A First Time for Everything

So there is this phenomenon that comes with the loss of a loved one.  They call this “The Year of Firsts”.  In the beginning, I understood what it was but did not truly understand its impact on my life, my emotions and feelings, my health and my state of mind.  For those who don’t know, this phenomenon refers to experiencing recurring events for the first time without your loved one, (i.e. first birthdays, first anniversary – for marriage or relationship, and their passing, first holidays) a first for everything memorable and important without them.  This also applies to something as mundane as a timeline: the first month, first six months and the first year without them. “A first time for everything”.

My previous posts covered details of some of these so-called “firsts” in detail and in my last post I talked about some of the most difficult “firsts” as I was experiencing them.  I will tell you now that my most difficult “firsts” occurred in just these past two months.  The Holidays.  As i mentioned in my previous post, Halloween was a favorite for Maggie.  For me, this is the time that my emotional fortress I had been building the past nine months began to crumble.  By the time I had passed the Thanksgiving holiday, it was obvious, at least to me, that I was in a full blown downward spiral with no view of the bottom.

I was able to make it through Halloween ok.

I decided to attend a session with a grief support group just a couple of weeks before Thanksgiving.  Honestly I did not get much from it, except this:  I was not alone in how I was feeling.  The leader of the group asked all of us a question.  He asked if we were looking forward to the coming holidays or if we were dreading it.  The answer was overwhelmingly dread, of various levels and intensity.  My answer was this:  “If I could just go to sleep right now and not wake up until February, that would be just fine with me!”  Many others in the group reflected that same sentiment.

Maggie’s birthday always falls very close to Thanksgiving.  I was pretty well fine on her birthday.  I bought her a flower and talked to her for a while.  Reflected on a few of the past birthdays.  I managed through ok.

At Thanksgiving time I mostly felt out of place and out of joint with the entire event.  I felt like I was there but it was like I was watching the festivities unfold while hiding in a corner or watching it on the television.  I was there but I was not there, not participating or engaging.  Personally I just wanted it to be over quickly so I could just find a place in solitude to try and empty my mind, take my thoughts and feelings to a more happy time and place.

The Christmas holiday was the crescendo, or climax if you will, of my emotional downward spiral (Tchaikovsky’s 1812 overture rings in my head for some reason, with fireworks, cannons booming and all!).  Oh I tell you, this was so very painful for me!  I was completely decimated.   It felt like being on a plane that was about to crash to the ground and knowing that there is not a damn thing you can to about it.  I did all I could to keep my chin up, focus on new tasks, attempting to start a new tradition, making the festive meal as best I could, keeping some of the old traditions just the way we had always done.  This appeared to work for me for a while, but as the event wore on, I could feel the despair creeping up, closer and closer.  It was like a lioness about to spring on its prey.

Even now, just writing about it is invoking those same feelings again.  It is utterly overwhelming.  I need to stop for a moment.

Something new that I tried was I made candy for the first time ever in my life.  I made caramel pecan turtles all from scratch and apparently it was a huge success.  I called my daughter-in-law and my other son’s girlfriend and we made a day of it.  We had some fun together learning how to make this stuff.

We always have our Christmas meal on Christmas Eve and open presents.  For the meal I woke up early and started the fire in the smoker and got the ham started smoking (this can take 6 to 8 hours).  As the ham was nearing completion, i began working on the other food items, traditional food like mashed potatoes, gravy, baked beans, dinner rolls, etc.  I selected only a few items because I didn’t want a lot of leftovers that I would just have to throw out later.  I selected items from Maggie’s list of recipes.  In the past, she and I always worked together to make the meal.  Obviously this time was different.  The further along I got in making the food, the worse I started to feel.  I was really missing her being here to help.  Finally, all was complete, the table was set, we said Grace and began the meal.  I made it through a few bites and had to leave the table.  I went to my room, laid down on the bed and completely melted down.  At some point I had cried myself to sleep.  When I woke up, all the kids had cleaned up everything and put away the food for me.  I was very grateful for this but at the same time I felt terrible!  I felt like I had ruined the entire day.  I was very disappointed in myself.  They all reassured me that everything was ok.  God bless them!

The next day, Christmas Day, the kids all had plans with other family and friends, and that was just fine with me.  I stayed home in solitude and began to regroup my thoughts and emotions.  I was glad to have this time alone.  I began to feel a little better.  I did absolutely nothing except listen to music and watch a couple of movies.

Each passing day as I moved closer to the New Year I felt better and better.  For the New Year holiday I went to visit my daughter in the Boston area.  This was a very good trip for me and I felt fine.

I made it past the Holidays.  My year of firsts is now almost over.  Only one event left.  The day that Maggie departed us.  I am feeling well at this point and I believe I will get through that day ok, but we will see….

 

Life Can Be a Roller-coaster

I tell you, the ups and downs in life can be exhausting.  Its been a couple of months since my last post and a lot has happened in just this short time.  A lot of ups and downs.

On the way down from the highs of September, my step dad went to the hospital in late September.  He was diagnosed with late stage lung cancer and passed away about a week later.  I was there for him and the rest of the family.  I will be honest, I was not terribly upset but the event affected me more than I expected.  I was there for him but I could not get past all the familiar feelings and emotions I felt when I was doing the same thing with Maggie.  I was reminded of all the unpleasant memories, dealing with all the bad news, sitting there, waiting for the inevitable and knowing there is not one damn thing you can do about it.  All the helpless feelings returning.  The sooner I could get away from the hospital, the better I would be.  My little brothers and sisters were there and took it pretty hard, but I was glad I was there for them.  I have, unfortunately, some prior experience in how these things can go and I think this helped all of us in some way.  Still, it was a pitch battle in my own head to get through it.

Afterwards, I went back to work.  I work a lot.  Always traveling.  This gave me an opportunity to disconnect and reestablish some sense of normalcy.

My middle child, a son, married the love of his life.  It was a perfect wedding.  The weather turned out perfect so the wedding was outside as planned, with all the beautiful colors of fall.  It was another event with ups and downs.  I was so happy to be a part of the wedding and celebration but at the same time I was upset that Maggie was not there physically to celebrate this momentous event.  All the guests were great!  No one focused on Maggie not being there.  They trained all their energy and happiness to the happy new couple.  I was grateful for this as I was not in the mood to discuss or focus on my own personal feelings.

Fast forward a few days.  This is where the ride takes a short trip up and back down and then back up again.  I had made plans to reconnect with old friends from school again, attend a local annual festival, and while in the area, attend my father’s memorial service.  I finally had an opportunity to talk to my mother about many things regarding the past, gaining answers to long unanswered questions.  I had a good fellowship with her.  We talked about Maggie and compared the two relationships.  I was not surprised by the huge differences, but to hear my own mother make the comparison was eye opening.  I wont go into details on this, I will just say that I had the feeling that my mother wished that her relationship with dad was more like mine and Maggie’s.  This gave me mixed feelings.  In one way, it made me feel good that someone actually looked up to us, but it also reminded me of just how much I already knew of what I had lost.

I spent a day with a dear friend.  The next day I attended the parade at the local festival with all of the family.  After the parade, we all convened for the memorial service later that same day.  It was a great service.  It was refreshing to hear stories from people that knew him in the years after he had changed and gave his life to God.  This was obviously a very different person than the one I grew up with.  The last three years of his life were good years between he and I.  I just wished that he could have been like this for my younger years.  There were also old photos available.  Some of these photos were with Maggie in them so this made the whole event a little more emotional for me.

After the memorial service, I said goodbye to family and returned to spend time with old friends.  Once again, this was a great time!  For me, it always feels refreshing and rejuvenating to reconnect!  We visited, danced and reveled in the waning hours of the local festival.  Then I had to go back to work, but I left the whole experience on a high note and I was happy.  Then comes another up and down.

Halloween was fast approaching.  Those of you who knew Maggie knew that this is a holiday second only to Christmas!  She loved Halloween and would decorate the entire house, and the yard!  She had left me a letter to open on my birthday, October 7.  In the letter, there were the obvious lines, professing her unending love and her wishes for me to be happy.  She also asked me to be remember to put out the decorations for each holiday and enjoy.  This is a hard one for me.  My sons and I put out the Halloween decorations, but not like we did in the past, mostly because of an extended period of bad weather in the area.  But secretly, I was dreading it.  I just was not into it like before.  Sometimes memories can be a real pain.  Halloween was cold and wet, but we had many trick-or-treaters stop by, more than in the past.  Maggie would have been thrilled!  She loved greeting the kids in costume while wearing her own.  I made sure that she was still in attendance at the door, although no one realized this.  I think she would have approved.  It added a level of hidden creepiness that only she and I would understand and appreciate!

We have the next few holidays coming in short succession and once again I am dreading these even more.  Her birthday which always falls during Thanksgiving, then there is Christmas and New Years.  I am a bit tense and apprehensive over the next few weeks to come.  I’m sure there are more ups and downs to come during this time.  A part of me, a BIG part of me, wishes I could just go to sleep and wake up after it is all over.  I don’t like saying this.  I feel like I am disappointing her by feeling this way.  I don’t believe that I am as strong as she thought I was.

I get so obsessed with one thought these days.  The thought reminds me of a song by Garth Brooks.  The song is “What She’s Doin’ Now”.  I cant stop thinking about what she does these days, where in heaven she is.  I wish I could feel her closer to me than she is now.  Some of the lyrics edited for practicality:

Last time I saw her it was turnin’ colder
But that was nearly a year ago
Last I heard she had moved to Heaven
But where she’s now I don’t know

But there’s somethin’ ’bout this time of year
That spins my head around
Takes me back, makes me wonder
What’s she doin now?

Runs through my head a lot.  I hope this season passes quickly.  I really want it to be over so I can find a way to stay happy again.

 

Life Marches Ever On

I want to apologize for taking so long to put out another post.  It was my intention to post at least monthly but I guess I needed to take some time to focus on other things, or maybe I just got complacent.  Maybe the reality is that I actually lacked motivation.  Honestly though, I was purposefully avoiding it.  It is a hard thing to do to reflect on the past at certain times and I discovered that doing this would put me in a bad state.  I didn’t like this.  With that said, I want to sincerely apologize.

In late June I came to the realization that I was not doing a very good job of honoring what Maggie had asked me to do.  I realized also that dwelling on what had happened was beginning to have a negative affect on me.  I was moving toward self-destruct mode and I was determined to not go in that direction.  I took this time to reflect and focus on myself.  I am still doing this, evaluating myself, judging myself constantly.  I am asking myself hard questions daily.  I feel that doing this is forcing me to concentrate on what can bring me joy today.  I have some long term goals I can start to focus on again but I am still mostly focused on just getting through each day, hoping today will be a good day emotionally.

Finding things that bring you joy when you have to do this by yourself seems insurmountable, but I am discovering that it is not impossible.  I have stepped out and started to do some things that I used to enjoy.  I’ve been on a fishing trip with family, spent lots of time with friends, revisited some local attractions and some live jazz and country music and sporting events with friends.  I just recently attended a class reunion and I must tell you, this was very good for me!  I was so happy to reconnect with classmates.  It took a full week to get the smile from my face!  We all did a lot of catching up. I danced, I sang, I visited a very dear friend and teacher of mine, I visited family and many other friends during this trip.  It was rejuvenating and healing in so many ways!  Thank you so much to family, friends and the class of ’89 for helping me get back to the business of living!  “GO BULLDOGS!!!

There is always going to be those lingering thoughts and memories that come up behind me, tapping me on the shoulder.  They say “hey, remember this?  Remember the last time your were here?  Remember how happy you were on this day?  She was with you then.”  I have to ask myself the hard questions in these situations.  Can you find joy in this memory?  Sometimes the answer is “yes”, sometimes it is “no”.  Can you take this situation and make it a happy one again?  Can I be happy returning to this place?  If the answer is no, I let the grief come over me and pass, then I walk away.  This is unavoidable.  I make it a point not to revisit this until I feel that I can do so without feeling bad again.  If the answer is yes, then  I focus on how I can make a new happy memory.  I have learned that there is no shame in trying and failing at this.  I have also learned that trying and winning at this provides dividends in happiness.

One of my children will be getting married next month.  A very joyful occasion indeed.  He is a good man and she is the best partner anyone could wish for.  I am both excited and anxious for the occasion.  I am happy for them and looking forward to watching them grow together.  I am also very anxious about attending and watching them grow without Maggie.  I am most worried that some attendees will be less focused on the occasion and more concerned with how I am dealing with it.  I can appreciate their concern but I don’t want this.  This will be their day, not mine.  I want to be in the background, a spectator, enjoying the moment in my own way in the best way I can.

There are other plans that I have for the near future.  I want to go back to my home town again soon to visit family, friends and classmates.  I also have tickets to see one of my most favorite performers, George Strait, in January.  I am very much looking forward to this.  I have two tickets so I just need to find another fan that wants to go, preferably one who likes to dance.  I have some time to figure this one out.  I want to utilize more of my vacation time and go see some places I have not been to yet, I’m thinking Alaska, Hawaii or Grand Canyon.  I certainly have the means, I just need to put the plan together.  There are many things I want to do and things I want to experience.  My plan was to do all of this with Maggie.  If I can no longer do this with her, I want to have these experiences with someone I care about and will enjoy the experience just as much as me, and with me.  This was Maggie’s final and selfless gift to me.  She told me to move on and be happy.  I just hope I have the strength and the courage to do this.

My greatest fear is that I will become that solitary old hermit that hates everyone and everything, with nothing but bitterness in my heart, being that person that never gets past the loss and dies alone.  If I ever get to this point I think I would have to just end it all.  I want to live happy, not bitter and angry.  I think I am on a very good track to avoid this.  I want to live intensely and passionately, I just never thought I would have to do this without her.

I no longer fear death.  I will welcome it when it comes, but until then I plan to make the most of life and make it as joyful as I can!

Random Thoughts and Observations

Well it has been nearly five months now since Maggie has gone.  The days continue to tick away and I continue to try to find my way through the grief process.  I like to think that I’m doing better, doing well.  The surprise attacks of sadness and grief are becoming more infrequent.  Mostly these days I wander through various states of melancholy and foreboding.  As I have said before in previous posts, I travel most of the year for work.  This, I have discovered, has opened up a situation that not many have experience with.

I recently had to take a trip to Canada for work.  While I was there I got sick.  It was minor but still very unsettling.  It really sucks to be sick when you are traveling.  In unfamiliar territory and in a foreign country, finding healthcare can be challenging.  In the past, when this happened, I could rely on Maggie to help me through a situation like this.  I could just call her and she would get on line and help me find the help I needed.  Having that “home” connection was always reassuring and comforting.  Now I don’t have that.  This situation really freaked me out.  I quickly realized I was totally alone and I lost it.  The fear and anxiety was almost overwhelming.  Needless to say I finally was able to work out the problem and get back home to familiar processes and procedures and start recovery in relative comfort.  I hope this doesn’t happen again!

I still long for conversation with Maggie when I am traveling.  Sitting in the hotel with nothing to do, I would pick up the phone and call her.  We would talk for hours and everything would be ok.  I struggle with this now.  I end up calling numerous family members and friends to get through it.  Thank God for Family and friends!

I worry now about what would happen if something happened to me when I’m traveling.  How long would it take before someone knew that something was wrong?  I recently lost a friend and co-worker who lived a good, healthy life.  My friend very unexpectedly died alone and was not discovered for two days.  If my friend had someone, a close connection, could he have been helped?  Could he have been saved?  Could this same thing happen to me now?  One of my biggest fears is that something will happen to me when I’m away and no one will know, no one will be able to help.

I often wonder what Maggie is doing now.  I’m sure she is ok.  I’m sure she is happy and enjoying her new state of being, whatever that is.  My faith tells me she has no pain, no sadness, no despair or worries that we have in this world.  But I still wonder.  I wish I could talk to her, like before.  Give her a call or something.  I’m reminded of a country music song.  Part of the lyrics say “If heaven wasn’t so far away, I’d go for the day”.  If only…

I know that she didn’t want to leave us.  I know that she loved her life here and enjoyed every moment, good and bad.  Her life here was taken from her, against her wishes.  She was taken from us, against our wishes.  My faith tells me that there was a reason for this.  I just wish I knew what that reason is.  My faith tells me that none of us will know that reason until it is our time to depart.  I just can’t help but wonder why?  I want to know now!  I can’t help but feel a bit angry about it.  I am not angry with God but I just wish he could give me a little insight, a little hint even, as to why this was necessary.  She was so good.  She was so beneficial to all that she knew and loved.  She gave so much to this world that was good.  She had so much more to give to all of us.  Now we will never know what that is until our time comes.  The selfish part of me, the human part of me, is angry that she was not given the chance to reach her full potential.  She only got to live half of a life, and the human side of me feels that this is not fair.  My soul and my faith tells me that there was a reason, but that reason is hidden from me, from all of us.

In the end, life marches ever on, with or without us.  That is just the way it is.  Life finds a way to keep moving forward.  I get that.  I just wish my life, our life could have moved forward together, like we had planned it to, like it was supposed to be.  It is now my unenviable task, our task, to move forward without her.  “How do I do that?” is the ever present question on my mind these days.  How do I find my new path in this life?

Anger, or is it?

Lately I have been having these feelings of anger, or maybe I’m just mad or frustrated.  I’m not entirely sure why I feel this way.  Well I partly know why but these feelings are not typical in my nature.  I am a pretty easy going person and it really takes a lot to get me upset.  I don’t feel like there is any one BIG thing that is making me feel this way, I think it is a lot of smaller things piling up on me.  I am not upset or angry with anyone or anything in particular.  I feel this way toward my situation and circumstances.  Maybe if I list the things that are weighing heavy on me, maybe then it will help me identify the problem.  Maybe it will help to gain some perspective and control of it.  Break them all down and try to address each one, one at a time.  So here we go (couple of deep breaths):

• Angered by the clinical trial process that Maggie had to endure.  It was very impersonal and not patient focused.  They cared more about their procedure and protocol than they did about her.  Made her feel like just a number, a lab rat.  She was left feeling used and hopeless.  I was left feeling jaded, appalled, angry and hopeless.
• Upset that everyone seems to be going on with their lives, together, with their spouse or significant other.  They are making plans, doing things together, finding happiness and joy together, even fighting and making up together.  I’m stuck in some sort of limbo hell, with no clue which way to go or even how to begin to make choices for my own happiness.
• I hate being the “fifth wheel”.  Friends and family invite me to join them for outings and events and I go just to get away from the house and to be polite, but I end up sitting quietly, feeling awkward and out of joint, trying really hard not to make everyone else uncomfortable and failing at that.  I’m not used to being the odd man out.  I always enjoyed doing these things and joining others WITH MY WIFE.
• Worrying constantly if my adult children are taking care of the house, plants and pets properly when I’m away on business, which is most of the time.
• Frustrated with listening to others talk about their vacation experiences, what they did, where they went, what happened and telling stories about something funny or exciting that happened.  I sit there the whole time thinking ‘yeah, Maggie and I did that ‘ or ‘let me tell you about something that happened to Maggie and I’ or ‘Maggie and I were making plans to do that’.  I want to take a vacation but I don’t want to experience it by myself.  The idea of this feels like a waste of time to me now.  I want to share the experience, together, with her, or someone that would appreciate and enjoy it as much as I would.
• Angry that I feel like I have been cheated out of the rest of my life, a lifetime of happiness, of sharing a life with someone special, someone I loved with every last ounce of me.  I’ve been cheated out of making so many more memories, cheated out of growing old with the woman I love.
• Frustrated with not being able to establish a predictable routine with an unpredictable work schedule, paying bills, taking care of the house, the vehicles, taxes, pets, plants, the yard, everything.  I used to have a partner that helped with some of this. Now my partner is gone and I’m left to deal with it all, from a distance.  I don’t have full trust in my children yet in handling some of these things.  Some things only I can do anyway.
• Upset that I don’t have very many friends, close friends, that are near by that I could just hang out with on a regular basis or to just spend an evening visiting with face to face.  Talking with friends and family on the phone all the time just isn’t good enough.  Maggie had lots of friends because she was into so much in and around the community.  By nature of my work, I don’t get the opportunity to establish and maintain close friendships.  I have no social life to speak of.  Maggie was my social life and that was good enough for me.  I enjoyed a social life by proxy through her.  All I do otherwise is travel for work, meeting briefly with strangers and making temporary acquaintances, professionally of course, and then play catch-up on everything that needs done at home before I have to leave again.  Part of this I understand is my own fault though.  I am a bit of an introvert and I get mad at myself for being like this.  I wish I was more outgoing, more of a social butterfly, so to speak.  But I’m not.  I cant just change who I am.  I get uncomfortable around a bunch of strangers and find it hard to make casual conversation with people I don’t know and people I don’t know well.
• Worrying about holding myself up to Maggie’s expectations of how she expected me to go on.  These are personal things that I’m not ready to discuss publicly.

That’s just the short list.  That’s the big ticket items on the list.  Now, to find a way to address these one by one.  Divide and conquer maybe is a good way to start, but where to start and how?  That is the question I have no answer to.

I feel like I am ready to move on, ready to move forward but I really don’t even know how to begin.  I just know that I need to.  I’m not going anywhere until I do.

After reading over all of what I just wrote, I now feel like I’m just complaining, feeling sorry for myself, like I’m wallowing is self pity.  If I could stand next to myself right now I would probably tell myself to suck it up, you are tougher than this.  Stop being ridiculous.

I tell you, I am truly pathetic.

Time To Celebrate!

Let me say this up front!  The title may be misleading to some so let me explain.  The time has come to celebrate a life well lived, full stop!

Over the past three weeks, the family has hosted two Celebration of Life services and a Memorial Tree planting at the local nature sanctuary where Maggie and the family has volunteered thousands of hours over the years.

One celebration was hosted in the small community where she grew up and the other in the community where she had lived for the past sixteen years.

Maggie’s wish was that we would wait a while to have any celebrations.  She was always so thoughtful and forward thinking.  She knew we would all need some time to grieve and she also knew that everyone would not be able to enjoy the parties if we had planned it right away.  For me, I definitely needed that time.  Had I not waited like she wanted, there is no way I would have been able to keep my composure.  I would have been the inconsolable blob of tears piled up in the corner of the room.

As it went though, the celebrations and parties came at the right time.  Nearly everyone by this time had worked through the worst stage of grief and loss… The shock and the helpless feelings of total loss had time to burn down to a low simmer and folks were ready to talk, ready to share a Maggie story or two and laugh, ready to have a little fun in her honor, with her at center stage.  Oh how she would have loved it!  Everyone was laughing and telling some of their greatest memories.  The love and fellowship in the room was so thick you had to cut it with a knife just to get through!  Sure, there were some occasional tears here and there but the moment of sadness would quickly pass and would immediately return to telling another crazy and laughter filled story about Maggie.

Oh God do I miss her laugh!  She had the most unique and sincere laugh.  If you had ever heard her laugh, I promise you, you would never forget it.  She could be in a room with a thousand people, and when she would laugh, there was no mistaking that it was her.  Her laughter would brighten and fill the entire room.  Her laugh was intoxicating!

I had brought to the parties several of her personal and memorable things, favorite jewelry, photos, military service items, awards she had earned, her stack of degrees she had worked so hard to earn and were so proud of, many things.  Scrap books!  Oh my God the scrap books and year books were the best!  She had dozens of them, filled with everything from practically the time she was born until she became sick.  She kept everything memorable and thank God she did!  Everyone spent hours thumbing through them and talking, laughing and sharing!  I was envisioning her standing over everyone’s shoulders, telling a story to them about each item and laughing with them.  It was the best!  The events were heart warming and uplifting.

By the way, Maggie had insisted on her celebrations being costume parties!  That is just the way she was.  She loved dressing up and wearing costumes and for those that knew her, Halloween was a holiday second only to Christmas.  Maggie had definitely lived life to its fullest!  She always believed that there was no way you could be unhappy when you were wearing your favorite costume.  I still cannot fully grasp the number of lives she had touched over the years.  The love that everyone had for her was completely overwhelming.  I doubt that even she would have realized that either.  She was loved and cherished by countless lives.  Countless!!

In the week prior to the celebrations, I had the opportunity to travel to Maine, one of her favorite places to visit.  I visited the site of the Nubble Lighthouse, a place neither of us had ever been.  It was such a beautiful and pristine place.  So calm and serene.  I had no doubt she would have fallen in love with the place.  I decided immediately that I must leave a part of her here so I cast a small portion of her ashes into the sea at this site.  I believe she would wholeheartedly approve!

One of her sisters had shared some thoughts.  I would like to share it here and I will also close with it.

What makes a life? Some version of this question has been ever present in my mind since pancreatic cancer took Maggie on January 21, 2019. An answer came this weekend at her first celebration of life. Lifelong friends from work, church, and childhood (one who still had the BFF necklace she gave in 7th grade) joined our family to offer support and tell stories about our hero. We laughed and cried. As another friend said, a bittersweet reunion. If a life is made up of the kindness you share with the world to make it better, then my older sister achieved the ultimate success.

Back to Work

So here I am, 7 weeks “after” and I am getting back into the swing of things with work, or at least I am trying to.  I can’t say enough how important it is to have the support of friends and family behind you.  I honestly can’t say where I would be right now without everyone checking on me.  I don’t think I would be doing as well as I feel that I’m doing.

Just a brief background of what I do for work.  I do field service for the company I work for.  I work from home but under normal conditions I travel a lot…. A LOT!  Most of my time is spent working for days and weeks at a time, living in hotels and grabbing the healthiest meals I can find wherever I happen to be at the time.  Most of my time is spent working alone, sitting in my hotel room alone in the evenings, eating alone.  So my situation is kind of unique.

Before Maggie was diagnosed, a typical trip would go something like this:

I would get up in the morning and start getting ready to go to work.  I would always try to call her every morning to say “good morning, I love you and I hope you have a good day at work” and to let her know that I was leaving the hotel for work.  Depending on what time zone I happened to be in, it didn’t always work out so I would send a text.  I would then work through the day, she and I staying in contact through short calls and text messages, passing information back and forth, letting each other know what is going on or how to handle a minor crisis or to vent about frustration over something the kids did or didn’t do but most importantly to say “I love you”.  We said it all the time.  A lot of couples say it all the time and for some it can have less meaning, just something you say, like “hello” to someone as you pass by.  It was never that way for us.  We never took our love for granted.  When we said I love you, we truly meant it every time.  We even had a discussion about this very thing many years ago.  We both agreed that when we said it, it had true meaning behind it every time.  At the end of the work day I would text her or call her to let her know that I was done for the day and that I would be stopping to get something to eat and that I would call again when I got to the hotel.  This sounds weird to some people, some might say that it sounds like she was trying to keep tabs on me, controlling every aspect of my life.  This could not be further from the truth.  She never insisted that I call.  I did for one simple reason, common courtesy, because I did not want her to worry about me.  I wanted to assure her that I was OK.  After an evening meal and a shower I would sit down to relax and call her.  We would talk on the phone for an hour, sometimes two.  While on the phone together, I would be updating my daily reports or gathering information on the job I was doing, preparing for the next day.  She might be reading a book or typing on her computer, making dinner for the kids or doing something with the kids or maybe even just watching a TV show.  Sometimes we would be on the phone until late in the evening not even saying much at all.  Just listening to the sounds of life happening at home in the background was almost as good as being there.  Sometimes we would even fall asleep, forgetting to hang up the phone.  Next day would start the routine all over again.  That’s pretty much how it went every day until I would get back home.

Now things are obviously different.  Out of habit, I find myself absent-mindedly checking my phone several times throughout the day to see if she tried to call or message me.  I sit in the hotel room in the evening feeling the overwhelming urge to call her just to talk and share our day’s events.  Old habits die hard.

My employer and coworkers have been amazing.  Going above and beyond to help and provide comfort through this entire journey.  Two weeks ago, I finally went out on my first away trip since Maggie left.  I was very apprehensive about it.  I didn’t know really how it would affect me.  I was really worried that I would get out on the job and have a meltdown and not be able to do my job.  That would not have been good for me, for my employer or our customer.  This is where a former coworker who is now retired but still helps the company out from time to time stepped in and said, “I’m going with you on this one”.  I was so excited and relieved!  I had not seen him in more than a year.  Sure, we spoke on the phone once in a while.  He would call just to see how I was doing and how Maggie was doing.  He is a great friend and colleague.  Most all of my coworkers are like this.  We are all like a family and we care about each other.  Working on the road is not easy and we all understand how tough it can get for our families.  We all support each other and look out for each other even though we very seldom ever get to actually work together on the same jobs.  Having my friend and colleague with me on that first outing made me feel less alone, less isolated.  He knew this was going to be difficult for me.  My boss, my boss’ boss and the president of the company knew it too.  So they called my friend and colleague and not only gave him permission to join me but insisted on it.  We sat and talked, visited for hours every evening over a beer or wine and dinner.  Kept me occupied.  Kept my mind and my thoughts from wandering.  Kept me from focusing too long on my situation.  Kept my emotions from spiraling out of control.  I needed this more than I can say.  Having him there on the job with me proved something to me.  Well, it proved a lot of things and showed me a lot of things.  Mostly it proved to me that I can get back out here and do this and that it is possible to get through the trip successfully.  Like riding a bike, so to speak.  I now began to understand how far the company and everyone was willing to go to make sure I “got back in the saddle”.

I am blessed far more that I should be with this job.  Through this entire journey, they assured me that I need not ever worry about my job, telling me constantly to take whatever time I needed to care for Maggie.  There were times though still, where I questioned silently how far they really would let this go.  I mean come on, seriously, did they truly mean that?  Do they know that this could go on for a really, really long time!  The company I work for is the best!  My coworkers are the best!  Working for a company that goes to these lengths is nearly non-existent these days.  They have the highest values for their employees and they care for them.  I will never be able to thank them all enough.  Most other companies today would have likely cut me loose once the FMLA, vacation time and extended unpaid leave ran out.

Now I am on my first truly solo trip since Maggie left.  I am feeling pretty good.  I’m still nervous about what could happen.  I’m trying really hard to be conscious of how tenuous my mental stability is right now.  I am on my guard more than ever, watching out for and avoiding the triggers (and the possible triggers I have yet to identify).  I have options to fill the gap in the evenings when I used to call Maggie.  I have her blog I can write in, I have a book, there is the exercise room in the hotel, I can call family or friends.  I have activities like these to keep me occupied.  Sitting alone in the quiet and doing nothing is the absolute worst thing I could do right now.  I know that this is not fool proof and that I am probably going to have some bad moments once in a while and that it will be unavoidable, but at least I have options.  I have a game plan.

Getting back to work feels good.  It feels like things are closer to normal again.  I have always loved the work I do now.  It is satisfying, it is challenging, it is rewarding and it keeps me sharp.  Somehow it is therapeutic.  Somehow it is helping me feel better.  My biggest challenge now is finding more and different and creative ways to fill the gaps left from the old habits.

Grief… Oh, Good Grief!

Written by Maggie’s husband Charles.

Grief, that dreaded word.  Webster’s defines it as “deep and poignant distress caused by or as if by bereavement”.  My personal experience tells me that the definition is much more complex and Webster’s does not do it justice.  But how do you truly define it?  I don’t think anyone will ever truly define it.  We all experience grief in a general sense but for each person, the details of the experience is vastly different.

For the first week after Maggie’s transition from this world to the next, I was overcome with an indescribable feeling of deep sadness, total loss.  I spent hours, days, wandering about the house, looking for signs, signals that she was still here.  Turning the corner into the next room or sitting in a chair to look over my shoulder and EXPECT to see her there with a questioning grin on her face.  But to no avail.  Reminded once again of the loss, the absence, the solitude, the sheer loneliness and isolation.  Sleep came in bits and pieces, loosing track of the time or even what day it was.  Eating to sustain myself was an enormous chore, struggling to swallow a bite between tears and the ever present massive “lump” in my throat.

By the end of week two I began to explore different ways to get my mind on other things.  I discovered that if I could keep busy with tasks or a small project, this would bring some very temporary relief for the grief.  I would concentrate on two or three tasks for the day and focus on completing them that day.  Tasks like laundry, dishes, cleaning or organizing one room or a bookshelf, fix that damn light fixture that’s been a problem for months.   The lack of motivation is my greatest enemy here.  I have days that I don’t even want to get out of bed.  I don’t want to do anything but think all day, which is not good.  I have to fight myself, force myself to get off my ass and do something, anything.  At the end of the day, if I don’t feel I have been productive, I feel even worse.

Entertainment is another temporary distraction.  Going for a walk when this God forsaken winter weather would cooperate, playing several games of pool with myself in the basement, going for a drive and listening to music.  Music is a tricky one though.  I quickly found that listening to familiar music, music that I like, that she liked, we liked, would set me off and put me in a bad place.  The words and lyrics of familiar songs would absolutely destroy my emotional state.  I listen to classical music and native american flute music now because it is pretty safe and I like the soft and soothing movements, no words or lyrics.  TV and movie watching is another activity but I have to be careful here too.  No sappy love stories or favorite shows and movies we enjoyed together.  I stick to comedies, thrillers and mysteries.  Too much of this though is not good.  I easily waste an entire day and then feel bad for getting nothing done.

Reading is another good way to escape, but I have to be careful of the subject matter.  I don’t need to be reading anything that may affect my emotional state in a negative way.

It is all a very delicate balance, trying to protect yourself from an unexpected meltdown.

Meltdowns.  Let me touch on that briefly.  These damn things come from nowhere and everywhere and very unexpectedly.  I can be having a good day and suddenly something will blindside me, catch me off guard.  Something unavoidable.  Its like a panic attack but a little different.  Or maybe it is a panic attack, who knows.  I just know that when it hits me, the sadness is indescribable.  I’m on my hands and knees, trying desperately to draw a single breath.  The tears and sobs are flowing like a river.  My mind is a total blank.  All I can feel is total despair.   Afterward, I am completely exhausted, physically and emotionally.  I have been lucky to have my sons and there girlfriends around for support and comfort when this happens.  I don’t know how I would have pulled myself out of it alone.

It has been five weeks now since Maggie has gone.  I feel that I am more in control of myself now but make no mistake, the awareness of the fragility of my emotions is ever present, and I remain on guard.  I am working toward getting back to what most people would consider living normally again, but this is relative.  What will be my new normal if I can ever get past this?  Only time will tell I guess.

Evening time is always the worst time.  The time of day that you start winding down, trying to relax before bedtime.  This was always our time.  We would sit and share the experiences of our day, discuss tomorrow’s plans, goals, just talk and share.  Enjoy each others company, love each other.  That is all gone for me now.  I’m now left alone with my thoughts and the emptiness.  Waiting for exhaustion to set in so I can hopefully get in a few hours of sleep.  Meditation techniques are of some help in this new evening routine but by no means is it fool proof.  Some nights I am so full of thoughts and grief that I just can’t meditate.

Lately I have been increasingly frustrated with people.  I will need to explain this.  I mean no offense to anyone with what I’m about to say.  We all have our reasons, known or unknown, in how we deal with grief and others that are grieving.  In the beginning, everyone, friends, family, acquaintances reach out to console and comfort.  People reach out, talk to you, try to help you through the grief, but this does not last long.  I have reached out to some that I felt comfortable talking to (which is not many) only to find that they don’t respond or can’t.  They have distanced themselves from me.  I can only deduce that they have become uncomfortable with my grief and depression.  Think about it, who wants to spend hours talking to someone that is sad and depressed all the time?  It is not really healthy.  The depressed person can bring you down too.  In this respect I get it.  No one wants to spend hours or days around a depressed old guy that can’t seem to get his head together.  Others remain distant because they simply do not fully understand what you are dealing with and are worried that they might make you feel even worse.  This is understandable.  Even I have been guilty of this in the past, many times.  Now I understand more.

For me, it helps to share my thoughts and feelings with someone I trust or am comfortable speaking to (which once again is not many).  I have spoken to a couple of others who have recently experienced a very similar situation such as mine but this can be dangerous for both.  Our responses are all over the board, depending on the day or their emotional state or mine.  The conversation can be dicey and fragile.  But when the conversation takes place, both have a much deeper understanding of what each other is feeling, because we are both going through it.  The conversation is very emotional and upsetting but at the same time it is also helpful in the healing process.  By virtue of the similarities though, these conversations are very infrequent.

Suffice it to say that ultimately we are left to deal with our grief largely alone.  Once the well wishes and the condolences are over, you are left to try and move on alone.  It would just be nice to have someone to talk with when you need it.  Some say “go talk to a therapist”, ok sure, how am I going to pay for that, and furthermore it can take months to find one that is best for me, and further still, finding one I can also feel comfortable talking to.  Friends and family, when they are willing to talk, make the best therapists in my opinion.  Getting them to talk when you need them to talk is another matter.

I feel that continuing Maggie’s blog with my thoughts and feelings is sort of like a therapy for me.  It is the next best thing in my opinion to getting my feelings out when no one wants to talk.  It’s just one little piece of the puzzle we call grief.

I will be up front with you, I have no answers here.  Only my thoughts and feelings, what appears to be working for me right now and what is not working.  Nothing more than that, right or wrong, they are just my thoughts and feelings and opinions.

My Race is Run

Hello to all.  This is Charles Jackson.  I am Maggie’s husband.  I am attempting to provide an update to Maggie’s blog.

I wish to inform all who are following her blog that Maggie has passed beyond the bonds of this world.  My heart is utterly shattered and I am very sorry to bear this bad news.

It is my plan to continue Maggie’s story through her blog from the perspective of myself, her caregiver.  Please forgive me for any typos, word usage, syntax, or any other errors as I am not the writer that she was.  I hope to keep the tone of her blog as she intended it, raw, real, informative, compassionate and inspirational.

Maggie met her battle with pancreatic cancer with the same ferocity that she met every challenge in her life.  Never give up, fight to the bitter end, always strive to find another way, never stop researching and looking for answers and the truth, always do the best that you can and do, even more if possible.  Persevere and continue on until you utterly cannot.

Maggie continued on with her fight for 15 months beyond what the oncologists expected her to endure.  There is an entire lifetime of dialogue that I could provide from my perspective regarding her journey, but I will not, cannot do this now.  There is just too much information and emotion to attempt this now.  More to follow on this I assure you.

I will simply end this post with documenting her last few weeks.  I must warn you, the following may be difficult to read but it is real, it is raw and it was her intention to document all of it.  I am simply trying to honor that wish.

Maggie had developed an ulcer in her duodenum due to the tumor on her pancreas rapidly consuming the duodenum.  This was discovered in October of 2018 and it was bleeding.  The surgeons embolized the main artery  to this area to attempt to stop the bleeding.  For a time this appeared to have worked but inexplicably her hemoglobin numbers continued to slowly drop.  Over the next few weeks she required numerous blood transfusions to try and increase her hemoglobin levels.  In late November, a few days after Thanksgiving, she awoke to a severely swollen left leg.  I immediately took her to the emergency room where it was discovered that she had developed a DVT (a blood clot) in her leg and that some of the clot had broken loose and ended up in her lungs in very small pieces.  The blood clotting was news to both of us because no one had told us until now that this is common with cancer patients of all types, particularly for pancreatic cancer patients.  An IVC filter was implanted to stop any further blood clots from passing to her lungs and brain.  This worked but The IVC filter disqualified her from the immunotherapy clinical trial that she was on.  More on this later.  After a few days in the hospital after the IVC implant it was determined that there was nothing more to be done.  No clinical trials available, nor were there any that she qualified for due to low hemoglobin.  She and I and her oncologist decided that the only option left was hospice.  Keep her comfortable and hope that the situation improves.

Maggie continued on through the holidays with relatively good quality of life, visiting the farm where she grew up and entertaining family and friends at our home.  She would drift in and out of sleep frequently during the visits but she and everyone else did not care.  The important thing was that they were there and she could engage in the laughter, jokes and conversation right along with them.  Very good times indeed!

Early in the morning of January 20th of 2019, Maggie awoke to severe nausea and began expelling large quantities of blood.  This was a sure sign that her ulcer had ruptured and was bleeding freely.  The tumor had completely consumed her duodenum and created a blockage, causing the rupture.  She continued to fight, trying to eat and drink even though she had absolutely no desire to.  To no avail, nothing was getting through.  Everything she took in would sit in her tummy for a few hours and then come back up with large quantities of blood.  She became tired and weak.  At no time was she ever in any pain.  The hospice team did an amazing job of providing all that was needed to prevent pain and provide comfort.  All she experienced was occasional nausea.

I called all family members early that morning and they all came to our home and rallied around her.  We all talked with her, laughed with her, provided her comfort and most of all let her know just how much she was loved.  Later in the day that Sunday she was very comfortable and relaxed.  She slept most of that time and would awake long enough to take medication.

By late evening, the entire family had decided to stay the night in the home to help provide comfort and support.  I gave her medication at about 10pm and by 11:30pm everyone was settling in for the night, all the while Maggie was sleeping comfortably.  I slept beside her on a cot in the living room, she sleeping on a hospital bed provided by the hospice team.

At 4:30am January 21, 2019 I awoke to her breathing oddly.  I turned on the lights and tried to arouse her but she did not respond.  She lied there sleeping comfortably just as she had been for the past several hours.  Another family member awoke at the same time and ran through the house waking everyone to come and be with her.  The entire family surrounded her, held her hands, gently stroked her head and comforted her, spoke to her, told her how much she was loved, told her that is was ok to let go.  No pain, no struggle, only peace.

At 5:45am January 21, 2019 I was by her side holding her hand, the family all around her.  Literally with a smile on her face, she took her last breath.

She left this world exactly the way she wanted to, in her home, with all her family around her, me holding her hand, pain free and in her sleep.  She and I had spoken about this moment many times before.  I would like to tell you that we did our best to prepare for it but you can never fully prepare yourself for this.

For her part, I believe she she felt she was ready and it was time.  She was at peace, knowing she had no pain, all of her family with her, and me by her side.

For my part, I knew this day would come and I did my best to prepare, anticipate, provide what she needed and ensure that her last moment was just the way she had imagined.  I believe I succeeded in that, but my struggle continues.  I am honored and humbled that I was able to help her complete her journey in this world.  The sadness and loneliness is almost too much to bear.  Her pain has ended, mine has only just begun.

More to come.  Stay tuned……

 

Hospice for the Holidays and Comfort

My husband and I decided it was time call in hospice. I was feeling worse each day, and my husband was experiencing caregiver fatigue. My kids were at a loss as to how to help me.

Hospice jumped in the second I requested them. They evaluated my condition, made calls to insurance companies, and ordered equipment for setting up a mini-hospice house inside my home. The obective of hospice is to provide opportunities for the patient to experience continued quality of life, to give a short break to the primary caregiver, and to present new strategies to support and encouragement.

Everything happened so fast. Two hours before I was released from the hospital hospice met with me to discuss my needs, and when I arrived home everything was set up and ready to go. I was provided with a hospital bed, commode, wheelchair, oxygen tank, and a bag of emergency hospice drugs. There was little they overlooked. I appreciated the supplies and support, but I was also saddened that my home was turning into a hospital room. However, I was home, which was important, but more importantly I was going to get to spend a week on the family farm.

There was a lot of nervousness about my trip to the farm. Later, I was told by several people they did not think I would survive the trip. The same thought had crossed my mind too, but I was determined to see the old farmstead I helped my parents create.

I spent a lot of time at the farm swapping  to stories and visiting a lot of family. These and petting a rooster, snapping pictures of cows, and feeling a peace so deep it could still your breath are what I’ll treasure.

Not only did I survive the trip to the farm, but I was refreshed and at peace with my diagnosis. This is not what I planned for my end days. I thought I would have another forty years of work, mistakes, successes, grandkids, and retirement. Instead, I will probably die before the end of 2019. It makes me sad, but I’m at peace.

However, I’m still here, and nobody can explain why. So I shall find joy in all things, and I would challenge you to the same.

Hospice has been a lifesaver. Tomorrow, I meet an art therapist to help me find creative outlets while I battle for my life.

I am MaggzonMorphine, and I am young. I am heathy, and I am beating the average.