The Case of the Chronic Incurable Friendship

Since starting this blog I have had a few people ask me what it felt like to hear the words, “You have cancer.” It’s hard for me to describe, so let me share with you a quote from David Fajenbaum that perfectly describes that moment for me. He writes, “I knew the language the doctors use, the careful truth-telling, the hedging, the open endedness. I’ve spoken that language before. Now that it was directed at me, it didn’t feel nearly as careful or open ended as I’d once assumed. Instead, the words felt like they were casting me out of the room, out of the hospital entirely. I’d been consigned to the plane of possibility. Anything was possible because no one knew. I was on my own.” – Hope Wears Sneakers

I still live on that plane of possibility.

Honestly, I’ve just begun to realize that my life is a chronic condition. By that I mean that up until recently I was still in crisis mode. 15 years. It’s been exhausting. Whether it was never hearing the word “cured” or not being able to ring the bell at the end of treatments, the constant testing or if it’s part of the drug trial – whatever the reason it’s been quite the realization process. So, now that I’m aware of this chronic condition, what do I do? Wouldn’t it be great if there was such a thing as a chronic incurable friendship to go along with my chronic incurable life? People who would stick around no matter what – that they understand that each scan, new detailed lab work, every specialist appointment feels like (and is) life or death? People who would understand my dark humor and my need to spend time alone, and yet they stay.

Guess what?

I already have a few of those!

BONUS: they already knew that I am chronic with a hint of crisis. (I wonder if that should be my personality type? Hmmmmm….)

These people have helped create a new and special type of magic that combats the pain, both physical and mental, of living with chronic health conditions. You’ve already been introduced to my Core Four. Let me introduce you to one of my chronic friends, Amy W.

Amy and I met in Colorado and became instant friends – the type of friend that makes you feel like you’ve known them forever. Her classroom was right across the hall from my office and we shared just about everything that was going on in our lives. Amy and I have so much in common: we are both stubborn, hate to be a burden to anyone, self-sufficient, creative and full of compassion for the underdog. We both love all things theater, especially the artistic choices in set design, staging and character development. We could see a play together 100 times before we would run out of things to talk about or discover.

Amy is the first chronic friend that joined my crazy life who was not a part of my life while I was battling cancer. We met during the “post-cancer but my body continues to fall apart” phase of life. She understood me. She stayed.

I cannot tell you how healing that is to my soul.

Amy understood from day one that my life meme is the one that says, “I hate to cancel. I know we made plans to get together tonight, but that was two hours ago. I was younger then and full of hope.” Trust me, I did a lot of cancelling on her. Yet she still stayed.

Since those early days in Colorado, Amy and I have gone through a lot of heartache together. We both lost our jobs when the school downsized. We have both lost a parent to cancer. We both moved away from our beloved state, and we did not move to the same state. Yet, she still stayed and even comes to visit me. She doesn’t stress or become fearful when she doesn’t hear from me, because she still “gets it” – we don’t need to be together to be friends, because ours is a chronic incurable friendship. No matter how long we are apart, or go without texting or calling (well, calling doesn’t usually work because she also knows how much I hate to talk on the phone), we can pick right back up and carry on as though no time has passed.

We also share another thing in common, and how I wish it were not so. My Amy W has cancer. Those parts of me that she understood, she now understands what caused them because she’s experiencing them now. The fear, the hope, the planning (oh, there is so much planning involved when you receive a cancer diagnosis), the life-focus adjustments, the being strong for those around you when you don’t feel strong, the inner strength that comes roaring out when it is needed, navigating tests and procedures during a pandemic while the world is in chaos… so many things I wish we didn’t share.

The joy and comfort of having friends that are chronic and incurable are that no matter what – no matter what, they won’t leave. No difference of opinion, no level of heartache, no misunderstanding ever changes the friendship. It’s solid. It’s messy. It’s Lucy and Ethel laugh out loud funny. It’s comforting each other when there are no words. It’s speaking truth in love. It’s no matter what – no matter what, they don’t leave.

It’s an investment.

Oh, how I wish we each could move towards this type of friendship with those around us. Not every friendship is the same, but our approach in how we see each other could be the same. To see the person, not the affiliation.. the person, not the social status.. the person, not the social media post.. the person, not the snapshot of one moment in their life.

So many hours of my week are spent dealing with the chronic and incurable effects from my cancer treatment. It’s hard. It’s scary. It’s frustrating. However, the actual living of my life is pretty wonderful. What makes the difference? The human connection. The raw, real, honest and uncancellable frienships.

I guess I could say that the pain and heartache brought on by the chronic incurable conditions of my life are exceeded by the joy, hope and love brought on by the chronic incurable friendships in my life. I lead a blessed life and am so very grateful.

Aim from the Heart

“Just because you feel lost doesn’t mean you weren’t led.”
Lydia Stewart

It’s the end of March. The season of anniversaries has begun. Life has been… overwhelming for me in 2019. I’m happy. I enjoy my life and the people that are in my life. I’m thankful. I’m tired. I’m lost. I’m right where I’m supposed to be.

A few years ago Matthew was in the debut of “Chrysopolae” – an original play by Lydia Stewart. The story follows the construction of the Golden Gate Bridge and the dramatic telling of how it became one of the world’s most popular destinations for suicide, and how each life lost greatly impacted the lives of those left behind. Tragic. Heartbreaking. So many thoughts and ideas in this play struck me right in the heart, and continue to do so to this day. One of my favorite quotes from this show is, “Just because you feel lost doesn’t mean you weren’t led.”

So many times in life I have felt lost, but looking back I can see how I was led. So, every day I choose to remember that though my current path may seem… off/uncertain/disappointing/painful, etc. that doesn’t mean I need an escape. The choosing part is important. Remembering that I have the power to choose is important.

My anniversaries are big this year: 15 years since diagnosis of APL and 30 years of marriage to my best friend. The life lessons keep on coming. And while I have struggled to write them down, I did want to share the story of my first wedding anniversary after my diagnosis. It has it all: mystery, romance, laughter, tears… (it’s one of my favorite stories from those day).

Let’s set the stage:

The year: 2004

The location: a mall near Lake Orion, Michigan

Our cast: 1 adult male (tenor, handsome, supportive, romantic, husband to female lead, father to 2 children)

1 adult female (bald, scared, tired, just released from the hospital, awaiting more chemo, wife to male lead, mother to 2 children)

1 child female (11 years old, happy the family unit is back together, struggling to understand what happens next)

1 male child (8 years old, firmly holding the hand of the mother and frequently looking to the female child for confirmation that everything is ok now)

2 adults (supporting roles, store clerks #1 and #2)

It was a sunny afternoon and the family unit is headed to a mall for their first family outing since the mother was released from the hospital. It is one week until their 15th wedding anniversary. The father is on a mission as he has planned this outing without anyone knowing. The mother is nervous about being around people. The children are happy and scared at the same time. The family walks into the mall and the husband takes the family to the Tempur-Pedic Store. Store Clerk #1 comes forward to greet the husband and meet the rest of the family.

Store Clerk #1: Hello, Dennis! This must be your wife and children that you were telling me about. It’s good to meet you all. Let me show you the model that Dennis is looking at.

The store clerk takes the wife to a new model of an adjustble bed and begins to tell her about all of the features. The wife listens even though she is confused. The children show their excitement about the adjustable bed. The store clerk then tells the husband and wife the cost of this particular model. The husband is not at all surprised. The wife is overwhlemed.

Wife: Dennis, that’s way too much. We do not need a new bed and, frankly, I will most likely pass away before you could even have this bed paid for…

Husband: Honey, we do need a new bed. You’ve already had 10 bone marrow biopsies and will have so many more. Your back needs the best rest that we can get. Let me take care of you. I love you.

The wife tears up, overwhelmed by the unending loving and support she receives from her husband. The children are excited and are happy that their mom will have something to help her feel better. The husband makes all of the necessary arrangements with Store Clerk #1 and then hugs his wife and makes the kids more excited as they discuss all of the cool things that this bed can do.

The family leaves the Tempur-Pedic Store. The husband now leads the family to a jewlery store. Once again the wife is confused but goes with the flow. Store Clerk #2 greets the husband and meets the wife and children. Store Clerk #2 takes the family over to a display case to look at rings. The wife is already shaking her head…

Wife: Dennis, we are not getting a new ring. I love my wedding band and all it stands for…

Husband: Aimee’, it’s our 15th anniversary and I want to buy you an anniversary ring. We are in this together.

As the wife continues to shake her head, Store Clerk #2 wisely pulls out a ring with 3 marquise-cut diamonds. The children are smiling and saying how beautiful it is…

Store Clerk #2: This anniversary ring is quite special. The three diamonds represent the past, the present and the future.

The husband asks the wife to try on the ring. The wife, crying and aware of what a sight she must be, puts on the ring and can only utter two words…

Wife: It’s perfect.

The husband makes all of the necessary arrangements. The family exits the mall and heads home. The wife, to this day, holds this memory as one full of great love and reflects back on it every morning that she puts on her anniversary ring and every evening when she goes to sleep.

For the wife, this memory not only lasts but is played out fresh every new day – every tomorrow holds a promise of love and support until it becomes yesterday and then the whole circle of life starts up again. For you see, life is full of the past, the present and the future, and each hold an important place in each life. We may not have the same memories, the same present, or the same hopes and dreams for the future; but, we can all share the same truth of unconditional love and support.

Authors Note: Please do not diminish the important supporting roles of Store Clerk #1 and #2. Their kindness and compassion helped weave together this very important memory. Life, like art, is ever-dependent upon the role of the supporting players. Cory, Mathew, Allen, Suzanne and Sarah P, you are stars in my eyes and I am incredibly grateful for your friendship and support.

Dennis, Victoria and Matthew – YOU each inspire me every day. There are no words to express just how big a part you have played in my journey… the days where you were the reasons that I didn’t want to give up… the days that you made horrible days become days filled with laughter… the quiet days, the normal days, the hard days are all perfect because you were in them. I treasure you. I look forward to every future day that I have because you are in them. Thank you for helping me, encouraging me and giving me the greatest gift of all, the gift of your love.

It’s a Wonderful Life, Part 1

Synopsis: George Bailey has spent his entire life giving up his big dreams for the good of his town, Bedford Falls. But, on Christmas Eve, he is broken and suicidal over the misplacing of $8000 and the machinations of the evil millionaire Mr. Potter. His guardian angel, Clarence, falls to Earth, literally, and shows him how his town, family, and friends would have turned out if he had never been born.

The whomping willow has been out in full force the past few months. Pain, both physical and emotional, have been felt daily – hourly, if I’m honest. The physical pain I can deal with. The emotional pain, well, that’s a bit tougher for me. I’ve experienced a hightened sense of loss of “what was” in my life.

Ironically, I’ve never been a “what if” person, as I truly believe that is a dangerous mindset. The “what if bus” never leads to a good place! If you would ask my Core 4 and closest friends they would tell you that one of my favorite phrases is, “It is what it is.” Survive and thrive, that’s the way to live. Mind over matter. Pick myself up by the bootstraps and soldier on.

Right?

I find that life is full of platitudes. The real, raw life is a bit harder to explain to those around me. I have a reputation, after all, and I have fallen prey to the whole duplicity of advocating a transparent life while desparately trying to maintain the illusion of strength.

Enter It’s a Wonderful Life by Frank Capra. Have you seen it? It’s a staple around the Holidays. I’ve seen the movie countless times and have cried, laughed and celebrated alongside George Bailey as the loveable Clarence tries his best to earn his wings and show George what is truly important in life. What’s more heartwarming than that? Great story. Great message full of hope. An easy 2 hour respite before forging back into the real world.

Wait.

Now enter Greenville Little Theatre and the director of their production of It’s a Wonderful Life. Suzanne gave me the honor of assisting with this production. My theatre teacher’s heart almost burst with happiness! My favorite part of theatre is watching the actors and production team learn to trust one other and then witnessing the beautiful one-of-a-kind story that emerges. There’s nothing like it!

So, I get my script and head into rehearsals. I’ve no lines to memorize or costumes to prepare. I have the best job – simply helping with the script as needed. Piece of cake. As I sat in rehearsal, night after night, listening to the words of the actors and the direction of Suzanne, something truly miraculous happened. My heart began to feel and heal.

Night after night I witnessed the struggles of George Bailey and the path he went on that led him to believe he was worth more dead than alive. He had a loving wife, wonderful children, and a town full of people who loved and respected him. But at the root of all of it was a man who had to give up all of his dreams. The life he envisioned never happened. He was the champion of everyone but himself.

Enter Craig and Latteshia – our very own George and Clariece. These two are Theatre gold. Magic. And, in my case, guardian angels. They bring these characters to life in a brilliant blend of the old-fashioned and contemporary. That’s a rare thing! (For the record, these two are extraordinary humans, off stage as well as on. My life is better for knowing them!) So before I ramble on let me use their words, the words of Frank Capra, to tell you just how much they have helped my heart and soul begin to breathe and heal…

G: …and what did I get for it? A bad cold and a bum ear for the rest of my life. I still can’t hear out of this ear C: That ear hasn’t prevented you from living a good life… helping others.

G: We can get through this thing all right. But we’ve got to stick together. We have to have faith in each other.

C: Are you happy? G: Yes. C: Are you still thinking about what you were thinking about 45 minutes ago? G: Yes.

C: No one is worth more dead than alive, George.

C: You’ve been given a great gift, George.

C: What was. Was. What is. Is. Strange, isn’t it? Each man’s life touches so many other lives, and when he isn’t around he leaves an awful hole, doesn’t he?

C: It’s a shame, really. You had the greatest gift of all conferred on you – the gift of life – of being part of this world and taking part in it.

So much more I could say here, but will leave that for my next post.

Tonight is opening night for this production of It’s a Wonderful Life. It will be remarkable because this cast, crew and production team are remarkable. My heart is full and so very thankful!

It truly is a Wonderful Life!

I’m Ready to Blog, I think

Three days. I was given three days to make memories with my husband, children, parents and siblings. Three days to get my affairs in order.

One day. One moment in a doctor’s office changed my entire world and the lives of those in my world.

Moments frozen in time.

Moments that blur.

Moments that haunt.

Moments that bless.

I’m ready to blog, I think. It’s been a difficult road for me to get here. Today I will just start with this quote from Martin Luther:

“This life therefore is not righteousness, but growth in righteousness, not health but healing, not being but becoming, not rest but exercise. We are not yet what we shall be, but we are growing toward it, the process is not yet finished, but is going on, this is not the end, but it is the road.”