By all accounts, my 2013 has been pretty awful. As I approach Thanksgiving, I begin to reflect on those things for which I am grateful.
I realize that looking back I can find little pockets of joy that were preserved in the worst months of the first half of the year. More recently, those pockets are beginning to look more and more like full pairs of trousers. There may be some ratty cuffs and torn knees, but my joy seems to be growing as time passes.
I knew this would happen, I just wasn’t sure how quickly. Everyone says, “Give yourself a year.” Many say, “Some days the grief is crippling.”
I’m happy to report that I don’t feel like I need a year, nor do I feel that I’ve been crippled by guilt.
Now, it took a lot of courage to write that. Before you go judging me, I will assure you that I miss Francis terribly. There is a hole in my heart that will never be filled.
However, what I didn’t realize until recently is that my life began to move on as soon as the hospice nurse and chaplain walked into the room to join me next to Francis’s body.
Time stops for no one, not even a grieving widow. It may march a little slower at times, but it also may speed right by without so much as a wave.
Everyone grieves differently. Everyone has a very different experience. But my grief is my own, and no one should judge someone else’s grief experience by a yard stick that is their own.
My counselor often reminds me that grief has no timeline. She’s correct. Some may never move on from the death of a loved one. Others may not even seem fazed by it.
One thing I am thankful for is that I am blessed with two amazing little kiddos. They give me reason to get up in the morning – albeit earlier than I would like – and plenty of opportunity for gut-busting laughter (when they aren’t too busy making me their referee). Our children are terribly ticklish. I need only hear that tickle-induced laughter to feel better about my day and the days to come.
One other experience for which I am so grateful happened just a little over a month ago.
When our family returned from Houston, Francis and I had many conversations about what my life may look like after he was gone. He was insistent that I find a way to get back in touch with who I am.
Over the course of nearly three years, I had redefined my life. I am a woman who found great pleasure in my identity as a successful and hard-working political insider. I worked long hours and had some incredible opportunities that came to an abrupt end with Couper’s birth. Much of that change was a choice, though some was unexpected. It has all been worth it.
I went back to work after maternity leave. But just two months later, I found myself in an SUV packed to the gills, with a nine-month-old who hated his carseat and two completely freaked-out cats. We were headed to our new home in Tallahassee to start a new chapter in our family’s life. I found out I was pregnant seven months later, and six months after that Francis’s health began to deteriorate rapidly.
I write all this not to complain but to explain why there was an urgency to Francis’s request. He was making sure that I was taken care of after he was gone, and that I was in a position to take care of that which we loved most – Couper and Riley. I had been a caregiver for so long that I needed a break. He may have recognized this more clearly than I did, but deep down I knew I needed to refresh after such a long, difficult period of caregiving.
His request was specific – go take a trip, without the kids. Take some girlfriends along, and get back in touch with the part of myself that had to be tucked away due to life’s circumstances.
So I did. I went to Florence with three friends. Not the Florence in SC, AL, AZ, WV, KY, WI, or MI (sorry if I left any others out). I went to Florence, Italy.
I was there for about 40 hours in 2004 and fell in love with what little I had seen. I knew I had missed a LOT, and have always wanted to go back. I thought this was as good a time as any, so I took the plunge.
There was no agenda or scheduled itinerary (other than an AMAZING tour of Amedei Tuscany Chocolate Factory – seriously, go). It was the best way to do Florence. We wandered the city (miles of walking each day). We embraced the Italian way of eating long and delicious meals. I didn’t do any speed walking and didn’t eat a single meal interrupted by urgent runs to the “potty” or small hands reaching onto my plate for a bite or twenty.
It was truly what I needed. It was also even better than I could have imagined it would be.
While Francis wasn’t there, he was the reason that I was. He was present in all that we did and perpetually on my mind.
The best part wasn’t finding amazing art, food, fresh air, or chocolate. The best part was that I found myself there. I found small pieces of what makes me who I am in places all over Florence and through building closer friendships with some amazing women in my life.
What I found was the me I am afraid I would have lost completely if I waited much longer to fulfill Francis’s wish. And thankfully, that is the me who flew home.
I left the worst parts of my widowhood – bitterness, anger, frustration, short temper, and impatience – stranded in transit like a much less pleasant Viktor Navorski in the movie The Terminal.
I hope that me doesn’t ever find it’s way home. This me is a much better and more content woman and mother.
The trip also inspired me to help other women find the same renewal that I did. The seed Francis planted, over six months ago now with his request that I make a fresh new start, has grown into a full grown dream.
Francis and I merely discussed an inspiring idea. I shared this crazy idea with a fellow young cancer widow. From there, it’s developed a life of its own and inspired other fantastic people to join us in our efforts.
Now, thanks to the dedication and inspiration of that amazing group of people who have become both my cheerleaders and teammates we’ll see that dream become a reality. I’ve found my new purpose – one that is far more worthwhile and rewarding than my career path to date.
I will gladly pour my blood, sweat, and tears into this dream to see other young cancer widows refresh, renew, and restart their lives after the death of their spouse. It’s thoroughly worth it.
Stay tuned for a more details in the coming weeks. In the meantime, if you have questions/comments or want to discuss this endeavor in more detail, feel free to contact me through the contact link.
I will close by saying that I am happy with where I am. I have many people to thank for that, including you, but I am more thankful for the value that falling in love with Francis has added to my life. Without him, I wouldn’t have Couper and Riley or all the other amazing adventures we shared. And now, thanks to him I have had an amazing new adventure of my own that has allowed me to begin to feel growing excitement for the adventures I will have in the future.
Doctors don’t know everything. Just ask one – gently. I imagine your doctor will tell you in one way or another that doctors are not all-knowing. If he or she claims to be the exception to the rule, find a new doctor – immediately.
The idea for this post has been bouncing around in my head for a long time. I was inspired to put it into writing this past week during a great lunch with my friend, Paige. We talked about the shortcomings of the medical field and the hope each patient has that his or her doctor is looking out for the patient’s best interest.
We discussed how our culture teaches us to respect authority. In addition, we put a high value on education. The more education one gets, the smarter one must be. Doctors find themselves somewhere near the top of the educated heap. The rest of us fall somewhere below that level, especially in the field of medical education. No, Google and WebMD aren’t good substitutes for a medical degree.
When these two facts are combined, many well meaning people take a back seat in their own healthcare out of respect for the doctor. After all, they know more than we do.
Unfortunately, our healthcare system has just the opposite approach. The system expects us to be in the driver’s seat of our healthcare decisions, not our doctor. The doctor is more like the navigation system, it’s up to the driver to accelerate, brake, or turn and any mistakes that navigation system makes don’t affect it, they affect the driver.
Francis and I learned this lesson the hard way, but the important part is that we did learn it. We learned that the most important thing you can do in a consultation with your doctor is to be a skeptic. Don’t be afraid of skepticism because, frankly, it could save your life.
I’m not advocating for patients to be know-it-alls. No one likes a know-it-all.
What I am saying is that we all need to get back in touch with our inner three-year-old when it comes to our doctors. We need to ask, “Why?” Over, and over, and over, and over, and…you get the point.
I’m raising a three-year-old. I hear this question a lot during my day. I suspect it should be as commonplace in a doctor’s office as it is in my home. I also imagine that, in the course of a day, patients don’t ask that of their doctors as often as my son asks me that question in the car to and from preschool.
Everything your doctor recommends should be met with a three-year-old’s sense of curiosity and eagerness to learn. After all, it’s your body and your doctor doesn’t have to live with it.
While stretching yourself to be a skeptic, don’t be afraid to ask for a second opinion after a diagnosis. As a matter of fact, that should be your first instinct. Even if that doctor giving the second opinion arrives at the same diagnosis and course of treatment, consider it a learning experience. Each time you talk about your medical situation you learn something new. Embrace that knowledge and don’t be afraid to be a skeptic with them either. The doctor giving the second opinion is probably expecting it.
Then, ask for a third if the first two doctors don’t agree. And this is important, tell your doctor what you’re doing. Don’t go behind their back and sneak off to another doctor. You’re not cheating on them. Your first doctor could have valuable input about who to see. Even better, they could be willing to call and discuss the case with the other doctor.
If your doctor gets angry or defensive, that’s a really bad sign. Doctors should be taking the lead from you. The best doctors gave Francis referrals to other doctors for second opinions and then called and discussed the case with them.
Two heads are better than one, and three are probably even better. There is a reason that places like Mayo Clinic and MD Anderson operate with a team approach to diagnosis and treatment. Much can be gained by sharing ideas, debating diagnoses, and challenging treatment options.
We should question everything we are told until we have a complete understanding. We should be asking “why” until our curiosity is quenched.
Take a notebook to every appointment with all of the questions you want answered, no matter how mundane the question seems to you. Don’t be embarrassed to ask anything. Don’t let them rush you out of the office before you’ve asked every question in your notebook.
After waiting over three hours past our appointment time on our first visit to MD Anderson, we were told by another patient that we should relax and stop watching the clock. The appointment time there is merely a suggestion. The doctors there take the time needed to answer every question a patient has. Be thankful if your doctor does the same with you, and try to be patient in the waiting room. I admit that I still struggle with being patient, but I do expect them to make time for me to be a skeptic.
I’ll close by driving this point home, be sure to take your inner three-year-old to the doctor’s office with you. Then go ahead and set him or her free to unleash a barrage of whys. A good doctor will appreciate it.
I’ve recently taken a hiatus from writing here. It wasn’t intentional, and there were many times that I wished I had the inspiration to write when I didn’t.
I imagine that this second phase of grieving (post-numbness) is to blame for much of the reason I haven’t written.
During this hiatus, I’ve come to learn another truth about grieving – grief isn’t linear. In the two and a half months since Francis passed away, I honestly can say that I have experienced each of the five stages of grief.
But, experiencing each of them does not mean my grief journey is even close to being complete. I have jumped from stage to stage, circled back, tried a few over, then moved on, only to find myself right back where I started.
Just a week ago I was sitting on the couch, after the children had gone to bed for the night, wondering if my life was what it seemed. Was Francis really gone? Has this new normal truly become my normal? Was I really back to denial again?
My thoughts tumbled around in my head until I found myself grappling with the concept of loss. I have told many, many people, “I recently lost my husband.” Lost? Really?
I began to get angry. I didn’t lose my husband. I haven’t misplaced him. He’s not missing. He isn’t coming home. My children won’t really know their father.
My husband died. He is dead.
This looks so stark (it sounds that way too), and remains painful. Perhaps I wasn’t able to say those words – died and dead – shortly after Francis passed away because it was just too painful on top of all the other things I was feeling at the time. But now, I need to begin to deal with that painful reality even when I can’t say it out loud.
I need to recognize that sometimes it will be hard for me to face exactly what happened in this grief process, and I’ll need to resort to the safe territory of “loss.” I can candy coat my existence just the same way I can candy coat the language. That’s ok, but I can’t allow myself to get too comfortable there.
By continuing to think of this as a loss, I feel as though I’m minimizing the situation and failing to realize the permanence of death and the void that has been left in my life because Francis is now gone.
Only if I willingly admit my painful reality will I be able to face it and move forward on my own without being crippled by the pain of Francis’s illness and death. After all, I have no choice but to take up the responsibilities of leading my family forward from this horrible valley.
My children and I will be better off if I am willing to face those things that are painful and work through them. It is hard work, and I’m not saying that everyone is ready to chuck the word “loss” from their grief process, but it’s the work that I have to do right now. Work I must face as willingly as possible in the days, weeks, and months ahead.
I know we’ll be alright. I’ve learned a lot about myself over the last 16 months, and I am confident that I can and will fight for what is most important in my world. This helps me know that I will emerge from this year and this intense pain.
I may emerge with many a battle scar, but one day I will look at those scars as beautiful reminders of the love that filled my life. Love that dreamed and hoped for the future. Love that created two amazing little children. A legacy of love that will live on in me and our children.
I had every intention to write weekly. I promise I won’t stop writing, but I may take a break here or there while I wait for something to inspire me or for my thoughts to come together into a coherent post.
Again, I thank you for continuing to read these posts and for your continued support and prayers.
For those of you interested in getting a better understanding of the depths of grief, I will do my best to describe the state of my mind over the last few weeks. I’d also encourage everyone to read A Grief Observed by C.S. Lewis. I’ll warn that it isn’t light reading, and within it he plumbs not only the depths of grief, but the depths of his own faith. C.S. Lewis writes the following in this book:
I thought I could describe a state; make a map of sorrow. Sorrow, however, turns out to be not a state but a process. It needs not a map but a history…There is something new to be chronicled every day. Grief is like a long valley, a winding valley where any bend may reveal a totally new landscape. As I’ve already noted, not every bend does. Sometimes the surprise is the opposite one; you are presented with exactly the same sort of country you thought you had left behind miles ago. That is when you wonder whether the valley isn’t a circular trench.
If I’m honest, I had MANY misconceptions about grief. I may still have some. To me it feels as much like I got off one terrifying roller coaster called Cancer just to be forced onto another unexpected and very different one called Grief.
I have missed Francis more deeply today than I have for a couple days. There’s no rhyme or reason as to why I feel that way, I just do. I also have no idea what I will feel when I wake up tomorrow morning. Will it be another day like today or will it be like the last two? This pain of loss isn’t a straight line, it’s more like a zigzag across the page of my days and weeks.
I also had anticipated that, coming from a family of criers, I would cry a lot daily. I expected that I would be an emotional basket-case who wouldn’t be able to get out of bed every morning for a number of days, weeks, or (Heaven forbid) months.
What I wasn’t expecting has been just the opposite. Getting out of bed isn’t a problem most days. I just seem to move slower than usual, and have to work hard to motivate myself to throw back the covers and move.
It’s what I can only assume C.S. Lewis refers to as the “laziness of grief.” He even went so far as to say, “I loathe the slightest effort.” There are some mornings, though, that I do loathe getting out of bed. I do so because alone with my grief in bed is terribly depressing, and seeing Couper’s and Riley’s little faces makes me feel closer to Francis than I do alone in bed.
This morning also was the first time I’ve cried since the funeral service. It’s as if I had cried out all the tears I had in me on that morning two weeks ago. I was all dried up. Even today didn’t seem to be as much crying as I would have expected after the drought. It was no more than I’d cry during the Publix Mother’s Day commercial.
My experience of grief has been typical from the literature I’ve read. I probably should have read about it before I was in the midst of it if I was hoping to be better prepared.
C.S. Lewis explains his experience with grief this way, “At other times it feels like being mildly drunk, or concussed. There is a sort of invisible blanket between the world and me. I find it hard to take in what anyone says. Or perhaps, hard to want to take it in. It is so uninteresting.”
I can identify with his sentiment completely. It’s as if the energy I must exert to stay alert enough to carry on normal everyday conversation is so taxing to my body that the easier thing to do is to allow the veil of fog to descend and just nod and smile. For the first time in my life, I feel as if I have difficulty processing simple conversation.
I find that I actually have to stop someone saying something important and ask them to start over so that I can really focus. My mom is probably tired of telling me things twice before I actually comprehend her question about things like Couper’s or Riley’s lunch or nap. It seems so easy a thing to answer, but it feels so difficult for my grief-stricken brain to process.
Everyone says, “Take it easy. Relax. Give yourself a break.” This is great advice. It’s also frustrating because it is such difficult advice to follow.
For the last 14 months, I was what Francis referred to as the CEO of the family. I knew or learned the answers to all of the questions about the kids, our routine, Francis, his medical needs, etc. I made sure we didn’t miss any instructions, medications, or appointments. I was a cheerleader, instructor, nurse, and advocate in addition to being a wife and mother.
I was a professional woman who found great joy in my job before we moved to Tallahassee. I then transitioned to being a stay-at-home-mom to Couper first and then caregiver to Francis before welcoming Riley to our family. It wasn’t my first choice, but it was what was right for our family and me at the time.
I miss working. It is no secret, and Francis and I discussed it with each other a lot. If things had been different, I would have gone back to work well before I was pregnant with Riley and Francis was diagnosed with cancer.
Because it wasn’t the right decision for our family, I didn’t go back to work. Instead, I poured my skills into caring for our children and Francis, and managing all things Gibbs. I turned that role into my job for more than a year. Now it’s as if I’ve been let go from that job.
I feel like I shouldn’t be so foggy. I kept things together at work and at home. I feel like I should be able to pull it together now and function like I would normally, grief notwithstanding. I get frustrated and irritated with myself that I can’t do so.
But like C.S. Lewis, I’m feeling mildly drunk or concussed on a regular basis and there’s nothing I can do to change that. And, just when I think I’m through that particular part of the journey, I walk right back into the fog.
I’m sure that the deep loss I feel today is not the last time I will feel this way. I know I will feel the fog of grief for many more days, weeks, months, and possibly years. It’s yet another stop on this roller coaster ride of grief. It may be different than I expected, but it’s all part of the ride.
Several people have asked me about Francis’s obituary. I’ve included it here for those who are interested, and did not see it in the paper or elsewhere online. My apologies for not sending this out before now.
Francis Boll Gibbs, 40, of Tallahassee, FL, passed away at his home on May 17, 2013.
He was born, 26 December 1972, at Jacksonville, FL, to Frances May Wentz and George Williams Gibbs, III.
He was reared at Fernandina Beach, FL, and graduated from Fernandina Beach High School in 1991. He earned both his B.S. and his J.D. degrees at the University of Florida, Gainesville, FL, and was admitted to The Florida Bar in 1999.
Francis’ career included practicing law at Fernandina Beach, FL, serving as Legislative Counsel for Congressman Ander Crenshaw and as Chief of Staff for Congressman Connie Mack, IV, at Washington, DC. It culminated with his service as Chief of Staff for the Florida Department of Transportation at Tallahassee, FL.
Francis was a seasoned traveler from his childhood. He was an avid golfer and tennis player from his youth. He enjoyed flying and earned his private pilot’s license.
Francis was a member of National Society Sons of the American Revolution, through his mother. He took pride that several of his paternal ancestors were Florida residents before statehood.
Francis is survived by his widow, LeAnne Renee (Holdman) Gibbs, his son, Couper Marshall Gibbs, and his daughter, Riley Ingraham Gibbs, Tallahassee, FL; his mother, Frances Wentz Taber, Tallahassee, FL; his father, George Williams Gibbs, III, and his stepmother, Ann Darden Gibbs, Jacksonville, FL; his sisters, Elizabeth Winslow (Sean) McAuliffe, Tallahassee, FL, Catherine Gibbs Juan, Ann Gibbs Giampetro, and Elizabeth Stockton Gibbs and his brother Robert Kingsley (Melinda) Gibbs, all of Jacksonville, FL; and, three nieces and three nephews.
He was predeceased by his brother, George Williams Gibbs, IV, St. Augustine, FL, and his stepfather, Robert Weiss Taber, Tallahassee, FL.
Francis will be interred, with private graveside services, at Oak Lawn Cemetery, Jacksonville, FL, on May 23, 2013. A celebration of his life will follow, from 2:00 p.m. to 4:00 p.m., at The Florida Yacht Club, Jacksonville, FL. All who would like to gather and share memories of Francis are cordially invited to attend the celebration.
In lieu of flowers, please make contributions to the Francis B. Gibbs Memorial Fund.
Sometimes you get a glimpse of a semicolon coming, a few lines farther on, and it is like climbing a steep path through the woods and seeing a wooden bench just at a bend in the road ahead, a place where you can expect to sit for a moment, catching your breath. ~Lewis Thomas, physician, educator. Dictionary.com Columbia World of Quotations. Columbia University Press, 1996.
I hate semicolons. Don’t know how to properly use them. You won’t see many, if any, here in this blog.
I feel as though I’ve just experienced a semicolon in my life. I hate them there too.
We started this blog as a way to be frank and honest about what has been going on in our lives after Francis’s cancer diagnosis. I didn’t realize just how fitting the name of this blog would be to my life.
I have said good-bye to and buried my best friend and love of my life. I now begin to figure out where to go after this hated punctuation mark.
If I’m honest, I’m struggling to catch my breath and see the start of the path ahead.
The chaplain from Big Bend Hospice came for a visit a few weeks ago. Francis was able to join us briefly before heading to bed and leaving us to chat further. The chaplain asked me what inspired my honesty. I told him that I have nothing pretty in my life behind which to hide. I also told him I was worried about losing that honesty in the midst of my grief.
This blog has been a way for me to share what’s happening to us. It’s also been an avenue for me to steal a few moments and process my own thoughts. I hope to be inspired to continue to do this. I also hope that through the blog I can hold on desperately to the honesty that was helpful to me and to others.
I’ve spoken to people who have been grateful for the words I’ve written, and I’d love to be able to continue to be a help to those who read this. As I grapple with processing my own loss, I plan to use the blog to write about what my life “post-semicolon” is like. It will be my own, and without a doubt unique in the path along which it takes me.
To kick it off, I can only reflect briefly on what the first week of grief has been like.
Once Francis passed away and in the days that followed, the house was a flurry of activity. The drugs, medical equipment, and removal of his body all had to be addressed.
I had gone to the funeral home a few weeks earlier to make preliminary arrangements, so those decisions were already completed. There were still hundreds of decisions, if not thousands of decisions, to be made.
There were emails, phone calls, texts, Facebook posts, and visitors that had to be faced. There was a trip to Jacksonville and a service and celebration that had to be planned.
In all of this activity, I didn’t have time to face the fact that Francis was really gone. I went to bed exhausted and my mind was racing the moment I awoke with all the items I needed to check off my to do list for the day. The next day was just a repeat of the previous.
Then, the day of the funeral arrived and I couldn’t get motivated to get out of bed. I felt like throwing up all the way to the cemetery, and felt crushed by my grief at the service with Francis’s coffin sitting before me – a painful reminder that our lives had gone so terribly off track. I was exhausted by the time the public celebration of Francis’s life was set to begin that afternoon.
Somehow, I was buoyed by the hugs and well-wishes at the celebration of Francis’s life. That continued into the evening, spent with family and friends.
Since that time, I’ve struggled to really understand this new stage of grieving for a lost spouse. I move from a sense of denial that Francis is gone to an intense awareness of my aloneness. I often feel that I should be a crying, broken mess because that’s how I have pictured grief.
Perhaps though, my perception of grieving is a bit off. More often I feel as if I’m just lost. I wander through my day without a real clear direction or motivation to do much of anything.
I’m sure the tears will come, perhaps often. I’m sure there will be tear-free days as well. There will also be days filled with laughter with Couper an Riley. All of these things are okay. I just need to understand that the grief I feel today is all part of the process.
After all, the rest of the path follows this semicolon, and I don’t know what the rest of the journey holds.
Mindelynn and I (Sarah) were reflecting on the day, and since we know that many of you were not able to make it to Florida, we asked LeAnne if we could share a little with you.
It seemed ironic to gather under the Spanish moss on a warm, sunny Florida morning for the purpose of bidding farewell to our good friend Francis. The natural beauty of the day almost seemed to mock the grief that was palpable among the family and friends present at Oaklawn Cemetery. But the day was so much more than a day of tears–it was a day pulsating with life, with hope, and even with joy. Not the type of joy you experience when life is good and circumstances are easy, but a deep and abiding joy that comes with knowing how much a person was loved and admired by those who knew him.
And Francis was–and is–very deeply loved and admired.
He is admired by high school friends who shared amusing anecdotes from the “early years” at the life celebration held in his honor at the Florida Yacht Club. Some of their memories are captured in this great video. He is highly esteemed by his professional colleagues who celebrated his deep commitment to public service, his integrity in pursuing excellence, and his desire to bring out the best in them. This was evident in the tribute given about him on the floor of the U.S. House of Representatives recently.
And in honoring Francis, his friends and colleagues were also honoring his family, who–even in the midst of their own grief–comforted and served their guests with such grace and kindness that we could not help but feel overwhelmed. To lose a husband, a dad, a son, a brother, an uncle and still summon the strength to show hospitality and compassion to the rest of us is a reflection of the kind of people who are genuine and good. The kind of person Francis was.
One of Francis’ greatest gifts was his ability to befriend practically any one and to find ways to connect with people. So many people testified about his knack for making you feel as if you had known him forever, for being a “fast friend” who could be counted on to make you laugh, play a practical joke on you, talk about what is really important (whether it be Gator football, constitutional rights, etc.), and be there for you when you needed him. His loyalty, his service, his genuine love of people made him great.
We know that people all over the world have been reading this blog and regardless of the extent to which you know Francis and LeAnne, you undoubtedly are a “fast friend” of theirs. Throughout the day, LeAnne was showing us texts, emails, and Facebook messages that she has received from many of you. Each of them obviously means a lot to her, even if she isn’t able to respond to each and every one, and they will be important for the entire family for years to come. So if you have not yet shared your memories of Francis, please do so by emailing them to firstname.lastname@example.org.
In leaving Jacksonville, Mindelynn and I will continue honoring Francis by aspiring to be genuine and good friends to those in our lives. We can think of no greater way that you can honor Francis, LeAnne, and their family than by sharing your lives with others. For Francis, this meant sharing some of his life’s great enjoyments: golf, Gators, and good food.
Whatever is precious to you, don’t hold back. Think of Francis, and share abundantly.
There’s no doubt our lives are really ugly right now. This life isn’t what we intended to live. The last year, apart from Riley’s birth, has been a flood of awful.
Ironically, under all this yuck runs a strong current of truly beautiful moments, experiences, and lessons. One of these beautiful lessons has been about living in the moment.
On April 11, we met with an admissions specialist for Big Bend Hospice. This was a big step for us because it felt like giving up. I assure you that this was an equally difficult and simple decision to make.
Big Bend Hospice has been tremendous at managing Francis’s pain, and wonderful about addressing the needs of the whole family. Their staff is easy to work with and incredibly comforting to Francis and to me. At the same time, we also realize that Francis isn’t getting any better now. We are trying to be intentional about living the best life we can under these circumstances.
Prior to Francis’s (our family’s) admission to hospice, we had reached the limits of Francis’s primary care physician’s expertise in pain management. This isn’t a criticism, it’s just a fact. His primary care doctor was amazing at tracking down the right information and unique delivery methods since a traditional medication delivery method is unworkable with the drainage opening in Francis’s stomach. Most pill form medications and many liquid forms require an extended period of time in your system to work appropriately, and with Francis what goes in immediately comes out.
We also knew that the only option we had for emergency care was the emergency room at Tallahassee Memorial Hospital. We both feared a trip to TMH with every fiber of our beings.
The solution to both of these concerns was enrolling in hospice, and we haven’t regretted it since.
Our priority was getting Francis’s pain addressed. I felt like Francis was slipping away because of the ever-present, intense, and at moments agonizing pain. I felt I was losing him because his only relief and escape was found in bed and in sleep. For much of the day we were separated from each other in different rooms of the same house, and when we were in the same room he was so often asleep that I was essentially alone.
Thanks to the experienced hospice medical team, Francis’s pain patch (Fentanyl if you’re wondering) was nearly doubled in strength. He had also been taking a liquid morphine by mouth that was doubled in dosage for any breakthrough pain – pain that breaks through the constant relief provided by the Fentanyl patch. We’re now using a morphine delivered by syringe into his PICC line for this type of pain.
Within a day or two of these initial changes, Francis was awake more and able to move about the house and even help with housework. As an aside, it’s amazing how the mundane everyday tasks like washing dishes and doing laundry are the first things that he does when he feels like being up. I suppose that’s because it makes him feel productive and, more importantly, normal.
I was ecstatic to have him back, but I was also struggling.
You see, I had gotten a glimpse of what I believe is the worst part of watching Francis go through the progression of his cancer. I had witnessed a pain so intense to him that it made the strongest man I know break down in tears. I had heard him begging me to make the pain stop. I had seen his clinched teeth, balled fists, and writhing body.
Every moment that he seemed to be more normal was a moment I was struggling to enjoy because I was afraid that the normal moment was fleeting. I feared that I’d soon be whisked back to that horrible place of his agony.
Thanks to the ugliness of the experience with uncontrolled pain, I’ve learned a beautiful lesson – one I hope I never take for granted.
For the first time, I truly understand what it means to live in the moment. It means that when Francis has a good moment I can’t let my fear rob me of the immediate moment of joy. Living in the moment has nothing to do with skydiving, whitewater rafting, or rock climbing – all the white-knuckled activities I once mistakenly thought allowed people to live in the moment.
Living in the moment isn’t about SEEKing anything special. It’s about SEEing the special in anything.
It’s about keeping my mind open to seeing the beauty in the yuck. I’m not perfect at doing this and I’m really not even that good at it, but I finally get it. Now that I get it I can do my best to enjoy the here and now for what it is, and keep that fear of what may be lurking in the next moment from stealing the joy of this one.
I know it goes without saying that this cancer journey is tough. We’ve moved from hoping tomorrow is a normal day to hoping tomorrow is a good day. There are highs and lows, victories and struggles.
What I find to be my ever present companion in this post-Houston reality is anger. I know it’s one of those stages of grief. I know it’s a very normal thing to feel. It just isn’t normal to me.
I’ve told close friends and some family members, including Francis, that I’m worried about losing my constant wrestling match with my inner mean girl. It makes me short with Francis and our children. I get impatient and feel put out by dealing with what I judge to be trivial. I become irritable by having to deal with uninformed or uncaring members of our medical team.
This experience has shown us the terrible and tragic loss of who we are as individuals and as a couple. The cancer is slowing killing parts of us and our relationship that we already mourn. It is also magnifying all those flaws that get to stay hidden by a life without the pressure and pain of a terminal disease.
My anger is clearly something I need to work on to be the woman, wife, and mother I hope to be. I may do a good job of keeping it in check most of the time, but not all the time.
My failure was painfully obvious to me last week when I got an email from a gentleman named Cameron Von St. James. He writes for the Mesothelioma Cancer Alliance blog. Back when we were in Houston preparing for Francis’s surgery, he asked if I would be willing to publish a guest post from him on our blog. I told him I would take a look, but we were in the midst of a stressful and frightening time with the big surgery approaching.
Cameron’s wife is a mesothelioma survivor. She had a radical surgery and extensive recovery, during which Cameron was a caregiver for his wife and their infant daughter. There are many similarities to our story. We just had different outcomes.
When Cameron contacted me last week, he was following up on the draft blog post that I told him I would look over after we got past the surgery. His follow up email was timely as he was asking me to consider posting during Asbestos Awareness Week.
The day his email arrived we were once again challenged by Francis’s g-tube. That challenge would lead to an unscheduled trip to the surgeon, and ultimately the temporary removal of the g-tube. However unexpected or stressful the events of the day were, it was no excuse for my response.
Cameron was in the wrong place at the wrong time – electronically speaking. I used the anonymity of the Internet to give him a piece of my mind without consideration for his circumstances or his feelings. I’ve regretted that email response every day since last Wednesday.
I never wanted to do something like this. I don’t ever want to diminish the circumstances of others who have individual stories to tell that are just as important to them as ours are to us. Sadly, last week my mean girl won.
I’m a work in progress. Just like I hope tomorrow is a good day, I hope it is also a nice one where I can keep my mean girl in line. Like everything else we’re facing, I just have to take this battle with myself a day at a time.