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

Category: Ireland

Life’s Challenges

I promised myself I would not go through another day without blogging. I noticed this past weekend that it has been almost three months since I posted anything. I have done some writing since my last blog post, but it was writing done just for me. That is one of my biggest challenges with having a blog; being an authentic writer while still not doing damage to other people in my life.

A LOT has happened since August. It’s funny because I kept telling myself, “Oh this would make a great blog post” or “I should write about this.” But sometimes I get like that: I just want to experience life without feeling obligated to write about it all the time.

In August, my husband and I took a dream trip to Ireland. It was a trip we had been talking about since we started dating over six years ago. We had the money saved but I kept stalling on planning it due to my health issues and my fears about being in another country with said health issues. I finally got over that and we had this amazing eleven day adventure (with prednisone on board to get me through the adventure) of Northern Ireland, Co. Donegal, Co. Mayo, Co. Galway, Co. Offaly and one of the Aran Islands. That is a topic I will still probably blog about at some point in the future!

About a week after we got home, we got SLAMMED with one crisis after another, some major, some annoying. We had some large, unexpected expenses, an unwell family member, a major family relationship conflict, and then our fifteen year old dog, Molly, ended up in the E.R. and was diagnosed with congestive heart failure. We had to make a decision and we decided to go ahead and bring her to a cardiologist for treatment. She is doing better in regards to her heart, but the side effects of the medications have made life much more challenging for my husband and I. And if you’ve ever had an elderly dog, you know the expense that comes with keeping them comfortable.

Molly has also had some challenges just in terms of getting old. It would appear that she has very little, if any, hearing and this past weekend we noticed that maybe her eyesight is becoming an issue. We did decide that we will likely not go any further in pursuing treatment when the next medical crisis for her comes along. We were hoping for her to get through this Christmas and with less than two weeks to go, that possibility looks very likely.

That was all in September. In October, we got news that one of my closest friends, Steve, who had been living with Stage 4 colon cancer for over two years, was getting sicker. We are an hour and a half away from him and his family, so a lot of October was spent traveling back and forth and spending as much time with him as possible.

On November 5th, my friend lost his brave battle.

That experience with him was life changing for me and it was one that requires and deserves so much more than what I am going to write here today.

A story for another time.

Then on November 24th (Thanksgiving Day), my sister-in-law, Stacie, passed away very unexpectedly. This was made more difficult by the fact that we live fourteen hours away from where she lived. She was the first person my husband ever told me about when we started dating. I knew her death was going to be earth shattering for him.

I just realized this afternoon that I still have not fully processed her death.

As I am writing this, I think it is hitting me that I have been in survival mode since August, even with the vacation. One day at a time.

Get things done.
Be present.
Just get through the next hour.
You can do it.
You can survive this.

And I did. Of course the stress contributed to a major autoimmune flare for which I am currently on a three week run of prednisone for…one of my tougher prednisone runs, that is for sure. And, I have been having some issues with anxiety which has not been a major issue for years. But, I have people helping me with that and more importantly, I know how to help myself through that.

My attitude right now is to go into Christmas taking care of myself as much as possible. This has meant making some changes to our routine and traditions this year. It has meant a lot of tolerance and understanding from my husband towards me and from me towards my husband. The past few months have reminded me of how important it is to choose well when it comes to a life partner.  It has also reminded me of how very important it is to choose well when it comes to the people we surround ourselves with.

Isn’t that mostly what life is about though? Going through life with people? In the past few months I have learned so much about myself, my husband, and who is going to be there at times when the phone rings at 8am and your friend of thirty years tells you he has about two weeks to live and you are in the car headed out of town less than an hour later, not sure of when you will be back and what your life will look like when you do get back home.

Those are the moments that define you.
And the people who loved me through it are the ones that remind me of how rich my life is.

Go love your people.
Tell them.
Show them
Put your phones away and be with them.

Graveyard Adventures

Photos Courtesy of Myers Creative Photography

About fifteen or sixteen years ago, I started doing genealogy research on my dad’s side of the family, surnames Molloy and Menkalis. I was mostly interested in the Molloy genealogy because I had this borderline obsession over all things Irish and wanted more than anything in the world to someday go to Ireland.

I really got into the whole genealogy research thing for a few months there. I never researched my mom’s French-Canadian roots because well, my very meticulous grandmother had already done that. I had a whole packet of genealogy lines tracing all the way back to 1651 in France. I appreciated my grandmother’s efforts and all the information that was passed down to to my generation, but for me, the fun part of genealogy was the process of discovering all these ancestors and relevant facts about them. I wanted to be part of that process.

After a while, I got stuck in my genealogy research. I found some information, but I couldn’t get any further back. However on a website called Ancestry.com, I had actually located a woman living in California (I live in Massachusetts) whom I was related to. Her grandmother and my grandfather (Molloys) were siblings. It was pretty exciting at the time! We were able to exchange information, but as time went on, we lost touch.

Fast forward to this past summer. I was getting ready to finally make my dream trip to Ireland and I pulled out all those genealogy notes from fifteen years ago. I did a little poking here and there online. I knew that the Molloy surname originated in County Offaly, Ireland. When we went to Ireland, we did go to Co. Offaly and visited the genealogy research center there. I was able to purchase two books that mention the Molloy surname and I got some information on how to follow up with a researcher there who may be able to help me more in my genealogy quest.

A few days ago, I came across some information on the free version of Ancestry.com and I decided that it would be worth my while to purchase a membership on Ancestry.com. However, life has been a little hectic since we came home and I decided to wait a little longer so that I could maximize my investment for when I had more hours to spend on the website.

During that evening of searching, I was getting confused about my great-grandfather Molloy. I had some legal documents about him I had gotten back in 2001, but I realized that maybe it was for the wrong Joseph Molloy. It dawned on me that some of the documents I had may be for his son, my great uncle. The clue that tipped me off was that there was a different wife’s name than the gravestone I had gone to see in Millbury, MA in 2001.

So I decided that it was worth a trip back to Millbury to check out the stone again. Maybe I had written down the wrong date or maybe there would be other information on the stone that would help me. Maybe the document place had sent me the wrong information. When I went to Google search the address for the cemetery, I came across a website called “Find A Grave“. In my search for the Molloy name, I came across my grandmother’s (Menkalis) grave information. I have visited her grave many times, so I know where it is, the dates on it, etc., but the important part is that HER father’s name, Julian Menkalis, was listed with a link. I clicked on the link and it brought me to HIS grave page. I read it and was astounded…

My great grandfather, Julian Menkalis, was buried in a cemetery ONE TOWN OVER! Literally, about ten miles from my home. Now I had known that my grandmother was born and raised in this next town over, but I had never pursued it beyond that. Life got busy and my health needed tending to. I didn’t have much time for genealogy research.

But now that I had this newfound information, I just had to get myself to this cemetery. While there was a number assigned to his grave on the website, I had no clue where it was. But let me tell you, I was certainly determined to find it.

I unexpectedly had a few extra, unplanned hours this afternoon so I drove the ten or so miles to the town next door. It was pretty much an impulsive move. I had very little water with me and I was in heavy capri jeans because the temperature had been much cooler this morning. It was cloudy and overcast when I got there, so I figured I would be good to go.

The size of the cemetery was a bit daunting. I needed a plan. At first I thought I could scan the front of the gravestones four to five rows at a time. Shortly thereafter, I realized that there were a lot of grave markers that were cement plates in the ground. It became obvious to me that I would have to go row by row, grave by grave.

When I say that there were roughly a thousand grave sites, I am not even kidding. There were probably even more than that.

About ten minutes into my search, I panicked because there were a few older stones that were unmarked. And then I noticed that there were some that were so old, I could not read them. Since I had my phone with me, I went back to that grave website and checked the birth and death dates of Julian Menkalis. Then I checked the dates on some of the headstones. Nope, my great grandfather wouldn’t have a stone so old that I couldn’t read it. However since he died in his thirties, leaving a wife and three young kids, he might be in an unmarked grave.

Those unmarked graves made me sad. Just a little block of cement resting on a patch of grass. No name, no dates, nothing to mark the fact that someone, who once upon a time meant something to someone else, was actually buried there.

I didn’t let this stop me though. I continued on, grave by grave, at almost race walking speed, slowed down only by the rolling hills that seemed to characterize this particular cemetery.

Then the sun came out. I checked the temperature and it was now 85 degrees. And humid. I knew I was walking on thin ice. Because I have Sjogren’s syndrome, extreme heat and sun can make me sick  much faster than the average person. I went back to my car, mopped my head, drank the water I had left, and let the air conditioning of the car work its magic. I did consider going home and coming back another day. I also considered possibly calling the church to find out where exactly the grave was located.

So why didn’t I?

Well, that would have ruined the discovering process for me.

There’s no adventure in getting the information over the phone.

I decided I would press on, with the stipulation that I had to go back to my car every twenty minutes for some air conditioning time and I would drive from one section to the next as much as possible.

I continued my search for about an hour and a half. I was so determined to find this grave! I could feel the anticipation building up in me as I passed each grave marking that was not my Lithuanian great-grandfather. What a great feeling it was going to be when I finally come across the grave marking that read, “Menkalis.”

This is the part in the story where you guys are expecting me to wrap up my little adventure story with a tidy ending. Yay, she found the grave!

I did not find the grave.

As I walked by the last several headstones and ground plates, I could hardly believe it. I never expected to NOT find my great grandfather’s resting place. I thought I surely would, if for no other reason than because I had put so much effort into my search.

I drove home with heavy disappointment, but realized that the search was not over yet. I could still call the church. They must have the plot information for where he is buried and maybe they could point me in the right direction. I also could possibly find out more information once I registered on Ancestry.com. The important part as that I TRIED to do it myself and in the process, got a heck of a lot of exercise; never a bad thing for me!

A little while after I got home, my mom called and I told her of my afternoon adventure. I could hear her talking to my dad in the background, telling him how I spent all that time trying to find his grandfather’s grave. I had talked to my dad the other night on the phone about his Molloy relatives and my dad had told me that he didn’t know a lot of information about his extended family. Part of that was because my grandparents were a lot older than the norm when he was born and a lot of his relatives passed on when he was young. He also told me that they just didn’t really mingle much with his extended family.

So after my mom relayed today’s adventure to my dad, she also asked him some questions about his grandfather’s grave. Apparently, surprising to me, my dad HAD gone to that cemetery to visit his grandfather and also his grandmother, who was buried right next to Julian Menkalis. He said he wouldn’t remember now how to find it, but he DID remember that they had an unmarked grave in the very literal sense: no blank stone, no nothing. They had no money and were literally buried underneath the grass with no marking. My dad also said that it was the church who had directed them where to go to find the gravesite all those years ago.

So the good news is, I probably walked right over my grandparents. The bad news is, I spent a lot of time today looking for something I wasn’t going to find on my own.

I don’t feel that it was a waste though. It was still a small adventure for me and I have to be honest, minus the sun and heat, I find cemeteries very relaxing and peaceful; I always have. Now I know that my next step needs to be contacting the church and hopefully, I will find the graves of my great-grandmother and grandfather. But this time, I am going to bring something along with me. I’m not sure what yet.

But something.

Some type of item that marks the spots where their remains lie.

Something that states that somebody important lies beneath those spots.

Something that says, “these are my people”

My immigrant Polish and Lithuanian ancestors.

The Road To Acceptance

For those of you who follow my blog fairly regularly, you may remember a post I wrote about two weeks ago called Accepting Chronic Illness. It was a very personal and honest take on my current inability to fully accept having Sjögren’s syndrome and the limitations that come with such a diagnosis. If you are interested, you can read the essay by clicking HERE.

A while back, I also started following a website called The Mighty. It is a website dedicated to real life stories of people living with disabilities, disease, and mental illness. The most recent article that was published caught my attention and even more specifically, a particular quote:

“Accepting the fact that I will never get better is what has allowed me to live my life and continue to work towards my goals without waiting to ‘get better.'” – Joan Elizabeth.

Light bulb moment.
This is what I have been doing…

Waiting to get better.
And working to BE better, no matter what the obstacles are.

It’s no wonder I have fallen into such a dark hole these days. Since my symptoms first started wreaking havoc on my body in 2008, I have been in a constant battle to get better and overcome all the obstacles and challenges that get thrown at me healthwise.

I always thought this was all good stuff. Stay strong. Beat the odds. YOU CAN CONQUER ANYTHING! Sweet baby Jesus, I’m annoying myself even rereading what I just wrote here.

Don’t get me wrong; I am very well aware that there is no cure for Sjögren’s syndrome. Will there be in my lifetime? I highly doubt it. Or maybe I just don’t want to get my hopes up too high about whether there will be a cure or not. However I really did believe that if I found the right doctors, followed the right eating plan, got enough rest, and just TRIED HARD ENOUGH, that I could beat this thing into submission.

If I just prayed enough or had enough faith, maybe it would all go away.
If I didn’t let myself focus so much on my symptoms, they would go away.

I do think that a positive attitude can go a long way. I also think that the medical community is very much lacking in its treatment of autoimmune illnesses, so we do have to be our own advocates. But, just because I have done everything in my power to get better, doesn’t mean I WILL get better or even STAY better.

So the questions that then come up in my mind are: why do I think I am not good enough in my present state? Why do I think that I have to go to work every week in order to prove my worthiness as a human being? Why does the likelihood of being on disability the rest of my life make me feel like I am lesser in some way? Because if any one of you said that to me about yourselves, I would be all over you. I would tell you the truth: that no matter what your present circumstances are and no matter where you are in your medical/health journey, you are so worthy. I would tell you that your existence on this earth is not defined by a paycheck. Or by how well you can keep your house clean. Or by your inability to stay out of bed all day.

Although lately I do feel like this, I am not talking about completely giving up and resigning myself to a life in bed. But what if, I mean seriously, what if, I accepted the fact that I am not going to get completely better? What if I just accepted that there are going to be things in this life that I cannot do, such as working a part or full-time job? Or staying up past 6pm at night on a regular basis?

What if “beating my illness” is less about not having physical symptoms and more about learning to live with those symptoms more gracefully?

I’ve been waiting to get better for eight years now. My life has not stopped during that time, but everything I have accomplished, such as publishing my first book, has felt like temporary successes. You know, the goals that I work on while trying to get permanently better. And for those of you who know me well, you know that in a lot of ways, I AM better. I spend much less time in the hospital than I used to in those early years. And I guess that gave me false hope; that eventually I could make myself all better if I kept pressing on.

As the author of the quote wrote, I do have goals. For example, I have a lifetime goal of going to Ireland; something that has been on my bucket list as long as I’ve known that Ireland has existed. It’s a goal that my husband has encouraged me to pursue and would like to pursue it with me. For years, I have been postponing going, despite the fact that we already had the money set aside. I kept waiting to feel better and feel confident that I will be well when we travel.

Recently the reality hit me that if I keep waiting, I am never going to Ireland. So instead of waiting, we met with a travel agent yesterday and we are planning the trip for in six months, with trip insurance coverage of course. Instead of waiting to be well enough to go, I am trying to come to terms with the fact that despite all the precautions I can put in place for this trip, there will be times during the vacation, maybe even for the whole duration of the vacation, that I am not going to be better. It may make things a little scary for me, but I will be in Ireland, even if some of the days are in bed.

To me, acceptance is different than giving up. Giving up implies that I do not want to try anymore. It means becoming a victim of my circumstances. But acceptance? That’s about being at peace with where you are; even in the midst of the pain, the fatigue, and the uncertain future that so many of us face.

So for today, accepting my illness means that I am spending the day at home, mostly on the couch. It means sitting in a warm and cozy house, with my adorable pooch, and throwing my words out into the world, in the hopes that they will be of use to someone, somewhere. Today, acceptance means embracing what the larger dose of prednisone is doing to my body, both good and bad. It means that there is housework that won’t get done and errands that I will have to try again for tomorrow. It means being content with where I am at, in this day.

That where I am at in THIS day is more than enough.