Giulia has a bad case of hives. We’re not exactly sure what triggered them, but it was probably about a hundred mosquito and spider bites, and the subsequent scratching, that has led to a steady escalation of the uncomfortable skin rash.
We took her to an international health clinic a week ago, as she wrote about previously. And we also left Jiwa Damai. It was the right call. She unquestionably got them there, and the condition was getting worse. There’s no air conditioning at Jiwa Damai, nor is there TV or wireless internet. We’d finish dinner around 7:30, and go into our room, and Giulia was left with nothing to do but try to not scratch until she finally fell asleep, several hours later. What a miserable situation: think about how much you itch, without being able to scratch, in a hot, un-distracting environment. It didn’t go so well.
So we have left Jiwa Damai on a hiatus that may turn permanent, we’ll see. We’re not particularly thrilled to have left Jiwa Damai, because it was an incredible place. But when traveling, you absolutely need to be flexible. Think about it: do any of you have the next 4 months of your lives planned out? Do you know where you’re going to be on March 1 and what you will be doing? We do, or at least we thought we did. We scheduled a 4-month time span when we bought our tickets, blissfully oblivious to how ambitious and unrealistic it is to micro-plan such a huge chunk of time, especially considering we’re traveling through the developing world.
So we’ve adapted. We left Jiwa Damai and went to a hotel in Ubud where there was air conditioning, a TV with a DVD player, and WiFi. Maybe a bit indulgent, but when you have a rampant rash on your body, a bit of indulgence makes sense. The doctor prescribed antihistamines and anti-inflammatory medicines and we assumed we were on our way to recovery.
After 4 days, the medicine had run out, and her condition was not better. In fact, it might have even gotten worse in the 4 days. So we went back to the hospital, and got new medicines to try a different approach. We moved hotels, and are now in Kuta, just 5 minutes from the hospital, rather than an hour away. 24 hours later she was much, much worse, and so we went back to the clinic yet again, for the third time, finally to see a specialist. That was yesterday. She is now on a fairly intense steroid treatment that has her hospitalized, which we hope will resolve things. 30 hours later, things are looking better, but we still have back-up plans in place.
It sucks to get sick in a developing country. You don’t speak the language, you’re paranoid that you could have something severe like malaria, you don’t know the health system and don’t know how well to trust it, and you’re fairly isolated from friends and family. It’s not an ideal situation, especially when you’re in a picturesque place like Bali, Indonesia, and you need to spend most of your time packed under cold compresses in a heavily air-conditioned hotel room instead of out enjoying yourself.
The experience of schlepping back-and-forth from home to the hospital, and a constantly nagging sense of worry, has brought back vivid memories for me. Fresh memories from the last year that I have been trying to move away from. I have brought Giulia to the hospital before. We’ve spent far too much time at doctors’ offices together.
Hold tight everyone. It’s finally happening. After months of hinting at the fact that I am writing a memoir, it’s finally time to reveal what it’s about.
Here goes.
In September of 2009, Giulia suffered a psychotic break. As a result of this, she was hospitalized in a mental hospital for 23 days. For those of you who have been with someone who is psychotic, you know how horrible it is. For those of you who haven’t, take some of your worst perceptions of a mental illness–paranoia, wild delusions, blank stares, altered personalities–and you pretty much understand what psychosis is. It is truly horrifying. The onset was severe, entirely unexpected, and as you can imagine, utterly destructive to our way of life. Her hospitalization was why I took a semester off from teaching last fall. When she finally came home from the hospital, she had settled into a dark and unshakeable depression that dictated her thoughts and feelings for a subsequent 6 months. We were in the fog for almost a year, and only started to punch through in the autumn months leading up to our this trip.
I spent a lot of time in the last year in waiting rooms, worrying about Giulia’s health. And so to sit in the waiting room in Bali through this week…let’s just say I didn’t like it. The trauma of her illness crept back into my existence. I was more worried about her hives than she was. I was terrified her medicine might disrupt her sleep, or that it might not react well with the other medicine she is still taking, and so on and so forth. Today at the hospital, Giulia was the one consoling an anxiety-plagued me, rather than vice versa. It feels too soon for us to be back in a hospital and to have so much unknown in front of us.
I’m writing about our yearlong battle against mental illness because I feel like I have to. When she got sick, I frantically searched for books about the family’s experience of a major mental illness. What could I do to help? What were things I should watch out for? Were my feelings of anger, sadness, and even resentment towards Giulia “normal” for how a spouse might react? Who could I relate to?
Problem is, there aren’t many resources out there for the families. There are a few books written by parents who have raised teenagers with a mental illness, but this was my wife here. We don’t have children; she’s my nuclear family. To watch my wife slip into an unrecognizable mental state had profound impacts on my understanding of love and commitment. If anyone else in my life had gotten ill, I would have talked to Giulia about it. But mental illness is cruel. It took away from me the very person I needed most, and put her in a place that was irrational and unintelligible. I didn’t have my wife to talk to. It was an exceptionally difficult year. There have been silver linings to the cloud, but it was certainly tough.
And so I decided, once Giulia started to get better from her mental illness, (oh and she is much, much better by the way) to write a memoir about my experience as a her caretaker. Plenty of people get sick, and so plenty of family members support them. I want my book to be about that. I’ve been working on it for about 6 months, and am in the stages of reaching out to literary agents and publishers to see if anyone’s interested in sharing our story with a wider audience. The book, by the way, shares the name of this blog. I’ve had the title picked out for a long time.
(Maybe now the first post that I wrote, welcoming you to our website, makes a bit more sense.)
Today when we were with the dermatologist in Bali, I was having gutteral flashbacks to Giulia’s 23-day hospitalization. Like then, I had a billion questions. Like then, I was nervous that things could get worse. I was uncertain about whether she was getting proper care. I didn’t know what to tell her parents, or my parents.
But there was a profound difference. Giulia was comprehensible. We could brainstorm, together. We came up with questions to ask the doctors, together. We researched a new hotel together. We decided to leave Jiwa Damai together. We adapted to our new circumstances…together.
In that way, my flashbacks were insincere, and I was able to get over them, because the part about Giulia’s illness that crushed me the most was absent. I wasn’t lonely. I had her to talk to and brainstorm with, and I wasn’t left to make huge decisions by myself.
To remind you, our trip is a part of our recovery and healing, with a heavy emphasis on re-connecting as a healthy couple. We weren’t ready to go back to work, and we didn’t want to just sit around at home. We felt we deserved a chance to enjoy ourselves. We set-up fulfilling opportunities to volunteer and inspiring places to remind us of the beauty of this world and this life.
Problem is, Giulia’s sick again. “It’s just a skin rash, we’ll get over this,” she tells me all the time. But she’s still sick.
And yet, this week has in many ways allowed us to de-mystify illness and medical uncertainties. We have been together to handle this and I actually think it’s been a huge chance for us to restore and strengthen our relationship, exactly because we can approach this together.
In the end, I couldn’t write about her hives without also writing about her mental illness, and so that’s how we got to this: a blog post, of almost 2,000 words, that was originally intended to be about the necessity of being flexible while you’re traveling, has instead turned into a lengthy confession of sorts. We’ve told plenty of friends about our memoir, sure, but never online like this. The cat is out of the bag now. The reality that we are going to actually share our story with others is just that: real.
I told Giulia about all these feelings that I’m having in response to her hives, and how I felt it was a good time to finally explain what our memoir is about. I wanted to see if she felt comfortable with sharing her illness. It felt right to me. But it needed to feel right to her too.
“What do you think honey? It just makes sense to me to finally discuss this on our website. You okay with it?”
Giulia looked up from her red, bumpy hives and smiled at me. “The truth will set you free. It’s time.”
We both laughed at her dramatic saying, but it’s true. We want to be honest about our experience to unhinge the burden from our own shoulders, and also to encourage others to share their stories.
And I’ll admit it. I feel a lot better writing about this, and finally revealing a fairly hidden secret. I feel like I’ve come clean. Obviously there is a lot more to the story–that’s what the book is for, because believe me, 2,000 words isn’t enough–but now at least it’s out in the open. Giulia was right. The truth does feel like it’s setting us free.
Let’s just hope the truth can also get rid of hives.
So proud of you guys and tell Giulia I hope she feels better soon! XOXO
By: Michelle on January 22, 2011
at 7:27 am
Hey Mark, I’m an unknown follower that has enjoyed living vicariously through your surf and travel posts, tweets. I am also a teacher and enjoy surfing the heavy cold waters of far Northern Ca. My dear sister is Bipolar, and now I find another reason to follow your writing. You should write that book! Thanks for sharing, and best wishes for good health for you and G!
By: KaptWilly on January 22, 2011
at 7:48 am
[...] This post was mentioned on Twitter by marklukach, Giulia Lukach. Giulia Lukach said: “The Truth Will Set You Free.” An explanation of our #memoir. Hardest but most rewarding experience of my life. http://bit.ly/ifi0CN #wtrmts [...]
By: Tweets that mention The Truth Will Set You Free « Where the Road Meets the Sun -- Topsy.com on January 22, 2011
at 7:54 am
Brave words from you and Giulia – I can relate. Sending Giulia a speedy recovery from the hives and wishing for insight, joy, and publication to you both in the near future!
xo.liz
By: materialsandmovement on January 22, 2011
at 8:15 am
All I can say is FUCK! What a an amazing post! You guy are truly amazing. I know we have only met for about an hour for a walk on the beach, but I feel we are somehow…well I don’t want to get all “Jason” weird on you. You know what I mean.
Thank you for being so brave and so honest and so open and so vulnerable and so human. This post epitomizes everything I believe about the open web, humanity and community.
We love you. Now go to a small town like Ahmed or maybe even Lombok. Get your asses into the ocean, Hives are often caused by stress. I know it is hard to hear, but find a place and relax.
We have a pink bunk bed and two screaming kids waiting for you an hour away if you need it.
You friends and family are not too far away.
By: Jabiz Raisdana on January 22, 2011
at 8:33 am
I’ve been praying for both of you for a long time. Things will continue to get better—hang in there. I hope to hear from you. love, Aunt Annie
By: Ann on January 22, 2011
at 8:40 am
i don’t personally know either of you, but got connected to your blog through a series of other blogs and have been reading along. as someone who has experienced something similar to giulia in the last year (and being a teacher myself, and having to leave because of it), i absolutely applaud both of you. i know my husband was experiencing the same feelings and not having any resource to turn to. we are now taking some time off together and rebuilding, in a similar way. can’t wait to keep reading – be well!
By: sara on January 22, 2011
at 8:42 am
It’s difficult to express how beautiful this post is. I hope Giulia feels better soon! Hives and itching are definitely hard to deal with, and if you don’t know what’s causing them… well, it’s so much worse.
Your photos are amazing as well.
May things get better!
By: Tempy on January 22, 2011
at 8:46 am
You’re both incredibly strong people. All of us at Priory are blessed to have the chance to know you and look up to you. Best wishes for the hives and for the book.
By: Alec on January 22, 2011
at 9:09 am
[...] This post was mentioned on Twitter by Jabiz Raisdana, Erin O'Neal. Erin O'Neal said: RT @intrepidteacher: Please read this beautifully open and honest post by @marklukach & @gsmile9 http://bit.ly/i2hqYl This is why we sh … [...]
By: Tweets that mention The Truth Will Set You Free « Where the Road Meets the Sun -- Topsy.com on January 22, 2011
at 9:23 am
Mark, you and Giulia are lucky. Now, that may sound like a weird response to your description of your travails on this trip and your Year of Trials. But so many people travel through this world without the kind of partnership and love you guys share. Giulia is fortunate to have you to help and support her in illnesses physical and mental, and you are fortunate to have her to help you understand and cope with your own reactions to your circumstances. And you both have the wisdom to know that the kind of relationship you have is a precious and beautiful thing, and that it needs nurturing.
They say that good times make bad stories. You have the makings of some good stories and a touching memoir. I hope you soon find yourself in happier, easier, less interesting times. And less itchy.
By: Tom on January 22, 2011
at 9:26 am
Thank you both so much for sharing your story. Coming from a family with a history of mental illness and also working in the mental health field, I know that your book will help so many.
By: Liz Wiener on January 22, 2011
at 10:12 am
I actually DO know where I’ll be on March 1. And April 1. And there on out. I’m a super Type A planner, so I have all my travel planned through August, our San Francisco departure date.
God speed, Giulia! I’m so sorry you’re going through that all this unpleasantness during the first leg of your trip =/ But things can only get better, right?
And I’m so excited to read your memoir and happy that Giulia is happy again. It’s amazing what a different person she is now than when I met her in fall 2009–so full of life, smiley and such a joy to be around!
By: Camels & Chocolate on January 22, 2011
at 10:13 am
Amazing story, Mark. I cannot say I understand, or comprehend, what you are going through now, or went through with Giulia along the path that you go to where you are now. Reading something like this, where hope is all one has, reminds me of the brighter sides that are always present in the otherwise dark valleys we encounter in our daily lives.
This is pointless to say, really, but I moved back into my college dorm today and on my desk (I copied one of my suitemates with this idea) I stick postnotes anywhere there is space with little sayings to remind myself of when I need a boost. After reading this post I looked through the ones that are stuck to my desk, and re-found this one:
“Somethings seem so far away to a half-hearted and broken youth. Terrified of the outside, and everything in your sight. It is just within your reach. Everything is just within your reach.”
It is a lyric from a band one of my suitemates listens to (not from a very popular genre of music but hey, he accepts me and I accept him, so it works out. haha). Anyway, I remember putting that quote up because times come and go when I simply feel helpless. I’m not calling you a half hearted, broken, youth, nor am I preaching because I KNOW you have more to teach me than I could ever teach you. But what that quote reminds me of is we all fall to our knees at times. Great kings fell, and simple people do as well. It is part of being human.
But when we fall, or feel pain, helplessness, or hurt, it is all apart of a hill we are trying to conquer, and just over the peak, “just within your reach”, are new lands.
I really enjoyed reading this and your honesty with the situation you experienced, and to Giulia, I appreciate your willingness to share this as well. I know for now I am another name on your comments, but I do wish to one day meet the both of you to say thank you for reminding me to appreciate some of the small things I overlook daily, such as this post, and how to truly be OK and free with the pains we often carry with us daily.
As always,
Best and take care,
-Christian
By: Christian L on January 22, 2011
at 10:34 am
Mark,
I visit your blog everyday and I read about your experiences in complete and utter awe of both of you-your insight, your courage, your wisdom, and now, your strength. I have a family member who is suffering with a mental disorder but I cant imagine it can compare to what it must be like to have a spouse to care for, worry about and struggle with. I also cant imagine what it has been like for Giulia. We went to high school together and, when I found her on Facebook, what I remembered most about her was her smile and cheerful disposition-I am so glad to hear that she is getting that part of her back and that she is lucky enough to be doing so with an amazing husband by her side to help. I want to thank you both for inspiring me to take more risks, live life to the fullest and for sharing so much of yourselves with us all. Youre blessed to have one another and those of us who read your blog are lucky to share in all your experiences and learn from you both. Best of luck as your journey continues and I hope Giulia’s feeling better soon
Thank you again!!!
Catherine
By: Catherine Bracco on January 22, 2011
at 1:17 pm
It took a lot of courage to share such a personal and intimate story. A bold move indeed, but letting us in will only enhance how much we love and care for both of you. It goes without saying that 2009 was an eventful year for you guys and one that you will never forget. The love that you have for each other has helped you both survive this difficult and challenging time. You both give lesson and definition to what love really is.
May both of you continue to be filled with comfort, love, strength, grace and a lasting sense of peace.
Life has meaning only in the struggles.
Triumph or defeat is in the hands of the Gods.
So let us celebrate the struggles.
- Swahili warrior song
By: Judy Zytka on January 22, 2011
at 1:26 pm
Mark, you and Guilia have been on quite a journey and I’m truly touched that you invited the rest of us to travel with you. I look forward to reading your book some day, as well as passing it on to others, who like me, have had mental health experiences in our own families.
For now, let’s get rid of the hives!
Thinking of you both,
Sue
By: Sue L. on January 22, 2011
at 4:36 pm
Thanks for sharing your story.
Engaging and motivating. Wishing you the best – hope Gulia gets better soon. Great that you guys learn and share from everything.
Greetings from a fellow couple traveling
Robert
By: Robert P on January 23, 2011
at 3:02 am
Thanks Robert! Means a lot coming from you. Hope you are having fun in Tokyo!
By: Giulia on January 24, 2011
at 7:00 am
You guys are AMAZING! There are no other words to describe you two. You have been my inspiration since my senior year when you pushed me to go to Daraja.
I love hearing about your amazing trip. I know about being sick and in the hospital abroad. Many people have to go through it, but it will all be ok in the end.
Daraja is very much looking forward to your arrival!
Miss you both very much and love reading your posts.
Lots of love!
By: Sarah on January 23, 2011
at 12:31 pm
Thanks Sarah! We are so excited to go to Daraja with my brother too. Hope all is going well. xoxo!
By: Giulia on January 24, 2011
at 7:02 am
wow… i’m so happy to have found you both on twitter. very inspiring! sending lots of love and hugs your way but more than anything sending a big CONGRATS for being able to express yourself so beautifully {i’m sure you are being the voice of sooo many that don’t have this gift}
May the hives go away and the travels continue
xox
a friend, through twitter & life
adriana <3
By: adybecerra on January 24, 2011
at 11:27 am
Thanks sweets for your love & support. xoxo!
By: Giulia on January 27, 2011
at 2:53 am
You guys are inspirational and sooo strong.
Hope Guilia is getting better soon, to be able to explore more of beautiful Indonesia. All the best for you two. And if you ever end up in Berlin, let me know
Simone
By: Simone on January 25, 2011
at 4:35 am
This website came through to me somehow via FB, and I absolutely LOVE it. I think what you two are doing is simply incredible. You’re inspiring!!! Can’t wait to continue on your journey…
By: EBehr on January 25, 2011
at 12:26 pm
LOVE you guys!
By: Annie Griswold on February 1, 2011
at 1:07 pm
[...] of our older posts that address Giulia’s illness. I think the best two to get you started are The Truth Will Set You Free, and A Walk To The Lighthouse. They’re especially great because one of them is from my [...]
By: Our Book Trailer « Where the Road Meets the Sun on October 4, 2011
at 1:26 pm