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.