Commitment vs. Devotion

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I was a child when my uncle Jerry died. I remember him through that lens… they are all fond memories. He was the jokester in our family, always ready with a harmless prank. And they were harmless, that was part of the appeal. You could trust him. He didn’t go too far.

He was a successful businessman and well loved in the community. He died of a massive heart attack at age 44. His funeral is one of the first I ever went to. Watching my grandmother and aunt (his wife) deal with his loss was my first real lesson in grief. There was no crazy wailing, although I’m sure  they wanted to rage out. My aunt was fairly stoic. Not cold, just stunned. My grandmother cried, and I remember a cousin telling me that she heard our grandmother say, “I just want you to open up those big blue eyes and say, ‘Mama’ “ as she stood over his coffin.

If there was a family member who didn’t cherish him, I was unaware of it. He was my mother’s brother, and I guess in some families my aunt might have drifted away, but not in ours. She was a fixture at my grandmother’s house for decades – until my grandmother died.

When I got a little older, my aunt would often include me and my cousins in trips to her beach house. (She was not the only generous family member who did things like this, but this is a story for her.) I learned how to fold a fitted sheet on one of those trips. I ate cauliflower for the first time. I had a sundae with both chocolate AND caramel on it. The best kind of memories were made.

At some point, years after my uncle had died, I asked my aunt why she wasn’t dating. She was so fun and such a vital person. She told me that my uncle was the only one for her, and then said, “Do you remember his laugh?” She had such a great smile on her face when she said that, and I kind of knew then that what they had couldn’t be replaced. She might find a substitute, but she was content with her memories of him.

As it turns out, she never married again. I think she has been happy. At least she always seems that way to me. Her two daughters gave her lots of grandchildren, and she has always remained as active as her circumstances would allow.

I thought of her this morning. Of her relationship and the example she set with how she has lived her life. And it came to me that she was in a devoted relationship with my uncle. So many settle for “committed”, when we should really wait for devotion.

What’s the difference? Well, the dictionary says that committed means “to pledge (oneself) to a position on an issue or question; express (one’s intention, feeling, etc.)”.

By contrast, devoted means, “zealous or ardent in attachment, loyalty, or affection.” (Don’t confuse this with obsession… that’s a whole other story.)

But to me, devotion is when your unconscious thought leads you to care for someone. It’s the way a good parent feels about their child. I am truly blessed to be in a devoted romantic relationship, and people ask about it all the time. I’m not sure what they see, but they can tell it’s different. I struggle to put into words how it feels because it always sounds arrogant, and it is not a boastful thing. However, so many people settle for committed, that I wanted to try and put it to words for you.

• Love is preferring one person’s laugh to everyone else in the world.
• Love is fun. It’s like seeing a blockbuster summer film that no one else has seen yet. It’s so amazing and awesome that you want everyone else to experience it, too.
• Love is taking care of their needs before your own – not because you are being nice, but because they are the first thing on your mind.
• Love is 100% reciprocal. (I used to think that one person always loved more than another, but I don’t believe that anymore.)

• Love is not Ross and Rachel from “Friends”. If one partner is acting like Ross, there is no way that relationship will work long term without the other person being truly miserable.
• Love is not work. I’m probably going to irritate a lot of people with that statement, but I owe it to the young people I know to be honest about this. When you are with the right person, it really isn’t work. I know it sounds corny, but you really want the other person to be happy so much that you find the compromises pretty easily and quickly.
• Love does not control you. It won’t tell you who to choose as friends or how to spend your time. (“Honey-do” lists not withstanding.)
• Love builds you up. I can list a million reasons why I love Richard, but the most shocking thing about our relationship is that he can also list a million reasons about me. We both tell each other those things all the time. I joke that I have to harass him a little just so his ego won’t be too big, but I adore him and he knows it.
• Love isn’t jealous. Not just of another person, but of anything. We don’t worry about each other’s loyalty. We both have healthy relationships with friends of the opposite sex. Neither of us are worried about those relationships because we are devoted to each other.

There are lots of other things that love is or it isn’t. If you have a doubt in your mind, then that probably isn’t the real thing. I know that is harsh. I’m sorry for that. I  know a lot of people in committed relationships who have built happy lives for themselves, but it isn’t the same as being devoted. If you still have that choice in front of you, my wish for you is that you hold out for devoted.

People You Need To Meet #43: Karin Forbes

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What do I wish I knew before my husband was diagnosed with brain cancer? I’ll tell you what I’m glad I didn’t know, because these things are too horrible to know in advance, and knowing these things wouldn’t have helped in this horrific journey…

I certainly wouldn’t have wanted to know how quickly he would  lose his ability to talk, to move, and to eat or drink.

I wouldn’t have wanted to know that he may not have been able to see or hear.

I wouldn’t have wanted to know that he would be told no hope, that there was nothing anyone could do.

I wouldn’t have wanted to know he would be suffering seizures, or about the many, many hospital visits.

I wouldn’t have wanted to know that I would have to make life decisions for him that doctors didn’t trust he could make.

I wouldn’t have wanted to know that that my love who didn’t take so much as an aspirin, would be taking long lists of ever changing  medications.

I wouldn’t have wanted to know how this strong man, who took such good care of himself,  would bloat, and have reactions from medications.

I wouldn’t have wanted to know all the nursing skills I would have to perform with on the spot training.

I wouldn’t have wanted to know how my heart would be ripped apart watching the man I loved suffer and wither.

I wouldn’t have wanted to know that I would see his beautiful eyes fill with so much sadness as he knew he was dying.

I wouldn’t have wanted to know that his life would be over long before his death.

I sure wouldn’t have wanted to know I would lose my husband, my children’s father, my best friend, my confidant, my everything, my world, five months from diagnosis.

I wouldn’t have wanted to know we would never hear, see, or feel anything about him,  ever again.

I wouldn’t have wanted to know the enduring pain to my very core.

I wouldn’t have wanted to know that this man who worked hard every day of his life, would never see one day of his retirement, or one of our retirement plans come to be.

I wouldn’t have wanted to know that our family life as we knew it, would be soon be over.

I wouldn’t have wanted to know my children’s pain from the loss of their dad.

I wouldn’t have wanted to know that some would  add to our pain with words or acts or lack of either.

I wouldn’t have wanted to know the greed some would have after the death of my beloved.

I wouldn’t have wanted to know how some would disappear after his death.

I wouldn’t have wanted to know that my future entailed widow fog and being unable to concentrate.

I  wouldn’t have wanted to know that I would lack desires and no longer love life.

I wouldn’t have wanted to know that I would have post traumatic stress.

I wouldn’t have wanted to know that my health would suffer, and I’d be badly hurt in an accident, or that accidents are common among the grieving.

I wouldn’t have wanted to know the long duration of grief,  and depression I would endure.

I wouldn’t have wanted to know because I needed hope to fight for him. If I had known these things, I would have been too distraught  to function. If this horrific  journey had been given to me in black and white print, I still could not have known the depths of this nightmare. I had to believe in a miracle; I had to have hope.

How I wish that I and the others who suffer had never heard of brain cancer because there were no such thing.

There is one thing I wish I knew…
The one thing I wish I knew was that I didn’t have to be so alone with this. There are online groups of people who share this grief, some are now fighting this monster. They give each other encouragement, love, and knowledge that I so needed in this terrible time.

I now belong to a group of women caregivers who are all on,  or have been on this same terrible road brain cancer takes us down. It’s heartbreaking because I know what they are going through.
I also know that unlike me, they aren’t alone because we band together for each other. We are special Warriors who all wish we had never been in this horrific battle.

Did I learn anything on this horrific journey?
I already knew the depths of our love, and that we would die for each other. I knew of his strength and his heart. We had found out long ago that material things just don’t matter. How blessed we were to have each other and such a deep love! We already cherished every day together.
We didn’t need illness to bring that realization.

I learned that GBM is horrific beyond words, not at all rare, and a thief of the very worst kind.

52 People You Need To Meet: #24 Beni Hood Fries

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I am always intimidated by having to express into written word how I feel. I often feel that my words are inadequate; however, I was deeply honored when asked to share David’s and my story and to contribute to the poignant, powerful and touching blog “52 People You Should Meet”. The question posed to us was,” What I wish I had known?” This is obviously a very thought provoking question and not easy to answer.

David and I were married at the age of 21. I can honestly say that we did not know much at that time in our lives; however, being young, dumb and in love, we were sure that we could conquer the world. We did not exactly conquer the world, but we did build a good life. Over our 27 year marriage, we raised three children, adopted a few pets, learned many lessons (sometimes the hard way), made multiple moves, made many friends, shed a few tears and had many, many good laughs. Although, our life was not perfect, it was more than good, and we were most definitely happy. I knew that we were blessed. In the spring of 2007, our world literally crumbled around us. I do not think that anything could have prepared our family for the road that lay ahead of us.

In early April of 2007, David started to experience an odd warming or tingling sensation in the right corner of his mouth and the pads of his thumb and forefinger of his right hand. They were infrequent in the beginning but over time increased. The first time he told me about it, I actually laughed at him. I wish I had known that something so innocuous and seemingly benign were actually focal seizures. Those sensations were the first known signs of David’s brain tumor. It took until June before we knew what we were dealing with.  I can say with confidence that knowing about the brain tumor earlier would not have changed David’s outcome; however, the complications from surgery may have been less had the tumor been smaller when it was removed.

When David was first diagnosed with the brain tumor, I thought the worst of the worst had happened. I was wrong. In November of 2007, a virus settled in David’s spine and left him paralyzed. Although unusual, this was probably caused by his cancer treatment. He spent the next three months in three different hospitals. I watched horrified as my husband’s dignity was stripped from him. I spent countless nights sleeping in hospital chairs and learning how to care for a paralyzed patient. I was able to bring David home in February of 2008 and did my best to care for him. It was a privilege and honor to be David’s caregiver, but it was the hardest thing I have ever done in my life. I watched helplessly as he lost hope and became weaker each and every day until he died on July 19, 2008. It was gut-wrenching. I have said multiple times that had I known that he was going to spend his last days and months paralyzed and miserable, we would not have done treatment after his surgery. Instead, we would have just enjoyed what little time we had left together. With that said, I am not sure that it is possible to enjoy time with a loved one while waiting for them to die.

So many times, I have asked why? Why did a good man have to get sick and die? The answer has to be, why not? I drove myself crazy trying to understand how a young, vibrant, active and healthy man, could get so sick with brain cancer. Did he eat something? Was he exposed to something?   The truth is we will probably never know those answers. Life is not always fair, and really bad things do happen to really good people. I have also asked more times than I can count, did we do everything we could to save him? And yes, we did. We sought the best treatment from one of the best brain cancer centers in the country. David had Glioblastoma Multiforme which is the deadliest form of brain cancer there is. There was no cure for it then, and sadly, there is still no cure for it.

“What I wish I had known?” After thinking long and hard on that question, the answer is nothing. Life is not meant to have a crystal ball.   I personally think that knowing ahead of time about the wonderful surprises we will experience during our lives, will only dim their joy. And I think knowing ahead of time about the horrible things life will hold for us, will only paralyze us and prevent us from living fully and experiencing all the joy we can. As cheesy as it sounds, life is meant to be lived wholly and completely, and that cannot happen if we know what life will hold for us.

After David had died, it was almost impossible for me to wrap my head around the fact that the world kept going virtually unaltered, and my life was in pieces around me.   The pain was so intense that it literally took my breath away. The visions of that thirteen-month nightmare lived with the kids and I for months and even years. In fact, for a time, I was afraid that I had lost the previous 26 years because all I could see was the nightmare of the last 13 months of David’s life. Thankfully, over time, the good memories did return. I can say that, for the most part (we still have some bad days), the kids and I are doing well now. It has not been an easy road, but we have learned to experience and treasure life’s joys again. We have also learned not to feel guilty about it.

I always knew that David and I were blessed (and I still am) with an amazing family and wonderful friends. I will never be able to pay forward all of the love and kindness that was shown to us during David’s illness and the years following his death. My kids and I were shattered and shut out much of the world around us. Fortunately for us, our family and friends showed a lot of patience and did not give up on us. They were waiting when we were ready to join the world again.

We miss David each and every day, and it is not necessarily worse during holidays or special occasions. Although days like today, Father’s Day, still sting a lot. David was an amazing dad and loved his children tremendously. I have no doubt that David looks down on his adult children with nothing but pride. I see a piece of their wonderful dad in each of them and that brings me tremendous comfort. This is the sixth Father’s Day our children have had to whisper “Happy Father’s Day” to their dad and hope he hears. I know he hears…

With David Always in my Heart,

Beni

Editor’s Note: This post is about David Fries, Beni’s husband. It is not the same David that is mentioned in normal blog posts. David Pearson is my son’s name. Sorry for any confusion. – Amanda

Saying goodbye

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This blog series we’re doing, 52 People You need to meet, was designed to introduce you to people living through the extraordinary circumstances that brain cancer introduces to life. Today, however, I want to introduce you to someone that you will never meet. You won’t meet her because she passed away this morning, and outside of my parents, was the largest single influence on my life.

Her name was Pauline Jones Elmore, and she was my maternal grandmother. “Miss Polly” to those who knew her about town, she was at once classy and supremely humble. Generous to a fault, she gave more of herself than anyone I’ve ever known – and I know some generous folks. She didn’t want an announcement in the paper, but she didn’t mention social media, so I’m going to write my own tribute to her here, knowing that any words will fail miserably in comparison to the woman.

When I was little, too young to remember, her first husband died. They had six wonderful kids, and my grandfather is remembered warmly by the family. When I was still small, she remarried the only man I remember as a grandfather, and he made such an impression that I named my daughter after him. My grandmother have us the gift of these wonderful men in our lives. Through her parental guidance, she also gave us the gifts of a close family with aunts, uncles, and cousins who are people I am proud to call my family.

Her open door – to family or strangers- taught me a lot about how to treat people in this world. Too often I worry that my house isn’t clean enough (hers was always spotless) or that i don’t have anything to offer (she always had food at the ready – and a candy bar or two if you knew where to look). I’m sure she worked hard to make her home welcoming, but it was mostly welcoming because of her. Over the years, various family members lived with her as get navigated a rough patch of life, and she was far more gracious about it than I think I would have been.

She loved music, and frequently surprised me with her choices. She wore colorful clothes in her prime, always with the perfect matching accessories. She liked to travel, but I think she likes being home more.

At her house, you could count on family dropping by, more food than any group of people should eat, and one or more spoiled dogs. When I was a kid, I remember her going to McDonald’s to get the dog a cheeseburger, and then almost as an aside, asking if I wanted one too.

I also remember one day, in the parking lot of that same McDonald’s, when she parked the car after going through the drive-thru for our food. I asked her if something was wrong, and she pointed to an old man walking down the street. He had on a long brown coat, and he looked pretty dirty. She said, “I’ve seen that man before, and I don’t think he has anywhere to stay. It’s gonna get cold tonight, and I’m gonna go give him some money so he can get a hotel room.” She took every bit of cash out of her wallet to give to him. That’s who my grandmother was in a nutshell.

She outlived two husbands, two of her children, and a few of her grandchildren. She was a pilar of strength showing that life goes on even after loss. She had faced death many times, and I know that she was ready for her own. That makes it slightly easier, but I don’t like the idea of a world without her.

Everything I am, I owe to her. (Yes, my parents did a great job, but without her, my mom wouldn’t even exist.) Even if I live as long as she did, I will never do half as much good for this world.

So today, on this day that she left earth to reunite with her loved ones in Heaven, I wanted to introduce you to my grandmother.

PS: The pic is of my two kids and “MawMaw”. David, I’m sure, was there waiting to give her a big hug when she reached Heaven’s gates. Austin will be here with me, carrying forward their legacy.

52 People You Need To Meet: #8 Ellen Ayers

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Hindsight is a great view, but who would put it all together as a deadly brain tumor?  In April headaches, in May anxiety, in June company and total devastation.  Mark loved kids and took our company’s bored teen girls to the mall, Burger King and came home with the stupid BK paper crowns.   He asked me to drive home after going to dinner and later my son said that dad had a hard time with the tip.  Mark was a numbers guy and would state “362 x 14 that’s 5096 right?”  I’d get a calculator.  Back at the house life forever changed.  Mark couldn’t work the remote.  I thought he was having a stroke. He couldn’t finish a sentence, couldn’t even put one together.  We drove right past the closest hospital to the heart hospital.  We happened to know and trust the Neurologist on-call.  I work with him, and Mark had done business with Doc.   Mark had a grand mal seizure in MRI.  He worked out at home and at work, lifting weights, tossing 100lb bags, ran daily, didn’t drink and didn’t smoke.  Mark was combative and wanted to get up and go, and they thought I could calm him down, but he didn’t even know who I was.  It took 8 people to hold him down.  He finally snapped out of it, and Doc asked “Do you know who I am?”. Mark said, “Sure Jim!”  Our smiles lasted only a few minutes…the results…a brain tumor.  Surgery the next day confirmed it was Grade IV Glioblastoma, and no cure.  Mark fought tenaciously for 3 ½ years on trial meds (average mortality is 18 months).  He was only 52yrs old but many are much younger.

I wish I knew there are many other caregivers going through this savage disease, but am blessed I found some now.  I wish I knew what exactly to do when watching the one I loved so much fade away.  I wish I knew how other people’s kindness could overwhelm you.  Friends, family, healthcare workers touched our vulnerable hearts to tears in so many kind ways (the company we had finished their vacation and took pictures with the BK crown in each in honor of Mark, and we laughed and cried when we saw them). I wish I knew time doesn’t really heal, and I will never be back to my “normal self”.  I wish I truly appreciated what I had.  Mark was a unique man who did so many kind acts. I wish to be more like him.  I was blessed and spoiled.  I would have hugged and made love to him even more because a thousand times wasn’t enough.  I would have taped his sweet voice, I miss it.  I would have held my anger at times when he was paranoid.  I would have taken less time at work and more time with Mark (I worried I would lose my job, though they let me work from home many days).  I would have slept with him more in his hospital bed (his legs had to be elevated and it was hard for me to sleep that way).  I would have held him as he died instead of being next to the bed.

I would not have changed the love – always holding hands.  I was honest along the devastating stages of his disease.  We said “I love you” but for 25 years we always had.   You get over grandparents and parents leaving this world before you as expected.  No way can you prepare for years of empty pain, losing a spouse, best friend and lover.  Even in a crowd I feel alone.  I pray I’ve never judged other peoples pain due to loss.  It’s unique for all.  I still talk to Mark several times daily and miss his laughter.  I know what I had was special and some never will experience that kind of love.  I know I was/am blessed but it doesn’t change the pain.