For Everything There is a Season

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

Category: faith (Page 2 of 3)

Reclaiming My Voice

November 5, 2012 / / 6 Comments

 
“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

Another Stumble, Another Step

October 21, 2012 / / 6 Comments

I love to write.
In case that wasn’t obvious.

I had the opportunity yesterday to attend a writer’s conference called WriteAngles at Mount Holyoke College in Massachusetts. It was my second time at the conference and I was not disappointed. It is such a high for me to be surrounded by so many writers and readers. I love the energy. I love the opportunity to learn. I love the fact that I get to step outside of the isolation that I sometimes experience as a writer and instead be able to engage with those who share my passion. 

I had a lot of physical challenges facing me going into the conference this year which is partly why I have not been blogging as frequently. My Sjogren’s symptoms kicked into high gear a few weeks ago and this resulted in a significant increase in doctor’s appointments and major changes in medications; not to mention feeling like hell due to pain, fatigue, and issues with my eyes. It has probably been one of the worst flare ups I have experienced in my illness since its onset four years ago.

This wasn’t just an opportunity to attend a writer’s conference though. I also had a ten minute, one on one meeting scheduled with a literary agent at this event yesterday. It was an opportunity I had known about back in December of last year when I started writing my book Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjogren’s Syndrome. I made sure that I signed up for the conference the day registration opened up in order to ensure one of those coveted agent meeting slots. I spent weeks learning how to write a good query letter. I researched how to do a book proposal in case one was required for my particular book. While sitting in doctor’s waiting rooms over the past few weeks, I would be emailing back and forth with other story contributors for the book in order to get the manuscript complete.

Now I had never been to one of these meeting before, but the impression I got from the person coordinating the meetings and from doing a bit of research online, it seemed like the purpose was to review your query letter, discuss your book and have the opportunity to ask questions. I was not expecting to walk out of that meeting with a literary agent. Not because I don’t have confidence in this book. I do. But because I knew that it was my first time at the rodeo so to speak. This was more of an opportunity to introduce my work and if I was really lucky, maybe spark the agent’s interest. I was expecting to get some valuable feedback about my book and learn something to help me figure out the next step in getting this very important book to the next level.

By the grace of God, my symptoms started to settle down forty-eight hours before the conference. The day before the conference I was by no means back to the physical state I was in a month ago, but I was definitely able to get myself to Mount Holyoke College, which is twenty minutes from my home. I thought I could manage going eight hours without pain medication and then hopefully be able to focus, function, and act intelligently for eight full hours; without a nap or rest period. I would probably require at least several days to recover from the experience. My medical needs had increased over the past two weeks and I meticulously planned my medications, eye drops, inhalers, and water needs (due to extreme dryness from Sjogren’s) around the conference schedule. My writing bag was packed, accompanied by my medical supplements. I had researched my agent. I knew what I was going to say.

I was ready.
I was excited.
Game on.

Thirteen hours before I am to leave my house, it is seven o’clock in the evening and the phone rings. I see the caller ID and the name of the person coordinating the agent meetings flashes at me from the phone, daring for me to answer. I knew. I just knew. I get through the conversation, barely.

The agent I was supposed to meet with was sick and all of his meetings had been cancelled.

Some people would stop reading here and say OK, so what? It was just a ten minute meeting. Send the query letter to another agent. Or maybe he will read the letters at another time and then get in touch with you when he is feeling better. But in those moments following the motion of hanging up the phone, all I could feel was profound disappointment. All I could think of were the hours I had spent in bed, while so sick, writing this book. The obstacles I had overcome to even be able to get to this point with the book. The disappointment I felt over not having the experience of meeting with an agent.

And within minutes, the negative thoughts were gone.

He was sick.
I know about sick.
I know about not having control. This was out of my control. What was in my control was how I was going to handle it.

I changed my mindset. This agent, on this day, was obviously not the path for me or this book right now. I decided to keep faith and move forward. I was still able to go to the conference. I was still going to be able to meet and enjoy the company of other authors and learn more about my craft. I was going to have the opportunity to immerse myself in the literary world that I have come to love so much.

And so that is what I did. I met new people. I learned new things.The speakers were tremendous. I was especially touched by the keynote speakers Maria Luisa Arroyo and Ann Hood. Both of their stories touched me in a way that few ever have. Both made me cry. In both of them, I saw what it was like to have the soul of a writer and how a writer can effectively use their life experiences to make a dramatic impact on the lives of others.

I am sitting in the second morning panel session called Going Beyond the Personal in the Personal Memoir. It is 11:53. I know this because a woman comes into the conference room with a clipboard. She announces that she is looking for the following three people who will, due to a variety of reasons, unexpectedly have an agent’s meeting after all on that day. They are to go upstairs at noon. I sit there and remind myself that there had to be at least ten plus people who had their original meetings cancelled. It will not be me.

She speaks.
I am name number three.

The chain of events that followed after that felt frantic to me. I am not the most spontaneous person in the world. I did not know which agent I was meeting with and she had not had the opportunity to even read my query letter until I sat down in front of her. I remember telling myself to breathe and relax so I could make the most of the experience.

It was a much bigger experience than I imagined. She thought the query was really good and that a publisher would pick up the book. What? My book? We discussed what the next steps would be. Then she is telling me to submit the query letter to her at the agency with a book proposal. Excuse me? I am the one who came here with a cancelled agent’s meeting and now you are requesting a book proposal?

THIS was how it was supposed to unfold.

I don’t know what is going to happen. I may submit the proposal and it will be rejected. I may submit it and it will be accepted. What I do know with absolute certainty is that no matter what, my book and I will travel our path together until we have reached our destination; wherever that may be.



















































































Photo Courtesy of Google Images

Whale Watching…Life Watching…

July 8, 2012 / / 2 Comments
“We clear the harbor and the wind catches her sails and my beautiful ship leans over ever so gracefully, and her elegant bow cuts cleanly into the increasing chop of the waves. I take a deep breath and my chest expands and my heart starts thumping so strongly I fear the others might see it beat through the cloth of my jacket. I face the wind and my lips peel back from my teeth in a grin of pure joy.”  ~ L.A. Meyer

I have always loved the ocean, especially the New England coastline. Beaches, lighthouses, sand, boats, and scenic views are just the beginning of my love affair with the ocean. Add to that the sound of waves crashing the rugged shoreline as well as the smell of the salt water penetrating my nostrils and I am in a state of complete contentment. Pure joy even.

Up until last year, I was always more a spectator of the New England coastline and it’s vast Atlantic Ocean rather than a participant. I would walk beaches scouring for shells and tour lighthouses but with the exception of two ferry trips, I was never actually on the ocean. Then last year Chuck and I spent an afternoon on a tugboat as part of the MS Harborfest event benefiting the Multiple Sclerosis Society and I was hooked. I found a new love in Portland, Maine. A love of piers, fishing vessels, lobster traps, and even the somewhat foul smell of a fishing port.

We had been wanting to go on a whale watch together since we started dating almost two years ago. Chuck had been several times before and I had never been. I am not quite sure why. I think part of it was that I always shied away from going on boats due to issues with motion sickness and also just never really having the opportunity to be on a boat. However this year we were finally able to make the time to schedule it and it worked out that I was finally well enough to brave the adventure.

So yesterday we made the trip to Gloucester, Massachusetts, about two hours from our home, to go on a whale watch with a company called 7 Seas Whale Watch. I was beyond excited mostly because it was an experience I had never had before and also because I got to be on the ocean again. Apparently I come from a long line of fisherman on my dad’s side of the family and when I did a genealogy research many years ago, Gloucester was one of the areas that some of my distant relatives had worked and lived in. Maybe it is in the blood!

Nothing though could have prepared me for the experience I had yesterday and how profoundly it affected me.

After taking a good dose of Dramamine for motion sickness, we got on the boat. Everyone else getting on board seemed so intent on getting a seat and staying put. By the time we got on, there were no seats left except inside the cabin and I didn’t see the point of staying in there! My first thought was that it was going to be difficult to stand with my physical issues as the trip was supposed to be almost four hours long. But then I decided it was going to all work out somehow for the best. So instead, we settled ourselves by standing at the bow of the boat, which is the very tip of the front of the boat. The width was enough room for Chuck and I to stand together side by side with nobody in front of us and nobody to the sides of us. There was a double railing so it gave me the ability to switch positions often by leaning and supporting myself on the rail. I figured eventually there would be an open seat somewhere out of the deck.

Absolute best decision.

Why? Because when the boat started moving, we had the best view ever. I knew at that point that there was no way I would be moving from that spot unless I was on the verge of collapse. The boat had such a low profile (meaning close to the water) that it felt like we were right on the water. And with the boat traveling at speeds of up to about 20mph, being at the bow was incredible. Wind rushing through my hair and body and having an unobstructed view of the vast Atlantic Ocean was priceless.

At first, we slowly moved out of Gloucester Harbor which is just a treat in itself. Breathtaking scenery of lighthouses, fishing vessels, old buildings, and even a harbor seal! Then as we moved out of the harbor, the temperature dropped and what was stretched in front of me was the beautiful vastness of the Atlantic Ocean. An occasional fishing or sailboat was all we saw at first and then we saw nothing but blue water as far as the horizon where it met the sky.

And it just got better.

Since we were at the very front of the boat, I spotted the first whale. I could see in front of that horizon water shooting up from the surface. Water from the blowhole of a whale. A creature that I had never seen before in its home. A creature free to roam its land freely, untouched by the modern world that we live in.

As we got closer to the whale watching spot, the boat slowed down and eventually stopped. It is a surreal feeling being in the middle of the Atlantic Ocean at a standstill. No other vessels around (at that point) and people on the boat waiting in silence; waiting to see the great creature we had come to observe.

And then they came, not one but two whales. Two humpback whales diving in and out of the vast ocean working as a pair while they were feeding. Such an incredible sight. Such a natural sight. A sight that left me with tears welling up in my eyes. Why, I am not sure.

From what we were told by the naturalist narrating our tour, the area we were in, Stellwagon Bank, is a large feeding area for the whales, USA Today has listed this area off the coast of Gloucester as one of the world’s top ten whale watching sites.

I can see why.

Apparently we happened to hit an unusual day for our whale watch. There was an abundance of whales to watch and it was amazing how close the captain of our boat could get us to these magnificent creatures. Humpbacks, Finbacks, and Minke whales were on the agenda for yesterday. Sometimes we would see one, sometimes two working in tandem to gather their food to store up for the winter when they would then migrate down to the Caribbean where there is no food available for them. We got to see a calf, which is a baby whale. At one point, we could see several whales with the water shooting out of their blowholes in the distance. There had to be at least four gathered together.

Another treat was that we saw schools of Atlantic White-sided Dolphins, which is an unusual sight in July. Normally they grace the water of the Atlantic in the spring and fall. Sometimes we saw two swimming at a time; sometimes four. Sometimes swimming alone and more incredibly, sometimes flanking the sides of a humpback whale as he/she travelled the waters. At one point, our boat drove along the dolphins as they perfectly synchronized their swimming in pairs alongside our boat.

Nature in perfect harmony.
Life in perfect harmony.

After staying out in the whale’s feeding area for what seemed like an infinite amount of time, our vessel made its way back to Gloucester Harbor. This time I found a seat but still I was at the front of the boat. My senses felt pleasurably assaulted once again. The sound of the ocean water rushing away from the sides of the boat sounded like music. The smell of the salt water still in the air.

Sometimes spiritual experiences come when you least expect them. I have to say, I was due for a spiritual experience; one that made me feel like I was more connected with God and with myself. I am not sure exactly how it happened. Maybe it was because of my spot on the boat, up there in the front. It helped me to feel like Chuck and I were the only ones on that boat. Like we were almost right on the water with those creatures. Maybe because like I mentioned earlier, we were in a place untouched by our modern world with all of it’s distractions. A place of beauty.

One thing I do know for sure: we were in God’s country. For me, a place free of doctors and medical tests. Free of insurance and disability companies. Free of technology. Free of other people’s drama. Free of stress, disappointments, and expectations. A peaceful place.

In other words, a little piece of heaven.
Right here on earth.

Photos Courtesy of Chuck Myers

“Why Me?”

April 4, 2012 / / 8 Comments

Every hand in need that reaches for me

is a piece of my salvation.
The troubles they have mirror mine.
In acknowledging their demands.
I help heal their wounds, give them hope.
What I want is to be selfish and sit in the dark.
I want to scream… WHY ME!
But with the Grace of God, I cannot.
I sympathize with the pain and sorrow.
My compassion is the light by which I walk,
it is what heals me.
~ Cyndi Lamacchia
This is an excerpt from the poetry that was read during our Easter Cantata at my church last Sunday. This particular part was written by another member of my church and in the moment that it was being read aloud by my minister, the words grabbed me. It seemed to echo how I had been feeling about my life over the past several weeks.
I think it is a great piece not only because it sang to me, but also because it can be interpreted in many different ways; both religious and non religious. My first interpretation upon hearing it is that it is about Jesus. But then I realized that it could also be about many of us; those who are facing huge obstacles in our lives. Sometimes one obstacle right after another in a relentless fashion.
This particular Sunday morning found me feeling lousy and I was questioning whether I should get up and go to church at all. I was battling a sinus infection on top of dealing with some of the same ongoing neurological issues and I was also recovering from a nasty fall the week before. Not even to mention that I was weaning down my dose of steroids, which typically causes my body a lot of grief until my body readjusts to the new dose. The assault on my body just seemed to continue week after week. And honestly, I was sick and tired of it.

As Chuck was getting dressed that morning and I was debating in my mind whether it was wiser to get up and go or stay home and rest, a statement that is very atypical for me came blurting out of my mouth. I said that maybe I should get myself to church if for no other reason than to ask God why he keeps throwing one health obstacle after another at me with no respite. Why can’t he just give me a break? I thought I was half kidding when I uttered the words but the thoughts and words came so fast that I think there was some truth to them. Because looking back at the past three months, it really has been one issue after another and let’s face it, I already had a full plate to begin with.

“Why me?”

I don’t do the whole self pity thing too often and to be honest, I don’t think that God is up wherever he is plotting different ways to torture me. I believe in a loving God. Not one that punishes us. I like to think that there is a reason for most things that happen in life but lately, I am not so sure about that. Am I being tested? Do I just have terrible luck? As you can tell, I have been doing a lot of questioning lately about why I am in the place I am with my health. I don’t blame God necessarily but I do sit back and wonder about it. Am I experiencing this in order to appreciate the many blessings that I do have in my life? Is it supposed to make me a stronger person? Or is it just the way it is?

Regardless, the onslaught of physical problems over the past three months has all led to me wanting to selfishly, as this poem mentions, spend more time than usual in the dark.

Stay in bed. Stay home. Let the illness win.

But I do not.
I keep going.

I keep going for many reasons:
For the family and friends who love me and have cheered me on day after day, week after week.

For all those affected by Sjogren’s syndrome and other chronic illnesses I have met online and in person whose hand in need has reached for me. At times they have been MY salvation.

For myself because I like to believe that someday the light by which I walk will be much brighter.
It is very easy to fall into the “why me?” trap. Although perhaps a perfectly natural response, it is a futile one. The time and energy spent in our self pity over events that we may not have control over leads us to make less than optimum decisions. Decisions are something that we DO have control over. Instead of making the decision to give into our crisis or illness, we can make attempts at avoiding the dark place. Like deciding if we truly need to stay in bed and rest versus making an attempt to be in the world. Or like the decision to push ourselves on a difficult day to get outside and walk; even if it is just a very short distance. Maybe making a conscious decision to replace “why me?” with “how can I help you” to another person. It is not always easy to make these decisions as sometimes we should rest or not take that walk if it will do more harm than good.

This is the point in my blog entry where I wrap it up with some heartfelt opinion or realization but truly, I have none today. And that is not a bad thing either. It means that I still wrestle with the issue and like is implied in the poem, I am not alone in this. I would like to know what my readers think about this topic.

Do you ever sit back and say “why me?”

What do you do to avoid getting sucked into that dark place?

Do you feel that it changes the way that you think about God?

Photo Courtesy of Google Images

Another Morning

February 7, 2012 / / 6 Comments
“When you arise in the morning, think of what a precious privilege it is to be alive-to breathe, to think, to enjoy, to love.” ~ Marcus Aurelius

I wake up and it is another day. I stop to think of that fact and be grateful for it. That is important, very important. It is so easy to get lost and discouraged first thing when you wake up. I have slept maybe two hours. Maybe four. The nights can be long. But I am awake. And I can move. Maybe not always easily or without pain, but I can get myself out of bed. I lie there and think about the struggles ahead of me that day and then I stop to think about what I can offer that day to make it a better day, one with a purpose; for myself or for someone else.

I prioritize in my head what is necessary to do and what is optional. Most of it is optional, it has to be. If there is an appointment I have to be at, the day revolves around getting to that appointment. I get out of bed and take my medications. So many pills in their carefully laid out pill box.

Steroids.
Inhalers.
A yellow pill.
A lot of white ones.

It is helpful to be an organized person when it comes to the taking of the pills.

Next priority is drinking as much as possible. The dryness has woken me up throughout the night, despite the humming of the constant humidifier and fumbling with eye drops and mouth moisturizer several times in those wee hours. The concept of too much water does not exist in my mind. My body soaks it up eagerly like it has never seen it before. Now, a bathroom run for me. A bathroom run and fresh water for Molly. I am already having difficulty convincing my arms and legs to work in their proper fashion.

Back to bed to check e-mails and Facebook. I am looking for inspiration. Something that will make me laugh. A kind thought from someone. A status update about something good happening to someone; something to help replace the light and joy that the steroids have taken from my normally even keeled and sunny disposition. I take a cookbook or two back to bed with me to figure out what nourishing meals I can put in my body to help heal it. If the day is all mine and not one that is a slave to doctor’s offices or hospitals, I try to figure out how much I can do and again, what the priorities are. The priority might be completing a load of laundry. It might be vacuuming. Whatever it is will have a price, a physical price. I used to feel accomplished when I could go and go for fifteen hours at a time. Now I am grateful if I can manage to get through thirty minutes of activity.

And so it goes. Getting myself showered and dressed used to take forty-five minutes with a good end result. Now it is a two hour production and the goal is a clean body and clean clothes. It’s not as hard as last week though. That is a very good thing. I miss being able to do more physical activity. I miss being able to walk my dog and feel the power of my stride underneath my body. I will never take that for granted again. My wish is that no one else reading this ever does either. How much will I get back? Yet to be determined.

I am learning the art of being gentle with myself.  I am more aware of the importance of caring for myself in the most basic of ways. The comfort of hot water on my body. The wholeness of fresh green vegetables entering my body. The smell of fresh air. The power of a comforting touch. Things which I never noticed when I was too busy running from one place to the next; from one task to the other.

This illness forces me to be more aware. Every hour, every minute is a reminder of all that is currently not working correctly in my body. Constant thirst. Constant eye irritation and difficulty getting my eyes to adjust. Weakness. A medication of some sort almost every hour. Arms that shake. Side effects from medications. Legs that don’t move like they should. Pain. Food that gets stuck in my throat when I swallow. Exhaustion.

Frustration.

Anger.

Fear.

I will be more than this.
I am more than this.

Remember to smile.

Breathe.

Remember what is important.

Breathe.

Remember that another morning will come.

And with it, hope as well.

Photo: Courtesy of Google Images

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