A Year Ago, Today. Or “How to Tend to a Sick Artist”

Posted by on Mar 3, 2016 in Giveaway!, Gratitude, Sweet 16 | 76 comments

My-Heart-Map.jpg

Last March 3 I endured a nine hour open heart surgery that was a big whopper of a surprise to everyone in my life. I had a 9cm aneurysm in the ascending aorta of my heart, and there was no other way to keep me alive. Two funny people we know died of this exact same situation: Lucille Ball and John Ritter. I like to think its somehow a comic’s condition.

I love Mark Twain and remember reading “The Innocents Abroad” the year I lived in Florence, Italy. He made lists in that book, measurements and tallies that illustrated his points. Here is my Mark Twain list for My Event of 2015.

  • 89 Medical Claims
  • 9 hours of surgery
  • 5 hours of intubation torture, wide awake
  • 36 sessions of rehab: 4 months, 3x per week
  • 0 Caffeine
  • 272 Amazingly lovely friends (I counted the cards and gifts…)
  • 3 painfully absent “friends”
  • 42,392 pills including morphine and heroin  (that might be a slight exaggeration)
  • 27 Books read
  • 1 Fabulous Surgeon
  • 4 Hideous Medical “Professionals”
  • 2 Damaged Business Relationships
  • 8 weeks of being chauffeured
  • 500+ photographs taken
  • 1 Book finished and delivered to publisher
  • 4 different states visited for teaching

There is more, this is just off the top of my head.

The last year has changed the trajectory of my life. Aside from the scar, which is obvious, there were many upheavals that came with this kind of event and all of you out there with a major illness know what I am talking about. There is no way I would have known how to treat someone like me, and I learned a lot that I would like to share with you.

I have a new set of rules for those of you who have not had a medical trauma to help out when one of your friends does.

1. Never assume you know how they feel. You don’t.
2. Your friendship, at small moments, could be far more impactful than it ever has been. No act of friendship is too small.
3. Acts of charity are magnified. Charity is actually a gift to the giver, you already know that. Being able to really help is a warm fuzzy rush that we are grateful for. Take them a meal, knit them a scarf, send them a card or drive them to an appointment. It matters and you will always be glad you did this.
4. Do not Google the situation to see where your friend should be in their recovery. Ask them. They are the experts in their own situations, believe you me. Avoid judging them based on what you heard at a cocktail party last week from a guy whose cousin is thinking about becoming an EMT.
5. Give no advice at all unless asked for it. This person is getting advice until the cows come home, by people who have actually been trained in the medical field. They are in a dog pile of advice.
6. Do not make changes in their world without asking first. Do not move the furniture, cancel the articles or classes, take them off the lists for upcoming events. This is dismissive and they already feel vulnerable and dismissed. I will say it again. ASK first.
7. Make time to sit with them. Just sit and knit or draw or chat. Quiet time where there are no expectations at all, just grace.
8. Never use platitudes. “Everything happens for a reason, we will see the silver lining soon, God has a plan. You are so lucky you did not die.” NEVER DO THIS. It is their journey, not yours, and these things are again dismissive and judgmental. If they feel lucky and blessed, they will let you know.
9. Try to realize that their world has just permanently changed and they are likely very frightened and as vulnerable as they will ever be. Be the friend you would want at a time like that.

Okay, climbing of my soapbox now and let’s get to the goodies.

To celebrate my continuing journey on this planet, I am giving away a set of my stencils, a copy of my first book “Personal Geographies: Explorations in Mixed Media Mapmaking” and a small Miró inspired journal filled with my favorite paper. Miró was an artist who expressed himself in many mediums and styles, just like so many other artists that I admire and how I ultimately decided that having a studio full of multitudes of mediums was okay. Miró gives me permission to experiment, as I hope you do in this journal.

Yearbounty

Leave me a comment here on this post and tell me what I might have left out of the list of how to Tend to a Sick Artist, or anyone else for that matter. Would love to chat about it.

LOVE! to all of you.

Jill

76 Comments

  1. I’m wishing that this year is filled with calm seas, roads without bumps, and a map filled with directions that you want to travel.
    Love,
    Kim

  2. You are an inspiration!

  3. Great list, Jill! I’m so glad you came through the chaos, even though I’m sure you still deal with many struggles along the way.

    I would like to add to your list: Don’t assume that just because someone looks good, they feel good. (kind of goes with point #1)

    My stepdaughter, who had Cystic Fibrosis, never really looked sick. Most people, even her close friends, assumed she was ready to party and have fun. Some days she could barely take a deep breath, walk up a flight of stairs or take a shower. She didn’t want to advertise how badly she was feeling and it came back to bite her many times. It was a delicate balance between someone feeling sorry for her and truly understanding.

    Here’s to your continued healing and good health!

    • Traci, I will add that one and what a good point. Our outsides so often do not represent our insides. Thank you for your input!

      • You’re very welcome!

  4. It doesn’t seem like it has been a year! So glad that you are doing well and continue to give us inspiration! Here’s to the next year being wonderful for you and yours! Hugs, Carol

  5. I would add two things:
    1. Allow yourself, if you’re close enough to the person, to just witness. Just be there. No words from you are necessary. Let them vent, or as my Honey says “word vomit”. This lets them get it out of their system in a safe way because they know you can just let the words roll off you without harm or absorption.
    2. Remember their immediate families need support too. Giving care in situations like this is difficult as it asks people to give when they are having their own crisis as well. Supporting caregivers lets them support the recovering person better. It also keeps the caregivers nourished and loved during a time that can be excruciating for them as well.

    • Heidi – That’s a great point about the caregivers. When I was caring for my soul mate who was dying from lung cancer, a good friend asked me very sincerely, “How are YOU doing?” I have remembered that moment for 21 years now and I make sure to show the same care and compassion to other caregivers. It’s so very important!

      And another good point about “word vomit.” (LOL @ that phrase) As a friend, we have to allow our friends to talk/vent incessantly, if they need to.

  6. Sometimes words aren’t needed. Just be there.

  7. The fact that you were at FOBA 3 months after this event was a stunning accomplishment and example of your vitality and spirit for life. I didn’t know you until FOBS, and you entered into my life with such a whirlwind of joy, that the only reason your story was remotely believable to me, was that you wore your scar with pride and humility. You’re a living champion to me. That’s all I can say.

    • Karen, this is so deep for me. We had a connection for sure. Thank you for your lovely words.

  8. I’m amazed at your wonderful attitude. I don’t read many blogs but your’s is a true inspiration. And, just let me say again that I can’t wait for your new book. I love maps!

  9. Here’s to a wonderful 2016. Enjoy!

  10. I totally agree with your points above and will carry them with me. Too often we struggle with the right words or actions in these times so it helps to have a guideline. I wish you the support you need when you need it, and want you to know you are thought of💋

  11. great advice-It is so hard to know how to “be” around someone when there is a major health issue. Here’s to an even better year!

  12. I would say this and have said this to my best friend, “Just be there. Sometimes there is nothing you can do to make it better. But your presence just makes it seem better.”

  13. I’m so glad you are still here! I hope our paths cross again sometime soon.

  14. Dear Jill, your courage and experience are astounding. I remember when this happened to you and was heartbroken – but look what you have accomplished!

    I am, at the moment, in the midst of an MS relapse and after 16 years this has got to be the worst one yet. But I believe this too will pass and I will be creating once again very soon. It is hard, having just gone through a divorce, but now living near my family has been such a blessing. They are experiencing this for the first time – as I learn to step again, walk again and eventually hold a paintbrush or hammer again- and my heart is sad for them. I don’t want to ever show them weakness. LEarning to ask for help is really diffficult, at least for me! Thank you for your blog, your strength, and your beauty.

  15. Show up.

  16. Never tell an ill or recovering person when or how long to sleep. They may be up and down throughout the night, or having trouble getting quality rest when asleep.

  17. remember that you are NOT invisible., even when you think you are.

    • this is a big one. Thank you Claudia.

  18. I think the most important advice is to always ask, never assume or guess. I’m glad you are back…

  19. Thanks for the advice from your perspective. Very valuable. Now to remember it when I need to…

  20. My husband has a degenerative auto immune disease, and I echo the words ‘Don’t Assume that just because they make an effort to look normal, that everything is ok”—-seeing them at the grocery store will cost them many hours of pain and going back to bed to recoup. It’s also hard when people ask ‘how are you’ to a person who struggles everyday just to get out of bed and get dressed. These are Big accomplishments to them, that voicing them to you would probably seem trivial . And yes, the caregivers. Sometimes it’s harder watching a loved one change almost beyond belief, while your own life takes on a whole new dimension. Life will never be the same, but there is beauty in small victories and peace in taking Nothing for granted. Best wishes to you, Jill, I am so happy that you are still here with us, creating and blooming and making the world a better place to be. xo

  21. Your health journey started shortly after my own, except mine was a completely dead gall bladder, sepsis and complications. Even though your situation was different than mine, I found a lot of comfort and inspiration by keeping up with your journey. I have never commented before, so thanks!

    Your list is fabulous, and the only thing I would add is “Don’t say ‘take it easy’ or ‘don’t overdo it’ when someone takes a step forward in their physical recovery. CONGRATULATE THEM on a step forward. They know where the line between rehab and overdoing it is, and don’t want to be dismissed or perceived as weaker than we already feel.

  22. Never offer reasons for why their issues occurred, such as “You need to lose weight and eat better.” This is not only insulting to the patient, but it’s hurtful and if it’s true, then they probably already know that.

  23. I would say find out what meals the family likes and bring some of their favourites.
    Do the same with your buddy with art snacks. Bring some fun art supplies to play with.

    • I love that idea. Thanks Marcie

  24. Sending you good Karma

    • I like good Karma. thank you Beth.

  25. Thanks for sharing! It is always tough to know what to do when your friend/loved one is facing a critical illness. I don’t have any advice… but I do try to be there.. ask them what they need and not forget the family too!

  26. I can sympathise with the serious ilness issues, my brother is currently in the hospital for serious surgery. I hope this year is better MUCH MUCH better for you.

  27. So glad to hear you are doing well Jill! What a great list! My advice? Make them smile!

  28. When you had your heart surgery i was just getting to know you via facebook. I was so shocked and praying for you but didnt think it was much. I cheered you on when you posted. I learned that fb is a connection to people and caring even when you dont know them personally. Happy to have you as part of our community now and then. Much love and health to you.

    I now learned more from your lists. Plattitudes have always gotten my hackles up. Someone i know dosent speak realisticly, always a platitude. Maybe I am getting old but I am considering this is not a friend. So thank you for being a teacher too

  29. I had a serious illness when I was 20 years old. I remember thinking, where is everybody? I thought my friends should have visited me while I was recuperating. It was a real eye-opener to learn who my true friends were. Your rules are truly on the mark!

  30. Offer to clean the toilets, dishes, etc. The nitty gritty.
    Thank you and so happy you are journeying on.
    One gets accustomed to the scars and they are apart of ones body life map.

  31. Great list Jill. I am always concerned about intruding, so I ask if there is anything I can do for them or bring to them or that they need.

  32. Hi,
    There are so many good ideas . I had a serious back op 10 years ago and that was when l realised that people try but so often don’t think! Being told you look so much better or you are really walking well, when it is obvious l was not! they think they are helping but they are not. I don’t mean to sound ungrateful but if people don’t want to be honest, don’t say anything. I think when it is about 3 weeks after the op, that was when needed the help and support of friends. Most of them by then, were back at their jobs, busy with their families and you and your op are a thing of the past. They don’t mean to be hurtful but they think by now l should be getting better. Often that is when some people start to develop depresstion. So yes the food parcels help, the cards are beautiful , the company is great, all while you are in hospital and a few days afterwards. When you are home and alone and husband is back at work … that’s when you need support. I am SO glad you are better and”Arting ” well. By the way, l love your blog and your Art. Good luck to all that enter your amazing giveaway. Lynda

  33. So glad you are still here with us!

  34. Wow Jill great list. I have an autoimmune disease called Chrones and have had the unfortunate luck to have a secondary infection that sometimes happens to chrones patients.
    What is so hard is people don’t understand that chrones is an invisible disease and unless they know someone who has had it they think that you are making it up. Seriously. Someone admitted that to me. The most hurtful comment I have received is Why are you not better already! Horrible. Especially since the best I could ever hope for is some sort of remission that wil be hard won. Oh and I am so tired of all my docs going…oh this is so complex…and unfortunately it is true and they are doing the best they can for a disease that is so hard to treat. Sorry to go on so long. Thanks
    Can’t wait for your new book
    And hope to be well enough in the future to perhaps take another class again.
    So glad you are well and thanks for sharing.
    Wishing you much health!!

    • Leigh, I am familiar with Chrones, my aunt had it and so does my cousin. It is brutal and unrelenting at times and it takes every ounce of energy to live with it. I am sorry that this challenge is yours to face, and I hope that your friends read this and understand you better. Love to you.

      • Thanks so much Jill. Wish they did understand more but if they don’t have first hand experience it is a moot point
        Hope your test goes well tomorrow. Sending light and much prayer

  35. I love your list. It’s great seeing it from your perspective. Because people forget just being a friend is enough. One doesn’t need a friend looking up on WebMD trying to help… that’s what the real doctors are for.

  36. You’ll always have a story to tell. An inspirational one. Thoughts and prayers for your “new” life!

  37. When I read what had happened to you-I was worried for you even though I never met you…I sent love and courage to you and prayed for you. As I am sure many people did. Your list above reminded me of the out pouring I received after my own health emergency in 2007. We never expected such an outpouring of love and help. After all these years I think about it often with all the gratitude I have. I am so glad you are well and making art and showing up in my feed everyday.
    You are a great teacher and you have an amazing gift to share with the world….keep shining sweet lady!!!!!

  38. Smile often 🙂

  39. Dear Jill,

    Your list was quite thorough. Bravo! What to add ~

    I might say that if you know someone who has endured a major trauma such as this, to be aware that unusual things can happen within that person at any time. They can sense something, feel something, see something that they’ve never seen before. This journey is much longer than the time it takes for preparation, surgery and recovery. This journey can go on for a year or two without abating.

    If your friend suddenly stops like they’ve seen a ghost, be gentle with them, be kind, be OK with the fact that you might not ever know what happened at that moment as it may be too bizarre for them to begin to describe or share it. That’s OK, it’s part of the journey. Just be there for them because they are in a place they’ve never been before and the footing is slippery and uncertain.

    When they emerge from this place, you will find a new strength in your friend, a new sense of vision, a new awareness, a new energy radiating from them. They have been changed forever and that scar or wrinkle, that injury, whatever remains ~ is a badge of achievement.

    Honor them & love them, watch them grow…

  40. fabulous recovery. “just listen , really listen, be there for them, ask how you can help in any way. “

  41. This quote seems perfect for your list, so glad we get to celebrate with you Xx
    “Just to sit – without expectation – with someone who is in grief or fear or loneliness or despair, without trying to fix them in any way, or manipulate their experience to match your idea of how it should be; just to listen, without playing the role of ‘expert’ or ‘enlightened guru’ or ‘the one who knows best’; just to be totally available to the one in front of you, and to walk with them through the fire, to hold their hand when they are broken – this is how we begin to heal each other through love. Beyond our roles, unprotected, unresolved, undefended, we truly meet.” ~ Jeff Foster

    • This makes me so happy. Exactly right.

  42. Our greatest battle, is our battle against death. Some of us have the chance to do this battle and others do not. I am so happy you won your battle! Another year of life is a wonderful gift and you will live it to its fullest. Cindy

  43. sorry, my email was wrong in the previous comment

  44. I’m fond of just sending thinking of you cards randomly with the reminder that I’m here for rides or meals or whatever. but you are so right on with the ask first advice!

  45. Thanks for your comments, Jill. They will help me help the best way with those around me in need. So glad your list of numbers included “1 book published” – and I so look forward to it! I hope that you are able to map this past year, and let it go to a place of less emotion and terror.

  46. So glad you have mended! Also, just be a good listener friend. Xo

  47. Thank you so much for a very informative list. For someone who hasn’t had any major medical stuff, that is very helpful.

  48. I would add to the list Be Present. Whether talking on the phone or in person. Focus on being present. Observe, or listen, to the body language. You will know when the person has had enough of the conversation or visit. Be aware of what is going on with them. Set aside an agenda you have.
    Congrats on your recovery and the focus of your life now.

  49. Never presume that you know how the other is feeling. Even if you have gone through a similar situation, everyone processes emotions differently, and reacts in varied ways. Try to encourage your friend to be honest, and tell you what they need (which is much harder for some people that others!)

    So excited about the new book!!

    Kelley
    kelleyfewer@yahoo.ca

  50. Those are some awesome Pearls of Wisdom you’ve written up there. You’ve come through quite the journey. Congrats on the new book!

  51. I dont think you need to add anything to the list, it is comprehensive. I’m sorry you had to go through that but I am grateful you made it through!

  52. Focus on making good memories with them – something for them to remember in the future other than the illness and pain. Love that you are here sharing your wisdom!!

  53. Just having someone sit in silence is all one needs. It’s an awesome journey you have had this past year.

  54. What a lovely map and post Jill. I imaging making it was a great way to get some perspective, and well, map it out. It’s such a great metaphor. Your list made me laugh.

    Glad you are alive and kicking.

    Wishing you well.

  55. I’m so glad that you’ve done so well over the last year. I love your list! Best Wishes!

  56. WOW Jill…so resonate….yes, yes, yes to everything you shared…..I would add #10. for those who are on the other side of the illness/injury be brave enough if you are not able to be present to state that, don’t just disappear….the unspoken avoidance/abandonment/rejection is excruciatingly painful…..I’m recovering from 2 TBIs…I’ve lived every bit of this and then some….play well Jill…..you are in my heart and prayers….

  57. When a friend of mine was in an assisted care facility after surgery I brought her a large container full of fruit (a few days worth). We sat and chatted a while and when she was in the restroom I hid a few cards around so she would find them and have an extra smile or two.

  58. Oh how I LOVE the heart map!! Thank you for sharing your honest thoughts about your recovery and feelings . I have been a caregiver all my life and it can be difficult to find the right words sometimes. What I have learned from that is that often it’s best not to say anything, but just to be present, and maybe hold their hand. Thanks so much for the giveaway offer and here’s to your keeping your strength along your journey to a full recovery.

  59. WOW! What a journey you have been on…all within a year! i’m happy that you have taken the negatives and turned them around to be positives. Your list will indeed help many that need to hear those words of help. I would like to just print them off and hand it to people who “just don’t get it”.
    So proud that you did not succumb and are still the vibrant you! Courage is being scared to death…and saddling up anyway.-John Wayne. Hats off to you!
    Thank you for this generous 16th offering!

  60. This is a wonderful map. The list is a great idea and useful for so many! Having gone through breast cancer twice, I understand what happens. Wishing you a wonderful year going forward. Found you through Irreversibly Moi.

  61. Totally get your list. My husband had spinal bone cancer two years ago and the recovery is still happening. It is truly a celebration of life.

  62. Just finished watching your interview. I loved it and agreed with many of your thoughts. Regarding your list: Sometimes people will tell you they are fine because they don’t want to be defined by their health condition. They may be sick of being sick and would prefer hearing about something or someone else. Also, please don’t offer your help to someone unless you are really going to follow through with it. When someone is ill, the last thing they need is the disappointment of someone making empty promises.

  63. I am making a copy of your list and promise to read it every time I try to “help” a very sick friend. Maybe I should say “traumatized” “near death” friend. I will print it and read it because it is really hard not to give advice in these circumstances. The friend’s heart is breaking and is so desperate to do something. The friend is also in pain and vulnerable and in an abyss of not knowing what to do or say. It is a gift to have your list of the good, the bad and the ugly. Thank you so much. There aren’t many people out there who are willing to help us and we are often scared silly to even come visit.

    I wish you the best and you always inspire me and give me courage to expose my heart and soul in the art that I do.

  64. Jill – I browsed your FB page and found this article link. It’s excellent and the Heart Map is superb. Your list of Rules for when a friend or loved one is going through a serious medical (or emotional) experience also is outstanding. The comments and thoughts posted by your friends are as valuable to read as your story itself. Thank you for posting it.

  65. Thank you for the list. It is very hard to know what to do or say to people who are going through something major. I think often the people who don’t come around, are avoiding the situation because they don’t know what to say, and are afraid of making things worse. So lists like this are very useful.

  66. Thank-you. Suffering from a debilitating chronic illness which appeared out of nowhere about 5 years ago, I can relate to pretty much everything you’ve written here. It means so much to have it written so clearly, by someone so eloquent.

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