It hurts so good.

What IS grief?

I’ve grieved many times in my life throughout many different situations and not all of them had to do with death.  Grief is something that is hard to control because it’s sneaky.  Much like Keith’s cancer which interrupted our lives like the devastation of a tsunami, grief rises and falls within me.

I have a made a conscious decision to allow grief to control me.  That sounds odd from someone who tries to remain positive.  What I mean by that is I am not running from it.  I am absorbing every little crevice that grief is exploring in my heart and in my soul.  It is painful.  But it is rewarding and I am learning from it.  I told a friend that I am embracing the void.  There are times when I am just functioning and doing what needs to be done and there are times when I’m living life and laughing and enjoying all there is to enjoy.  I can go many days and smile at my thoughts of Keith and remember adventures and tribulations and I am just fine.  I can laugh with friends and feel him smiling at me because I am able to do so.  There are times when I will be having a conversation and the tears just start falling and I can not control them.  This is my conscious effort of allowing the grief in.  I keep our bedtime ritual alive with outward prayer (my list is so long that now God and I have an understanding of who I am praying for unless I have specific requests) and then I either write to Keith in my journal [thank you again, Sue] and it always ends with holding Keith’s picture.  Some nights I just smile at him and other nights, like last night in fact, it was a heavy dose of tears followed by I love you.  He then rests on my nightstand with the huge smile he’s remembered for.

Exploring my grief is essential to my growth as a person.  I have grieved the loss of family and the loss of our son.  It didn’t matter that Keith, Jr. was Keith’s son and mine by marriage; he was my son and I loved him as much as my birth children.  When we grieved together, I grieved silently as a mother and the void is immeasurable.  I grieved as the wife of a man who lost his namesake.  But mostly, we were able to grieve together and draw on our faith to make sense of something nonsensical.  And I am still sad for losing him and my other family and friends – that kind of grief is never going to end.  In the peaks and valleys of life, in the end, I will be at the peak with them.

And then there is now.  I am embracing the void because it’s there.  It’s now.  It hurts and it stops me in my tracks at the oddest times.  By embracing the void, by embracing the tears and sometimes fear that goes along with that, I feel Keith’s presence more.  We talked so much about what death would look like for him and what life would look like for me.  I am left now to my own devices to figure that out.  I have so many things I’d like to do, some realistic and some not.  What I think I want may not be what I actually want. I have a purpose – a big purpose and it is slowly coming to me.  I am allowing grief and life choices to happen – I am using the experience of incredible love and intense pain to shape my future.  In order to recharge our minds we must accept that a battery does not work unless there is a negative and a positive.

I have been reading a book given to me, “grieving mindfully” by Sameet M. Kumar, PH.D.  I understand his concepts based on Buddhist teachings and much of it makes sense.  I don’t necessarily agree with all that he has written and that’s ok, I’m finding it interesting for sure.

Before receiving this book, I made my conscious decision to embrace the pain and then I read the forward in the book and the following paragraph had me continue reading.

“Yet, though overwhelmed by the great upset of grief, we have a choice about how to respond.  We can turn away from our own deep pain, seeking relief from distraction, numbing, and denial.  Or  we can turn toward the pain with compassionate attention and a willingness to allow what we are feeling to be just as it is.” – Jeffrey Brantley, MD.

When Keith was first diagnosed, we grieved.  We were in a fog and then when he had his surgery and learned the extent of his disease, we grieved.  When we realized that his disease became aggressive, we grieved.  And once again, we grieved together.  I have always had someone to grieve with me.  And while my family and friends are also grieving, this is the one time in my life that I must do it on my own.  And maybe, just maybe that is why I am doing it so purposefully.  By allowing this pain to take it’s best shot, it allows Keith to remain there – just as he is meant to be.  When in my deepest, darkest moments I hear him, I feel him and I sense that he is telling me “thank you”.  I will never let go of this grief I have, but it won’t define me or my future.

God has a plan.  He mapped out a tremendous mid-life for me and I have every bit of hope that my “golden years” will be every bit as rewarding.  The dictionary tells me that I am 10 years too young to be in my golden years – but hey, who is counting?

I am grieving.  I miss my husband, my best friend and the person I was to grow old with.  I miss his smile, his thoughts and his embrace.  I am grieving and it hurts so good.

Love Letters

Over the years I have received so many cards from Keith – on important holidays. One year I think he forgot or didn’t have time, more than likely, to buy one.  I never cared about a present, but something tangible to hold onto meant a lot.  In my mind, at the time, a card meant he had to go out of his way to the store, look through the seemingly miles of words that someone else wrote to find the “perfect” words as if they were written by him.  Of course this is how I always picked out a card so it was wonderful when I would receive them from him and hold on to every word just knowing that if he had the means, he would have crafted the words into his own beautiful hand-made card.  How silly of me.  Neither a card nor a present was as important as having him here with me, in person.  And over the years, especially as we got older, we found ourselves buying a “joint” gift for the important dates of anniversary and Christmas.  That could have been anything from a new TV, a car for one of us, or heck, even a new lawnmower!  Everything we own is ours – even if he drove one car more than the other.  But we always remembered in some way to purposefully write something tangible.  Whether a letter or a store bought card or even, as I will share it below, an anniversary card written on a napkin.  19th Anniversary Card

Around December 1, 2013 Keith and I talked about Christmas and gifts.  He asked me what I wanted for Christmas.  It was rare, I mean really rare, for him to buy me something without asking what I wanted.  Not because he couldn’t come up with something to buy, but he wanted to always make sure that it was something I really wanted.  A few years ago I started giving Kim ideas so she could pass them on to him privately.  I think he liked that!

During that conversation and not knowing that our Christmas would be spent in the hospital, I asked that we each write each other a letter.  A letter from our hearts.  I share these with you now.  I’m so glad I asked for this gift, it means more to me than any piece of jewelry, clothing, electronic or vehicle.  It’s mine and meant for me, as was his to him.

Keith’s letter was buried with him:

Christmas 2013

My dearest husband Keith,

This is our 20th Christmas spent together. How blessed I feel to say that and how happy I am to feel your love.

I asked you to write me a letter as my Christmas present because I always want something with me to hold in my hands should the time ever come when we can’t physically hold hands. If the time ever comes, that I leave you first, bury me with it – and if you should join the angels before me, this letter will go with you.

Christmas is a time as I’ve gotten older that I do reflect on the true meaning. It also gives me pause that because of His birth, I am able to trust that no matter what our future holds, God has put us together for a reason.

My gift from you has always been how you have treated me for the past almost twenty years. I have never felt more beautiful, more loved or more cared for in my life. You have made me so proud to be your wife and your best friend. You have made it so easy to love you with your kind and gentle ways and your beautiful smile. You have given me so much joy in my life that no matter what happens, I will always be thankful.

I don’t know what is going to happen a year from now, two years or five years down the road. What I do know is that I sure don’t want this fairy tale life to end. I know that no matter what though, I will always honor who you are and what you have represented to me and to our family and friends. You tell me and others that I am your rock. Honey, you are my mountain, the one who I lean on and go to for every little thing. I hope that if we are ever not together, that as I look to you for guidance, you will hear me and that I will somehow know whatever decisions I would have to make you would be in agreement with me. I have always wanted to make you proud and I hope that I have done that. I also hope that I will continue to make you proud as the years forge on.

I am not sure why I feel the need now to write this letter. Maybe so you can read it over and over and over again and always feel my love. So you can know that you never have to worry that you won’t be taken care of. I know it’s not easy being you right now – you are used to taking care of everyone else and just “doing” because that is who you are. There is nowhere in the world I would rather be than right here, right now, with you. As your wife, as your caregiver, as your best friend – this is what it is all about. This is what we go into a marriage saying – we will be with each other until the end, in sickness and in health.

I love you so much. I know you know this. I know you feel it. I wish there were new words sometimes, because my love goes so deep, that the word itself sometimes just seems inadequate. You are my world. You are my light. You are everything to me.
I wish you on this Christmas, continued pain-free days, strength and energy going forward. I wish you peace and acceptance and above all, I wish you always know that no matter what you have to say, I am listening. I will do for you today, tomorrow and forever, whatever it is you want or need.

And when my time comes, this will be buried with me: [you can click on the images to read the full letter – remember hit back in your browser to bring you to this page again]

My 2013 Christmas letter from Keith0001

My 2013 Christmas letter from Keith0002I don’t know who it was that said it, but it’s true: “Say what you mean and mean what you say.”   We never had a problem doing that!

Appendix cancer and Stuart Scott

The world is a stage and we can sit in the audience or we can be the character most beloved by that audience. The choice is ours and while I don’t want the leading role in any production, I will make my voice heard in the choir.

Below is my personal observation on the death of Stuart Scott in the appendix cancer world:

In the USA, we tend to idolize those in the public eye – especially actors/actresses and sports figures. Stuart Scott, sportscaster, while fighting a debilitating appendix cancer owned up to the fight. He received wide praise for his willingness to work through some awful treatments and get back on the set as soon as possible following surgeries. In the appendix cancer and pseudomyxoma peritonei communities of which I am a part, there was a profound sadness that he didn’t bring more awareness to the disease. Since my husband, Keith Surges, very recently passed away from the very same disease, I can understand why someone would want to sit in the audience.

Stuart Scott was first and foremost, a dad.  And second, he was in the public eye. Everyone wanted a piece of him, especially his sports network followers. If he had embarked on raising awareness it would have taken away more precious time from his family. It was the one thing he was able to keep somewhat private – for himself to share only with his children and those in his inner circle. His privacy with it was the one thing he DID have control over.

I don’t believe that because a person is in the public eye it is their duty to raise awareness for anything. To be an advocate or a voice for something means it is important to you deep inside. What appeared to me to have been important to Mr. Scott was not his cancer, but his life and his privacy. I think the public outcry in the sadness of his passing allows those of us who want to raise awareness the foundation on which to start. And I hope by doing so, the focus is put back onto awareness, not the passing of a well-known and by all accounts, deeply loved man. I too lost someone that falls into that very same category of being loved and respected, but known not to the world. I aim to change that!

There are some fantastic organizations out there that are doing amazing things for research, advocacy and awareness in the appendix cancer world … the www.pmpcure.org (intercontinental research, advocacy and awareness)  www.BeUninTIMidated.org (research funding, awareness and advocacy) and www.pseudomyxomasurvivor.org (awareness and advocacy). All of these organizations were started by patients while fighting the same disease as Stuart Scott. These are the people that want to help others. I’ve seen in our own community of patients, friends of mine, who are willing to put themselves out there after misinformation about appendix cancer is given by the media in reference to the passing of Mr. Scott.

These people, the patients and their caregivers, are the real heroes in my eyes. Stuart Scott had some very inspiring words to share with the world in his fight. While I could never and would not ever, discount any lasting mark that Mr. Scott left on this earth, and the sports world will no doubt miss his incredible presence, it is not up to the “superstars” to advocate and change what we believe needs to be changed. That change must come from within ourselves by speaking first in our own communities and then by embarking on larger scale awareness as it fits into what is in our hearts.

Appendix Cancer adenocarcinoma is as deadly as is its counterpart, Pseudomyxoma Peritonei – but it’s treatable and curable by a surgery called “cytoreduction” and an ensuing “HIPEC” which is a heated chemo bath given during the cytoreduction.  Sometimes, depending on pathology, systemic chemo can help prolong life or even shrink some tumors allowing a patient to become a good candidate for the surgery. You can Google either one of those terms to get a better understanding.  If the pathology isn’t extremely aggressive as in my own husband’s case, and the disease hasn’t progressed too far making the patient inoperable, and people get to the proper surgeons who perform these complex surgeries as soon as they are diagnosed, it is curable. It is definitely NOT a one size fits all disease and it does not discriminate. I’ve always said in this community that every body is different but everybody is the same.

If this disease has affected you personally, sometimes the best thing you can do is fight to stay alive and there is no room for anything else.  However, in our case we felt strongly about something – awareness!  So Keith did all he could do to fight until the end and he did what he could to help others.  My husband and I have been very forthcoming about his disease.  That was important to him and it continues to be important to me.

A fast moving freight

Today’s title is sort of the emotional rail I’ve been riding.  Like all trains it will pull slowly from the station, and then you may find yourself at the rail crossing watching it zip by you in a blur while you are lost in thought waiting for it to pass and when it comes back to the station, it’s with a screeching halt.

That is what the last month (yes, tomorrow morning not long after midnight will be one month) without Keith has been like for me.  The first week or two was a blur with the initial loss and making final preparations and then calling insurance companies, credit card companies, social security (now there’s a misnomer – “security”).  In a weird sort of way I felt like a freight train but had started to feel like I was going to derail.  As the 3rd week rolled around, I found myself crying more than I had the first two weeks.  I just can’t fathom my life without him by my side.

One month.  31 days.  744 hours and I have survived it.  I spend a lot of time looking at all of the messages that Keith would send to me over the past year.  The love letters written and the pictures we took.  I find myself doing some things that are only important to me I guess.  Just before I cancelled Keith’s cell phone, I used my phone to take a video recording of Keith’s voice-mail message as I called from my house phone on “speaker”.  I have all of these wonderful things to listen to and to read and I have the memories in my heart.  I am comforted by all of this and yet I often feel like it could be one misstep that sends me into the grieving abyss.  I believe I am strong enough, I want to be strong enough and I promised Keith after all, that I would be strong enough – so I will be.

Imagine this.  You have worked all day or shopped or cleaned the house or used so much brain power on something that you are just exhausted.  You can’t wait to get home or the clock to roll around to get into your comfy clothes – those pajamas, flannel or yoga pants and you feel great – you can let it all hang out and all is right with the world.  That’s what Keith was like to me.  The most comfortable, relaxed and right relationship in the universe.  It just was and he would always be there.  I never had to think I needed to get into something more comfortable because no matter what, after a long day, he was there and he was able to put me into that “yes, this is what it’s all about” mode.

That’s it!  Comfort, and now I am a little out of that zone.  So where will I find it now?  I will find it in his voice recordings; I will find it as I stare at pictures and remember.  I will find it when I search my heart and remember, gratefully, that God gave us to each other so that when Keith went to heaven I would be comforted in the knowledge that we will be together again.  Statistically (I hate math) I could be here without the physical presence of Keith for another 20-30 years.  That seems like an awful long time.  If they can go by as quickly as this past month, I will be fine.  And maybe as time goes on and the train comes in and out of the station I will just come to realize that I am prepared to meet whatever comes my way.

Loss by definition is deprivation.  I am not deprived of anything except a physical body next to me.  I still have his spirit, his smile, his guidance and his love.  I still have his written word and his video recordings.  I still have memories and I have his promise to love me through eternity.  I also have the promise that my God has given to me.  I can’t ask for anything more.

Today I will end with an excerpt from one of many computer messaging sessions between Keith and me from June 24, 2014:

Keith:

surgesk@sbcglobal.net: Do you know how much I Love You! I think I love you more than i ever have in our whole relationship to this point. You mean more to me than anybody ever has in my life except of course for my parents. You for the following reason are a small list of why this is so.
surgesk@sbcglobal.net: 1. The way you make me feel everyday that we look at each other every morning when we first wake up.
surgesk@sbcglobal.net: 2. The way we kiss each and every morning when we wake up except for when one of us is sick.
surgesk@sbcglobal.net: 3. The way you have taken care of me through this whole Cancer issue from the very beginning to this date and everyday since.
surgesk@sbcglobal.net: 4. The way you look at me with those beautiful eyes of yours.
surgesk@sbcglobal.net: 5. As much as you have Loved me throughout our entire relationship and beyond.
surgesk@sbcglobal.net: and for all of the numbers in the numbering system which is 6 through infinity. Every thing else we can think of to fill out each of those numbers. I know that right now you are going to say that you are going to you love me more then I could imagine and you know what YES YOU ARE CORRECT BECAUSE I THINK THAT WE BOTH LOVE EACH OTHER THE SAME AMOUNT AND WILL FOREVER AND EVER!!!!!!!!
surgest@sbcglobal.net: Wow. I definitely feel loved. Now let me respond accordingly …
surgesk@sbcglobal.net: YES MY DEAR YOUR TURN!!!

Me:

surgest@sbcglobal.net: 1. The way I feel when I wake up next to you is what has kept me going for twenty plus years.
surgest@sbcglobal.net: 2. Kissing each other is as important in the morning as it is in the evening when we say good night and is part of what we have done since we met – it keeps us secure.
surgest@sbcglobal.net: 3. Taking care of you is easy and a pleasure for me. You have taken care of me all along with my own health issues and this is what people who love each other do – without any thought.
surgest@sbcglobal.net: 4. Sometimes when you look at me I feel like you are actually looking deep into my soul. When you search me with those eyes, it melts me.
surgest@sbcglobal.net: 5. I have never doubted for a minute how genuine your love is and for that I am eternally grateful – you have always made me the most important person in the room.
surgest@sbcglobal.net: 6. Eternity is a long time and I am grateful for the opportunity that we will get once we meet again in heaven. I hope our time apart is met with minor obstacles but I will draw on our love to get me through the difficult times.
surgest@sbcglobal.net: 7. I love you equally.

Unconditionally

Happy New Year!

I’ve been thinking about “subjects” and what is most important to me in writing this blog? Unfortunately my mind runs amuck often with different ideas, depending on what time of day it is. What continually keeps repeating in my head is the story. I used to have a saying as my background imagine on Facebook “Maybe it’s not about the happy ending. Maybe it’s about the story”. So I think mostly, I need to keep talking about “our story” – the story that has made me the person I am today.
One way in particular that I thought it might be helpful for me was to draw on memories – tell a story about a particular place, time or event. Share with you experiences and maybe even what I learned from them. I was thinking, why not do a 365 day memory? I quickly realized that definitely puts a lot of pressure on me to make sure I blog every single day – not going to happen. It might happen twice in a day, every day for a while or once a week…who knows, could be less than that! I am trying to make this a no expectations adventure. This makes it more healing for me because without expectation, I can just let thoughts and memories emerge from my heart and not have to put fore-thought into anything. That’s not my intent in writing.

I have never been one to like or accept accolades – it’s not in my nature. Of course when I worked outside the home it was always nice to hear “good job” but other than that, I’m pretty much ok with just being accepted for the person I am. When I was writing in caring bridge I had a lot of people tell me that I need to write a book because they enjoy my writing. I would explain that I write like I talk. If I pause in talking, there is going to be a comma placed in the sentence whether it grammatically belongs there or not! If I have run-on thoughts (I do have plenty of those) there is going to be a lot of dashes – you know, how when you need to get to the point!

I was at a New Year’s Day party at my sister’s house. Two of her friends approached me. One said my writing helped her in a unique way with her feelings of her dad because her dad was so much like Keith in his own dealings with dying. She also felt that I was able to help her understand and empathize because as I wrote about Keith and me, it is exactly the way she feels about her husband. I was a little embarrassed because of the high praise, but felt very blessed to know that my writing deeply affected her in this way. Then, another friend told me that my writing helped her remain grounded in knowing exactly what she wants and helped her focus on what was important. That was great feedback to someone who is writing for herself. My thought process is somewhat skewed here, because I am writing for me, but I am honored that my experiences give hope to others in their lives. I do hope to give comfort to those caring for a dying loved one and sharing what I believe to be the most incredible transformation of life – loving another human being so unconditionally that losing them to death makes perfect sense.

Now that I’ve put that out there … how can this be possible? I fell madly, deeply in love with Keith 3 weeks after I met him. Yes, 3 weeks. Of course we waited 7-1/2 more weeks after that to get married. What? We both heard a lot of “don’t you think you’re rushing into it”? “Isn’t that a bit fast”? “How could you possibly know someone in that amount of time”? We had both been married before … me (well I was married twice before) and I will just say that those relationships helped mold me into the person that I was when I met Keith. I had an 11-year-old and an almost 14-year-old from my first marriage. I was in physical therapy after having back surgery from a work injury and out of work on worker’s compensation. I owned a home and made ends meet thankful in part to child support used for making those ends meet. I was content with my life and looking forward at the time, to healing and getting back to work. I meet this amazing man Keith at physical therapy, a group of us go out one night and Keith and I end up the entire evening talking to each other. We were inseparable since that day. So yes we were married – June 22, 1994 and our love continued to grow and blossom. Our marriage became something so different from anything I had experienced previously in at that time, 34-years. That’s not to say that I didn’t at one time love those other people; you don’t marry someone you don’t like. (Well OK, maybe someone Hollywood people do that). What I am saying is that God put two people together for a reason … He put Keith and I together because I believe God wanted a message given – love each other so unconditionally, that letting go of them, no matter the personal pain and earthly loss, you are able to say and truly mean it in your heart, I am happy for him/her. I truly, with God as my witness am so happy for Keith. In Christianity we are taught that Jesus is the chosen one. In my perfect marriage, Keith was the chosen one. God chose him to become weak when I was the weaker of the two throughout our marriage. God chose Keith to love me so unconditionally that I learned to love myself – just the way I am. I was perfect – perfect for Keith and that is all that ever mattered. That’s all that will ever matter, because you only get that kind of perfection once. God chose me for Keith because he needed someone who would love him unconditionally. He chose me because I have always been a good care-giver. He chose me for Keith because he needed someone to believe in him because aside from God – Keith did walk on water to me. In His master plan, He knew that Keith would be brought home first. But, the blessing in all of this is that for those twenty years and counting, our lives, despite the things that happened to us and around us, we just remained in love. There was never a time that we doubted our love could carry us through any situation. Even at the end, when we knew that we were going to be earthly departed, our love made everything OK.

For this life, with that man, I am a woman blessed.