"In order to write about life, first you must live it." ~ Ernest Hemingway

Category: grief

When Grief Surprises You

Maisy waiting in the car with Mom while Dad was getting his Covid shot.
She absolutely loved car rides!

I woke up today with the intent of not letting another day go by without getting our tax information ready for our accountant. I know, you’re probably saying, “But it’s August”!

We file extensions every year because my husband’s business tax information doesn’t come to us until right around this time. Meanwhile, I gather all our forms and work on my medical deductions.

Calculating the medical deductions is getting easier for me every year, but it takes time. It’s best for me to do it all in one sitting as I have to go through multiple sources to document mileage, tolls, parking, deductibles, etc. I wanted to get it out of the way today because I have some extra free time and because September will be very busy for me. I didn’t want the stress of getting it done hanging over my head.

I sat myself down in my office this morning and got to work. I have a system put in place that works for me. One aspect of that system is going through my credit card statement, line by line, for the past year. I do this to look for medical expenses that I paid for out of pocket.

As I was scrolling through my credit card report, I began to get anxious. I wasn’t anxious at all this morning so I noticed it and just kept going. As I continued scrolling, the anxiety got worse and I realized I was on the verge of panic. I have a history of anxiety that recently has been under control, so this feeling was surprising to me.

Since I am armed with an arsenal of coping skills, I knew I needed to stop what I was doing and deal with the anxiety because it was just going to get worse. I put my pen down and did some diaphragmatic breathing.

It didn’t work.

That was surprising. So I moved on to other breathing techniques, including box breathing and 4-7-8 breathing. I did a grounding technique. I got a little relief, but my heart was still racing like crazy and I thought I was going to throw up. For a split second, I wondered if it was something medical, since these symptoms are also indicative of heart attacks in women. But, I know my body. I know my anxiety.

I stopped everything and went through my mind as to everything I had done since I got up this morning to try and figure out what was causing the anxiety. I wasn’t anxious about doing the taxes, but I realized that the page I was on in my credit report was line after line of veterinary charges…

Countryside Animal Hospital
Tufts Veterinary Hospital
Sturbridge Specialty Animal Hospital

And, a host of other expenses for medical and behavioral treatment.

I started to cry; not the tears rolling down your cheeks type of crying, but the chest heaving, sobbing kind.

It was Maisy.

I was still grieving Maisy.

I’ll be honest, this surprised me. Our dog, Maisy, passed away about fourteen months ago and I thought I was on the other side of that grief, as much as one can be anyways. But I knew, with absolute certainty, this was the cause of my anxiety.

Maisy was the third dog we had lost in the span of five years, one right after the other. Dogs are not just pets to my husband and I, they are family and each loss compounded the previous one. I always said I would write their stories for this blog, but I never found myself able to do so.

Even now, I don’t want to get into the specific details of all we went through with Maisy because it was difficult, heart wrenching, and the stress of her illnesses was one of the many causes of me going through a tough mental health crisis. I have worked through losing Maisy, and the loss of Molly and Foxy, in therapy, but while helpful, therapy is not a cure for grief.

There is no cure.

And, there is no way around the grief. You have to walk through it and hope that as you do, the good memories will slowly take over those difficult memories of their illness and subsequent death.

The grief of a beloved pet is a unique one. For me, it has been just as hard as the losses I have experienced with my loved ones. It’s the loss of a companion, a friend, and your source of comfort.

It’s the loss of unconditional love.

Whether it’s the loss of a pet, beloved family member, friend, job, health, etc., grief has no rules that it plays by. It is an experience that we must journey through and weave into the fabric of our daily lives.

One of the hardest parts of grief for me is how it can catch me off guard at the most unexpected times. The other day, I was scrolling through my Facebook memories and there were photos of Molly in her healthier years and it truly brought me joy. Another day, I came upon a video on social media of a purebred husky that was playing just like Foxy used it and the resemblance was uncanny. It made me sad as I yearned for all the experiences we wouldn’t have with her. Last night, my husband and I were watching the end of the Westminster Dog Show and enjoyed watching the final selection, as well as cheering for the winner.

But this morning I was doing taxes, and BAM, there was all my grief over losing Maisy, pouring out like it had happened that day in June 2020. So, I let it pour out. My first instinct was to try and ignore it while pushing on with doing my taxes, but I have come to learn that I need to allow what I’m feeling to be what it is, in that particular moment.

I put my head down on my desk and cried for as long as I needed to. I immediately felt better afterwards. My heart rate returned to normal. My stomach settled down. I had very little left to do to finish the taxes, so I finished them. But then, I felt like I needed to do more with my grief experience. I needed to write. I often ignore this need in favor of getting some other task done. Also, when I do write lately, I have been focusing on journaling just for myself.

This one though, I’m putting out into the world. Because I know you, the people who adore their beloved pets, and the grief we experience when their too short lives end, sometimes after years and years of love and devotion and sometimes just when we start to fall deeply in love with them.

Our pets are such an important part of our story.
Love them.
Grieve them.
Honor them.

Accepting Chronic Illness

I am tired.

For those who know me, that is not a surprising statement to hear. After all, I have a chronic autoimmune illness; one where fatigue is one of the most prevalent symptoms. Tiredness is as much a part of my daily life as food and sleep. Most of the time, it’s a given.

But lately, my tiredness is more than physical. It’s mental, emotional, and spiritual. It’s the type of tiredness that makes me want to stop fighting the daily battle of living with Sjögren’s, and the host of other medical issues, that have plagued me over the years.

Is it tiredness?
Or is it depression?
Or grief?

The label isn’t important to me. Actually right now, there’s not much that is important to me because all I want to do is sleep. Or veg out in front of the TV for days at a time. I get fleeting moments where I see a glimmer of my usual self – the self that enjoys the living hell out of life on a daily basis because she knows that life is short. And precious.

There are also moments, hours even, where I can put on a smile and appear to the outside world as my usual self. I reserve my energy for this act when I am with people who really matter to me, because I cannot help but think that those precious people deserve so much better than a morose, down-in-the-dumps shell of a person.

Or at least I did think that. Now I am beginning to wonder, what would be so wrong with being myself all the time and letting people really see me? All of me. Why do so many of us feel this burning desire to pretend? To be who we are not in order to protect our loved ones? When you live with a chronic illness day in and day out,there is only so much energy to go around. Do we really want to waste any of it pretending we are fine when we are not??

Many of you know that last September, I started a new part-time job as a school nurse. It was my first venture working regularly since I went out on disability in 2008. I had been working as a substitute school nurse for about a year and a half and I wanted to push myself to advance to working part-time, fourteen hours a week. Surely that was manageable I thought.

It wasn’t.

There were a lot of extenuating circumstances during my new employment. My gallbladder gave out on me and I suffered for months before I finally went in for surgery. I was also working towards my school nurse license, which took a lot of my energy and time. I was experiencing neurological symptoms and then a worsening of my pain and fatigue issues. For a variety of reasons, I found this new place of employment MUCH more stressful than my other job where I sub at. I enjoyed what I was doing at the part-time job, but the price I was paying physically was no longer manageable. Actually, it was never manageable. The only reason I made it all the way to January was because I was so damn determined to succeed.

That’s really the root of the problem: my drive to succeed. After going out on disability, I spent YEARS trying to figure out how I could get back to work in some capacity. While out on disability, I started a blog and wrote a book. Some people would call that working but honestly, I do not make a living doing it. And then when I did start working out of the home (as a substitute school nurse), I spent even more energy figuring out how to work part-time on a regular basis. But that wasn’t going to be my end point. I had a plan. I was going to gradually build up to being back in the workforce full-time, and nothing was going to stop me.

Especially not Sjögren’s!

But it did. Despite a WONDERFUL three week run on prednisone around Christmastime, it all began to unravel for me physically and I made the decision to give my resignation with the caveat that I would still be interested in subbing at this school as well.

I was struggling so much in the weeks leading to my last day that when my last day came, I felt nothing but relief. However, I wasn’t prepared for all the realizations that would come with leaving a job that I had worked so hard to get.

Looking back, it’s obvious to me now that with my medical needs, this particular job was not the right match for me. But I also realized that no matter how hard I pushed and how badly I wanted to succeed, my illness was not going away. I think that a part of me thought that as long as I TRIED hard, it would all work out. My symptoms would become more manageable. I just needed to stay positive and optimistic. I just needed to do more self-care to make my work days more doable. I needed to have faith in God and then I would succeed.

That’s the way I have always managed having Sjögren’s syndrome: I stay upbeat and I always continue forward, constantly trying new treatments and working on ways to manage my symptoms. Be courageous. Be brave! Don’t give up. Keep your chin up!

No longer.
Or at least, not right now.
Because I am so damn tired.
And oftentimes, chronic illness is just a bitch.

I have been living with Sjögren’s for at least eight years now. I do what I’m supposed to do to manage my illness. I do what I NEED to do. So in some ways, I have accepted my illness. But I am now beginning to understand that I have not truly accepted my illness. Not really. I have still been clinging to the hope that I can overcome it and go back to living a life similar to the life I was living before those first symptoms appeared. Leaving my job has helped me to see that it is good to push your limits and to have goals, but there is also something to be said for accepting yourself for exactly where you are at in any given moment.

This brings me to now, this day. A day in which I woke up in the morning and the first thought I had was that I wish I hadn’t woken up. Because lately, waking up means facing another day of challenges that drain the living hell out of me. I have to force myself to not snap at people. I cry at the drop of a hat. It’s hard for me to be around people because they are not going to say what I need to hear. What do I need to hear? I need to hear that it is OK to be sad. It is OK to want to lie in bed all day and not want to do anything. Maybe not forever, but at least for a little while. I need to hear that it is OK to mourn the person I used to be. Because let’s face it, that woman is gone. I don’t want to hear that I can do anything I set my mind do because the reality is, I cannot. Maybe, at the end of the day, it’s not so much about what I need to hear from other people, but rather, what I need to hear from myself.

Maybe acceptance and living with a chronic illness is less about being brave and more about being authentic. I think for me, true acceptance would mean being OK with where my body and mind are at on any given day, without judgement from that inner critic that says I need to be better. Or stronger. Acceptance would mean valuing what my body can do and not what I wish it could do. It would mean finding a way to live in a state of grace no matter what physical challenges lie in front of me.

Authenticity.
Acceptance.
Grace.

Ushering Them To The Other Side

Do Not Stand At My Grave And Weep

Do not stand at my grave and weep,
I am not there, I do not sleep.
I am a thousand winds that blow.
I am the diamond glint on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you wake in the morning hush,
I am the swift, uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night.
Do not stand at my grave and weep.
I am not there, I do not sleep.
Do not stand at my grave and cry.
I am not there, I did not die!
Mary Frye (1932)


One of my biggest fears is dying. It always has been. To be honest, I am not sure if my excessive fear is typical because nobody ever talks about it, at least not in my social circle. I hear all these stories of how people have made their peace with the fact that they are dying or going to die and I cannot wrap my head around that. I do admire and respect these people because to me, it seems like they have a strong faith; one that gives them the courage to face what may come next. I wish I had that courage when it comes to death and dying.

It’s not like I have lived this sheltered life of perfect health and harmony. I have had experiences that have had the potential of ending up on the other side: a cancer diagnosis, a car accident where my life flashed before my eyes as my car slammed into a guardrail several times on the highway, a heart procedure that came with all the usual risks. There have been occasions where I have considered the possibility of ending my own life. Seems ironic that I would consider that idea considering my fear of death, but people think all kinds of crazy things when they are in desperate situations.

I think my fear has to do with the unknown of life after death. Despite my Christian beliefs, I do not feel one hundred percent assured that there is this eternal life after we leave our body. Or maybe a better way to put it is that I don’t know what this eternal life truly looks like. What does it feel like after you die? Do we feel anything? Do we have internal thoughts like we have now? Are there bright lights and angels singing when our soul ascends into heaven? What if there really isn’t a heaven? Too many unknowns for me. Maybe not enough faith.

I had the opportunity recently to be with someone as they died. I had never experienced that before. I have had people close to me die, but I was never present when the actual event took place. For weeks, I have been trying to gather my thoughts and words together to describe how being present with someone you love, as they leave this life, can change a person but the words would not come through the wall of emotional grief that still sits in my heart and my mind. Hence why this entry feels so disjointed to me. But I know that some of the words have to be written because until I get them down, I will not be able to write about anything else.

People talk all the time about the wonders of being born. The miracle of life. A new baby signifies joy and happiness. People gather around the new baby and usher him or her into this world with love and devotion. My experience of being present with my mother-in-law as she died was that the process of dying and death itself deserves just as much love and devotion as the process of being born. However I am not sure that most of our culture recognizes that fact. Maybe because to most of us, it is such a sad event. Maybe because we are already mourning our own loss. But it’s not just about us and our own loss. It’s about the person who is dying. Their needs. We are not alone when we are born. I think we should not be alone when we die. Unfortunately, we do not get to choose how or when we die so oftentimes, dying alone is inevitable.

I watched my fiancé and one of his sisters keep vigil at their mother’s bedside for well over twelve hours before she left us. One of them on one side and one on the other, always touching her in some way. I watched, while stroking her head, my mother-in-law take her last breath. A moment that is permanently etched in my memory. A memory that often comes back to me in my dreams, or even sometimes as a nightmare. But as difficult of a process as it was to be involved with, I saw during those twelve plus hours that it wasn’t just the sadness that filled that room, but the love. The love between a son and his mother. The love between a daughter and her mom. The comfort and love that was unfailingly given to my mother-in-law during her last hours was just as important, probably even more important, than the love she received the day she was born.

I have come to recognize that being with a person as they prepare to leave this earth is a privilege and one of the greatest things that we can do for another human being. Is it gut wrenching and one of the most difficult things one might ever do? Absolutely. But it is an opportunity that many people do not get. An opportunity to remind your loved one how much they are loved because I truly believe that your words are heard. It’s an opportunity to say goodbye. It’s an opportunity to gracefully usher a person to their final destination.

To be honest, it has taken me some time to get to this perspective. The visual images of my mother-in-law in her last hours still weigh heavy in my mind when I least expect them to. However when I consciously and intentionally think back to that day, it is not the memories of her physical state that jump to my mind first. No, not at all. It is the other things. Hearing the quiet whispers of reminiscing between my fiancé and his sister at 3am as I nodded off in the empty bed beside them. The loving words spoken by my fiancé to his mother. The image of my sister-in law holding her mom’s hand. The movement of my mother-in-law’s hand indicating that she could hear us. The grace and strength that my fiancé demonstrated. My own strength. The moment that she did not take another breath after hearing her breathe for twelve hours; the sign that she was finally at peace.

I pray for my mother-in-law that she is in a much better place, wherever that may be. A place where she experiences no pain, disappointment, sadness, or loss. A place where she can rest and be filled with all of the happiness and joy that she so richly deserves. A place where love constantly surrounds and cradles her. A place that perhaps may be called, heaven.

Reclaiming My Voice

 

“Music exalts each joy, allays each grief, expels diseases, softens every pain, subdues the rage of poison, and the plague.” ~ John Armstrong
 
 

Grief is a sneaky invader; creeping up on you when you least expect it sometimes. Maybe it makes its guest appearance after a random conversation or during those still hours when the house is quiet. Sometimes grief is over the loved one we have lost. Sometimes grief comes in the form of losing something that we were once capable of doing.

My invader made a visit last Thursday. I wasn’t prepared for it but then again, are we ever really prepared?

I understood the circumstances of why I was feeling particularly sad last Thursday. I had been spending some time last week with a friend of ours at doctor’s appointments. He had asked me to be, as a nurse and as a friend, a second set of ears in preparation for a major upcoming surgery he was having this week. A surgery he was going through without his wife, who suddenly passed away at such a young age; almost two years ago.

His wife, my friend.

Of course I have thought about my friend in these past two years, but it has been a long time since I have mourned her. I had gone through my grieving process and I had chosen to remember her with fond memories and joy. However last week made me stop and think about how very unfair life can be sometimes. It didn’t seem right that he couldn’t have her there with him by his side. What a loss this world experienced when she left us. The grief felt palpable once again.

Once I came home from the second day of doctor’s visits, the house was quiet when the grief hit me and I decided that maybe the best way to deal with it would be to go on my computer and browse through some photos and videos of my friend. Remember her with laughter. Like the photos she took of me eating soggy grilled asparagus. It looked like I was eating worms. Don’t ask! I eventually ended up scanning YouTube for videos as our church posts its services and choir performances videos on there.

Choir.
A tough place for me to be lately. Actually, I haven’t been there as much.

My friend was in the choir and she was the one responsible for getting me involved in our church choir. Singing for God has been one of my steadfast passions until recently. I say recently because not being able to sing for the past few months, due to struggles with my autoimmune illness, has been a loss for me. Sometimes the difficulty has been with my lungs, fatigue, the dryness of my vocal cords, or issues with reflux affecting my throat. The fact that this has happened to other Sjogren’s patients has just discouraged me all the more. A lot of the time, I truly cannot physically sing and sometimes it is just energy that I cannot afford to spend that particular day or week. Although I have to be honest, I do wonder if occasionally I am just so exhausted and discouraged, that it is just easier to sit it out. Don’t tell anyone though because most of the time, people don’t understand that part of having a chronic illness unless they have experienced it themselves.

As I was looking through these church videos, I came across a YouTube video of my fiance and I singing the song “Mary Did You Know?” at our church Christmas cantata last year. A cantata dedicated to my friend’s memory. A song that has become significant to me because I had to overcome respiratory issues to be able to pull off that performance. It was a good performance. And I was grief stricken again. Because when I heard my voice on that video, I felt like physically, I wasn’t in the same place as last year. Actually I know I am not. My illness has taken more from me physically this year, including at times, the quality of my voice. Is that selfish? Maybe. Because let’s face it, compared to my friend not being here, it’s not as significant. But it is still my loss.

Fast forward to Friday. I am sitting at a Women of Faith conference in Hartford, CT. An incredible event that you will probably hear more about at a later date. I am thoroughly enjoying listening to a Christian comedian. A man named Mark Lowry.

Mark Lowry.
Why does that name sound familiar?

I decide to stop torturing myself trying to place the name because this man is so funny, I don’t want to miss a word that he says. He’s that good.

What I didn’t realize, until he opens his mouth to do so, is that this man can also sing. What a voice on him! What a talent to be able to make people laugh and to be able to sing like that.

What I also didn’t realize? That this man write songs.

How do I know this? Because at the end of his performance, he sang a song that he wrote. A song that over thirty recording artists have performed since he wrote it.

The song?
“Mary Did You Know?”

Seriously? Come on.

Now you can say what you will about coincidence and such but here are the facts. I had tickets for this conference for months, but did not know that the man who wrote the lyrics to this song was going to be there. I had not watched the video of that Christmas cantata in at least eight or so months. I also did not know about my friend’s surgery until last week.

So I don’t believe this was all coincidence. I am typically not a person who makes radical proclamations and I certainly do not typically write about them publicly online; although maybe I will more often now.

I believe this was God speaking to me.
I believe this was my friend speaking to me.

I believe they were telling me that as long as I am not harming myself, to keep singing as best as I can, when I can, but to push a little harder.

I believe they were telling me to stop comparing myself to other people. To get back to my speech therapy exercises, to do some research online, to stop reading about what other Sjogren’s patients can and cannot do for a while.

And finally, I believe they were telling me to believe a little less in my illness and a little more in myself.


































































































Photo Courtesy of Google Images