Not a Jedi?

   Whew... the past few weeks have been, well... lame.    I thought that if I could get through the 6 month mark that for a little while the waves of grief would be calmer.  But instead I feel like I suffered an emotional hangover and was taken out to sea to be tossed around a bit.   Losing any progress I may have made.   I've found myself incredibly grumpy over the stupidest things, especially emotional, and most days after finishing up work I question..."Is it too early to go to bed?"  Not that going to bed solves things.   Going to sleep and waking up are still some of the most difficult times of the day.  Those feelings of sadness, anxiety and nausea while familiar, are not comforting.   But finally this week somehow I've escaped the undertow and started the swim back to shore.  

    Meeting with my therapist this week was helpful, although when she said "You are still so early in grief" it was hard to hear and accompanied by a sinking feeling.   There is still so much to go.   :(   As a person who has always been a "solver" and strives to make things better, I asked for direction about what I should do.   I've often heard the term "grief work" and hoped she would have some profound advice.  She instead said there's not a list of tasks to complete, instead "grief takes time."   I guess I need to just keep hanging in there.   While just working and surviving each day might not sound much like a triumph, it is and I need to be patient with myself.    Reading quotes from Star Wars today has helped me feel connected to my sweetheart and if he were alive would for sure have lead to some fun and interesting conversations.  Oh how he loved so many things, especially Star Wars.   I think he would agree that with all of the difficulties we've overcome, that passing the test to be called a human and not a Jedi... that's not cool.   Being a Jedi with a light saber would be so much better.   

   

For a fun article about Grieving in the Star Wars Universe

So Tired

    This week I struggled to get through the week of work.   I arranged to take a day off in the middle of the week which was helpful.   However, I didn't sleep all well all week and I've been grumpy and tired.   The difficulty of awaking to a pounding heart and overwhelming loneliness, which had seemed to lessen for a time, decided to make a return appearance.   I felt like I was crawling across the finish line come Friday.   

     In what ended up being the last weeks of his life, there was this difficult balance between talking about what had happened during those two difficult months in the hospital and trying to move forward.   He remembered bits and pieces, and I remembered everything.   He had come so close to dying... twice, that I wanted to get a bit further back from that edge before talking about it more.    We did talk briefly about his desires for his funeral while in the rehab hospital, but tried to avoid the subject of just how close it had come.  Despite all that he had gone through, I remember him saying on multiple occasions how this wasn't fair for me and that I deserved better.   I disagreed each time with him and told him how much I loved him and would do anything for him.   He was the one who had been stuck in a bed for nearly two months with all sorts of tubes, if it wasn't fair for anyone, it clearly was not fair for him.   Yes, life was difficult and had been for nearly a decade, but it was possible because we were doing it together.   So very grateful that we were still together, but with a sinking feeling that that the Christmas season could be his last,  I wanted to make it as memorable as possible.   Little did I know that despite feeling like we were out of the woods for a short bit of time, he wouldn't even make it to Christmas.  It was memorable for sure, but not in a good way.    Life without him... now that isn't fair.   

      This weekend I had a good friend come visit.   I'm still in a survival mode of taking things day by day but  I told her my concerns about the coming months.   I've been through some difficult days, but I think the worst are still yet to come.   Because just like cancer, the difficult days are intertwined with what were once happy days.   His birthday now intertwined with memories of 911 calls, air ambulance rides and ICU.   Our anniversary now mixed with difficult conversations with Dr Sborov, impossible decisions and life saving chemo.   Not to mention Christmas.   It used to be our favorite time of year.   We loved it so much we would usually decorate on Halloween and leave up until Valentines.   It now looms in the distance like a freight train, threatening to run me over.   An entire season of difficult days.    Christmas on a Monday has been my favorite because it puts Christmas Eve on a Sunday and expands the holiday festivities into two days.   Wouldn't you know, this year Christmas is on a Monday.   Uggg.... We tried to think of what I could do or where I could go, but came up empty.   

      I'm normally am an optimist and a problem solver, but lately I find myself grumpy and irritable.   Stupid things bother me and then it bothers me that stupid things bother me.   I look at my life and myself and I don't recognize me.   

     I'm tired.  The numbness has worn off and without that buffer it's more painful and exhausting.   This quote I found is correct, grief is so long and complicated, and yet there is so much more to go.    

      I've always tried to end on a positive note in my blogs and I thought about just skipping this week.   But one day hopefully I'll look back and see how far I've come.    Maybe one day I'll have figured out how to rest my mind and let it heal.   But for this weekend it was a Saturday AND Sunday nap.   

     

     

      

Dew or Dew Not

    This week turned out to be tougher than I expected.   I thought if I survived the difficult weekend then I shouldn't have any super difficult days for a while.   I was wrong.   On Wednesday this week I woke up tearful for no reason and struggled unsuccessfully to hold it together.   I was grateful that I didn't have any work meetings to attend.   I did however have a session with my therapist.   We were going to get started with EMDR (a type of therapy to help heal from trauma and emotional distress), but instead just laid the groundwork so that we can get started next session.   Even without, I came out feeling completely exhausted.   Crying as I was trying to complete my work day, my sweet roommate could hear me and came in to check on me and give me a hug.   As well, two sweet friends reached out that day to check on me and were compassionate and understanding of my difficult day.   I'm grateful for their continued friendship.   Acknowledging that while they have sorrow when they think about him, it is in moments here and there, and that I face sorrow "every day and every moment."   I definitely missed my sweetheart this week, oh how I wish he were still here.   

    I did somehow survive the week.   I was completely worn out on Friday but somehow managed to have a somewhat productive Saturday.   But today I'm still tired and not really up for anything super reflective.   So instead I'm writing about about soda pop.  One of the things I did this weekend was to list the tall stash of Diet Dr Pepper that has been sitting in my garage since I stocked up on it just before he passed away.   It became his beverage of choice when all of the steroids and other meds caused issues with his blood sugar.   It was a way to help wash down all of those nasty tasting pills, of which there we many.   Someone picked up the soda and I spent time working in the yard.  When it started to rain I laid down in bed and listened to the storm, something we loved doing together whenever we could.   We always said that when it rained it was because he was being good.   As anyone living here will attest he's been being good a lot lately.   The day ended with a surprise visit from my parents and we were able to sit out in the backyard and enjoy the cool summer evening.   

      One thing I love about us as a couple is how we always loved to do and find things to make the other smile. One such way was that he loved soda.  When we were dating I asked him what his favorite soda was.   Then always made sure to pack Cherry Pepsi whenever we would go on a picnic.   For most of our early marriage he loved Mountain Dew.   So when they started introducing limited edition flavors (as early as 2001 with Code Red and then 2003 with Live Wire I believe) whenever ever I would shop at the store and see a new flavor I was always excited to get it for him.   However my plans were completely derailed in 2009 when he broke the news that he was giving it up.  Cold turkey.   He knew it wasn't good for his teeth.  I knew it was a difficult decision for him, so I supported him.   But I wasn't prepared for how difficult it would be for me.   Still to this day, even with him gone, I still see a new flavor and immediately think "Oooh!   I need to get that for... oh wait... never mind".   

    Later in our marriage I was able to find a unique soda which he loved.   It was a bit more expensive and harder to find so I always saved it for special occasions.   It was discontinued years ago and so the last four pack of cans that I found were something to be treasured.  I can't recall the event that we were celebrating or if it was just a day where he was feeling extra down or sick.   It actually could have been both as it was probably celebrating something with chemo and the ginger would have been calming to his stomach.  When I pulled out of the fridge an ice cold 1893 Ginger Cola and placed it before him, the look on his eyes and the smile on his face were of sheer joy.   He would often be frustrated at my desire to save things for special occasions, but being able to surprise him with a rare treat was something I loved to do to bring a smile to his face.   Goodness it was a tough balance, in hindsight I wish I could have spoiled him with every little thing his heart desired during those difficult days.   But I did the best I could.   The one remaining can was safely tucked away for another such day.   But I waited too long and the opportunity passed.   Now it sits on my desk as a reminder to try to find joy in simple things, but to not always be saving everything for a special occasion.   

     So while it may be something as simple as soda, it actually does mean something much more.  With each passing day, I'm afraid of forgetting the million little things about him and our life together.  Slowly little bit by little bit, my life is changing from one that we shared together, to one with me alone without him.   I'm grateful for the people who check in on me and are doing their best to help me fill the void, but dang the void he left behind is immense.  And no... that isn't a fat joke (inside joke for those who knew him).    He had a huge heart, full of love.   

    I guess if my brain still struggles to give up mountain dew, then I've got time to document my memories so that when they do start to slip away, I've got a place to go to refresh them.   

Amputated

      In both the widowhood blog by Catherine Tidd and a quote from C.S. Lewis I came across a very powerful metaphor that I've been pondering.

“The death of a beloved is an amputation.”

C.S. Lewis 

     While thankfully, we did not have to deal with amputation, all that we went through gave me empathy and understanding of the difficulty and pain that must entail.   The pain, the healing and the adjustment physically, mentally and emotionally that is required of both the patient (and their caregiver) must be described as immense and challenging.   A struggle that takes years to adjust to and not something that you can ever get over.   Prosthetics have come a long way, but they are require a lot of care and maintenance.   Simply put... a part of you is missing.  

     I found it very interesting that Catherine had it interwoven into her blog about loneliness.  I completely agree with her when she says  "I think that lonely is not a strong enough word."   Explaining that she can be in a room of people and still feel alone.   In the video from last week about emotional wellness he said.  "Loneliness won't just make you miserable, it will kill you."    Yet in grief, it's only one of the many things you feel.   

    I hear often from others of someone they knew who was a widow and how it took them a year to "feel normal" again.   But I've heard and read from numerous other widows that the second year is harder.   I can't help but wonder if it's because after a year many people feel you should have "moved on" and so the pain and loneliness are forced unground.   They've found the people in their life who they can turn to and but on a "normal" face for all the rest.   I already feel that pressure from well meaning people.  It's not helpful.   It does however make me even more grateful for the people in my life who lovingly inquire and patiently sit with me.  A recent article I read with advice for a young widow the first advice they gave was "Learn to love the loneliness."  Yikes!   I may learn to tolerate it, but loving it that's entirely different.   I think they may have chosen the wrong word.   Loneliness and solitude are two different things...

    Yesterday I survived a difficult milestone.   Six months since my sweetheart...  Six long, difficult, teary, lonely, sad and hard months.   When talking with my therapist earlier in the week I mentioned the anniversary.   She immediately said "Please tell me you won't be alone."   I had come up with some things that I thought could help me make it through the day.   Having someone to talk with and help distract me was something I considered but hadn't arranged.   I woke up that morning and my brain quickly started to think of the events of six months ago.   I was able to mentally push back and say to myself "Stop... that isn't helpful."   Luckily or perhaps providentially there was also a public television show by a man named Dr Daniel Amen on the TV.   A psychiatrist and brain disorder specialist who had some very interesting things to say.   I can't recall all that was said, but it was a good distraction.   He talked about how trauma and stress can physically change and age our brain.    Hmm... I wonder how old my brain would test?  

     Yesterday morning I was spent keeping myself busy with some of the distractions I had planned.   One of which included was pickup at Wal-Mart of some soil so that I could plant a rose bush in the near future.   It was the second time this week I had left the house.   The first time had been earlier in the week to pick up groceries.  During which I daringly had the radio on and the song "Spirit in the Sky" came on.   I was teleported back to the cemetery on that cold December day where this song had been played at my husbands request.  As well as the times that he had made the request when the song would come on the radio while we were driving.  Music can sometimes be a good distraction, but in many cases it's not.   Returning home, one of my sweet aunts reached out and offered to come spend the rest of the day with me.   While her visits with me often results in reflections about mortality and death, her companionship was a wonderful gift on a difficult day.   

    I learned last night that Ed Sheeran had a new album.   His song "Perfect" especially the lyrics "We are still kids, but we're so in love, fighting against all odds, I know we'll be alright this time"  I considered our song in our fight with cancer.   It was released in September of 2017, just as our lives changed forever.  I learned that his wife Cherry was diagnosed with cancer last year when she was 6 months pregnant and at the young age of 30.  He also lost his best friend and has struggled with the heaviness of life.   I couldn't yet convince myself to listen to the songs but was intrigued at what his lyrics might say.   These from a song called "Eyes Closed" 

No one is ever ready
And when it unfolds, you get in a hole, oh, how can it be this heavy?
Everything changes, nothing's the same, except the truth is now you're gone
And life just goes on

     As hard  as it is, life is going on.   But slowly I'm finding things that help easy the pain of the gaping hole in my life.   I desperately miss my other half.   He is my soul mate.   Life still feels impossibly difficult most days, but there have been days where the weight is lighter.   I can see small changes and recognizing that little bit by little bit I'm doing better.   

      I'm still terrified of the difficult anniversaries I have that will come in the next six months, but I've somehow survived the past six and so I'm sure I'll somehow survive the next six.    Our love sustained us both through so many difficulties, that I just need to figure out how to allow it to help me survive the future.

Terrible, Thanks for Asking

     Years ago when I was in high school I was having a particularly rough day, I was very worried about something that was well beyond my control.   Struggling through the day at school, just trying to make it.   Walking from one class to another, a classmate asked me a question he had asked me several times before.   "How are you?"  Amidst all my worries I thought for a moment and replied "Are you asking because you really want to know or are you just asking to be nice?"  He was taken aback and said "I guess I'm asking because I really want to know."   I told him about what was on my mind and he listened.   Our relationship changed that day, after that we were friends often chatting on the way to class.   

     I've thought a lot about that question a lot since then and my answer.   It's so easy to just say "Fine" and go about our day, but how often do we feel "fine".  So why do we lie about it?   I've found that when life gets tough, it's one of the most difficult questions to answer.  Not only because I have to do a quick assessment of if the person asking really wants to know, but then a moment of reflection to find an honest answer.   I'm very fortunate to have numerous people in my life that when they ask, I know they are asking because they want to know.   But the next part is tough, so tough.   It's tough to look inside and see what's there.   Am I tired, sad, lonely, discouraged, overwhelmed, afraid...?

     My friend who was here last week introduced me to one of her friends who lived nearby.   In just a brief introduction, that friend recommended a podcast/book by Nora McInerny.   Her key phrase is "Terrible, Thanks for Asking".   Nora had a miscarriage, lost her father and husband from a brain tumor all within a couple months.   Holy crap, that's a lot of heavy things all at once.   In addition to her book, and podcasts she also has founded a group called the Hot Young Widows Club.   When I looked her up, I had recognized her from one of her video's on YouTube.   She's honest but also has a great sense of humor.   Here's one of the videos I watched if you are interested.   

      

 

   In a world with a broken healthcare system, emotional health  is one area that is especially broken.   It's a subject not frequently talked about and often ignored.   Sadly, even at a top notch cancer hospital.   We were often referred to numerous other specialists and would occasionally interact with social workers, but we must have appeared "fine" enough that no one ever suggested that we both would benefit from finding someone to help cope with cancer and its trauma filled experiences .    I don't blame the hospital, or his amazing team.  I can't imagine the intense stress and emotional trauma that they themselves go through.   They likely don't have the support they need either.   It's just part of a much bigger, complicated problem.  One that is compounded by the fact that there is a stigma associated with mental health.   One of my aunts shared this video which I've watched a few times.  We are taught at a young age to take care ourselves physically, but not our mental health.   

     The loss of a spouse is considered the most stressful life event a person can experience.  On a scale of 1-100, it's a 100.   Yup, I agree.   It sucks!   After years of dedicating my life helping my sweetheart, that abruptly ended and my life shifted.   Much of my life is the same, I live in the same house, have the same friends, work at the same place.   But everything is different and it comes with a pile of emotions to sift through.   I'm the only one who can make it a priority to take care of me.  While I worry about how I'll survive in multiple ways, one obvious one I knew of immediately was emotionally.   I started looking at reviews and requesting to be added to waiting lists to get some professional help.   No surprise, it took months.   I've met with her a few times, each time we talk I've come away feeling a tiny bit better, although overwhelmed with things that I think I need to process in order to move forward.  Unfortunately she herself going through something and she's had to cancel half of my appointments last minute.  Ugg...I'm tired of life being tough...it's exhausting.   But each day I survive brings me one day closer to being reunited with the soulmate.   

 

    A sweet cousin of mine sent me a card and said that she also dreaded the question.  "How are you?"  When struggling with depression, she found it impossible to answer.   Her card instead said "How is your heart today?"   A question that seeks to find those feelings below the surface in a way that says "I'm asking because I want to know, because I care."   

    So how would  I answer that question today?   

    "My heart is sorrowful and lonely today."  

    What about you?   

A Time to Love

    Years ago when my husband was "only" battling a brain tumor, I had the great opportunity to have my best friend since fifth grade come visit.   We hadn't seen each other in years, and life had kept both of us pretty busy.   We were excited to be together, but I was a bit nervous about if things would be different.  We had both married and she had children, I had been spending the past few years navigating the health care system helping my husband and balancing a full time job.   We weren't the same people that we were in elementary school and I worried that we would have enough to talk about or enough interests still in common.   But those worries were unfounded and our week together was memorable and fun, just like the old days.   It was a great reprieve from the difficulties of life and something I looked back fondly on when things got worse... much worse.   

     Fast forward seven years.   It feels as if a lifetime has passed since then.   Cancer certainty has changed me and widowhood is kicking my butt.   I've been nervous and anxious about how to get through my birthday without my sweetheart.  Agonizing on what I could do and who I could reach out to help me through it.   So it was an answer to prayers when my sweet friend Leah asked if she could come visit for my birthday.   She tenderly asked in a way that I could easily tell her I wasn't up for it, but I quickly replied.   "That would  be amazing!"  On days when I would struggle with knowing what to do that evening or that weekend, I often thought ahead just a little bit further to an entire week where there would be someone with me to help me fill my time and my brain could have a much needed break from work.   I am so grateful to her sweet husband who also took time off work, and her boys who missed their mother while she was here.   It was a sacrifice for them I'm sure, but it was a huge blessing for me.   

     The week of her visit finally arrived this week.   Another friend helped me pick her up at the airport.   Her visit has been just what I needed.   She was completely accepting of me and my random questions and frequent tears.  Coming up with things that she thought I might do, but also understanding that I just preferred to stay in my pajamas and not leave the house.  Suggesting things to eat, but understanding when I offered her oatmeal.   We did adventure out into the world with some family to a beautiful place of peace.   I introduced her to cookie butter and she enjoyed baking treats to offer to guests that we thought might stop by on my birthday.   One night she even made pizza man.   (Not an attempt at a replacement for the husband I love and miss, but an Italian twist on a Japanese steamed bun).

    My birthday arrived and I still wasn't sure what I wanted to do.  She sat with me on the couch, talking about life (and death).   People sent cards, stopped by or messaged that they were thinking about me.  Each one often brought a smile.... and tears.  One side of my broken heart was filled with gratitude and love.   I have been so very blessed with such thoughtful people.    The other side of my heart however was like a bratty kid who didn't get what they wanted for Christmas and decided to throw a tantrum.   I miss my sweet husband everyday, but that loss feels more profound on holidays.   So unlike a typically birthday filled with balloons and cake my day was filled with smiles and laughter but also tears and sorrow.    We finished the evening by venturing out of the house yet again and spending the time hanging out with my brother and his sweet family.   Returning home she glanced over at the me on the couch to find tears streaming down my face yet again.   She didn't chastise me or make me feel guilty, she simply... loved...

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True friends aren't the ones who make your problems disappear. 
They are the ones who won't disappear when facing your problem.

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     I recently read a meme that explained that it is called the month of May because...

 it may snow

 it may rain

 it may be 70 degrees

or it may be 20 degree's

    Navigating grief is much the same.  While there may be seasons of healing, weeping,  laughing or mourning, often times these seasons all occur on the same day.  Sometimes the same hour and often share the same memories and moments.  It's difficult to know how to dress for the weather, just as it is tough to know how to "weather" the emotions.    

The Power of Touch

    When thinking of holiday's that without my sweetheart,  I didn't consider Mother's Day as one that might be difficult.   Yet as I sat on my couch today,  I looked up at just the right moment multiple times to see on the digital picture frame a photo that often comes to mind when I think of our first ICU stay.   It is a picture of him, holding his mother's hand.   The picture taken before his trach surgery, which occurred on Mother's Day 6 years ago, ironically also May the 14th.   I'm so grateful that I was able to capture such a tender moment.    Grateful also for the picture that I took later that afternoon where I was able to spend the afternoon holding his hand.   The feeling of hope in that moment was strong as a surgery which once terrified both of us brought freedom.  He was also given the gift of being able to breath, which is something that is so easily taken for granted.   

    While the the past six years have been filled with difficult memories, I strive to remember as well the blessings along the way.   Family, friends, nurses and doctors who were there for our journey.  Thank-you to everyone for being there at just the right moment with a hug, a text, a listening ear.   

      At one point when he was in the ICU, my mom was also able to come to the hospital.   I don't remember what was said, just the profound feeling of empathy.    She had suffered a stroke 6 years prior that changed her life forever.   Her time in the hospital and the years rebuilding her life have been difficult, she understands things that others might not.    

    Here I am now, 6 years later.   Also forever changed.   Wishing that I could be holding his hand, grateful for the many times when I could.