About My Heart

Posted by on Jul 14, 2015 in About me | 62 comments

Cards

It has been four and a half months since I went from having a cough to the Cardiac ICU in five hours and ended up having open-heart surgery for 8 hours for a 9cm aneurism I had no idea I had. I have spent the recovery time taking drugs and getting off of them, three days a week exercising to rebuild the 50% muscle tone that I lost because of this, and generally getting used to being a cardiac patient.

The thing is, I am nowhere near used to it, and am not sure I ever will be. I went into the hospital a fairly fit 57 year old with ambition and a full life. I came out a 115 geriatric patient who could not lift more than 5 pounds and cried a lot the first few months. I slept in a borrowed recliner, when I slept. I had to give up caffeine. Oh, I miss my coffee.

I am alive. That is the good news. That is really the only thing that matters, or should. But there is more.

So many things changed because of this event.

The good news:

  1. A HUGE amount of people showed up and showered me with love and caring. It was amazing. I heard from people all over the globe, and lovely friends showed up at my door full of help and concern. Full of love. My sister Jana got on a plane and came to help me and my family by shopping, sitting with me, hanging with the kids, attending to all of my needs. My sister Linden sent a set of the softest pajamas imaginable, that I could actually wear without pain. My friend Rosalba made me a vase of paper flowers because the hospital did not allow real ones. My brother Mark just showed up, even when I told him not to. He came and sat in my room and was present, in the most profound and loving way. My husband Steve handled the household and all of my needs amazingly. My friends set up a meal plan and we had dinners delivered when I got home. Paper Dolls from the Life Book Group (where I teaching come September)  showed up in the mail. Love and concern poured in from the most unexpected places.Cards2

The bad news:

    1. Some relationships have suffered. Some of my loved ones did not show up at all. It is hard not to notice that, and I have done some sorting out because of it. The one truly profound thing that I did experience was the night before my surgery, having read and signed all the papers about all the risks I was taking, I lay in the dark hooked to so many tubes and thought about dying the next day. If I did, who would be in the room with me that night if I could have anyone I wanted? Who would I not want? The answers that came to me surprised me. I realized how many people I had in my life whose energy I wanted filling the room. And, some, after hard thought, who I realized did not fit my life anymore. This is not to say I held any anger toward them, just that I would not consider their presence to be an asset at a time like this.
    2. My hair fell out. This happens with some anesthesia responses in a surgery like mine. I did not expect this, and the hospital does not tell you. http://johnowentoday.blogspot.com/2012/07/hair-loss-after-illness-or-surgery.html A friend who knew and my hairdresser told me. They were right. After about 3 months post op, your hair may fall out. Mine did. Good that I have a lot of it, but still, it is not what I would wish for you.
    3. I have a scar, from the base of my neck to just above my belly button. It still hurts. I call it the “Caterpillar Cat” because it feels like a long cat with many claws. There is a weight and clawing on my chest that I am ready to be done with, but all of us heal differently and this is what my body is doing. There is no danger here, I have had every x-ray and test imaginable, but it still hurts. And I do not like how it looks.
    4. I lost a chunk of my career. People made choices for me that they had no business making, and cancelled my classes and articles that I could easily have done. I ask all of you who are reading this, please, do not make decisions for someone else in situations like these. Ask the patient. It does not feel good to be treated as though you are no longer viable. It is not a charitable act, I promise you, to be dismissed in this way. My gal pal Lorri Scott reminded me of this hilarious part of Monty’ Python’s the Holy Grail.


All in all, I am moving forward. I do cardiac rehab three days a week with gents in plaid shorts. My numbers and X-rays, sonograms and every other imaging thing one can be tested by are coming out well. I do not wake up in a panic anymore in the middle of the night. I redesigned my sleeping space to be more peaceful. My new book is coming along and my publisher has been stellar with the delays. I am hiking with far more gusto than I have for a while.

For your reading this, I am grateful. For your caring about me and my journey, I am grateful. For Dr. Lance Walker, the miracle worker and his team, I am grateful. When I left the hospital, he came and sat on my bed, took my hands and said “I am so glad we could save you.” I am too. So very glad.

 

62 Comments

  1. I’m glad too, Jill. xox

  2. Oh, Jill, I cried as I read your post. Have wondered so many times how you are doing and am so relieved to know you are recovering well! The world is a far, far better place with you in it. The gifts of your art and your teaching as well as your generous spirit are lights in this sometimes dark and sorrowful world. We are all blessed by your recovery! I am a 20-year breast cancer survivor, and I sooo understand what you have said about the people who didn’t show up for you. People I had thought were my closest friends were so terrified by the word “cancer” that I never heard from them again. On the other hand, I was blessed to see real love in action! The ones who did show up showed up unfailingly and enthusiastically. I learned that saying the words “I love you” is easy. Making a pot of soup at 3 a.m., taking my kids out for pizza and taking my dog to the vet for her shots – these actions speak far louder and more
    convincingly 🙂 Sending you much light and love, gentle hugs and many prayers for continued peace and healing!

    • My friend Stephanie shared this with me “Friends come and go, like the waves of the ocean.

      But the true ones stay, like an octopus on your face.”. Thank you for sharing with me Kathy. I hope you are surrounded by “Soup Friends” now!

  3. Add me to the so very glad list! Sending lots of love.

  4. Jill, this takes guts to go so deep in your journey to health. You thought you were healthy before but you weren’t. You didn’t know how sick you were. Thank God you had your surgery, now you can be and feel healthy! Your scar is a gift, you hate it now and I don’t blame you. I have one on my neck that I don’t love, but I can turn my head without pain and that I do love!! I wish you nothing but good things and positive thoughts for when you are discouraged. You are amazing and you are better than before, you just have to realize it. No one should have made those changes regarding your classes without speaking to you first, that’s messed up. Hopefully they’ve learned their lesson and won’t overstep again. Wishing you health and healing!

  5. Oh, Jill! Thank you for sharing and thank you for healing. It really takes so much longer than we think/know, but you will be with us and for that we are all grateful! Many hugs to you and your family!

  6. I am so glad to hear you are on the road to recovery! We were all so worried when we were told of what happened! I am grateful for the doctors who saved you, too! You are an amazing inspiration in so many ways! Praying for your continued improvement of your body and for your patience, as it is hard to want to be back to “normal” right away! You will get there! God bless!

  7. I am so very glad that you are here, Jill! I have followed you throughout this entire ordeal, always sending loving and healing thoughts. Sometime in the future you will not mind the scar. It will fade away replaced by all the joy you find in life. I lost a breast to cancer two years ago, and amazingly I go through whole days now without thinking about my scars. You are and incredible artist and woman.

    • Ann, I agree with you, and think it will be way easier to ignore the scar when it stops hurting and reminding me everyday. That is the part I don’t like. The scar itself is going to be okay. I am sorry for your illness and hope we both move forward with our heads up!

  8. I am so happy that you are still healing, moving forward. Changed, certainly; but you are on your way. Small, then bigger, steps every day. Soon, you’ll be leaping.

    I had a similar experience with some friends and family who deserted when I had a serious illness (I’m very well now). I actually feel lighter–without them in my head, that sort of energy out of my way. I focus on the ones who showed up, who stayed with me… and that warm and healing glow of love they created.

    Best wishes for continued healing. And I am looking forward to that book!

  9. My dear, dear friend.
    What a hellacious road you were (and are) on.
    I celebrate with your victories and moan(ed) with your heartache. Illness, like divorce, brings out the worms from the wood and the cream from the milk.
    Here’s to years of seeing cream and not worms!
    xo

    • Let’s make ice cream!!! Love to you dear friend.

  10. Did you wonder if the surgery had made you worse rather than better while you were struggling to get well? I would have thought that. I had no idea that the surgery took so much out of you, and that it so radically changed your life. I am glad for the ones who stepped up for you and sorry for those who didn’t, because in the end, it is their loss.

    Thank you for sharing so much about your illness and recovery. I had no idea of the magnitude of difficulty you had faced – and still face – and I am wiser for knowing it. It will help me be more sensitive in the future to others who may face similar situations. Thank you for opening up, and enlightening us all. I hope that your recovery brings you back to a good place – maybe not the same place from before but a better, new place.

    • Since I did not feel sick when I went in, it did feel at the start that the surgery made me way worse. It was very hard to go from well to possibly terminal in such a short time. It was the scariest time of my life.
      I am now past the terror of it, and thanks to my blue sea monster I am healing quite nicely. oxoxox

  11. Oh Jill, I got a bit misty eyed reading your post. What an amazing journey you have been on. I have wondered many times about you and how you were/are doing. Thank you so much for the update. You are an inspiration in so many ways and I too am very glad you are still here. Many blessings to you…

    • Thank you Kim. It means the world to me to have you here.

  12. i can so relate to your journey after a several months in the hospital and 5 brain surgeries due to a brain aneurysm my how things change so quickly during recovery. I also had a lot of things change for me without even asking my thoughts so not cool… I am glad to be alive and will value life differently than I did before and I am also changing who I spend my time with … I wish you well and healthy healing as we travel down this similar road . I will one day be independent again and make a full recovery if I can do this so can you. I am stubborn and will not settle for less than full recovery I will survive …oh and hair is overrated by the way hehe you should see my head … I someday hope to not walk like a drunk woman and the stares I get oh my what people must think of me but I just laugh and think if the only knew my story … Stand tall with your head held high and know we are here for a reason God is not finished with us yet… Lovely healing days ahead for you. Enjoy life and who you choose to keep in it. Love to you and yours … Dawn

    • Well I have done the wobble thing recently with a bout of vertigo. Awful. I hope your story continues in an artful, joyful, and supportive environment.

  13. Thank you so much for sharing – so glad you are on the mend and recognizing what you need and don’t need in your life. In caring for my 92-yr. old mother-in-law and my father-in-law before that, I think I’ve finally realized that some people just do not know how to handle illness in someone else….they are stymied and therefore don’t even try. I am glad you had many loving people supporting you. Blessings to you as each day finds you stronger!

  14. Thank you so much for the update. I’ve thought of you so many times since you were hospitalized and sent a prayer up the the universe to comfort you and to give you strength.

    I see that I just missed you in Forest Grove. *GRUMBLE* Someday, I want to take a class from you and wish you well in person!

    When I had my spinal cord severed I was appalled by people making choices for me, canceling work etc. as if I had no idea of what my own capabilities were. Work and art was what saw me through. Those deadlines would have been a blessed distraction. All that is to say, I have a glimpse of how that feels.

    ((((HUG))))

    • Nicole, that is horrible, both about your spinal cord and the way you were treated. I hope to get the word out on this, how hurtful in every way it is to be treated like that. Not good for your recovery. But art is! Thank goodness we have that.
      The best to you.

  15. Such a raw – and appreciated – reflection Jill. I have not been through this myself – only vicariously with my husband (cancer surgery). The parallels are amazing. But since we have the benefit of 7 or so years behind us I’d just say I can’t recall the people who didn’t show up – only the ones who did! 🙂 PS In your friendship “calculus” I hope you also factor in those of us who, though not intimate, for one reason or one hundred feel kindred to you and have supported you from afar with love and healing light!

    • Alyson, like I said, the strongest wave of wonder and support came from people I have never met. I DO appreciate all of you so very much, it has been profoundly moving to read things like you are saying here. Thank you, so very much for coming here and caring about my story.

  16. Oh dear Jill,
    So incredibly pleased you are pushing through it! It seems as though you were broken hearted in every aspect, but are now repaired and can rebuild, realign, re-access and regain your amazing self. I spilled tears with you while I read your beautiful post. The incredible feeling of loss and being out of control is so very BIG sometimes. And I adore the comic relief, “I’m not dead!” Sending the most massive gobs of love and light, healing and gentle love your way. Blessings,
    Cheri

  17. So glad to hear youre on the mend. Love your creative work and, although we havent met in person, i have followed your health journey. Many hugs and positive thoughts for continued, and quick, recovery.

  18. Oh Jill. I still can’t believe this happened to you! I’m so sorry for all of the pain, physical and emotional, that you’re still enduring. But I am SO glad you’re here. And I can’t wait to see what you do next. <3

  19. I understand absolutely everything you went through, before and after surgery. The problem I had was I had to have lumbar surgery. I did not get surgery in my own country Aruba, but somewhere else. I traveled with my husband who is my hero and my rock. I had to have immediate surgery the day after we had arrived and when they wheel you in and away from the one you love, knowing that there is so much you want to say, but could not anymore was very, very scary for me. The team that helped me and my surgeon were the kindest people I met. When they were sedating me, the calm I felt right then was priceless and I woke up with my husband next to me and the surgeon, who wanted to be there when I came to. This was one week ago. I cannot begin to tell you how very happy I am that you are doing alright and are slowly but surely getting back on track with your health. Changes are always difficult, but time is on your side and you will get better and stronger. I love your art, I love the class I got from you in Lifebook 2015 and I look forward to reading your blog and reading about your progress. I pray that you will get better and be back on your feet doing the things that you love. I know I will be doing the same. All the best and much love going your way, Jean.

  20. Jill, yes to all you wrote! Having survived anal cancer over the 2013-2014 school year, I can identify with every word and emotion. So many friends came forward. My daughter flew in from Florida TWICE to care for my body when I could not, and I realized who should stay … And who should move on. Blessings to you on your healing path. I was blessed every step of my journey. ~ Elizabeth

  21. These things that take the most out of us also create the greatest room for growth, don’t they? They clean out the cobwebs of everyday life and put us in a very unique position to see what is REALLY important. Literally overnight, it is all so much clearer! I am so happy you were saved and happier still that you grew (and continue to grow) from the experience. That is what we’re all here for I think; to see and live our own truths. And to love. Always to love. Hugs and healing thoughts!

  22. Thank you for sharing so openly and honestly. What a blessing to have been able to sort out so many feelings and thoughts as you recovered. I pray that your recovery continues to go smoothly and that your strength continues to grow. I could truly relate to your hair loss as I also experienced that after major surgery. Too bad no one thought to mention that to either of us. Wishing you well.

  23. How amazing Jill. I am glad you are here!

  24. Your words are so very honest. Straight from the depth. Much appreciated.

    Dave is a 30 year Cancer survivor and now an 18 year Triple By Pass patient. My Energizer Bunny. He plays golf thrice weekly, keeps up our seven acres and snorkels with me. His positive outlook is amazing.

    Yes, we lost friends who couldn’t handle the illnesses. That was harder on me than Dave. He was able to let go. That, I’ve discovered, is essential. Otherwise it eats at one and makes one bitter. Speaking for myself, it was quite a jolt of reality.

    Here’s to you, Jill!

  25. Wow! What a journey. I hope that your recovery remains steady. Onward and upward!

  26. I’m a proud marcher with the many in yur glad parade. xoxo

  27. Ohhh Jill I am so happy to hear from you! I remember checking your blog the day after your surgery and feeling concerned when I didn’t see an update. And then more and more concerned as the weeks passed. I’m happy to hear you are healing and making the most out of your experience. get well soon! sending lots of healing vibes your way!

  28. I’m glad your surgeon was able to save you too and have been following you from the UK through this experience. I have gone through my own life changing surgery back in my 30’s and have a scar from my breastbone down past my navel and beyond. It has a nasty great lumpy bit towards the bottom where it refused to heal (but eventually did after further surgery) and parts of it look like a highway interchange. I have resented it in the past and it took a lot of coming to terms with but it’s part of my life history and it shows how strong I have been and hopefully still am so I don’t hate it these days. These experiences certainly make you take stock of your life and its priorities and I have found that self preservation and protection become paramount. Keep your loved ones close and guard your energy. Above all, enjoy life 🙂

  29. Long may you keep on hiking!

  30. I’m so glad to hear that you are doing better. I’ve thought of you many times over the last few months and was happy to see you getting back to teaching and traveling. Are you considering attending the new Artfest next March? I’m trying to decide, but it just wouldn’t be the same if you weren’t next door again.

    • I did not know there was a new Artiest! Exciting!

  31. Powerful words, well said, thankfully, shared. Thank you.
    I had 2 brain aneurysms clamped a year ago – your thoughts here – well, you’ve helped me clarify my own. Again, thank you.
    My prayers, my wishes for continually improving health to you!

  32. Thank you so much for the update, Jill. Such a moving, profound blog post. I am so very glad that you’re doing so well! I thought of you the other day as I was looking at the beautiful portfolio of collages I made with you in Orvieto. Hugs!

  33. So very glad that you are recovering so well. I love your updates. I cannot imagine what you are going through but am glad that you have family and friends we are there for you. We are just FB friends and have met briefly at a retreat or two, but I follow your work. Just glad you’re ok.

  34. I am reading this and crying, remembering some of the same feelings. Remembering making my will because I didn’t want anything to be up in the air if something bad happened. Or if the chemo didn’t work. I feel for you. My hair came back in but not as thick as before. But I discovered that I like short hair. In September, I will be three years cancer free and somehow I feel like I’ve just begun living again, now that I am over the devastating treatment that is chemo. Girl, shed those extraneous people and live your life! We are all happy that he could save you! <3

  35. Dear Jill, Thank you so much for the update, I’ve been thinking about you and wondering how you were going. I can relate to some of what you said as I started chemo in April. Take care and keep on hiking, love and hugs, Michelle.

  36. HugsHugsHUGS!

  37. Thanks for sharing your story, beautifully told. I have been wondering about you and how you are coping. Happy to hear you are doing better and you know there is still more to come, life is a journey…and some are just different than others. Keep up the exercise and your love for others. Hugs!

  38. Dear Jill,

    Always thinking of you from afar. You haven’t the faintest idea who I am 🙂 ( so hello ) ,just a girl who adores your work, book, words and who is also so very glad your starting to feel better. Sending gentle hugs from the Calif coastside.

    On so many levels you have helped me. So, thank you……Keeping my eyes peeled for a class to take:) and of course your newest book, so excited! The maps I have done so far have been a fantastic journey that I truly thank you for.

    Take care and continue to feel ever so much better each and every day!

    xo Lis

  39. I’m so glad you are coming through the other side of this event you are enduring and conquering. Isn’t it interesting the things that occur that suddenly give us pure clarity in our lives and open our eyes with the absence of all the white noise around us in everyday life.

    As I sit here in my studio, with my cat trying to sit on my arms in front of me, I appreciate the simple things in life, the ordinary that become extraodinary. doing a diploma in art therapy at the moment, i can see you will use your art to aid your healing and press through this bump in the road. xxxx

  40. Jill, thank you so much for your update. Like many others I have thought of you and have been wondering how you are doing.

    You have been through quite a journey. Sending best wishes and healing thoughts as you continue to recover.

    Hugs across the miles.

  41. Oh so glad that Jill is gaining strength each day. Life is unfair but look how strong you are as a person and look what you continue to do. You are amazing and a source of strength for all these people who did not forget you. I am so glad to know you. 🙂

  42. I think of you so often, Jill. I’m always sending love your way. It’s a journey back and sometimes we have to put some of our baggage down.

  43. Life is a gift given to you. You are the gift given to us!

  44. You have such strength to go through this and come out the other side with such a wise reflection of the effects . . . I cam only marvel. And I guess, from my state of wellness, wonder how I would fare. Kia kaha!

  45. What else can I say but I LOVE YA…
    You’re my BFF and you know what BFF I’m talking about 🙂

  46. Jill- I am not a great social media enthusiast (put it down to my age) but when your name flashed up on Facebook I just has to logon to you and was held in concern for you but in admiration too of your indomitable spirit. I remember so well staying with you in Colorado and all your kindness in organising book making workshops for me on one of my workshop visits from the UK. It must be at least 5 years ago now? so
    your children must be in their mid-teens now.

    I just had to send this message of feeling and warmth to you spontaneously… the best is yet to come… My love xxx Paul

  47. When I read about your scar I passed your description on to my daughter-in-law who is a **certified myofacial release therapist** since I remembered what she’d told me about some of the people she’s been able to help. I asked her if myofacial release therapy might help you and here’s what she wrote back: “Absolutely. Myofacial release is totally the ticket. Very gently and superficially at first, since it’s still pretty recent.”

    Very best wishes.

  48. Very, very glad you are on the mend and also that you have another book coming out. Cardiac rehab ain’t for sissies so pace yourself and your adoring fans will patiently wait for your reemergence.

    • This made my morning! Thank you Linda, for the kindness and good wishes.

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