Book Review: “The Things We Don’t Say: An Anthology of Chronic Illness Truths”*

I love reading, but reading is one of the things that has taken a hit during the quarantine. My attention span has suffered. “The Things We Don’t Say: An Anthology of Chronic Illness Truths” by Julie Morgenlender came at the perfect time. It even comes with a disclaimer that you don’t have to read it all at once. I’ll have you know, I didn’t read it all at once, but I got about 100 pages in before I took a break.

The stories contained within the book’s pages are just as heartbreaking as they are all too familiar. They speak to the losses that we all have endured when having to change our lives because of chronic illness. They speak to the relationships that survive the confines of chronic illness and the ones that do not. They speak of the guilt we feel for the things we can do and the things we cannot.

I think the book also brings to light the disproportionate impact that chronic illness has on women. Maybe men are afraid that sharing their chronic illness experience will make them not seem as manly. So the few male stories in this book make it unique and provide a perspective that isn’t always included in the chronic illness narrative.

Just like Marcia Allar’s “Life Savers,” the stories in this book come in different colors and flavors. They are not one size fits all. Some are more narrative while others are more “how to”.  

This book takes me back to an experience I had early on in my chronic illness journey. I had just finished my first year of graduate school, and was in the hospital getting steroid infusions. I had never been in that environment before. The girl in the chair next to me was being treated for cancer. I was trying to get the nurses attention, and I asked the girl if we were allowed to listen to IPods. She looked at me and said, “You can do whatever you need to, to get through it.” At that moment, I felt like diagnosis didn’t necessarily matter in terms of community. In that moment, our diagnoses didn’t matter, what mattered was our shared experiences as chronically ill people. And this book left me feeling the same way. I may not have fibromyalgia or ehler’s danlos or a host of other conditions that the authors in this book write about, but regardless of diagnosis, the lived experiences are much the same.

I related to Katherine Ernst’s experience of a doctor questioning another doctor’s diagnosis and asking why she hadn’t fought the other doctor, even when the new doctor is asking her to trust them.

And as Sónia Lopes writes, “But no one told me that the social aspect of living with a chronic debilitating disease like this would be the hardest for me to manage.”

I’m struck by how, 12 years into my illness journey, so little has changed. Young women are going years with serious symptoms, battling to find doctors that will take them seriously. Throughout, I found myself shaking my head, both in agreement and dismay.

I want to thank Julie Morgenlender and the other authors who contributed to this book for sharing their stories. 

Now more than ever, we need books like this. We need our voices to be heard and our stories to be told. And we also need to amplify the voices of those who aren’t given the opportunity to speak.

If you want more information on the book visit Chronic Illness Truths.

To purchase print or digital copy of the book, it is available on Amazon.

*****

Morgenlender, Julie. (2020). The Things We Don't Say: An Anthology of Chronic Illness Truths. Three Barrel Bluff.

* I received a free digital copy of this book from the author. However, the review presented here is solely based on my personal opinion of the book.

“Real Life Diaries: Living with Rheumatic Diseases”

In honor of World Arthritis Day, I’m excited to announce that “Real Life Diaries: Living with Rheumatic Diseases” has been published.

I’m honored to share this title with you, my story, and the story of others living their best lives with rheumatic diseases.

The book is available now on Amazon:

https://www.amazon.com/dp/1944328696/ref=sr_1_1?ie=UTF8&qid=1507854950&sr=8-1&keywords=real+life+diaries+rheumatic

Book Review: “It’s Not Yet Dark”*

“I was once invisible.  I moved among you, invisible in my disguise. Now I am difference made manifest” (p. 2).

It’s not often that you start a book and finish it the same weekend.  It’s also not often that you find a book that makes you laugh, cry, think, question, and wonder, all at the same time. 

Once I started reading “It’s Not Yet Dark,” I couldn’t put it down.  I didn’t want it to end, even though we all know what the ultimate end to the story will be.   

In 2008, Simon Fitzmaurice was diagnosed with Lou Gehrig’s Disease (ALS).  He was given three to four years to live.  That was nine years ago.  In that time, he has lost the ability to use his arms and legs.  He can no longer breathe on his own and relies on mechanical ventilation – a lifesaving technology that he almost wasn’t allowed to have because of his diagnosis. 

But he has also gone from having two children to having five.  He has continued his career as a film director.  And he has written this book.   

Simon Fitzmaurice wrote “It’s Not Yet Dark” by using eye-gaze technology.  I can’t even imagine the time and effort that went into it, but the result is truly amazing.  It’s written from the heart.  It’s a labor of love. 

It’s a feat.  Because the book is rich, lyrical, honest, and poignant.  The author faces his mortality head on because it is his reality.  And it really is all our reality, but for some it is more real than for others.

It is clear that while the author’s body has broken down, his mind has gotten sharper.  I can’t explain it, but the way the story is pieced together, it’s impossible to put it down.  It’s written with an honesty and a clarity that many people never develop. 

But the feeling I got from the book, my evaluation of it, isn’t coming from the fact that the author is fighting an incurable, degenerative disease.  It’s because the writing is that good.  It is one of the best books I have read in a long time. 

“It’s Not Yet Dark” will be available for purchase on August 1, 2017.  It can be purchased on Amazon. 

There is also a documentary of the same name, which you can learn more about by visiting: https://www.itsnotyetdark.com/.  I really hope that I get a chance to see the film.   

This review isn’t doing this book justice because I just can’t say enough about it, and my best advice is for you to go ahead and read it yourself.      

Do me a favor.  Do yourself a favor.  Even if you have only the time in one weekend, read this book.   

“But that was before.  This is after.  Never before had I felt that split, but now a fault line has opened between our past and our present, and there is no going back.  ” (p. 2).

* I received a free copy of this book from the publisher.  However, the review presented here is solely based on my personal opinion of the book. 

League of Mortals*

Today I’m honored to have my blogger friend Duncan Cross on Getting Closer To Myself.  Duncan is the author of “League of Mortals”, a semi-autobiographical novel about a main character who is diagnosed with Crohn’s Disease.

The book showcases Duncan’s unique brand of humor, and it also is a very raw and real portrayal of a high school aged character whose life is detoured by chronic illness. 

As of late, novels with chronically ill main characters are kind of becoming a thing, but those books are not written by people with chronic illnesses, so the experience that Duncan brings to the story is so powerful and important. 

Just be warned, there’s a lot of talk about shit, as in poop, and other bodily functions.  

Without further ado…

First off, can you tell my readers a little bit about yourself and your illness story?

DC: I grew up in Florida, and was a pretty normal kid, though maybe a little too much of a smart-ass. I was diagnosed with Crohn’s Disease in my senior year of high school – it came out of nowhere, and totally wrecked my college and career plans. Still, I spent several years trying to pretend I wasn’t sick, until about 2003, when I started a flare that didn’t end until I had surgery in 2006. That forced me to really grapple with illness, to quit pretending I could pass for normal. I found a lot of help online in various communities, then started my blog in 2008. Almost everything about my illness since 2008 has been documented on the blog, but technically I’ve been in remission since the 2006 surgery.

How did “League of Mortals” come about?

DC:  My freshman year of college was terrible; it was really bad, mostly because I was put on a mega-dose of prednisone. I started writing about it as a form of self-therapy, but I wanted to leave the illness part out. I wasn’t comfortable talking about my disease, so I had this character who glides through his freshman year, leaving a trail of destruction in his wake. And I realized none of it worked unless you understood that he was sick. I started writing League of Mortals as a character sketch, to explain why Wesley does what he does, and realized it was a better story than the college novel. I still plan to finish the college novel – it's titled F.U.

Interesting title.  Why did you decide to write a work of fiction rather than a more traditional memoir type book that a lot of chronic illness bloggers tend to write?

DC: A few reasons... first, bookstores are stuffed with memoirs by sick people, but there are hardly any novels about chronic illness. Memoir is a crowded market for sick authors, but fiction is wide open.

Second, I think there's a brutal honesty in fiction that just doesn’t happen in memoir. There’s stuff in LoM that I would never have been able to write as straight memoir – but it’s important stuff. Fiction gives me the cover to be incredibly raw and honest about my illness and my life. The paradox is that I think readers get a more realistic sense of illness from the book being fiction than I would be able to provide in memoir.

Third, the events in my life did not happen in a particularly meaningful order. Even though the book is semi-autobiographical, some of the stuff did not happen my senior year of high school – e.g. prednisone. By reorganizing those events, I could tell a much better, more important story. Most people’s lives do not have a narrative arc – mine doesn’t, as far as I can tell. But the need for narrative is vital to how and why we read. For some memoirists, that need pushes them to write inane things about their lives, so that it all makes sense in the end. Fiction lets me control the narrative – lets me reimagine and redefine what my disease means – without the urge for self-justification.

Wesley’s character really highlights what it’s like to be a young person with a chronic illness – and there aren’t that many of those characters out there.  We see him transform, both based on his own experiences, but also based on the experiences of those around him and their reactions to his chronic illness.  Some may say that his transformation was negative, but I think those of us with chronic illnesses understand that there are a lot of varied emotions that come with being diagnosed with an incurable disease.  How did you balance being true to the character, while simultaneously making him seem sympathetic, as well?

DC: One of my least favorite ideas is that sick people get rewarded at some point for being ill: “That which does not kill you”.... I didn’t know how the story was going to end when I sat down to write LoM, but I knew I was not going to reward Wesley for being sick. I think he just about breaks even: he’s not a better person by the end of story – not stronger, not happier, not smarter. Just a different person. And that is such an important idea for me.

As for sympathetic, that was indeed a challenge. In early drafts, I focused mostly on medical stuff, and it made for brutal reading. I realized I had to give a sense of Wesley’s personality before he got ill, so that you understand where he’s coming from when things get really bad. I found that writing about him as a whole person – talking about music and his grandparents and what he was reading – made him a lot easier to get along with. I know it seems like filler, but those bits are important to understanding Wesley.

The character of Mrs. Strunkel is just awful.  Truly.  There’s always got to be one in every bunch.  Was there someone in your life that made your own life miserable like that?  

DC: She is indeed based on a real person who made my life very difficult. But keep in mind that Mrs. Strunkel thinks she’s a good person. She believes the things she does are important and just and good. In a perverse way, illness maybe does make her a better person in the end.

I think you do a really good job of capturing how healthy people have difficulty understanding what it’s like to have a chronic illness.  The character of Wesley loses a lot of weight as a result of being sick, and every woman he encounters tells him how much they would love to be able to lose weight.  In writing this book, what did you want to get across to your readers about the experience of Crohn’s Disease, in particular, and chronic illness, in general?

DC: I wanted to be honest about illness. I wanted to create a character whose illness was not shorthand for some virtue or flaw in psyche – the way Beth in Little Women is sick because she’s a perfect little angel. I didn’t want the book to be just about Crohn’s – I wanted it to capture as broadly as I could the experience of chronic illness. I actually tried to write a version where the diagnosis was some made up disease, but then I had to make up symptoms and treatments and drug names. It got exhausting, so I went back to what I know, but the specific diagnosis – Crohn’s – is not the main thing driving the story.

I agree in that I, a person who has lupus and rheumatoid arthritis – definitely have had similar experiences when it comes to chronic illness that you talk about in the book.

Here is the million dollar question: How much of the book is fact and how much of it is fiction?

DC: For the same reasons I chose to write it as fiction, it gets really tricky for me to admit what parts are totally factual. But it’s all true to my experience of illness, if that makes sense.

Thanks for being here today Duncan!

You can purchase a copy of “League of Mortals” from Amazon and Smashwords.

Duncan has graciously afford to provide a coupon code for my readers.  You can get $2 off the book from Smashwords by using the code JD55B. The code is good through July 10, 2015.

And you can follow Duncan at http://duncancross.net/.

* In the effort of full disclosure, I received a free copy of this book courtesy of the author. I also recently got to meet up with Duncan and he treated me to dinner.  I However, my choice to have Duncan here was my choice, and had to do with my personal opinion of the book.  

Happy Holidays And Epic Giveaways

Hey, everyone!  I figured I would post one last time before I go off the grid for the holidays. 

I’m excited to share our holiday card this year, our first annual, for those who didn’t get one via snail mail. 

I’m also super excited to announce that many of the products/companies I highlighted in my holiday gift post came through with some great giveaways for my readers.  

Here’s what I’ve got:

1.       A signed, personalized copy of “So Young” by Daniel Malito

2.      A pillfold from Sara Gorman

3.      A Sabi Folio pill holder

4.      An E-certificate worth $35 from Road ID

So here’s how the giveaway is going to work: To enter, comment on this post, share which item you would like and why.  The contest is open until January 10, 2014 at 12 a.m.  Winners will be randomly selected, and will be announced in my first post of 2014.

Again, Happy Holidays, everyone.  Catch you all in 2014!

Interview With Author Suzie Edward May: “Arthritis, Pregnancy, and the Path to Parenthood”

I recently read “Arthritis, Pregnancy, and the Path to Parenthood” by Suzie Edward May.  Suzie is a mother of two from Australia who has rheumatoid arthritis.

I had been eyeing this book for a long time, but wasn’t sure I wanted to order it all the way from Australia.  However, it is really the only book of its kind out there, and I would say it is a must for any woman who has RA and is hoping to some day have children.

I talked a bit about my personal experience with this in the previous post, “Arthritis, Pregnancy, and the Path to Parenthood”.

But I’ve invited Suzie here today to tell you a little bit about herself and her book. 

I love the cover of your book.  You look so happy, despite the trials and tribulations that can come with getting and being pregnant (and a mother) while dealing with RA.

First off, can you tell my readers a little bit about yourself?

SEM:  I am a 38 year old mother, wife, author and lawyer.  I live in Perth, Western Australia and I have lived with chronic inflammatory RA for 12 years.  I am an active health consumer with ‘Arthritis and Osteoporosis Western Australia’ and ‘Arthritis Australia’.

Why did you decide to write a book specifically about pregnancy?

SEM:  When my husband and I decided to start a family I looked for guidance as to how to do it.  I knew I had to come off my medication but it was very frightening to contemplate.  When I found no information as to how to achieve this, I decided to write a book to fill this gap.  I knew there must be other women around the world who had been through this process before me, so I worked hard to find them, speak with them and share their stories (and my own) through this book.

How much did you know about RA and pregnancy prior to becoming pregnant?

SEM:  Being my first pregnancy, I only knew what I had read in ordinary pregnancy books.  I hadn’t read anything about arthritis and pregnancy as such, as there was no information available about it.  I had lived with RA for 5 years so I had some experience with it, but my real understanding and test of my body came during pregnancy.

Despite the issues that come with RA and pregnancy, did you always know you wanted to have children?

SEM:  Absolutely.  I was always going to be a mother.  I never contemplated not being a mother.  I was certainly never going to let RA (or anything else) stop me from becoming one. 

One of the biggest components of becoming pregnant with RA is getting off of meds.  Can you describe some of the challenges that come with this?

SEM:  The challenges are twofold.  They are physical and psychological.  While I expected the physical pain and fatigue (although perhaps not to the extent that I experienced it), the emotional turmoil was very unexpected and difficult to deal with.  After getting used to taking medication in order to function, I now had to trust my body and stop taking these medications, it was frightening. 

I totally get that.  It seems completely antithetical to go off of meds.  What are some of the other challenges that come with getting pregnant with RA?

SEM:  Some women fall pregnant easily while others take longer.  Some women find that the more active their disease, the harder it is to fall pregnant.  Some women need IVF treatment (even just to ensure they fall pregnant quickly rather than waiting months and months while off medication); while some women find it difficult to fall pregnant at all.  It is different for everyone.  There is little information about fertility and RA.  Women need to speak with their Rheumatologist about their particular situation.

What are some of the positive aspects that come with getting pregnant with arthritis?

SEM:  For me, I felt confident that my body could do something right for a change.  When we feel like our bodies fail us (with our pain and disability), it can be a wonderful feeling to see our body doing something correctly.

Trusting your body when you have RA can be a very difficult thing.  How important is, not just your rheumatologist, but your entire medical team, in getting and staying pregnant with arthritis?  And at what point in the process do you bring them in (i.e. how helpful was your rheumatologist in talking to you about pregnancy before you became pregnant?).

SEM: Your medical team is always crucial in the management of your RA.  During pregnancy, this is particularly so and you will likely be seeing more specialists such as an Obstetrician and/or a Gynecologist.  I think it is important that your Rheumatologist (and any other specialist you usually see) knows that you want to become pregnant so they can help you through this process.  They continue to play an important role during and post pregnancy, especially if you don’t go into remission and/or have a post-birth flare.

Some women go into remission during pregnancy.  Others flare badly.  Some women flare badly after giving birth.  What advice would you give to women to be prepared for these varying possibilities?

SEM:  Be prepared!  You may be lucky enough to go into remission, you may not – you may have a post-birth flare, you may not – you won’t know until you are there.  So, the best thing to do is put strategies into place so you (and your family) are supported during these potentially challenging times. 

How much time did you have in between pregnancies?  How long were you on meds before you had to go off of them again?

SEM:  After giving birth to our first child, it took 26 months to become pregnant with our second child.  This was due to a number of factors such as my choice to breastfeed (nurse); the time I took to detox off medications before attempting conception and the time it took to conceive the second time.  I only returned to medication for four months between pregnancies. 

Your book addresses pregnancy, but not infertility. Can you speak to this decision?

SEM:  I did not find enough evidence linking infertility and RA to warrant including it in the book.  It is a very interesting issue and I hope more research is developed in this area.

Some of my friends have started to have babies.  While I can’t specifically speak to their experiences, it seems easy.  What do you say to women with RA who want to have children, but know they will have a very different path than their healthy friends?

SEM:  The fact that we live with RA (or any other form of arthritis or chronic health issue) means that we are living a different path from our “healthy” friends already.  I also believe it makes us stronger as we overcome challenges everyday.  I don’t believe parenthood is easy for any mother or father – I think it is the hardest role in the world – even if you are “healthy”.  But it is also the most rewarding, incredible and worthwhile role you could do.  If you are fortunate enough to have a child, the love and joy you feel for your child outweighs even the worst arthritis pain.  I have no regrets and if I had my time over, I would do it again.  My children are my world and while everyday brings challenges, they are worth it.

Would you recommend that partners read this book? I think it would be helpful to give my boyfriend a window into what our future might look like, but I’m also a little worried that it will scare him.

SEM: I think it is imperative that partners, family members, your friends and even colleagues and health care professionals read this book.  The more you can help people close to you understand what you live with and what challenges you may be facing in the future, the better equipped others are to support you.  The fact that our partners are with us, despite our RA, means that they love us.  Preparing your partner for what lies ahead is so important.  The more you educate others, the less alone you will feel.

That’s really good advice.  What have you learned from your experiences?

SEM:  I have learnt that we are not alone.  That there are issues affecting women (and men) with arthritis that people are not talking about enough – like pregnancy and parenting.  I have learnt that women with RA are strong and that they can achieve anything they put their mind to.  I have learnt that information is power and that the more you understand, the less fear and isolation you feel. 

What do you hope readers will get from your book?

SEM:  Accurate, honest stories of women who have been through the process of having a family while managing chronic arthritis.  An honest outline of the potential challenges you may face from pre-conception through to when your baby is 12 months of age.  But most of all…hope, inspiration and a sense that you (and your RA) are understood and that you are not alone.

What’s next for you?

SEM:  I have a couple of other projects in the pipeline that will be complementary to ‘Arthritis, pregnancy and the path to parenthood’.  I look forward to telling you all about them soon. 

Thank you so much for your interest in and support for my book.  I wrote this book for you and your readers, so it is wonderful to connect with you all.  Feel free to email me with questions or just for a chat at suzie@suzieedwardmay.com.

Thanks so much for talking to me!

Thanks, Suzie for sharing your story!  And thanks for stopping by Getting Closer to Myself today.  And thank you for your e-mail to me when I ordered the book, before we talked about you doing an interview for my blog – and the personal note that you sent to me along with the book.

I purchased this book directly from the author, and you can, too!  Visit http://www.suzieedwardmay.com/.

Interview With Author Elizabeth Scarboro: “My Foreign Cities”*

 I recently read “My Foreign Cities” by Elizabeth Scarboro.  Elizabeth was the caregiver to her young husband who had cystic fibrosis.

To be honest, this book was difficult for me to read.  It is incredibly well-written.  However, I rarely read books from the perspective of caregivers.  Most of the illness memoirs that I read are written by patients. 

I think a lot of times, we wonder what our family and close friends are dealing with when it comes to our illnesses, and how they cope, both publicly and privately. 

This book is written from that unique perspective, which I feel is hugely impactful and important.

I’ve invited Elizabeth here today to tell you a little bit about herself and her book. 

First off, can you tell my readers a little bit about yourself?

ES: Sure, and thank you so much for having me here.  When I was seventeen, I fell in love with my close friend Stephen. I’d always thought I’d never settle down and get married, but I found myself wanting to do exactly that.  Stephen had cystic fibrosis (CF), and so we were rolling through our twenties while facing his mortality at the same time.  He passed away when he was thirty.  I have since remarried, and now have two children, who are five and eight.  My new family has gotten to know Stephen’s family, and we all spend time together, for which I’m grateful.

Why did you decide to write a book about your experiences as a caregiver?

ES: Well, it’s funny, first I should say that the whole time I was with Stephen I never thought of myself as a caregiver. The word just didn’t sit right with me. I felt that I was in love and married to someone who faced difficult circumstances, and whose circumstances affected me.  Looking back I can see the ways in which I took care of him, and offered support, but it was not a one-way street: he took care of me, too.

But you’re right, most books about illness are written from the patient perspective, and when Stephen and I were facing hard times, I longed to read something written by someone in my shoes.  I felt isolated, especially since we were young, and most of our friends were healthy.  Originally Stephen and I had planned to write a book together about living with CF. We were going to write alternating chapters, addressing topics from each of our points of view.  But we never had the time. 

A few years after he died, I found myself wanting to write the book myself.  I wanted to offer companionship to others who loved someone with a serious illness, and I also wanted to write about our life together - how it felt to live with a daily awareness of mortality, because I could feel myself slipping back into a more normal existence. 

I think that this is a perspective that we don’t hear from enough.  I think many of us that are chronically ill worry that the experiences our loved ones and caregivers have as a result of their caregiving is extremely difficult for them.  And maybe we shy away a bit from actually finding out.

How can chronically ill people best support the ones closest to them?

ES: Oh, that’s an excellent and generous question.  I would say, and this is difficult, to make room for your partner’s struggles with the illness.  The best thing someone ever said to me was to think of the illness as a third ‘person’ (element?) in the relationship – nobody’s fault, and something that can be hard on both people.  As the partner, you are always aware, of course, that the illness is much harder on the person who suffers from it, and by comparison, you’re fine.  You don’t want to make the person you love feel even worse by admitting that you’re also having a hard time.  But especially in a marriage, it’s great if you can talk about those things.  It helps your partner feel less invisible, and it helps you both feel more like you’re on the same side, and weathering life together, rather than each quietly going through your own difficulties.  

It’s also important to remember that your partner is there because he or she wants to be, and to trust him or her in that.  I didn’t want to marry just anyone – I wanted to marry Stephen, and I loved him dearly, and was very happy to be with him.  It can seem strange to hold these truths together – that you want the relationship badly, that you’d do anything to get to have it, and that its circumstances make life hard.  But those truths coexist, and in a way they coexist in every marriage, and in every family.  I haven’t met any couple or family who, sooner or later, hasn’t hit their rough spots.  But that doesn’t mean you necessarily want to run screaming.  For me, even when things were at their most difficult, I knew that I was with the person I wanted to be with, living out the life with him that I was able to have.

I had a friend with CF whose boyfriend proposed to her.  She worried about accepting because, she told me, “he has no idea what he’s getting into.” She wanted to save him from future pain.  I thought that was the wrong way to look at it.  None of us knows what we’re getting into when we get married, really.   And in a sense, he knew more than most – he’d already dealt with ‘in sickness and in health’, unlike other young couples who would inevitably face that when they got older.  I guess what I’m saying is that, as the person with the illness, it’s helpful if you don’t try to protect your loved ones from aspects of your illness when they are not asking you to.  The closer you can be to them, the more of you they get to know and love, if that makes sense.

That’s a great answer.  It’s funny, but I always say that illness is a third party waiting to get in on the action. ;)

What was it like to be so young and faced with so many choices and decisions that are usually dealt with by people much older?

ES: It was crazy – difficult and invigorating and overwhelming all at once.  It always seemed like Stephen had about ten years left to live, and we were trying to make our life decisions, knowing that.  In some ways it brought us very close together, and in others it made the difference between our circumstances painfully clear.  There was no one out there ahead of us to show us the way.  Stephen was lucky to have a doctor, his main doctor for years, who faced the big questions without flinching.  Sometimes the three of us would talk, and Dr. Stulbarg might say, you’ve probably got five years until the transplant.  What do you want to do with those years?  When life feels out of your control, it’s very empowering to think like that, to determine what you can and want to do with what you have.

I remember sometimes feeling relieved to be around my grandparents, and older people.  At a certain point, when Stephen’s health declined, all of our plans were “health considering.”  We’d invite people over for dinner and then have to cancel last-minute, or we’d be on a trip with my family and have to drive down from the mountains because the altitude was too much.   We were very close to our family and friends, but it was hard to explain our reality, and sometimes I felt isolated from them, living so differently.   My grandparents understood our situation very well, and they were a solace.

I know what you mean about relating better to older people, especially grandparents.  I have found that a lot over the course of my illness so far. 

What have you learned from your experiences?

ES: Well, living close to illness and losing a person you love are both really humbling experiences.  I remember fighting with Stephen about something hospital-related, and thinking, but we’re both trying so hard!  Sometimes it can feel like an accomplishment just to get up in the morning.  But I’ve also learned that what is difficult can be simultaneously great – that life can be hard and very rich and full at the same time. 

This will sound like a cliché, but I owe it to Stephen to say this – I appreciate being alive, and I appreciate my health.  The one thing that drove Stephen crazy was seeing people take their health for granted, and watching what he went through just to get to stay here on earth for as long as he could, I will always think of good health as a very lucky thing rather than something I expect to have.  The same goes for time with the people I love.  After losing someone I loved dearly, I don’t really assume everyone will stick around.  My second husband jokes that there are other ways to appreciate people besides imagining that they might die, and he’s probably right.  It’s not that I’m morbid or anxious, it’s more that I find myself stepping back, and imagining life without my husband, or my sister, or my child, and I realize how deeply I want that person to be here with me, and I can’t take them for granted in the way that I could have before.

I’ve also learned - and this will probably sound like a cliché, too – that for me it doesn’t pay off to hold back, that I’m happiest when I’ve thrown myself into life.  At some point when I was with Stephen, I realized how deep I was in.  I was scared, and I thought about holding back, keeping myself at a slight distance so I wouldn’t be as devastated in the end. (As if that would have been possible!)  After he died, I remember feeling so relieved that I’d gone ahead and thrown myself into the relationship.  I had no regrets, and I’d let myself have what I could have while it was here, and there was some comfort in that.

Lastly I’ve learned that there are many more people facing difficult things out there than you’ll ever know.  Because of my past, I’m often approached by people who are facing illness, addiction, depression, grief – things people don’t usually share in casual conversation.  My second husband’s grandmother, for instance, confided in me when her husband died.  She hadn’t told her own family how difficult it was for her because she didn’t want to upset her kids (who were in their sixties!).  I realized that you could pass her in the grocery store, and have no idea what she was going through.  That’s the way I feel a lot – I walk around thinking I have no idea what the people I’m saying hello to are going through.

What do you hope readers will get from your book?

ES: When I started my book, my hope was to broaden people’s views on what it means to live with a serious illness.  I wanted to challenge the assumptions people made about Stephen, and about me – that our life together was lacking.  I guess I had a chip on my shoulder.  Now I think about that question a little differently.

There are two comments so far that have made me feel like all the work I put into the book was worth it.  One was from a reader who said that the book made her appreciate her husband and family, and time.  That was what was most important to Stephen, and if I’ve conveyed that, I’ll feel like I’ve done my job.  The other comment was from a reader who has a chronic illness, who said that he and his wife had some of the same exact fights that Stephen and I had had.  I’d never known that anyone else had those fights.  It’s hard enough to talk about the difficulties in your marriage with friends, but it’s almost impossible when the difficulties relate to illness – you feel you’re betraying your partner, because of course none of it is their fault.  So if my book can make anyone – partner or patient – feel less isolated, I will be very happy.

What’s next for you?

ES: I’m hoping to use my book to do some outreach in public health and medical settings.  I’ve also thought about starting writing groups that are aimed at caregivers or people who are grieving.  A group like that would have been useful for me.  On the writing side, I’ve been working on essays and plan to begin a fiction project soon.  And my kids are out of school for the summer, so there will be some hiking and general running around outside for me in the next couple months.

Sounds great!  Thanks so much for talking to me!

ES: Thank you so much for inviting me.  I’ve loved getting the chance to be here.

Thanks, Elizabeth for sharing your story!  And thanks for stopping by Getting Closer to Myself today. 

*I received a free copy of this book from the publisher.  However, my choice to have Elizabeth as a guest blogger was my choice, and had to do with my personal opinion of the book.