Help for Healing

Bitter & Sweet, living daily with grief


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Janet

My sister Janet is eight years older than me. I have some memories of her as a kid, but mostly there was a big enough age difference that we didn’t steal each other’s clothes or boyfriends so there wasn’t a lot of conflict.

She is the middle child, but for years we also called her the Perfect Child. As adults, I found out that she always hated that so I stopped saying it. I also call her Dad’s favorite daughter and I haven’t stopped saying that. I joke around about it, but it doesn’t seriously bother me because she is truly one of the kindest women I’ve ever known in my life.

I was just talking with a client yesterday who has a family member with cancer news. I remembered when we starting testing Tim and suspected it might be cancer. Janet lived near Rochester so she was an hour-and-twenty-minute drive away. I was on the phone with her when she said, “No matter what happens Darcy, you won’t be alone. We will be there every step of the way.” And she was.

Twice during Tim’s five months of illness, she took an unpaid leave of absence to come and help. I never forgot that because there were other relatives/friends that lived closer and were more close to Tim than she was, but she was the one that didn’t bat an eye. She just took the financial hit and came.

One memory that particularly stands out was when the decision was made for Tim to go to Hospice to try to get his sleep regulated. I called her to tell her and she made all that distance and got here before the transport car came. She and I took Tim around the property in a wheelchair to give him a chance to look at everything, reminisce, and ultimately say goodbye.

She has been here again, this time for Dad. She arrived the day before New Year’s Eve from Tennessee. And she is still here. She leaves Saturday which means she was here a full three weeks. Dad required 24 hour supervision until this week so she literally spent the whole time with him in his assisted living apartment.  I can’t even begin to express what a massive relief that was to me.  I know Dad is going to miss her terribly, as will I.

I enjoy her company immensely, but I was in a catch-22. She was here to take care of Dad, which was my chance to get a break. I wanted to visit with her, but I needed some distance from the situation at the same time. Thank goodness she completely understood that.

Even though she lives in Tennessee now, she still had a job where she had to take an unpaid leave of absence to be here. To take a three-week cut in pay when you live paycheck to paycheck is an incredible sacrifice. She makes it without blinking an eye, without a question. If I asked her to stay even longer she would.

Her husband supports her being here, even though I’m sure he misses her. Her daughter supports her being here, even though Janet misses her little grandson so much I’m sure her heart aches. So thank you to all of her family who let us borrow her capable hands and her ever-giving heart.

And how do I thank Janet? I couldn’t possibly. But deep down, I know she knows. She loves me too, and came to support to me. Mostly though, she did it for the deep love she has for our dad. He’s not an expressive man, but I know he appreciates her as much as I do.

IMG_20180109_101722452_HDRThank you dear Janet. You truly are perfect!


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Memorial Services

I attended a weekend of memorial services with my dad. They were for a very beautiful 45-year-old woman who died from ALS, a most fast-acting and vicious disease. Stacey was someone I knew my whole life, but mostly from a distance. She had a sister, Megan as well.

One of the services was held at the lake at a camp where she had dedicated a fair amount of her time, both as a camper, a counselor, and as an administrator. It was a beautiful venue for such a celebration of life. I listened to testimony after testimony as a very clear picture of her personality was presented. She was a life force. She was amazing. Her goal in life was apparent to anyone who knew her- make a positive change in the world, any chance, any way, any time you possibly can. She preached it and she lived it. She was adored and admired and most obviously successful in the impact she had on those around her.

The last intimate conversation I had with her was several years ago when Tim was still alive. She said I was always her girl-hero because I was single for so long and managed to push forward with my life. I was pretty surprised by that opinion as I know how much I’ve detested being single whenever I have found myself in that state. Stacey said I gave her hope. She had met the love of her life, a super-cute guy from Ireland. He seemed as special of a guy as she was a woman. They were planning an engagement in the near future when he was found dead while fishing. Some totally unexplainable, bizarre event. I know she was devastated. I don’t know if she ever even dated after that, but she didn’t ever marry. She handled her loss with such grace and strength. And she was brave enough to stay single. She was MY hero.

Then she gets hit with this hideous diagnosis. She has to quit work which was teaching in New York City to some of the most difficult population in this country. She moved to live with her sister. Megan worked full-time and had served with the Peace Corps in Africa. I went through the tedious process of applying once and got accepted. In the end though? Truth be told, I chickened out and never went. Megan is an amazing and brave woman as well.

For 18 months, as ALS took over her body, Megan cared for Stacey. Day after day. And I discovered at the service that they never stopped supporting research and hoping for a cure. Wow, 18 months. I took care of Tim for five months and it felt like a lifetime. I can’t even fathom it.

Sometimes I wonder what would be said about me at my funeral. While I listened at those services, I thought about how both of those astonishing women were and are everything I would have hoped to have been. I started out as a young adult aspiring to be a missionary. I wanted to change the world any way I could. I’m not saying I’ve been useless, but it’s amazing how far I have fallen short. Now most days, I just hope to survive the world another day.
What the heck happened?

Megan, I know your heart is broken. And I know your strength will keep you from showing it most of the time. Stacey was lucky to have you. The love the two of you had for each other is rare. I would always listen with envy when you talked about the trips and adventures you would go on together. The weekend was about Stacey, as it should have been. The world will miss her love and influence and beautiful smile. But it was about you as well, the silent caretaker.

Character is forged when unexpected, hard things happen to us. Again, I’m not saying I’ve done a horrible job, but the two of you put me to shame. You are both an inspiration to me. My thoughts and heart and love and every other thing go out to you.

Stacey's memorial service


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Sisterhood

One of the perks of writing a book, is getting to meet some amazing people. I guess I need a stronger word than “perk.” It’s one of the things that actually makes it worth it. I think at some point I have blogged about my new friend, Trish. She read my book and then sought me out. She is my age, was widowed not long after I was, and has six kids. She also is a multi-business owner.

She always calls me her hero and I just laugh. Other than writing a book, I don’t see much to call me a hero for. At least not for HER to call me a hero. I call her MY hero. In fact, I call her that in the next book that I wrote. I have four kids. But I met three of them when they were 13, 16, and 19. I didn’t raise them from birth. Now I have one adult living here, and one 12-year-old. She has SIX. Like I said, she is MY hero.

Because her husband was self-employed, I get about three times as much social security benefits for my one minor I am raising, than she gets for all six of her kids combined. And I worry about money?

We had lunch this week. We’ve been talking and texting about things that we feel like no one else understands sometimes. She recently had a person close to her lose a loved one. She was worried that she didn’t feel the compassion and sympathy she normally would. Boy, did I get that. I think we are just already tired out from death and dying, even though some time has passed. Living with the fallout from death and dying continues to be exhausting, probably even more than caretaking was.

She met a great guy. She was ready to give up on the dating scene, just like most people who are in the dating scene are. Then she met him on Match and he seems great. I listen to her talk and I’m amazed. He actually seems to really love her and WANTS to help out with the kids. He is ready to take on what it might mean to be involved with all six of them. He hangs out when her family comes to town, even though he doesn’t “have” to. I’m envious, but I am happy for her. She deserves it. She absolutely deserves it.

Even with that support in her life, she still struggles. It’s a reminder to me that meeting someone like that won’t take all the pain and stress away. It helps immensely, but life is still hard. And I’m sure they have lots of adjustments and changes down the road to get through.

When we hugged goodbye after lunch, she said something about how much she enjoys getting to spend time with me. I laughed. I sincerely laughed. I asked her if she was kidding because we had spent the majority of lunch with me down in the dumps, teary eyed (like I am several times a day) feeling hopeless and stuck. I can hardly stand my own company and she actually expects me to believe she ENJOYS me? I wasn’t trying to be dramatic. It was just a genuine reality check moment for me, like “Hey, I know you love me, but let’s be honest. I’m not exactly fun to hang out with.” I didn’t say that, but I think she knew what I meant.

About 15 minutes later, I got a text that said, “I just want you to know I do love being with you! I wish I could make it all better for you. You will be ok. I know it!” I texted back, “Back at ya, sista!”

She really is my hero.


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A Day in My Life…

On Monday, I noticed an odd spot on my breast. Looked like a bruise, but then not quite. I went to my friend’s house who is a breast cancer survivor and asked if I could show her. (I can’t imagine men being comfortable showing each other a concern- ha ha!) She thought it was strange but was more concerned whether there was a lump. We were both unhappy to discover there was a very distinct lump. She told me a few reasons why it probably wasn’t anything serious, but I definitely should call the doctor in the morning. The rest of the day it was in the back of my mind (of course), but I managed to keep it at bay knowing it was probably not serious.

Tuesday morning, I called the doctor first thing. They fit me in early afternoon. I had my usual full day ahead of me so the first couple of hours I just pushed along. Then I went in the hot tub to try to relax a bit before my clients started coming. I started to get that panicky feeling and my breathing was getting choppy. I talked to dear Summer, knowing she would give me a rational smack in the head and I would be fine. Instead, the flood gates opened. I was scared. Really, really scared. She offered to go to the appointment with me. In between sobs, I told her that wasn’t necessary and I knew she was as busy as I was. But of course she came and of course I needed her.

I had to pull it together to keep working until my appointment, but between clients I was bombarded with thoughts and fears. To be fair, they really weren’t irrational. I know better than most that a simple, small thing can alter your life forever. My first thought was Frankie. This just couldn’t possibly be anything because that 11-year-old kid couldn’t possibly be asked to have no parents at all. Even if I could be treated and beat it, that poor boy does not need to endure watching the process all over again. Treatments, vomiting, schedules being thrown out the window. Watching someone visibly change who is supposed to be your tower of strength. He just can’t be asked to do that again, right?

Then I started thinking about my life in the last couple of weeks. I have been re-evaluating my life very intently because I have been working too hard. I have been burning the candle at both ends. I have been exhausted at the end of every night and know I can’t keep it up. I have been trying to make changes, but have struggled with what changes to even make. And then I really panicked. Holy shit! What if the universe/God has been on my case about it because I need to make room for treatment? Is that what this has really been about? Summer and I were just talking this weekend about how with all the interactions we have with people, if we ever got cancer, we wouldn’t go to Roswell (our local cancer hospital). That would mean regular trips to PA or Ohio. Overwhelming thought. Breathing is getting tough again.

I take a shower before I go to the doctor. While I am in there, another related thought crosses my mind. I absolutely know what it takes to fight cancer. I know the stamina you need. I know that a positive attitude is mandatory for success. I know that I have to muster up the strength that I know I possess and I will have to figure out how to access it. And then I found myself sitting in the shower seat sobbing, just like the day I found Tim in there when his daughter came to surprise him for Father’s Day. Because I knew that I just couldn’t do it. I’m too depleted. I will end up dying because I’m not the woman I was before taking care of my terminal husband. Even though it has been three years, I’ve not recovered.

I know my friends will shore me up. I know it. But Christ, Frankie won’t even have a step-father who loves him after I’m gone. Tim’s kids had me and I don’t love them any less since he has been gone. I know that Tim had peace about that. I failed Frankie in that respect. Utterly failed.

Brigette was home with a sick child, but she kept in touch with texts. She told me she didn’t remember the last time she prayed as hard as she was praying for me.

We arrived at the doc’s. I love Dr. Grace. Tell her everything, trust her implicitly. She looks at my mark and looks puzzled. She hasn’t ever really seen anything like it before. (Why does that always happen to me? I’m always like a freak show for doctors!) BUT… she knows it definitely does NOT look like cancer. I love her because I never have to explain anything to her because she remembers every detail of my life. She thanks me for not waiting and says she is grateful she can trust that I won’t mess around with anything medically. And without being told, she knows it is because I can’t possibly take risks because Frankie needs me. She is glad I get that all on my own and she doesn’t have to pound it into my head. Even though I feel better after seeing her, she promises me by the end of business day I will have answers. She works her magic and I am able to leave her office and go directly to the radiology center.

Off we go. First the mammogram. You know the drill, ladies. First set of pictures and then you sit in the waiting room. As suspected, I get called back for more. Now they see something in the other breast they are also concerned about. Great. She has to smoosh them further for the second set. Then they ask you to hold your breath while they take the image. I try until I finally gasp because the pain is too much. She tells me ever so nicely that she hopes she doesn’t have to retake them because I yelled out.

I go back in the waiting room and tell Summer I can’t believe with all our modern medicine we haven’t figured out anything better than putting our delicate breasts into a vice grip. She laughs and tells me if men had boobs, there would have been an answer years ago. I laugh at that. (Yes, Gary, I admit that is a sexist comment, but cut me some slack!)

Next the sonogram. She tells me she thinks it is a cyst. Doesn’t know why or how it would get there, but possibly it was pinched somehow. Phew.

I tell my step-son Colin about my day. He just looks at me. I told him that I didn’t think our family could go through it again. I told him I didn’t think we would be able to pull off the great job we did with his dad this time. He just nodded his head.

Later, my doc’s office calls and say they agree it’s a cyst. They want me to put the hottest compresses I can stand on it, as many times a day as I can manage it. (Apparently they don’t know I am already burning the candle at both ends and don’t even make time to eat half the time!) If it doesn’t go away in a month, then I have to see a surgeon. Bottom line is, it may not be cancer, but it is still not right and not supposed to be there.

So I spent the night rejoicing. I spent the rest of the night being super grateful that I don’t have cancer.

Wrong.

I spent the night continuing to have a hard time breathing. Being the lucky woman I am, (no, that is NOT sarcasm) male and female friends called to check on me or just to say hello (because they didn’t know what was going on). And every time I said hello, I would burst into tears again. I wanted to be happy, but I felt like a wrung out dish rag.

Everyone got it. No one judged me. They all told me that my fear was perfectly logical, understand, reasonable, not irrational. My daughter Emily called me about 10 PM and we talked til after midnight. She told me that if I ever got diagnosed, she would move up here and help take care of me. She said she didn’t do that for her dad but she would do it this time. I read between the lines and thought she must have regrets about that with her dad. I made a mental note to talk to her in the near future because I don’t want her to be plagued with that.

I watched a movie recently. The girl looked at the guy and said something like, “You weren’t there when I needed you. In the end, that’s all relationships are. It’s being there for the big stuff.” I thought it was an excellent summation. I’m lucky enough to have people who ARE there. Summer left work to go with me because she got it. Anyone who happened to know I was worried about a lump would have done what they could to support me because they get it. If you lived through Tim’s cancer with us, or if you read the book afterward, you get it. If you love me, if you know how to feel compassion, you are there by my side.

Today is a new day. Now I am starting to feel that relief I thought I would feel last night. Today I am breathing easier and emotionally feel the gratefulness I understood intellectually yesterday. Again, thanks to my amazing support system. You know who you are. And for those of you who are reading and wondering why I didn’t tell you, don’t. It all happened fast so don’t be mad at me :).

I wonder what today will bring?


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Guest Blogging

So leave it to Brigette. With her expert researching, she found an excellent contact in California. She is a medical expert, involved heavily in writing, blogging, and connected everywhere regarding issues related to end of life. Frankly, she appears to be quite brilliant :).

Anyhow, I will be on her blog next week and we are looking for many more opportunities to work with her and her numerous programs. She suggested I post the same blog here. I know it is information you already have read several times, but I will include it anyway. I was terribly honored when she had this to say about my entry submission: “This is probably one of the most moving accounts I have ever read. Thank you so much for sharing your amazing story. Your husband is proud of you.” Her comments made me cry.

Stay tuned as Brigette will be posting the links to Dr. Monica Williams-Murphy’s sites and connections. (Her blog is called “ok to die” which is a great title!) Here is my entry:

The name of my book is “Bitter and Sweet, A Family’s Journey with Cancer.” Here is a brief summary. In April of 2010, my husband Tim began to have some strange sensations in his side. On May 7, we found ourselves facing stage IV gallbladder cancer rather than a simple gallbladder removal as planned. Five months and one week later, my husband died. Those five months were the most difficult and horrifying time of our lives. It was also an extremely beautiful time for us. We found ourselves using the phrase “bitter and sweet” so often during those five months, that it was an obvious title choice.

Our lives had been full of paradoxes. How do you fight for your life and yet accept mortality at the same time? How do you maintain optimism, which is necessary for health, and prepare for your death and get your affairs in order? How do you understand God’s love and compassion, and yet experience cancer and suffering?

It’s a sad story, but I promise you, our story is also filled with humor, tender moments and hope, alongside the ravages of a cruel disease. When life hands you lemons, you can pucker up and make a sour face, or you can make lemonade. I think we did both.

Tim and I had a tough marriage. We spent the entirety of our ten years together in counseling. We made progress, but happiness was always a struggle. After diagnosis, we actually worried that kind of stress could be the end of us. Tim was a “glass half empty” guy and I thought for sure he would be angry and buckle under his prognosis. Boy, was I wrong. What I witnessed instead, was the total transformation of a man, a woman, a marriage, a family, a community. While things were obviously horrific battling a vicious disease, we also experienced the most amazing bond and love that we had spent our lives hoping for.

For the first time, we read together, appreciated each other fully, and reprioritized what was important. We started walking our dog together. When Tim got too weak, we took the wheelchair. When I got pneumonia, I would push him halfway and then we would switch positions and he would push me back. I will never, ever forget those moments.

Even the most simple things had greater meaning. Tim would talk about enjoying a hot shower and feeling the sensations of the warm water on his body. He would walk around our yard and come in with tears in his eyes and talk about the beauty he was able to take in. For the first time, he went into work late on our son’s first day of school because he just didn’t want to miss it. New priorities, new appreciation.

When you stare mortality in the face, it is amazing how quickly things can change. The things that you spend your life worrying and fighting about are suddenly rendered ridiculously less important. The housework isn’t so important. Money isn’t the biggest stressor. And I had the joy of watching Tim rekindle and reconcile family and friendships that had been forgotten or stuffed away in a corner. Sometimes that meant confronting painful things. Tim was a peacemaker and avoided conflict. But I saw him stand up for me in ways that I had not seen in the decade we had been together. Why? Partly because he saw me grab a hold of fighting for his life, his comfort and well-being in a way that he had not seen either, but that he was clearly worthy of.

Why do I continue to respect and admire my husband three years after his death? Because in spite of his fear, he faced his ending and he did it remarkably well. He chose his cemetery plot and designed his headstone. He wrote birthday cards for his eight year old son until he turns 18. He wrote wedding cards to this three unmarried sons so he could share his love for them on their big days. Amazing.

So many others were changed as well. We learned to be receivers, to let people help us and the results were astounding. People brought 90% of our meals, cleaned our house, ran errands, entertained our son, put up a fence, helped with yardwork, and even did our shopping. The benefit was that we were able to concentrate on Tim’s appointments and sneak in those walks or spend time with our kids. The benefit to everyone else? The church learned how to rally around their people. The community rose to the occasion. Here is what people said: “Please don’t rob us. We WANT to help. We can’t do anything to stop what is happening to you. What we CAN do, is provide a meal.” It was actually truly and genuinely important to other people, to feel like they were contributing to our lives. That is powerful.

I want to share the last paragraph of Bitter and Sweet. It is actually what I wrote for the bulletin at Tim’s funeral.

“While cancer is a cruel and clever disease that wreaks havoc in your life, my husband and I were able to find and experience so many gifts, treasures and healings in our lives. Since his diagnosis, we have truly been transformed, as individuals and as loving, lifelong partners. Our spiritual lives blossomed and grew in ways I would not have thought possible. And so much of that happened because of the loving, compassionate, strong hands, arms, and feet of the people of God. No one would deny that we are truly the luckiest people on earth, even with the loss we suffer. Few others could boast the kind of dedication and support we have felt poured out upon us. ”

I will never tell you that the cancer path isn’t hard, difficult, gut wrenching. But I will always say, there is a gift in every challenge. Your life can be profoundly blessed and changed in spite of your difficulties. Facing mortality can have a positive, profound impact on your life, if you choose to let it.


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NEW GUEST!

I haven’t had a guest on here for awhile. I want you to meet my new friend, Melissa.

My name is Melissa Eichele, and although I am known for many “hats” I wear, the one I wear the proudest is “mommy”.
 
I grew up an average kid on Long Island, raised by my grandmother, attending private school my entire life. I was a good student, captain of the swim team, and student council president. I went to College with a scholarship, and graduated with a degree in nursing. After college, I married Andrew, who I met in high school. We bought the house I grew up in, fixed it up, and started our life together. I went to graduate school, got my masters degree in nursing, and Andrew worked as an electrician. We tried for 4 years to conceive and were finally blessed with our baby boy Tanner in November of 2007. In July of 2009, we found out we would be expecting a second baby the following April. In our eyes, our family was complete. We truly thought “life couldn’t be more perfect”.
 
Our world came crashing down in September of 2009 when Tanner was diagnosed with cancer. Until then, we thought of pediatric cancer as something we saw on TV, something that happens to “other people”. We learned first hand how pediatric cancer can change your life from “perfect” to a complete nightmare in the blink of an eye. I took leave from my job as an ICU nurse for the next year and a half to sit by Tanner’s side through every treatment and surgery. Andrew took long leaves of absence. When it comes to your child, nothing is more important – especially when you’re fighting for his life. The world kept turning though, and the bills kept coming. We depended on family and friends, fundraisers, and charities for support. The Lexiebean Foundation was one of our biggest supporters, and at the time of Tanner’s relapse, we were surprised with a gift from them, while we were in the ICU, that helped pay our mortgage that month. You can’t imagine how scary it is to sit by your child’s side, praying that he will live, and at the same time worrying about how to keep a roof over your heads so you will have somewhere to go “home” to. With a gift like that, all of a sudden, you can focus fully on your child – the burden of bills was just lifted.
 
I have fought the hardest fight of my life, and lost. Trying to keep my son Tanner alive, I would have given anything, including my own last breath. He was the light of my life, and I know in my heart I will never be the same. But Tanner still lives in my heart, and I hope to make a difference in the lives of families affected by pediatric cancer, in his name. In this spirit I have joined the Lexiebean Foundation so that I can help other families, so that their financial burdens can be lifted, so that they have someone to talk to who “gets what their going through” just as the Falabella’s did for us, and so that everyone will always know my angel Tanner. 
 
 
That is the link to her latest blog where she shows pictures of Tanner’s three birthays. It is worth your time and effort. Happy Reading!
 


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Inspiration

Last night, I had the privilege of speaking to a group of 300+ breast cancer survivors. I was shaking in my boots because the largest group I have ever done is 150. Most of the time there is only a handful of people. This was crazy!

Of course, like so many other things, I ended up being the one inspired. I had a vendor table with my book and people would stop to see what it was about. Normally, this is when people tell me their own stories- their illness, someone they love, etc.. In this setting, the chances were high that anyone you talked to probably had cancer at some point in their lives. That was a given. I met so many women with such amazing, joyful attitudes.

One woman in particular sticks out in my mind. She was probably in her seventies. She rattled off what kind of cancer she had, which I don’t even remember because it wasn’t what had impacted me. She told me the story of her doctor calling her to tell her she had cancer. She was kind of using a tone that was dismissive, like “Yeah, yeah, ok” kind of a thing. So her doc says to her “Do you understand what I am telling you? Do you understand that you have cancer?” She said she responded with “Yes, I heard you. I’m not the type to sit in the corner and cry. Now are you done? Because I’m about to go play golf.” She was one tough bird. And a huge smile on her face. SHE should have been the one to do the speaking!

After dinner, I looked at the program and noticed the speaker after me had the same first name as the woman sitting next to me. I asked her if she was the other speaker and indeed she was. Right before we were about to go up, she looks at me and says, “Did you say that evaluation form? Talk about pressure!” I looked and sure enough there was a full-page evaluation form for the event. Not something like “Did you like it?” on a scale of one to five. It was a scale, but it was very specific. “Did you like Darcy Thiel’s presentation Making Lemonade?” Yikes! We both vowed to tell the coordinator that neither one of us was interested in hearing the ratings.

I finished my twenty-minute speech and then the lady sitting next to me got up for her turn. She very graciously started by saying something like, “That’s a tough act to follow. Let’s give another hand to Darcy.” That was lovely of her. She then proceeded to tell her story with a shaky voice and clearly was struggling to hold back tears. This beautiful young lady told about hearing the dreaded words “You have cancer.” I listened to her story, thinking how brave and amazing she was. Then she shocked me by talking about the SECOND time she had cancer. Good grief. I was very moved by her story as was everyone else in the room I am sure. She was the hero, the true inspiration for the evening.

After it was all over, I was standing near the exit at my book table. I saw her talking with her husband. I decided to give her a book. She acted like I gave her a million dollars. That made me feel like a million dollars! We talked about how we felt bonded somehow by sharing our stories on the same evening. I told her she bears the heavier burden and she said she thought the caretaker bears the heavier burden. So we decided we would just mutually admire each other.

What an absolutely great career I have. How lucky am I?