For Everything There is a Season

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

Category: writing (Page 3 of 3)

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

“What Do You Do All Day?”

August 6, 2012 / / 12 Comments
“Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.”  ~Martina Navratilova

What do you do all day? A question that I have been asked many times by a variety of people. For those of you who don’t know me, the question gets asked because I have not worked at a job for approximately three and a half years now due to a medical disability. I am forty-one years old. I have no children. In a society where most citizens work, stay home and raise children, do both, or are retired, I am an anomaly. And yes, I am very well aware of this fact.

I will be honest here. Up until recently, anytime this question was asked of me, I would get angry and defensive. The question gave me the impression that if I was not working a job outside of the home or raising kids in the home, what else was there to do in life? It made me feel that because I could not do either of these things due to circumstances way beyond my control, I was no longer useful. And that is why I would become defensive. Because for a while after I became disabled, I did feel useless. But that was MY issue, not the other person’s issue. I was in my late thirties when I became disabled and I felt like my life was over.

But my life was far from over. I started over and built a different type of life for myself and made my days productive and fulfilling in ways I never thought possible before I got sick. I don’t know what my future holds medically and maybe the routine of my days will change again someday. Although I am very realistic about the nature of my illness, I also hang on to the hope that maybe there is a chance that as insidiously as my work life was taken away from me, maybe someday it will eventually be returned to me.

Very recently, someone whom I respect and care about very much asked me “what do you do all day?” I had not been asked the question in quite a while and something in me clicked. Because it came from a person who I knew genuinely cared about me, I knew the question was just one of curiosity. It was at this point that I realized that maybe people just did not understand that there can be more to life than going to work every day or raising children. That someone like me can go through their days without being bored. Or even go through their days feeling fulfilled and with purpose. Maybe people just don’t understand how much is involved on a day to day basis in managing a chronic illness.

And because of those thoughts, here we are. Instead of getting defensive when the question was presented to me again, it made me think of how I do spend my time and I would like to share that. Not because I feel like I need to justify how I spend my days or my life but because I hope that this blog entry may help bring awareness and understanding to those people who may be curious what it is like to be in my situation. And trust me, I am not alone in my situation.

First off, none of my days or weeks are typical. Sjogren’s syndrome is a very unpredictable and sometimes progressive autoimmune illness. I can have a week or even a few months without any major issues and then suddenly be unable to function for days, weeks, or months. This is the part that keeps me out of work because you cannot hold down a job when you could be out sick several days a week or even several months at a time; not to mention that you actually have to work several hours at a time, in a row! Even when I am not having a major issue that requires immediate intervention or concern, I have daily issues that need to be dealt with that have become an accepted part of my life. An example of this is the dryness issue. Not necessarily something that would keep me from working a job but it is something that requires regular medical follow up care and daily attention.

OK, so what do I do all day? It greatly varies depending on how I feel. One of the biggest considerations is that I cannot do a full day of activity for several consecutive days due to pain and fatigue so I have to plan accordingly. Due to physical issues and limitations on some days, many activities can take me a lot longer to do, such as housekeeping. Before I got sick, I could have cleaned my current home top to bottom in about three hours, scrubbing floors and all. Now it can take me several days because I have to break the work up into sections. Keeping up the house, shopping, and cooking is my responsibility for the most part. I have made it my responsibility. I have a fiance (Chuck) who works about 55 hours a week and I do not. Although I do have a disability income, I feel that this is my way to contribute more to our household. Now of course this all goes out the window when my symptoms flare up but I do the best I can.

I sit out on an open field on a sunny day and watch my dog run free with elation. I have never had as much appreciation for the good moments in my day as I do now.

When I am physically able to, I get myself involved with worthy causes and other people. I volunteer with my church. I volunteer for whatever comes my way when I am able so that I can make a difference in this world, even if I am not getting paid for it. Sometimes I cannot do something like this for six months at a time and sometimes I can do something helpful several times in one week. I make it a point to never commit to anything on a scheduled ongoing basis because I have done that in the past and it just does not work out due to the unpredictability of my illness. I help out my friends with their children when needed. I also help out friends who are also facing their own health struggles.

Unless something very catastrophic is going on with my body, I try to get to the gym five to six days a week, even if it is just to go and float on a noodle in the pool or swim a few laps. Exercise has been a salvation for me. My hope is that as I take better care of my body, it will become stronger and this will help my illness.

I am constantly doing something to sustain and nurture my personal relationships. Because I have had to slow down, I have the distinct advantage of being able to give my relationships the time and attention that they deserve.

I have been blessed with several passions that I pursue during the week when many other people are at work and they are activities that are especially helpful when I am confined to the house or laid up in bed. Learning to cook and experiment with different recipes has been wonderful; especially since starting a gluten and dairy-free diet seven months ago. And I have also pursued my passion for writing. I truly believe that during the past several years writing has been my other salvation. I can easily spend several hours at a time writing for either my blog, a book I am working on, or for a variety of places that I send submissions to. It is through my writing that I have been able to connect with the world and help people in a way that I can no longer do as a nurse.

I spend time in a library or online learning something new.

Last, but of course not least, I have made a part-time job out of being a patient. This is by far my least favorite thing to do but quite necessary. As I was driving to Hartford last Thursday for an appointment, I did some rough calculations in my head. In the past seven days leading up to the appointment I was driving to, I had spent approximately seventeen hours in the previous week managing my illness. I know there have been weeks where maybe this was a bit less, although not by much and I know there have been weeks where this amount has been MUCH greater. This includes: driving to appointments, hanging out in waiting rooms, the actual appointments, blood work, phone calls to doctors, getting lab results, a support group, picking up prescriptions, calling in refills, calling insurance and disability companies, dealing with social security, taking medication, managing my dry eyes/mouth, saline rinses, setting up/cleaning humidifier, and preparing medications and such for travel.

Seventeen hours.
Like I said, never bored.

I truly hope that this essay has shown that it is possible to have a life outside of a 9-5 job or raising a family. There is more than one way to define yourself as a person. I used to think that if I wasn’t a nurse or if that I wasn’t anyone’s wife or mother, that I could not be of value to this world. Although there are great values to being all of those things, there is also great value in being many other things as well.

A friend.
A mentor.
A daughter.
A dog mommy.
A godmother.
A writer.
A human being.

As people with disabilities, we may not always be able to get out into the world every day to define ourselves. We have physical, mental, and emotional limitations that we need to work around on a daily basis. Most of our days may just be spent trying to meet our physical needs. But I also think that it is important that we allow ourselves, as much as possible, the opportunity to spend some of that time doing something in our day that allows us to define ourselves.

Not just our sick selves.
But as our true authentic selves.

Photo Courtesy of Chuck Myers http://myerscreativephotography.zenfolio.com/

My Writing Voice….My Permanent Voice….

December 2, 2011 / / 4 Comments

I attended a writing conference this past October and happened to have the good fortune of sitting next to a woman who belongs to a writing group in Amherst, MA. I expressed an interest in learning more about this group and she invited me to a meeting which I am sitting at as I write this.

The group is a different format than the writing group I attend in Connecticut. In this Amherst group, we initially have a five minute writing session where we write whatever we want. This is followed by a brief reading and commenting of our work. Then there are two more thirty minute writing periods that morning, also followed by reading and commenting. I thoroughly enjoyed my experience today and the following essay is what came out of my writing this morning. It was interesting for me to see that despite the fact that I didn’t have a topic in mind to write about when the group started, the ideas and words just flowed…

I sit in a room with four strangers. I feel excitement and some apprehension, although not as much as I anticipated. I used to not able to do things like this, enter a room of people I don’t know and make myself at home. I guess that is what happens sometimes as you get older; you become more comfortable in your own skin. You put yourself out there for the world to see and remind yourself that it doesn’t matter what other people think about you. For me today, it’s all about the writing.

Finding my voice.
Finding my muse.
Finding myself.

When it comes down to it that is what writing is all about for me, that finding of my voice, my muse, and ultimately myself. I want other people to read what I have written. I want my writing to give them pleasure and inspiration. However at the end of the day, the most important thing to me is that I have been true to my craft and to myself.

I sometimes become lost in my journey of writing and I have to remind myself that it is a process. A process of learning and developing more proficient writing skills. More importantly, a process of listening for the words and stories that are just begging to be written down. I don’t know if this is what it is like for other writers but I have found that when there is a story in my mind and heart to be told, whether it is a personal essay or a short story, it oftentimes unfolds in a very predictable manner.

The idea of what I want to write enters my brain sometimes insidiously and other times like a lightning bolt. I toss it around in my head for a few minutes or maybe even a few hours to see if the idea develops at all. If it does, it is at that moment that it has to be documented somewhere before it gets consumed by all the other important and non-important pieces of information floating around in my brain. It doesn’t matter where it gets written down, maybe on my laptop, a notepad, a post it, or the worn out grocery receipt sitting at the bottom of my purse. The important part is that it gets written down.

As I write my essay, my story, or my poem, I feel physically different. It feels like adrenaline is rushing through my body. It’s like I have the ideas all bottled up in my mind and my brain is scrambling to put the right words and sentences together so that coherent thoughts form onto the page. As the paragraphs form, I become more confident in what I am developing. Once I finish the first draft, a rush of release fills my body. I did it. I got all the words down on the page that I needed to. My voice is now permanent.

Photo: Courtesy of Google Images

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