One Year

   I actually wrote about half of this blog earlier this year and the rest about a month ago.   It's different from my most recent blog as it's a flash back of the day my life changed forever.   I woke up in the middle of the night (which I often do) and my brain and heart were racing.   Wanting for who knows why to remember the details of that fateful day.   It was a struggle of me constantly trying to tell my brain and heart "not now, I promise we'll revisit this later" before I finally was able to calm them both down and fall back asleep.   The next day I did as I promised, hoping that by writing them down where I could refer to them later if I ever desired that perhaps they would not plague my nights.  I still think of that day often, as one would expect, but I like to hope that writing it down did help somehow.   

 One year ago, my life changed forever...

     The previous Wednesday he started chemo.   He had been on the treatment before for several years, but they made him start over as if he had never had it.  We had asked how long it would take and were told the wrong information.   We were prepared for a few hours and were stuck there for the entire day.  Chris had been worried about all of the logistics of getting him where he needed to be.   He was still regaining his strength and he felt bad having me push him.   Our sweet nephew had come with us to help and I felt.   We tried to make the best of it, but  It ended up being a very long day and we all were very frustrated.    As well, that day was turned out to be tough for another family member and he and his wife we also stuck at a hospital dealing with difficult things.   After an early morning, we finally got home later that evening.      We were tired and I was worried about many things.   

    The next day I tried to work and catch up on what I could.   That night, he wasn't feeling well.   We talked about what it might be and came up with a few different meds that might help and we climbed into bed for the night.   For much of the time since he had been released from the hospital, he didn't have the strength to walk into the bedroom, let alone climb in and out of bed.   So I remember with so much gratitude and tenderness the joy of snuggling up next to him in bed.   It was a huge accomplishment and a sign to me that things were doing better.   

     On Friday I woke up and was doing what I could to work some.   When he woke he still wasn't feeling well.   Ever since he had been released from the hospital about a month before, we had been taking his vitals a couple times a day.  Sepsis had us terrified about how quickly things could change.   But just prior to this we decided we didn't need to do it.  No one had told us to and it wasn't really helping us to move forward.   But everything was still handy and we took his vitals (but didn't think to check his oxygen).   His heart rate was a bit elevated.    He usually was very resistant to going to the hospital, so when he called Matt (his amazing nurse) and Matt said we probably should get checked out it was a bit surprising that he didn't resist.   Looking back a sign that he was feeling really sick.   He asked if we wanted to go the ER or the clinic and we said if there was a chance he might need to be admitted we might as well go to the ACC (the cancer center's version of an ER).   He called and made an appointment for 2:00, which was a couple hours away.   I backed out of my remaining work plans and tried to get ready to go.   

     We called upstairs to our nephew and asked him if he would come with us.   I grabbed a few things I might need, not sure if we would even be staying the night.   We had worked out a system of how the three of us could maneuver different chairs to navigate the kitchen, hallway and stair.   Sounds simple, but it was quite the production.   He had a difficult time getting out to the car was exhausted.  We used the walker that had a seat and pushed him through the garage the final distance.   He was weak getting into the car and I was so grateful for the extra set of hands and muscle.   We got to the hospital a little bit early and they had us waiting in the waiting room, he was really tired and wanted to be seen.   In hindsight I should have pushed a little more for them to take him back.  His other nephew was getting married about this exact time in another state and we were hoping to tune into the ceremony.

     They took us to a curtain room and checked his oxygen.  It was really low (in the 70's).   They put him on oxygen.   Then kept swapped out again for a higher flow.  His numbers were still not good, even on 15 liters.   I knew then that something was wrong.   15 liters is A LOT.   Within just a short time they moved us back to one of the bigger rooms.   (It's never a good sign to get a bigger room when you are in the ER, we learned that from our last visit).   At one point I looked over at our nephew and I could see the fear in his eyes.   Again, in hindsight I should have thought to have him wait in the waiting room.   I felt so bad, the hospital is a scary place.   I'd experienced a lot and was more used to it.   While this situation wasn't as serious as sepsis, that bigger room was intense.   

     A little like the TV show Cheer's, "Where everybody knows your name." it was good to see a familiar face.  One of the nurses from the ICU from our previous extended stay was part of his care team.   They put him on a bi-pap and his oxygen levels stabilized into the normal 90's.   They ran some tests and came back with the results.   The rhino virus, the common cold.   That didn't seem so bad.  However, at some point I heard them calling to try and get an ICU room and knew it was for us.  Ugg.   Even worse, there were no rooms available at the cancer center and they only place for us was at the ICU which we had horrible experience with at his diagnosis.  He pleaded with them and they said they would do everything they could to get him moved back over as soon as there was room, but there was no other option.

     Once he had a room assigned we moved through all of the long corridors to the other hospital ICU.  His numbers had stabilized and we figured he just needed time to heal.   It was apparent he was spending the night.   They said that he couldn't have any visitors and he was adamant with them that I was staying.   They tried to say that they needed to get approval and he wouldn't back down.   They gave in and said I could stay.   There wasn't room for his nephew however, so we figured out for him to take the train home and arranged for a neighbor to pick him up and take him back to our house.   He and I went down and had a quick dinner in the cafeteria and we tried to predict how long we would be in the hospital, hoping for more information in the morning.   His timing worked amazing and he got onto the train moments before it took off.   

     It was a fairly uneventful but not very restful night.   In the morning we were both tired but he was feeling a little better.   He said that the he had heard them talking about letting him go home today. Physical therapy came in and wanted to get him out of bed.   He resisted but I encouraged him to have them come back in a bit.   He wasn't up for doing much, but we were able to sit side by side looking over the snow covered valley with the world cup playing in the background.   

     At one point (I can't quite remember when) the respiratory therapist moved him from the bi-pap to the high flow nasal cannula and within 10-15 seconds his oxygen dipped into the 30's.   I had never seen it that low and it was alarming, but I figured it must have been a malfunction of the sensor.   

      I finished my blog and then since he was peacefully resting and I decided to go back through the tunnels to Huntsman to retrieve some things I needed from our vehicle.   I told him I would be gone for a while and made sure he had his phone if he needed anything.   I was nearly done gathering the things I needed and was headed back down the halls when he messaged and said "hurry".  I asked what was wrong and he said that something was wrong with the bed.   As I passed the  surgical waiting room I told him I was on my way.   I had no idea that our lives were about to change forever.   

     When I got back there was a lot of people in the room     Someone questioned who I was and another recognized me and told them I was his wife.   He was struggling to breath and I think I remember both him and the nurses request that I try to calm him down.   Like he was having a panic attack.   Chris pleaded as well, and I did what I could.   I tried to find some music (settling on star wars soundtracks) to help give him something to focus on.  I held his hand and assured him things would be OK.    We were alone for brief periods here and there, but not often.   

     At one point they had said he had fluid on his lungs (which we had known) and made me leave the room so that he could get an x-ray.   You aren't supposed to stand just outside the door for privacy reasons, so I went to the waiting room.  The rest of the night is a bit fuzzy.   But when I returned to the room things were different.    He tearfully told me that they wanted to intubate him.   I could see the fear in his eyes, and so I did my best to be strong so he could draw from my strength.   They came in and he signed the consent form.   

     The respiratory therapist was in and out of the room trying to prepare him to be transported down to the OR.   Things weren't super rushed, and I heard they were waiting for an ENT to come in just in case he needed a trach.   (That sunk my heart, how were we here... again).    I've been in the room while they did an emergency intubation before so it seemed like it wasn't quite as serious and they were just being precautious.   But when he was gathering up as many oxygen tanks as he could find, I think he had six, just to get down the elevator to the OR I was very concerned.   He had come all the way from the other hospital just one, six was serious.   

     They finally gathered everything and gave us a moment before they wheeled him down.   I stood on my tippy toes a tried to give him a kiss goodbye.   The BiPap mask made it difficult, but I assured him things were going to be OK and that I loved him.   I looked into his eyes and could tell that he was scared.   We had experienced the heartache of not being able to breath.   I was hopeful that he would only need to intubated for a day or two.    I was left in the ICU room alone, that was the last time I ever saw him.

      In the chaos of everything going on, I texted my two aunts who lived close asking if they were home and if they could come to the hospital.   Immediately after I regretted it.   I felt bad that I had asked them to come when they likely wouldn't be able to stay.   Even though they were coming quickly and lived close, they likely wouldn't be there until after he had come back to the room.   After all, it was just a cold.   We had been through so much worse.   Chris never really liked a lot of visitors in the ICU and for people to see him that way.   But they were already on their way and I was numb and scared.   They came up to the room and were sitting on either side of me as I told them what was going on.   I distinctly remember at one point saying "Something is wrong" when he had been gone for a while and I hadn't received an update.   Shortly after two guys walked into the room, and without them saying anything I knew.    They knelt in front of me.  My brain shut off.   They explained what had happened and told me he was gone.   

     We were moved to a small quiet, locked waiting room just outside of the door to the ICU.   It was next to the shower and I had seen it on occasion.   I felt sick, and sat and sometimes laid down on the nasty floor so that if I passed out or decided to puke I wouldn't fall and hit my head.      I started the difficult task of telling people.    Those are the most difficult phone calls I've ever made.   Some I remember making, most are a blur.   Later I asked someone how they found out, and they said I called them.   

      I tried a few times to reach my parents and had talked with my brother and asked if he could also try to reach them.    When I did finally reach them I asked if they had heard from Adam, but then after a little bit it was obvious that they hadn't.   He had been in the ER that week with some difficult health challenges and so thought I had information about him and were worried.   I'm sure like others my news was not what they expected.   

      I texted his doctor (in hindsight I have such regret for not calling him) a bunch of symbols to represent swearing.   He replied and asked I meant to send that to him and I texted back "he's gone".   He called a bit later and was completely shocked.   I had been in contact with him, and he had checked in on his progress that morning and felt he as OK and that he didn't need to come in.   We were blindsided.   

     At one point two of the people who had been in the OR asked if they could come in.     I don't remember much, just that they both gave me a hug.   I should have thought to ask if there were things that I would want to know that they could share, but those thoughts didn't come until months later.   Perhaps he said things.   I know they wanted to offer something, but I felt nothing.   

     They brought him back to the room, and said I could go back with him.   But I had thought about it over the years and really wanted my memories of him to be of him alive and so I didn't go back.   I remember muttering "But I don't want him to be alone."   My aunt Roxann immediately went and sat with him for which I'm so grateful.   My aunt Gail handled all the paperwork.   I'm grateful she was there as well as she often had to track down and ask people for the paperwork that we were told we needed to fill out.   Shift change had happened and in the worst moments of my life, we had been forgotten.   Left in a room on a Saturday night while the new shift attended to other patients, patients who were still alive.   

   I wasn't sure how if I would ever be able to stop the racing thoughts in my head and asked them to see if any way they could prescribe something to help me sleep.   They couldn't and recommended we go to urgent care.   The one at the hospital we were at was closed because of construction and so we would have had to go to a different hospital.   

     Eventually there was nothing more to be done and it was time to leave.   I can't even describe how difficult that was.   But somehow I put one foot in front of the other and walked out of the hospital.  I really thought I was going to throw up, but walking out into the cold winter air helped slightly.   I remember looking up at the ICU windows where I knew he still was and my heart breaking into pieces yet again.    It was at that moment that I also realized I hadn't told my friend Rachel and I sent her a text.  

     My aunts had given me the choice of going home or to their house.   Nothing made sense and I made the decision to go to their house, because they have amazingly soft carpet and I knew if I wanted to lay on the floor at least I would be comfortable.   I was still shaky and hot, I think I even rolled the window down to feel the cold winter air.  On the way I received a phone call from the hospital asking if I would be willing to donate his eyes to science.  I was blindsided as we had assumed that donations wouldn't be possible once he was diagnosed with cancer so we hadn't even talked about what his desires would have been.   He likely would have wanted to, but  I couldn't tolerate the thought and declined, he had such beautiful eyes. I remember thinking about the person whose job it was to make those phone calls.  

      We stopped at my parents briefly on the way home.  What started out a day of hope with the prospect of returning home ended up a life altering day in the worst way.   I eventually climbed into bed, and listened to Chris's voice talking saying "Ay oh, this is Iron Lion with the Bloons TD daily challenge..." on Tik Tok.  Oh how I miss his voice.  

     Over the years when we talked about the possibility of him dying, he had always said that he didn't want to die at the hospital.   I'm so sad that is how it happened.   While I understood his desire, I couldn't imagine how I would survive it he died at home.   With several near calls the previous months where his doctor said ... "You are strong as an ox, you walked up to the line of death, laugh at it and walk back."    He fought so hard to stay with me.   He overcame impossible odds.   I can at least say I'm grateful that we were only apart for a short moment before he was taken and that we were in the hospital and away from home for a day.   In some ways I'm also grateful that we did not have to deal with the heavy weight of hospice and knowing that we were at the end.   We always felt we were going to make it and had hope until the very end.   At least maybe I did, I'm not sure about him.  We hadn't really had time to talk about or process just how very close he had come, multiple times over the previous few months.   

      It's hard to believe I've survived the worst year of my life.   It was horrible and I'm certain I've already blocked out some of the worse.   There are simply no words do adequately describe the last year or how incredibly much I miss him.   Every moment of every day, my heart misses him and the life we had together.   Yes, life together with cancer was horrible and hard but we were together.     

One vs Two

     Earlier this year as I started my journey as a widow, I turned to online support groups. They had been very helpful in our experience with rare medical challenges and I hoped they would be again. I was wrong. They instead were terrifying.  Being able to know that you aren't alone is one thing.   But hearing the tragic ways in which others have lost their loved one when your heart is already broken was too much for me.   Not only that, but one thing that can immediately strike fear and dread into someone going through the worst of experience of their entire life was to hear "the second year is harder." The horrible thing you are going through... gets worse!?!! How could that be possible?    It has haunted my thoughts.   There were a handful of people who disagreed, but it was common throughout all the groups so there has to be some truth to it.   I asked another widow I know in person, and she said the same thing.   Terrified, but also grateful as being blindsided by things getting more difficult doesn't sound ideal.   Grief is so... complicated... messy... confusing...overwhelming.   

     In September I decided to take a step away from this blog and therapy.   I knew that I had difficult days ahead and taking a step back felt like the right thing to do.   Taking a break from it to "simply be" has been helpful.   I have been blessed  with many friends, but most recently with a good friend named Jen who is exactly what I needed when I needed it.   She visits regularly and her visits give me something to look forward to.   She listens, we discuss all sorts of things and she doesn't judge or try to fix me.   (Plus we both share an irrational fear of alligators and wish they hadn't made it on the ark.)     After a visit one day she texted something that been swirling in my thoughts.    "I feel something different in you...I don't know how to explain it."   I agreed and said that I had been trying to figure that out myself.  

    As I tried to explain what had changed, I explained that things had shifted.   Nothing drastic, just a subtle shift.   Some better, some worse.    All I can think is that I've survived the difficult stage of early grief.   There are things so indescribable and painful about deep and early grief that I've determined it's much like childbirth.   Your body has a protective mechanism that tucks those memories and experience of the pain away so that you can move forward.  Waking up and facing another day without him is still a huge challenge, but there are feelings and sensations in early grief that I can't describe that have slowly faded.   I know because out of the blue they will surface again and take me right back.     Waking up with a heartache to realize it wasn't just a bad dream.   Manifested with what feels like a racing heart (but isn't), and pain that I feel deeply but not physically.  Thoughts racing through your brain so quickly and chaotically you feel like you are hanging on desperately in some wild chariot race.   Can't forget the widow brain, that fog so dense and thick.   Slowly it's improved, but still a daily struggle.  It's hard when I used to rely on my brain for so many things, to no longer trust that it can recall or remember things.   I have notes scribbled down everywhere in hopes they can help me remember something important enough to write down.   But sometimes even they don't suffice.    The sleepless nights combined with confusing nightmares that also make it difficult to separate them from reality.   Not to mention the emotional roller coaster that still often makes me nauseous.    Even feeling how I'm on the other side of it, I can't figure out what has changed, so I imagine as time moves on it will be more difficult to remember.   Not that you want to.   I really think that somehow we must forget that early grief, otherwise no one would ever love or marry again.   

     That slight shift of something different has also helped me to finally have a hobby.  Something to do to fill my evenings and weekends when I feel I have the energy and brain power.   I started taking quotes that I find and making them into beautiful images and videos.   I've started two YouTube channels (and various other social media platforms) to post them in.  One with everyday quotes, and one with quotes about grief and loss.  While it gives me excitement to watch a video random climb to 500+ views or to gain a follower, what really brings joy to my heart is a simple comment today on one of my grief quotes that said "I needed this".   Knowing I made a difference in the life of someone else going through a difficult time is a blessing.   

    So as I've thought about it these past eleven months, I've come to a different conclusion about the first year of grief.  Perhaps a year from now I'll have more insight.    I think the second year isn't harder, it's different.   The flipping of a calendar to a new month or year doesn't magically make things better.   There isn't a switch that's flipped where someone is suddenly done with grief.   If you loved deeply, the pain of grief is also deep.   It will forever be a part of you.   Time helps, yet it also hurts.   Slowly over time you find things that help with that hurt.   My life stretches out ahead of me, and it terrifies me.   Slowly I'm figuring out how to cope with this new life that I don't want and don't like.   One day I might figure out how to change that.   But for now, I'm still just trying to survive it.   One day at a time.   

     

Every Remembrance

     Twenty three years ago I married the love of my life, oh how it seems like just yesterday.   The website where I ordered his ring from had the option of engraving something on the inside.  I debated and agonized about what to engrave.   My name?   Our names?   Our wedding date?   Nothing seemed quite right.   Then a friend recommended a scripture reference.   It was perfect.   I ordered the ring and was so excited to give it to him.   He loved his wedding ring and all that it represented.   We were united together as one.   He was my husband and I was his wife.   He wore it with pride and gratitude.  Sadly with all the health challenges that he faced, his ring one day didn't fit any longer.    I ordered a simple replacement and then another.   I didn't think about burying him with it. Perhaps I should have.  He kept all three of them close to him at his desk.  But in a way I'm grateful I didn't.  Perhaps one day I'll put it on a necklace and carry it close to my heart.   

    

      Over the past several weeks this picture keeps popping up in a digital picture frame that is filled with memories from the past several years.   That picture frame was so hard to look at earlier this year.   I was tempted to turn it off, but slowly it has become tolerable, although still often difficult.  Sometimes it makes me smile, sometimes it makes me cry.   Those photo's capture a snapshot in time.   There are many moments in my life which are difficult markers.   Time is often measured in before or after.   None more defining than December 3rd, our wedding day another, but this close third.    This picture was taken on Saturday October 14th, 2017.   Five days before he was diagnosed with cancer. 

     He was going through so much as apparent by the eye patch (because his eye wasn't working right), his trach and the ventilator is there in the background.   He was in kidney failure and would start dialysis a few days later.   Yet it was just the beginning.  Thanks to our friend John and my aunt Roxann, Chris had someone to stay with him so that I could spend a day at work.   It was one of the last "normal" days I had before our lives were forever changed.   When I returned they were worried about an infection so guests had to wear plastic gloves and gown.   It was HOT!   In a quick moment before he left John took a picture of the two of us.   I love how even though I'm reaching over putting my arm around him, he was reaching out and attempting to touch my arm because he had missed me while I had been gone.     The ten hours we were apart for me to go to work was a long time.  But even though we were facing significant hardships and the future was uncertain, we were smiling, because we were together.   

     The scripture on his wedding rings speaks of "every remembrance", not just the good.   Some may think that I only share the good of our relationship.   That isn't true.   Our marriage was blessed and we were very close.   Except for very early on when we were figuring out how to balance life, work and family, we didn't argue.   We faced hardships and challenges like any marriage.   Finances, life decisions, health problems...   The blessing of our relationship is that difficulties and hardships were external.   

     As I've reflected on different memories of our life together another unique thing emerges.   Much of our happy memories are in video games.   I picture our characters running around in various video game universes including Ultimate Online. Dark Age of Camelot, World of Warcraft, Burnout Revenge, City of Heroes, Diablo,  New World, Ark, Raft or Valheim.   I've also likely left out countless others.   Amidst all the difficult memories of last fall, there is a very sweet and tender memory of us the end of November adventuring together with his nephews in Valheim.   What a blessing that while his physical body lacked the energy and ability to leave the house, we were still able to make a treasured memory and connect with his nephews.   For many that was their last memory, I'm grateful it was one filled with fun and laughter.   Hopefully one day we will all be reunited and can begin making memories again.   

      

    

 

Simply Be

     Early in this journey I found one thing that was helpful.   Structure.   For the past eight months this blog has been an important structure.   It's helped me to have something to ponder throughout the week and complete each Sunday.   But as I've thought about it over the past several weeks, I've realized that that has changed.  Constantly thinking about, evaluating and trying to articulate my thoughts takes a lot of mental and emotional energy.   I still plan to write, but I'm taking a step back.   I've finally reached a point where the weekend is not as terrifying and difficult as it once was.  It's still time to fill but I've slowly been working on things around the house and trying to find things to recharge.   Throughout our marriage, Chris would always tell me that I wasn't good at relaxing, he was right.   But that was because there were so many things that needed to be done.   Now I've got all the time in the world and much less that must be done.    I'd give anything to just be snuggling with him attempting to watch a movie and failing by falling asleep.   But it sadly cannot be.   So for my weekends, nothing is changing drastically.  Most people won't think anything has changed, but I'm shifting focus to spend the time focusing on whatever helps me recharge in the moment.    

     Earlier this year my aunt Kim shared with her a meditation that had helped her.   My sweetheart and I had tried years ago to try meditating together at night, we searched for quite some time before finding one that we really liked and then we meditated together holding hands at the end of the day for a long time.   It was amazing to me that of all of countless possible options she connected, the one she was suggesting was the exact same one, from the exact same narrator.   It's called Simply Be by Scott  Langston.   While the sweet and tender memories of meditating at the end of the day while holding his hand are still too difficult to listen to it, the words often come to mind.   

     Take a moment to stop doing and simply be. 

     Take a moment to stop thinking and simply be.  

     Take a moment to stop worrying and simply be.  

     Take a moment to stop planning and simply be.  

    

     Grief is a very difficult journey. It's confusing.  It's unpredictable.  It's individual.  It's exhausting.  It's inherently lonely.  With the loss of my sweetheart, I lost the person that I could talk to about anything and everything. In our unique case the one I lost the one who was with me 24/7 for nearly two and a half years, and as much as possible before that.   We've been through good times and impossibly difficult and trying times.   We were truly "one".  Having lost that, I'm doing my best at reaching out and trying to connect with others and letting people in.   It's not easy, but I know it's important so I'm trying.   However I've been blessed with some good friends and family who love me, I'm grateful for them.  But it went from my soulmate with me 100% of the time, to likely a single digit number at best spread between several different people.   Those people see a small part of my life and trying to be open and vulnerable with multiple people is hard.   I'm learning the people who can sit with me in my grief and the journey of trying to discover a new me; without trying to fix me.  It's not easy, I know people want to help, but sadly sometimes the things they do to help makes things harder.   Last week our friend Steve came over.   Knowing it had been Chris's birthday, he asked how the week had been and how I was doing.   I tried to keep it light, but as soon as the words came out I knew that it wasn't what he was looking for.  He knows just how difficult those milestone days can be and was there to support.   We then proceeded to have a good and heartfelt discussion.    I shared with him another visit with a friend of Chris's and how lucky I was that Chris had such great friends who are watching out for me in his absence and I consider them my friends.   I was also blessed with other friends who came and listened, family who did things to let me know they were thinking of him...me...us, and some who had text conversations with me, helping me to get things off my mind.    

  Just as there are thousands of different recipes for bread, the same can be said for grief.   There is no right or wrong way to grieve, and there is no set amount of time that it should take.    Everyone grieves in their own way and at their own pace. Talking with my therapist this week she said much the same, something that she has said multiple times.  "Grief takes time, and cannot be rushed.  Regardless of what you or others may wish."  I've accepted that.  

     So since the rest of the year seems daunting, I'm going to do my best to stop doing, thinking, worrying and planning and focus on simply being.  Whatever that looks like.   Our life has been anything but simple for the past 10 years, and quiet evenings and weekends to "simply be" feels like what I need to heal.    Maybe that will mean inviting a friend over, or watching TV, sitting outside, perhaps even reading a book.   I'm sure I'll still write, as writing is therapeutic for me.   But for now it might be nightly in my journal with the occasional blog.   Chris if he were here, would be proud.   He would be happy that I'm taking care of me.   

     As well, while therapy has been helpful for me, I've also decided to take a break from that as well.  I skipped a session a month ago, which is what helped me to realize a break might be good.   I've worried about the decision but when I suggested that I was considering it, it was great to hear her say "I Get That, I Like That."    Talking with her this week said she 100% supports my decision.   She also said she completely trusts me and my intuition.   That was very reassuring as it's so easy to second guess myself, especially when others think they know what's best for me.     She then proceeded to tell me that having the ability to acknowledge that I need a break is a healthy sign.  If I feel like I need a session one week I can call and ask what slots are available.   She said she would even stay late if needed.   Perhaps I'll start up again in the future to work through some of the difficult things that I've been carrying, but for now I'm just going to set them down and do my best to "simply be."    

Your Light

     For New Year's this year, I spent the evening reading journal entries from my sweet husband.  Simply put, they were amazing.   What a blessing to have a glimpse into his mind and heart.   A chance to know him even better than I already did.  His love for me very apparent and tenderly interwoven into the difficulties he faced.   I was able to publish them into a book which has sat on my coffee table.   As I thought about what to put on the cover, I first thought about "Fight Forever Guardian" which is a quote from one of his favorite video games and a character called Shaxx that became his cancer motto.   But I wanted something that represented his entire life, not just his battle.  I searched through different quotes from Shaxx, and the perfect one was found.   "Good work guardian, your light is Strong."     

    I spent time on his birthday reading that journal, as it felt the best way to feel connected to him.   I cried, I smiled, I even laughed.   So grateful for his humor, his love and especially his light.   He put up with an immense amount of pain and trials to fight as hard as he could to be with me as long as he could, and along the way he faced challenges that many can't imagine.    Even I, who was by his side.   Here is an entry of his from May of 2015.  It's incredible to me that this was two years before he was diagnosed with cancer.   

"Took Michelle to work and then relaxed and tried to live through a dark moment.   That is when I realized it was just a dark moment.   Nothing more.   I now knew how to tell Michelle what I was going through.   She needed to know what last night for what it was.... just a dark moment.   I will have those.   And I have no description for them.   But now I know.   And She knows.   And things are okay.   I love her and she knows."   

     The phrase "I love her and she knows" felt especially profound and touched my heart.  He undoubtedly faced more difficult and dark moments.   But his light survived.   Good work, guardian.   

     

     So as the weather turns to fall, I've also thought about two events we have been able to participate in that are very symbolic with light.    He had the blessing to work for an events company called The Lights Fest.   The put on amazing event (think Tangled) where lanterns are launched into the sky.   One of his friends from there came to visit me this week.   Drew and I had an amazing discussion.   The genuine concern that he had for me was so touching.   Chris sure did know how to pick friends, as I've been blessed by several who check in on me and offer help and support.   Chris and I were able to attend the event three times.   Once in Mesquite, another in Eagle Mountain and another in Tooele.   Each time they treated Chris like a VIP and made special arrangements to make sure we were comfortable.   

    

     As well, the year after he was diagnosed with Myeloma we were able to attend an event called Light the Night.   It's put on the the Leukemia and Lymphoma Society.   They are a non-profit who raise money for research and help patients receive treatment.    They were of great help to us.   At the event each person carry's a lantern which represents if they are walking as someone currently battling, someone supporting or someone who is walking in honor of someone who has passed.   

      For those in Utah interested in attending either of these events here are the dates.   LLS is free, but it is a fundraiser if you want to raise funds to help fight blood cancer.   For those outside of Utah, both events also are available in other states.   LLS also has a virtual event in November.   For me this year the memories are sufficient, but perhaps I'll go in the future.  

     

       

September 16th, 2023 - The Lights Fest

October 14th, 2023 - LLS - Light the Night

One Less Day

      Well...I survived a difficult summer, which unfortunately was harder than I thought it was going to be.   Which makes me even more nervous for the coming months.   I've reached a time where the memories of the difficulties of last year are intertwined with special days.  

      This week is my husbands birthday.   Oh how I wish he were here and we were celebrating.  However I can't help but also remember the events of last year.   His family in Montana and their efforts to fulfill his birthday wish by figuring out how to ship his favorite homemade enchiladas.   Early morning assistance from a friend and eventually emergency personnel to help him up from the floor.   A sweet niece arriving with another birthday request of homemade macaron's and a visit from his nephews.   Followed the next day by him pleading with me to call 911 as he crumpled to the garage floor.   Several of the same firemen and paramedics arrived and he was transported the short distance to the hospital, only to be life flighted shortly after to the main hospital.   Sepsis was terrifying but it was only the beginning of such difficult things to come.  Just as with the difficulties of his birthday, I'm trying to remember some of the tender things that happened as well.   To acknowledge the good and the bad, because they existed, forever intertwined together.    

     Birthday's always mark a the milestone of being another year older.   But even though it's his birthday, he won't get older this year.   

     My sweetheart had a brother pass away unexpectedly one cold January, 16 years ago.   A short time after his brother passed away he figured out precisely how old his brother was when he passed away, including months and days.   His oldest brother died at the age of 38, 3 months and 9 days.   He then did the math and figured out on what day in his life he would have lived longer than his brother.   Which occurred in December 9th, of 2012.   I often think of sorrow of his parents, who have had to bury two children.  I also think of his siblings who have lost two brothers.   Nieces, nephews, cousins, friends.   I like to think that he touched a lot of lives.   Loss is painful, but it's different when it's after a long life.  Mourning the loss of a life cut short, adds a different depth of sorrow.    

      He lived almost exactly 10 years longer, passing away at 48 years, 3 months and 3 days.  Ten years longer, but still much too young.  He found a song called "Dying Young" by Rob Thomas after he was diagnosed that we listened and talked about a lot.  We often discussed the question of... "At what age is someone no longer considered as dying young".  We never did come up with an answer.   Just as when you were a child and anyone a decade or two older than you seemed OLD.   It seems dependent on your current age.   He died way too young, and I feel way too young to be a widow.   

      I realized this week that I'm the age the he was when he was diagnosed with cancer.   A realization which hit really hard.   I know he felt much too young to be diagnosed with cancer, but even while he struggled with that, he was thinking of me.   

       With his birthday this week, I've struggled with what to do.   It's not for a lack of trying, just nothing has come to mind.   I want him to be remembered, but my heart doesn't feel like celebrating.   I've taken time off from work so my plans are to just do whatever feels right.   It helps to know I'm not the only one who will be thinking of him this week.  I've requested a couple things to other people, which has given me some peace.    The greatest gift I can think of is the gift of memories.   I likely will spend time reading his journal and looking at pictures, thinking of the wonderful life we had together.   While I'm certain they would make me cry, if there's anyone reading this who hasn't shared their thoughts and memories, please share.   I'm still collecting and eventually want to print them into a book.   

     Happy Birthday my Archangel.   

     

  

Golden Handymen

      A couple months ago a read a quick article about the needs of a widow.   One of the top things it listed was a handy-man.   It talked about how they were worth their weight in gold, and I completely  understood.   At that time, my toilet which had been slowly running  for a while.   My attempts to fix it were unsuccessful and I had made the problem worse.   In the past my brother in law from Montana has often come to the rescue, including lovingly remodeling our bathroom to make it more accessible when walking, standing and stepping were too dangerous.  Just asking him to help me know what parts to order was overwhelming and had me in tears.   Knowing I was in over my head, I was trying to decide who to ask for help with a neighbor also named Andrew offered to come help.   He not only fixed my toilet but a few other things around the house.  

       This week two neighbors came to the rescue, fixing something that has had me worried for at least a couple years.   Every time I would see it I knew it was something that I needed to get fixed and I'd tried to think of how to make it happen.   It was clearly something above my skill level (which isn't very high).   A board had warped on two different sets of windows.  Steve and Phil came and replaced the badly warped pieces.   One had become a shelter for spiders, ewww...   It took them a couple hours and it looks so much better.   However it's the peace of mind and one less worry on my plate that means the most.

      I know not everyone is quite so lucky to have a pool of good friends, family and neighbors.   I'm grateful for the many people in my life who help make life a little better.   

My Sunshine

      I've decided to take a break from thinking and writing so deeply about grief.     It's hard enough to live through it without constantly trying to evaluate how you are doing.    Writing has been helpful, but  takes a lot of work.   So instead today I thought I'd share a memory.  

     In 2017 we spent the first time in an ICU when we finally were able to get help for his airway.   It was a insanely difficult and we're lucky he survived.   While he pleaded with me prior to the first surgery to not allow them to place a trach, in order to be able to leave the ICU it ended up being necessary.   When the doctors told me that was the next step I was worried how he would take it.   But he had learned that being intubated, restrained and on a ventilator was worse.   They told him he likely would not be able to speak and the though of never hearing his voice again was hard.   But he proved them wrong and taught himself to speak.   It was a lot of work and often wore him out.   

       Sleeping through a plastic piece in your throat and on a ventilator at night, we spent most (if not all) of the summer sleeping on our couch.    As we would go to bed at night, he one day started singing to me as we would go to bed.   

You are my sunshine
My only sunshine
You make me happy
When skies are gray
You'll never know, dear
How much I love you
Please don't take
My sunshine away

 

    He would often change the lyrics up, my favorite one being "You'll never know dear, how much I love you, because I'll tell you everyday."   He was a sweet and tender man, who was never afraid to show his love.   Those who would spend time around us were witness to it as well, some would roll their eyes and complain that we still acted like newlyweds.   It brought tears to my eyes this week when my aunt Roxann talked about our love this week it reminded me of a card she sent us on our 20th anniversary.   She said "I admire both of you so much and I think you have a wonderful loving relationship.   You each strive to do all you can for each other, you are very selfless.   If I had been able to find someone to marry I would have hoped to have the kind of love you have."

     Looking up the lyrics today I discovered there is a second verse.      

The other night, dear

As I lay sleeping

I dreamed I held you

In my arms

When I awoke, dear

I was mistaken

So I hung my head and I cried

I miss my sunshine...

The Locked Door

     I was fairly young before I recall my first experience with death.   My paternal grandfather passed away when I was 10.   I was young and didn't really comprehend.   A journal entry of mine expressed sadness, but also excitement about being able to be out of school.   I remember small pieces of the funeral, including a song a family friend sang called "The Garden."   A couple years later a classmate name Yoshi Suzuki was killed in an accident in his backyard.   We weren't super close and I don't recall going to the funeral, but I've thought of him over the years and how tragic it was to die at a young age and of his family.  

      Just a couple weeks after my sixteenth birthday I remember bouncing up the stairs.   Summer was just starting and things were good.   My dad was sitting on the stairs with the long telephone cord trailing behind him.   Shortly after he called us into the formal family room which was only used on special occasions or for visitors.   Something was wrong.  I remember taking sitting in folding chair that was just inside door instead of on the couch.   He then told us that my good friend David had passed away while hiking in the Grand Canyon with his scout troop.   Our families were close and always spent Easter together camping.   His death hit hard and I remember how hard it was to accept.    I remember crying regularly throughout the next year and carefully trying to write down every memory that I could think of.  I also thought a lot about his family and how much harder it was for them to lose a son and brother.   The day of his burial was memorable, but I also remember the peace and assurance I felt that I knew I would see him again.   After the graveside service I remember walking behind some others (I believe some of his relatives) who were distraught and inconsolable because they didn't believe in a life after death.   I remember being was profoundly grateful for my beliefs.   I felt such confidence in peace in what I knew.   I would see him again one day.   Even so, his death hit me hard.   I've thought about him a lot over the years.   Of the experiences and milestones that he missed out on and the opportunities of memories lost.   Wondering how his life would have turned out and the things he would have accomplished.   So many questions that will go unanswered.      

   

     After such a profound experience at the age of sixteen, I thought I knew.   So, I was completely taken by surprise when over the past few months I feel like that confidence I had so many years ago vanished, seemingly overnight.  Plunged into a darkness I did not and could not anticipate.  I went from wondering what heaven was like and very cautiously trying to learn more, to feeling like it's all in our heads.  Does God even exist?  Or is it just some fantasy humans concocted to help us feel better and cope with death and the confusing world we live in?  

     So many others talk about the countless overwhelming experiences of peace and comfort after the loss of a loved one.  But I have not been so blessed and fortunate.  Instead I've been given silence and darkness...  and can't help but wonder... What have I done to deserve this?   I try to grasp onto any moments where I've felt that peace, but they feel like sand slipping through my fingers.   

     When I came across this quote from C.S. Lewis it described precisely how I felt.  While I wish no one had to experience the pain of losing a spouse or loved one, there is some comfort in knowing I'm not alone.    That someone who is clearly much older, experienced and wiser than I was plunged into a similar darkness after losing his wife of four years.   The quote comes from the book Grief Observed, one day I'll read it and find out more of his journey. 

    So that was a couple months ago... how are things now?   I don't know.   It's been a struggle to acknowledge and put into words how I've been feeling.   Plus I've just been trying to survive, so I have tried to not to think about it too much.   Not always successfully.   I still feel lost in the darkness, but it's not quite the same as it was in June.  My prayers still feel unanswered and I often wonder just who is in charge of chaos that is my thoughts.  

     Unfortunately July was also a difficult month for my parents.   My Dad was hospitalized with internal bleeding and needed five units of blood.   He's lucky to be alive, although recovery is a slow and frustrating process.   My mom said "Sometimes it's so hard to understand why this test has to be so hard."  I agree, it often feels so impossibly hard.   

 

   

EMDR

      I don't have much to say today.   June was a difficult month.  July luckily has been a little bit better, but August is peeking it's head around the corner and frankly I'm terrified of the months ahead.   

     This week I met with my therapist again and did my first session of EMDR.   It's a type of therapy that helps your brain process trauma.   I honestly don't really know a lot about it.   I first heard about it six years ago just after we had spent our first visit in the ICU.  A woman in our church, who happens to be a therapist, was substitute teaching with me the cute little three and four year old kids.   I told her a bit of our experience she suggested that EMDR therapy would be helpful.  We tried to get in to see her, but then life got even more difficult.   

     I found this quote a while back that I think describes  my situation pretty well.   We went through some intense stuff and grief especially of a sudden loss is also very traumatic.   

      Trying to protect me, my body has surrounded me in some pretty serious armor.   

     It's why seeing pictures of him and our time in the hospital can  instantly bring me to tears.   One day I hope to be able to see pictures of him and not cry.   

      But it's going to take time and a lot of patience and hard work.   Ugg...  

       

       

Heaven is...

      My silly brain.   It struggles sometimes do the simplest of tasks, yet wants and often prefers to try and answer life most difficult and unanswerable questions.   Ugg.... I can't get it to answer "what to eat for dinner", but instead it wants to try and answer ...."what is the meaning of life?"  Over the past several months I've asked several people the question "What does heaven look like?" and it's been interesting to hear everyone's response.   They have been quite varied, but here are a few of them.  

Overwhelmingly Beautiful

Very White

Green Grassy Hills with Picnics

Gatherings of Friends and Family

      For some reason for me, the movie that comes to mind is one called Defending Your Life, which I haven't watched in ages.  I don't think it's accurate where everyone is there to be on trial, but essentially I picture a large city where everybody has a place to be and things to do.   Where there are friends and family to be with, things to enjoy, but also things to be done.   People will go about their tasks, which often are varied.   Perhaps going to places of learning or beautiful concerts, but also involved in the details of what is happening here on earth.   Perhaps there is a place for all departures and arrivals.  Perhaps there is a big office building where people go to help with answering prayers.  All while surrounded by beautiful plants and flowers.   However it's not all some giant city like the planet Coruscant in Star Wars (had to google that, my Star Wars loving husband could have answered my inquiry in his sleep).   But also has beautiful places where one can go to be in nature.   

     Not just wanting to answer what it looks like I've also pondered a lot of other questions.   Like... 

• What do they do all day?
• Is there day and night?
• Can they sleep?   Do they?
• What does time feel like?
• Can they talk?  Or do they just by reading minds?   
• Are famous people who were famous on earth still famous or just normal?
• Does everyone look the same age?
• Are all angels skinny?   (We do talk about spiritual giants...)
• Do they celebrate birthdays, deathdays, holidays?
• Are there seasons?

      One of our good friends recently said "there better be golf".   Hmmm... I never thought of that.  Another friend said "I know our boys are up in Heaven having game night like all the time".   I had not thought of that either, but video games were a huge part of our life together.   Because of video gaming, my husband had friends from around the world.  

     The thing is that "heaven on earth" is different to everyone here, so it likely is there.   Each of us is unique in what that definition might be.   I think the one unifying thing is the loved ones and friends.  I'm still no closer to definitive answers, likely never will be.   But I do know one thing.  Being with my husband was heaven on earth, so if there is a heaven.... it is where my husband is.  

Mid Life

     When I was younger I remembered when my parent's and other family members celebrated "Over the Hill" birthdays.   Like any child I thought they were "so old."   Being forty seemed an eternity away, but well... here I am, already a few years in.   People always joke about a mid life crisis as buying an expensive car or somehow trying to re-capture their youth.   But then there is the deeper psychological side of inner turmoil about your identity, life choices, and mortality.   Mortality.   That's a hard one.   I remember the year my Dad turned 40 was a tough year for him.   His dad died passed away early in that year, but he also had several friends or co-workers pass away throughout the year.  I was too young at the time to really understand the difficulty that all of that meant.   

      Talking about getting older with my friend when she visited for my birthday I shared with her a statistic I had come across.   The most miserable age: 47.2 years old.  She lightheartedly said that "Oh, you peaked early".  I remember thinking that I seriously hoped that this was my rock bottom as well as "oh goodie, here I am bringing down averages again."  

    Speaking of averages, here are a few more:

• The average age that a woman becomes a widow is 59.
• One-third of women become widows before they're 60, and half before they are 65.

    Dreading living a long time without my sweetheart I was curious how many years on average I might live.   It varies depending on where you live but here in the US it is: 

• Male: 73.5 years   
• Female: 79.3 years

     My sweetheart passed away at the age of 48, so his mid life was 24.   We met when he was 25, so I guess you could say that meeting me was his mid life event.   I don't think he would call a crisis, although falling in love with me and waiting for me to come around was likely a challenge.   He would say it was a blessing and the best thing to ever happen to him.   I'm so grateful that he was patient in waiting until I was ready.   

     For my 40th birthday, we were firmly entrenched in a battle with cancer and trying to navigate a pandemic.   I spent it sitting in our vehicle outside the infusion center, wishing desperately that I could be inside with him for chemo.   Memorable for sure, and something I would do again in a heartbeat, because it would mean that he was still alive.   Cancer was so difficult and exhausting, but navigating grief... without him... most days feel impossible.   

     Hanging just inside that infusion room was a code chart for emergencies in the hospital.   He would often joke that he was a code yellow which at our hospital was  "A Disaster".   I would always tell him it wasn't true.   But if you apply this quite from Tom Hanks he was right... losing him was more than a mid-life crisis, a mid life disaster seems more fitting.   I'm grateful haven't lost everything,  but I lost the person who mattered the most and that changed everything.   

     I'd much rather that my mid life crisis was a fancy car.   But not so.  Instead instead I got a pile full of complicated emotions, endless worries about the future and an enormous task of figuring out and defining who I am.   Oh goody!  Growing older is lame.

Baggage

     Many years ago we wanted a weekend getaway and stayed somewhere at a local hotel.   We happened to catch a TV show called Baggage which we talked about it on occasion ever since.  It was kind of a cross between Deal or No Deal and well, most dating games.   It was hosted by Jerry Springer and apparently ran for 3 seasons.   Three potential dates would arrive, each with three different suitcases.   Each round they would open one and inside reveal their "baggage".   Each round someone would be eliminated and then in the next round a larger bag would be opened showing even more shocking insights.   After the third round the potential dater selected the person they would want to go on a date with.   However before that would happen, they had to open a case of their own.   They then must decide if they want to go on a date together.   

     Here's a few of the things that were in people's bags... (the cleaner ones)

• I poisoned my boyfriend
• I eat whole sticks of butter
• I cry every day
• I've never been wrong
• I have 15 living cats and 30 dead ones in my home
• I steal flowers from gravesites
• I've been engaged 10 times
• I am a cult leader
• I have a fascination with roadkill
• I practice witchcraft

    The more I think about it, it's pretty much like dating as an middle age or older adult, just more up front and blunt about it.   Because by the time you've reached middle age, you very likely have developed some weird habits, stories or quirks.   Or in my case, been through some seriously difficult things and struggle just to make it through each day.   The phrase "I am Newly Widowed" carries with it a lot of other implied baggage, likely way to numerous to count and often really random.   Such as "I regularly ask people about their funeral plans" or "I cry whenever I get in my car" or "I struggle making simple decisions" or "I'm working on writing my own obituary" or "I hide special boxes of cereal in my closet" or "I don't like quiet" or ... well... too many to count.   

    Recently at work they have been doing some shuffling.   A LOT of shuffling.   In the past 3 years I've had about seven different managers.   Which has been challenging, especially with everything going on with my personal life.   Difficult to know who to ask what questions and just who is responsible for what.  However with the most recent change, I've been grateful to join a team of people who are working on the same things as me.  People who I am hoping to learn from as well as also helpfully share some of my knowledge.   Recently, my new boss set up a meeting to allow us to get to know each other.   We started the meeting by introducing ourselves.    I kept it to just my work experience and enjoyed getting to know each other a bit better.   Then near the end of the meeting one of my new co-workers asked "What do you do for fun?"   My brain inwardly cursed and then went blank, until I finally replied, struggling unsuccessfully not to cry...  "Well, I'm a fairly recent widow and honestly am trying to figure that out.   The things that I used to do for fun aren't fun anymore and I haven't figured out what is."   I'm sure that's not the answer she was expecting.   I tried to lighten the mood by saying I like to sleep, or try to sleep for fun as well, to which everyone agreed that they also liked to sleep.    It sure did end the meeting on a bit of a somber note, but at least it's out in the open and they can choose to talk about it or not.     

    So while it's not displayed in fancy cases like in the game show, I've thought a lot about my baggage.   I carry it around with me everywhere I go, and struggle with what to do with it.   But I've hired a professional "baggage handler" who is helping me unpack, evaluate and process my things.   Hopefully compressing them in the process.  It's not a simple process, but I'm working through it.   I don't know for how long one is considered a "new" widow.   It likely isn't a defined passage of time, but instead when you finally reach a better place mentally.   It will take time, but I'll get there.   

Sedatephobia

     All this week I've been struggling and debating.  I had been invited to spend time with family up at my Grandpa's cabin.   It's a beautiful place and I have many happy memories there, but like many other things that wouldn't normal be hard, it was hard to decide to go.   I knew it would be difficult to be away from the comfort and safety familiar of home; even though I would be around people who loved me.   I had worked myself up to deciding that I would be up to staying for one night.  So when the aunt who was going to be my ride said she was going for two nights, I almost chickened out.   But I put on "my big girl panties" and said I would go.   I knew that if after one I really wasn't up for it, I could plead with her to take me back home.  But luckily it wasn't needed.   I was able to spend two nights.   

     Not sure how I would fill the time, since I wouldn't have internet or TV, I packed a bag filled with "what-ifs".  What if I feel like working on a diamond painting, what if I feel like reading a book, what if I feel like... I tried to prepare as best I could.  I didn't end up needing them and instead helped with other projects and also was invited to come along for a evening of kayaking that ended at sunset. 

     My biggest struggle was not something new, but something I was aware of.   Many years ago I encouraged my sweet husband to take a trip to visit family.   It was the first time in over a decade of marriage that I had ever been home alone.  We had previously only spent a handful of evenings apart and all of them was when I had been away on quick business trips.   I quickly learned that I was not a fan of being home alone, and especially not a fan of silence.   While he was gone, I always had the TV or music of some kind on.  Neither one of us tolerated being apart and he convinced his friend to come home earlier than planned.   While I don't know if I'd go as far as to call it a phobia, the fear of silence is called "sedatephobia".   It's something that has been a extra challenging since he passed away.  Day and night, I try to have something playing to fill the silence.   At the cabin, there was occasional quiet, but there wasn't a lot of silence during the day.   However nights were more challenging.   I had tried to be prepared, and I had a few things that helped, but I think next time I would do or bring more to help me sleep.   

    But, end result... I did a thing that most would consider easy, but was hard for me.  I did find myself smiling and laughing on occasion, which is another random thing that shouldn't be hard, but is.  However, I'm tired and looking forward to sleeping in my own bed tonight.