Conversations with a dear friend- “How were you able to get through John’s death without therapy or meds?”

A few days ago, I had a great conversation with a dear friend of mine.  The miles separate us, but we talk almost weekly on the phone and I consider her to be one of my closest friends.

We talked about old times and new and how crazy the world is and how life can be so hard sometimes.  She asked me a question that I didn’t really have to think too much about to answer- she said something along the lines of –

“How were you able to get through John’s death without therapy or meds?”

In short- my horses…. my animals…  Yes, I have a son and my answer was my animals.  I hope that doesn’t make me a “bad” person.  But the reality was if the need arose somebody could take care of my child and raise him to be an upstanding young man.  The routine of caring for horses involves two daily meals… every day… I couldn’t stay in bed and hide under the covers… the horses needed fed.  And then… when I spent time with my horses… for that short time, I wasn’t a grieving widow… I was just spending time with my beloved animals.  I love my son to pieces, but children often aren’t very loving and caring towards their parents and can be sometimes downright rude and nasty (luckily, mine is a pretty good egg- most of the time, but they all have their moments).  Our pets usually love us unconditionally and forgive us of our problems without holding grudges.  For me, the peaceful love and bond with my horses helped me to make it through the darkest days.  It’s easy to feel better when petting a purring cat, listening to horses eat, and just in general spending time with your animal friends.

Losing a beloved spouse leaves you in one of the darkest places.  In my case, I found myself very much alone… I don’t know if it was me, if people don’t know what to say- so they avoid.  In the case of the fire company- they’d done their job and helped “their brother.”  I wasn’t “a brother.”  Maybe I even pushed people away… I didn’t think I did, but I don’t remember.  And then there is the awkwardness of “family” who really isn’t family anymore… invites to functions ended… again… I don’t know if it was me or them.  If you haven’t lost a spouse you can’t relate to the depth of grief and the emotions that occur and everybody experiences grief differently.

All of that being said… when John was ill we had a lot of support and closeness from the fire company and from friends and relatives.  That ended and I was alone… very… very… very alone.  I found myself looking to the sky and seeing the intense blueness… the white puffy clouds… the beauty in a sunrise and sunset.  Every day had the similarity of the sun rising and setting… and life goes on.  Yet at the same time, every day is different and unique and beautiful.   Rather than dwelling on the darkness and emptiness in my life, I looked towards the sky, listened to the birds, and was searched for the beauty that life holds.

Online support was also amazing.  In my case, I can only think of one other person my age who was a widower and by John’s death he had been happily re-married for a few years.  I didn’t know of any young people with young kids who had lost their spouses.  I felt like an outsider in so many ways.  But, the internet is an amazing thing!  I now know a lot of people in my shoes and we’ve banded together to support each other.  The knowledge that you weren’t completely alone and the ability to find a “wid” friend at all hours of the day and night is comforting.

For me medication wasn’t a route I would have considered.  To many, better living through chemistry is perfect.  In my case grief was something I had to go through… as raw and as painful as it was… it was an experience that I had to experience.  Everybody has what works for them… if medication in the answer then great!

If I’d had a grief group available that would have worked for me, I probably would have gone.  But in my experience grief groups aren’t for a one year old to be disrupting and paying for a sitter for me to attend a grief group wasn’t in the budget.  In addition, any grief group met at a time when I was working and I couldn’t exactly change my schedule at that point.  When John was sick, I had went to a therapist a few times and found it a complete and utter waste of time… I didn’t need a cocked head and sad eyes and the advice of “find a mother’s helper.”  Again, therapists are a very personal choice and there are ones you click with and ones you don’t.

As some contacts disappeared, others emerged, some friendships strengthened more, and  kiddo and I kind of just do our own thing and I do my best to instill in him what a great man his father was and how proud he’d be of him.  I’ve learned that our lives are ours to live or to not live, the sun rises and sets no matter what you do, nature always has impressive an amazing beauties to behold, and to quote Winston Churchill, “There is something about the outside of  a horse that is good for the inside of a man.”

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Why is it that humans are so good at congratulating and suck at consoling?

Some promotions were announced today, which resulted in a number of “Congratulations!”  “Well deserved!” and “Couldn’t have happened to a better person!” that rang through the air.  Smiles were shared and happiness abounded.  
That same day, I talked to someone who had just lost his wife.  He sounded amazingly with it, but I could hear the hurt and pain in his voice.  I told him how sorry I was and explained that I was a widow.  I thought how tragic to lose a spouse right before the holidays.  I thought of how his life will never be the same.  He thanked me for talking and for understanding.  He said that nobody understands what he is going through and it was nice to talk to someone who gets it.

Later removed from the situation, I contemplated… how is it that humans in general are so great at lifting each other up with happy events– like promotions, marriages, new houses, and babies… but, when it comes to being there when people are at their lowest… be it death of a loved one, loss of a job, abuse, and drug addiction, etc.  most people walk away.  I know I’m not always the best friend either and there are some things that I purposefully remove myself from as a self protective feature.  But when it comes to being that shoulder that is needed… why is it that there are so few people who stand beside thorough thick and thin?  Why do the masses take part in celebration, but only the few stand beside those having rough and rocky times?

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Lesson in perspective

At work, we were part of a contest for a food bank.  Boxes and cans were arranged to make “art.”  For several days, I walked by the finished completion and could not for the life of me figure out what it was.  I thought maybe it was reference to a movie or kids’ show that I wasn’t familiar with.  I didn’t want to display my ignorance with modern culture by asking.

Last week, they sent out a photo of our entry.  Looking at the entry I immediately recognized it to be a lunch box with a juice box, a sandwich, and a letter from Mom.  It all made total sense and was crystal clear.

But, yet walking right by it everyday, I wasn’t able to step back and get a true perspective.  Funny how life can be like that.

The design close up and from a distance reminds me of my travels through widowhood.  In the early stages, I was spending every day just trying to make it to the next day.  There wasn’t the view of a week out, a month out, next year…  Now even four years out, I don’t have a good view of what the large picture looks like.  Each day is overflowing and has the workload for two full time employees but the staffing of one.  Somewhere comes the acceptance that there will be things that don’t get done and that is life.  Life is a learning experience.. and widowhood is like being thrown into the middle of an ocean and asked to swim.  I don’t know of any widows who haven’t came up with their share of saltwater in their lungs.  Hopefully, some day, I’ll get the swimming down.

I often get the comments of how impressively I’m handling things.  Nothing about my life feels impressive… and those people haven’t seen my house, overgrown yard, or weedy fields.  But the important things are that the child is happy, thriving, doing well in school, and learning how to be a good citizen.  The critters are well fed and happy.

In my life, the reality probably lies between the two perspectives.

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NIH and the Government Shutdown

Across my news feed in Facebook  this article shows-

8-Year-Old Cancer Patient Among Those Affected By Government Shutdown

October 3, 2013 5:35 PM
maddie major

BALTIMORE (WJZ) — Every week, hundreds of patients, including children, are admitted to new clinical trials at the National Institutes of Health. Now many are losing hope as the government shutdown continues.

About 200 new patients are admitted to these trials every week. About 30 of them are children. Of those, about ten of them are cancer patients.

 Maddie Major doesn’t look sick at all, but this week, her leukemia came back for the fourth time.

“I hate when people cry,” Maddie said.

But her mother, Robyn Major, has reason to. The clinical trial Maddie now needs cannot be approved by the FDA because the FDA has been shut down with the rest of the federal government.

“I am completely blown away by how callus and how carelessly they’ve just kind of used us as their pawns to push their own agenda,” she said.

Robyn says Maddie’s cancer, pre-B cell ALL, is curable in 90 percent of the cases. Her daughter is in that 10 percent category. Six months ago, she went through a clinical trial that worked. Because of her relapse, she’s scheduled to have it again. Now, it’s up in the air.

“For Maddie, this is truly life or death. This isn’t a game. This isn’t pushing one ideology over another. This is my baby’s life,” Robyn said.

Sick people hoping to join clinical trials at NIH are now being turned away because 75 percent of all NIH employees are being furloughed. Those already enrolled in clinical trials will still receive care.

“The lab animals at NIH are being taken care of, but if you have pediatric cancer, you aren’t,” said Congressman Andy Harris. “I would hope we c ould agree that they should be.”

While they act like children, they should take a cue from from child and act like her. She’s eight, and she is showing maturity beyond any of them,” Robyn said.

“Love. My only answer is love,” Maddie said.

Just two weeks ago, Maddie and her parents visited Capitol Hill, urging lawmakers to provide more funding for pediatric cancer research.

About 75 percent of NIH’s employees, or about 15,000 people, have been furloughed.

When you have an aggressive form of cancer, you can’t wait… you don’t have months or weeks to wait around to make decisions… to act. In 2009, my 35 year old, career firefighter husband was diagnosed with stage four melanoma. NIH was our last good hope to try to fight. NIH was making huge strides in melanoma treatment and had some treatments which were way more successful at giving a lasting remission. Unfortunately for us, in the month’s time period that it took from visiting to being enrolled in the research study to having the procedure, his tumors had spread in his intestines and he was no longer eligible for treatment at NIH (unfortunately, you had to be a healthy stage 4 cancer patient to be in research trials and the tumors disqualified him). ONE MONTH. THIRTY DAYS.

Had we gotten to NIH sooner… had his cancer been caught just a month or two sooner… he might be alive today. He might have seen his son start kindergarten.

When you are talking about aggressive cancer… DAYS can make a difference.

I can’t help but think what my husband would think of Congress and our President displaying their worst toddler behavior… temper tantrums… “I hate you’s”… no sharing… no communication… This almost infantile behavior has led to a government shutdown. For some people, the shutdown, literally will make the difference between life and death.

NIH is an amazing facility.  I remember when we visited and met with the staff.  The facility was amazing.  It was the most un-hospital like hospital we’ve ever been in.  They had great resources, including a house that family could stay in while their loved one was receiving treatment.  I remember the optimism, the hope, the passion that staff had- all of the staff.  At other hospitals we experienced good and bad staff.  At NIH every employee we encountered… from phlebotomy to doctors, to day nurses to night nurses… every single employee was topnotch!!  I also remember waiting for John’s surgery to be completed.  And instead of good news, we were pulled into a private room and told of the seed tumors that had spread to his intestines.  In that moment of what should have been utmost darkness, I remember the doctor telling me and my father, that it wasn’t the end.  That if we could get the cancer under control through chemo that we could come back.  I remember springing into action… making phone calls, scheduling appointments.  I remember getting called back to see John and he was crying because the doctor had told him about the seed tumors and how he couldn’t be in the study with the tumors in his intestines.  I remember comforting him and telling him that we weren’t giving up.  I remember the doctors said he’d be in NIH for I think a week or more for recovery.  I remember John doing everything he could to recover as quickly as possible, so we could move on to plan B and beat the cancer.  NIH has some of the best and most talented doctors and researchers working together with amazing resources.  So many advancements in cancer treatments have came from NIH. It is a travesty to see it considered non-essential.

Furthermore, when someone doesn’t get a paycheck, doesn’t know when he/she will be getting a paycheck, and can’t work… it is only natural to look into other employers. It would be sad to see talented doctors and researchers move to other facilities. There are also quite a few dedicated doctors, nurses, and other staff at NIH who are working and not receiving paychecks currently. This is a travesty as well.

Childhood cancer is so sad. To lose my husband at 35 was devastating and has turned my life upside down, but to lose a child- a youngster with so many dreams, opportunities and with such life to live is the ultimate tragedy of cancer. Maddie Major and her family, and all of the other families who’s last hopes have been put on the line, will be in my prayers.

I hope this country comes together for the good of everyone, but my heart especially breaks for those who are trying to get enrolled in clinical trials at NIH and can’t. While their lives are put on hold they very well may die, or have their diseases progress beyond the tiny window of opportunity for treatment.

John- forever loved… forever missed.
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Married to widowed

July 20, 2009, I went to bed married.  On July 21, 2009, I went to bed a widow.  Funny how the span of 24 hours can forever change a life.  For those of you with loving spouses give them a hug and let them know how much you love and cherish them.  For those of you in bad relationships… life is too short… go live your dream.  For those of you who are widowed… hugs. 

RIP John… forever loved…

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Ferris Wheel

Driving home, I spotted a ferris wheel at a carnival.  It was beautiful against the backdrop of the night sky… bright flashing lights drew attention to the ride.

My mind wandered to my last ferris wheel ride… with John… at the carnival… snuggled in close and conversing… smiles… happiness.

Then the song on the radio caught my ears… Lean on Me…

Sometimes in our lives
We all have pain, we all have sorrow
But if we are wise
We know that there’s always tomorrowLean on me when you’re not strong
And I’ll be your friend, I’ll help you carry on
For it won’t be long
‘Til I’m gonna need somebody to lean onPlease, swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you won’t let show

You just call on me, brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you’ll understand
We all need somebody to lean on

Lean on me when you’re not strong
And I’ll be your friend, I’ll help you carry on
For it won’t be long
‘Til I’m gonna need somebody to lean on

You just call on me, brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you’ll understand
We all need somebody to lean on

If there is a load
You have to bear that you can’t carry
I’m right up the road, I’ll share your load
If you just call me

Call me (If you need a friend)
Call me (Call me uh-huh)
Call me (When you need a friend)
Call me (If you ever need a friend)
Call me (Call me)
Call me (Call me)
Call me (Call me)
Call me (Call me)
Call me (If you need a friend)
Call me (Call me)
Call me (Call me)
Call me (Call me)
Call me (Call me)
Call me

“Lean On Me” by Bill Withers
I smiled and then felt tears slipping quietly down my cheeks… I no longer have anybody to “lean on.”  I have no doubt that John looks after me and kiddo from above, but it’s not the same.As my mind is drifting over those thoughts… I catch the next lyrics…
Well I woke up to the sound of silence
The cars were cutting like knives in a fist fight
And I found you with a bottle of wine
Your head in the curtains
And heart like the fourth of JulyYou swore and said
We are not
We are not shining stars
This I know
I never said we areThough I’ve never been through hell like that
I’ve closed enough windows
To know you can never look back

If you’re lost and alone
Or you’re sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on

Carry on, carry on

So I met up with some friends
At the edge of the night
At a bar off 75
And we talked and talked
About how our parents will die
All our neighbors and wives

But I like to think
I can cheat it all
To make up for the times I’ve been cheated on
And it’s nice to know
When I was left for dead
I was found and now I don’t roam these streets
I am not the ghost you want of me

If you’re lost and alone
Or you’re sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on

My head is on fire
But my legs are fine
Cause after all they are mine
Lay your clothes down on the floor
Close the door
Hold the phone
Show me how
No one’s ever gonna stop us now

Cause we are
We are shining stars
We are invincible
We are who we are
On our darkest day
When we’re miles away
So we’ll come
We will find our way home

If you’re lost and alone
Or you’re sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on

Carry on, carry on
“Carry on”
So… I will keep on carrying on… remembering the great memories… trudging forward… carrying on…
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Morning Conversation

So, kiddo and I are having a morning conversation.  We’re talking about the things we like about his school.  It’s my turn and I say that I enjoy having free time and getting to hang out with a friend of mine.  He makes a funny face because he doesn’t like that Mommy is having fun without him.

I tell him that he doesn’t understand now but later maybe he will. I tell him that someday when he’s all grown up maybe he’ll meet somebody and fall in love and get married.

He says, “Just like you!”

I pause, caught off guard and my voice cracks.  Kiddo who is infinitely wise beyond his four years says, “I love you Daddy!”

I somehow avoid breaking down and give him a kiss and said, “Your Daddy loves you very much!!!!”

And continue the conversation with, “Yes, buddy, just like Mom and Dad.  I hope your wife lives a lot longer.”

RIP John- Love you forever and ever always- Mary & Nathaniel

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