to get upset and cry and be tearful and moan- but the point is IT IS PART OF MY PROCESS – AND I SHARE IT.” And that is what we are doing here.
I like what you say about keeping your joy. I like to think of it as burning bright- bright with shining clear stuff that keeps on burning long after we’ve burnt ourselves out for a night or even a season. We can stand strong for each other and keep the fires burning… we’ll all be back!
Yah – I’m feeling you on the intended life stuff. You hit me right in the guts. Feel ya. Intended stuff doesn’t always work the way YOU PLANNED. I’m here with you while we make it count ok. Right here with you. I’ll be your audience as you sing your most beautiful arias and MAKE IT COUNT!
xx
Melissa
Melissa,
Great to read how you are finding your way through life. I very much agree that getting rid of the “plan” helps in so many ways. When my son entered school and everyone needed to “label” him as ADD or ADHD or ODD or the label of the day… All my plans went right out the window, I didn’t even hesitate. Hopes and dreams are still there, I just let life lead me. Adjusting as new things crop up… like Graves Disease. We just have to work new things into our world and know what to let go. I hear you.
Amanda ʚϊɞ
Hello Dearest Amanda!
I always feel like scooping you up when you write in because you’re the newest of the gang to get “your diagnosis.” For me that was some of the roughest part of all of it. The rest just comes. And you’re handling it!
You’ve got a full plate – heaping up- mother – son with a toppling plate that you have to help steady – and now your own thyroid stuff that you get to handle… and you’re doing it beautifully!
Life will manage your plans and then some… the rest of it is sharing and healing. I’m so proud of you and excited for you and here for you- ROCK STEADY- the way you are for us. Thank you – thank you so much for coming here and being part of the process. This is big big stuff you’re doing – we’re doing here!!
And yes- we are “working new things into our world”… yes indeed.
So glad we’re on the same team – you are a wonder woman!
xx
Melissa
I love this post so much, Melissa. You tasked me with re-examining the way I live my life today with disease. And raised a never ending question “What do I want my life to be”. I AM VERY GLAD YOU DID.
Disease interrupts every area of our life. The question is, at least speaking for myself, is reinventing ourselves. How do we do this? I realize that we all have a unique answer.
I love when I see old parts of myself resurface, parts that had been so decayed and fractured, I thought they’d never return. Interestingly enough, I believe that the foundation of who we are doesn’t change because of disease, THAT IS JUST MY OPINION. That being said, post diagnosis and learning to live with our respective diseases, finding balance, finding our way, that is an endeavor that is so overwhelming. There are good days and bad days.
I love this article. I’m all up inside my head now.
I adore you for writing it and being so brave.
xo
K
Hello my beautiful warrior of the written word!
Thank you for your kind compliments! – And yes – re-examining our lives with TODAY’S disease is different isn’t it – than what we THOUGHT we had last week or last year… And what we thought we wanted last week or last year changes. IT CHANGES! Just as we change… deep in the cockles of our warming little hearts!!! Holy schnieky! We’re changing! And growing! *confetti*
I’m so excited to see what your life blooms into because as you know – we are all touching each other. Each of us constantly blooming over and pollinating each other… it is impossible now not to change and heal each other as we do this thing we do… this healing thing.
I’m intrigued by what you call, “re-inventing ourselves.” I’ve heard that term a thousand times before- but I’ve never stopped to think about the process of doing it. And yet- look – LOOK!
We are all whole – and the trappings of our life is just melting off as we go along… I guess disease just finds it faster and maybe that’s why it hurts more. Just my best guess -I’m no guru. Just a monkey toed snarkopolist who is in LOVE with what you’ve done here!!
I LOVE WHEN YOU LET ME GET UP INSIDE YOUR HEAD WOMAN!!! Love it!!!
Thank you again – for making this possible for all of us! You are a hero among gems and bright shooting star! Thanks for letting us watch the razzle and the dazzle of you and join in to celebrate!
xo
Melissa
I myself got hit by a bunch of flying wrenches this week and turned into a grumpy grouchy mess. But managed to grump in a pleasant enough way to make the phlebotomist giggle. So by not taking myself so seriously I lightened the day a little bit without negating the fact that I *needed to express* my grumpy!!! Balance is a good thing.
Hello Lynn!
So wait Lynn lemme get this straight – what you’re saying is – you were a grumpoloist in the way that I’m a snarkopolist! I’m so proud!! All the birds are all grown and leaving the nest!! ha!
I’m sorry you got hit with flying wrenches. And yes – balance is a good thing when we can keep it!! I’ve lost my balance PLENTY OF TIME… PLENTY OF TIMES.
The boat tends to right itself anyway…
Thank you so much for writing in. Love that you are able to grumble in a humorish way!!! You rock. Keep me apprised of how you’re doing!
xx
Melissa
oh Snitty! I am SO proud of the road you’ve travelled and where you’ve ended up! I just want to wrap you in velvet so you never have to hurt again.
The lesson learned is a vital one for those of us with chronic illness. We must always see the silver lining in every cloud. & count our blessings rather than whine about our mishaps. After all we are alive, and is that not a blessing in itself!
Loving you so much more, if thats even possible! Muahz!
Dearest @TiffanyandLupus,
Only you! Thank you so much for writing in with your beautiful sentiments and so much love! You bring so much power and light to the world through your own blogging and hard work for chronic illness.
It is a truth that there are lessons in chronic illness. I’m not someone who looks hard for the silver lining very often. Usually I see it well after the rainstorm – WELL AFTER. Sometimes YEARS AFTER. But I suppose that is the point, isn’t it. Wisdom follows the loss – but first the losses MUST BE GRIEVED AND ACCEPTED.
You’re a fabulous friend and writer. Thank you for writing in.
Cheers!
xx
Melissa
Melissa, are you telling me to stop and smell the roses? It’s a good reminder for all of us that our life is a journey, not a destination. So many of us that are goal oriented forget that all too often!
Hello Robyn!
Ha! You my dear, do NOT have to stop and smell the roses – but you certainly are one of the ones that BLOOMS AND BLOOMS!! I’m going to WATCH YOU!!!
I have goals and hopes and dreams! I just guess I’ve learned not to make too much of them anymore… or perhaps I’ve built up a greater tolerance for HOPE and for letting go.
You are wonderful and beautiful. Just like you work part time so you can enjoy your life and your profession… It is all about perspective and finding your way. Thank you for sharing your life with us. So happy you have!! Love watching you bloom and sharing mine with you!!
xx
Melissa
This is such a beautiful post, Melissa. From living with cancer I’ve learned that life is more about who I want to be than what I want to be. I no longer focus so much on my goals of what I want to do with my life and instead focus on who I am and who I want to become so I can actually make an attempt at living my life.
Thank you for writing this and sharing more of you.
xoxo,
Joanna
Hello Joanna!
Thank you so much for your kind compliments!! Ahhh – I love your new found presence of mind… the notion of WHO you are being profoundly more powerful than WHAT you become… that’s pretty intense. It gave me a surge to think of it!!
I was always someone who CARED about pedigree and degrees and education…and now I’m learning SO MUCH – so. much… from the people around me.. finding wisdom and courage and kindness all around me – from the very young to the very old -and lo and behold- you cannot put a degree or a certification on it… You can only witness it – hold it in your heart – EXPERIENCE IT. I’m so glad you’re sharing it because YES — it is rising up for me always– to relearn and feel it more.
Love that you share you too!! You’re a woman of strong stuff – beautiful and strong and wonderful!!
xo
Melissa
That’s the best way to be Melissa.
I don’t make plans and never make promises I cant keep.
I love your strength and l your wisdom and most of all your oulook on life no matter how bad it gets
Much Love
Lollyxo