For Everything There is a Season

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

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The Power of Facebook

January 9, 2012 / / 10 Comments
I have read a lot of articles lately about the hazards of Facebook. These articles have talked about how teens, and also adults, can bully each other through the use of this social media giant. The articles also mentioned how many people get so consumed by checking status updates, notifications, and playing games on Facebook that the other aspects of their lives suffer. Facebook has also been blamed for less face to face interactions between people which results in social isolation. I don’t disagree with any of these claims as I have witnessed all of these pitfalls of Facebook. But I would like to present another view about Facebook that many people I know never get to experience.

When you have a chronic illness, social medias like Facebook can be your saving grace. Since I started battling Sjogren’s Syndrome, Facebook has been an enormous wealth of information and support for me. To start with, there are a vast amount of pages and groups that discuss various topics, which is helpful when you are trying to access information about such a poorly understood illness like Sjogren’s Syndrome. These pages and groups provide a diverse selection of information regarding subjects such as nutrition, alternative health, wellness, exercise, and positive inspiration.

One of the most significant of these Facebook pages and groups is one I follow on a daily basis called the Sjogren’s Syndrome Foundation page. It is a place where patients, and others, can discuss different ways to manage symptoms and what treatments they find useful or not useful. It is a place where we can vent our frustrations to people who truly understand what we are going through. I have had the opportunity to receive some very good advice and tips from this page as well as the opportunity to help others; something that is so critical when you are out of work as a nurse and miss having the capability to give back to other people on a daily basis.

I have also had the chance to get and know some of the wonderful people on the Sjogren’s Syndrome Facebook page on a more personal basis through e-mails and online conversations. They have become a valuable part of my journey through this illness. Because of them, I have learned about the power of sharing my story and of hearing other people’s stories.

One of the stories that I have been blessed to start hearing lately is in part due to Facebook. A while back I sent a friend request to someone in my church. This person spent some time reading my blog, which I post on Facebook regularly. She realized that I had Sjogren’s Syndrome. She also has a friend, who lives in our small town, that has Sjogren’s as well. This friend and I have now had the opportunity to connect through e-mail messages. According to statistics, Sjogren’s is not that uncommon as it affects four million people in this country. However the reality is that it is an illness that most people have never heard of and is very poorly understood, even amongst the medical community. Therefore it would seem amazing that two of us have found each other in this relatively small town. It is quite a blessing as well.

Another aspect of Facebook that I have found invaluable is the easy access it has given me to my friends and family, as well as to the world in general. It is very easy to become isolated when you are living by yourself, which I did for almost two years before moving in with my fiancee; or when are suddenly out of work. You never realize how much your work life provides you with social interaction until you find yourself jobless. Between managing my health, my home, and other day to day needs, I never find myself bored, but it can be challenging to keep connected with the world from your home when most of the rest of the world is at work.

Also during the course of my illness, I have had difficulties with my voice and breathing which has made communication on the phone not a viable option at times. Issues with mobility, pain, and fatigue oftentimes makes leaving the house impossible. Facebook provides me the opportunity to be a part of our daily world when my body does not want to. For me, Facebook has not caused social isolation as is so frequently stated in these articles I have mentioned; it has freed me from it.

So despite the fact that Facebook often drives me bonkers with all of its constant updates and changes, not to mention the ongoing privacy issues, I say “thank you” to Mark Zuckerberg for his ingenuity in the creation of this social media giant. Thank you for giving me, and so many others, the opportunity to support each other and enable us to be more informed and educated patients.

Photo: Courtesy of Google Images       

Going to the Chapel

December 28, 2011 / / 8 Comments
“I will never, ever get married again. EVER!” ~ Me

Those were the words I was uttering about two years ago. I wasn’t just saying them in anger or frustration due to the fact that I had finally extricated myself from a very lousy nine year marriage. I meant them with every fiber of my being. I wasn’t against falling in love again at some point in the future, but I was making a lot of effort to put my life back together so I could become the person that I wanted to be. My plans did not include joining myself with another person for the rest of my life again, especially when I could have a great life without a partner or husband; which by the way, I still believe can be done!

As is true for most things in this life, we never account for the unexpected as we go along on our journey. My unexpected was Chuck. This incredible, loving, gentle soul who literally just popped up in my life at a time I never expected and in a place that I certainly never expected to find the one true love of my life. And I don’t use that phrase lightly. He is my one true love. The one I feel that God has meant for me to always be with. And I know without a doubt that I am his. It just took us longer than most to find each other.

I have known since the day that Chuck and I did something together just the two of us, walking Molly at the state school, that I did not want to spend a single day without him in my life. But what most people are not aware of is that our journey to this proposal has been a challenging one at times. Like every other couple, we face obstacles and one of those obstacles was one that we  had to struggle through together before we decided on the commitment of marriage. We have both done this marriage thing before and I am a firm believer that all those tough questions have to be dealt with before two people get to the altar. It’s a good feeling to now be able to sit back and look forward to this marriage without any reservation or doubt. It’s an even better feeling to know that there is nothing we cannot get through.

So how did it happen? On Christmas Eve, at home, we continued our tradition (a very new tradition!) of exchanging one Christmas present. He opened the photography book I got him and then he handed me a small box. A jewelry box. But I still did not think it was an engagement ring. I figured it was a charm for my Pandora bracelet, a pair of earrings, or a regular ring. There was a variety of reasons for my naivety, including the fact that my mind was elsewhere and did not register the possibility that he was going to propose. We were in the midst of celebrating Christmas and we had a duet we were singing for church service that night. I was very distracted to say the least.

So I opened that small white box and there it was. This beautiful diamond ring, one of the most stunning things I have ever seen. As I was looking at it, Chuck got down on one knee and put the ring on my finger. A perfect fit. He never said a word. He didn’t have to. Neither did I. Sometimes you don’t need words….

As we told our family and friends the wonderful news, it still took me some time to absorb what had happened. I was in a state of shock and I think that some people interpreted that as meaning I was caught off guard because we had not discussed marriage. That wasn’t it at all. We had discussed it. The shock was more about the fact that I wasn’t expecting the ring at that moment, on that day; one of the most joyous days of the year.

Some of the shock this past weekend for me also had to do with coming to terms with how drastically my life has changed over the past few years. I sit back and think to myself: how did I get here? At what point did my life turn around so much that I am now capable of fully loving someone, fully receiving their love in return, and creating a life for myself that is fulfilling? How did I become so blessed?

It has been an emotional few days since the proposal. Seeing my brother cry, hearing the excitement in Chuck’s mother’s voice, and experiencing the pure joy of so many people who love us. For those people who have been by my side over the past five years during one crisis after another, the joy of this engagement has been an opportunity for them to celebrate a love that has been life altering for me, for both of us. I would say that this engagement is the beginning of a wonderful life together but truth be told, it is really a continuation of the wonderful life we already have…

Photos: Courtesy of Chuck Myers

Music and Love

December 19, 2011 / / 4 Comments
“The total person sings not just the vocal chords.” ~ Esther Broner
“Singing is a way of escaping. It’s another world. I’m no longer on earth.” ~ Edith Piaf

Every year my church has a Christmas Cantata. Last year, our Cantata was going to be my first concert as I had just joined the choir about six weeks prior to the performance. A good friend of mine, Kathy, was a long standing member of the choir at that time and had encouraged me, despite many physical obstacles, to join the choir as she knew my passion for singing. Tragically, my dear friend died suddenly on December 17th, two days before our performance. It was a very difficult time to say the least. The cantata was a blur. My clearest memory of the event that day was the effort I, and the rest of my choir members, had to make to keep from crying while we were singing that morning.

One year has passed since that terrible week and another Christmas Cantata has arrived. I was looking forward to making new choir memories that were not steeped in so much sadness during this holiday season. This year, my boyfriend, Chuck, and I had the opportunity to sing a duet of the popular Christmas song Mary, Did You Know? I had never sung it before and I knew it might be a challenge because I had never even heard it sung by someone else.

Chuck was going to play the guitar as well. He found the chords online and we slowly started to put together a melody and harmony that we thought would work. The process became very interesting to me as the days and weeks went along. Anyone who knows me is aware that I have struggled to overcome a lot of my Type A tendencies in an effort to lead a more relaxed and fulfilling existence. When we were first putting the song together, I would drive Chuck crazy with all my questions about if we should do it more like this person or that person; or if we should do it more like how they do it on this YouTube video or that one.

He was so patient with me. What I learned from him as we went along was that as long as we both felt comfortable, liked the way it sounded, and FELT the music, nothing else really mattered.  All of a sudden there were no rules, no guidelines. We didn’t have to do the song as others had done it before us. We could make it our own.

About ten days before the Cantata, I had a very sudden and severe respiratory flare-up from the autoimmune disease I have. It was the worse I had experienced in a year and a half and it was one that would typically land me in the emergency room or worse yet, in the hospital. I really did not think I would be able to be well enough to sing at all on Cantata day. And I was upset, really upset. With the exception of a four week respite from my symptoms following a steroid injection, I was dealing with symptom flare-ups constantly and I was sick of it. It seemed like almost every time I tried to accomplish something that was important to me, I also had to contend with a medical crisis. The timing of this particular flare-up was horrendous because it was going to interfere with something I had poured my heart into. I tried to sit back and take the attitude of “it is what it is” but that only lasted about a day or so. I needed to get myself well enough to sing. I didn’t want to cheat Chuck or myself out of this experience together. I didn’t want to let my fellow choir members down.

There is something to be said for all the learning I have done to regards to managing this autoimmune illness. I talked to my pulmonologist and my acupuncturist and decided to step up my acupuncture treatments a bit and more importantly, go back to taking Chinese herbs. I called my speech therapist from a year and a half ago and she talked me through the techniques we had gone over at my previous appointments. I restarted the speech therapy at home with a vengeance. I doubled my effort to relieve some of the dryness caused by the Sjogren’s which I knew was making the situation worse.

Forty-eight hours and I was better, much better and as the days went by, my breathing not only improved, but my voice got stronger. I was diligent about protecting my vocal cords because I knew I was not yet 100%.

I should know better than to get too comfortable with my body when I do not have my illness under control. Two days before the Cantata and I noticed it was painful to eat. I looked in my mouth and saw that my inside right cheek was ridiculously swollen. From looking at it, it appeared I was having another flare-up of my parotid gland with a likely infection. I was also having terrible headaches and sinus pain with nasal discharge that also looked infected, which of course was affecting my voice.

After hours of trying to get a hold of my rheumatologist on a Saturday (I found out today that they don’t have weekend/night coverage), I just said to hell with it. I knew I had an infection and probably inflammation as I had been through this once before. I started myself on steroids and antibiotics which I luckily had extra supplies of at home.

Twenty-four hours later, Chuck and I sang that song.
And we sang it well.

Shocking considering I have, guess now I can say “had”, terrible stage fright. I had never sung with just one other person before. Usually I sing with a whole group of people and even that sometimes leaves me a little rattled. When Chuck and I ran through the song at choir rehearsal several days before the performance, I was responsible for holding our music because he was playing the guitar. My hands shook so bad when we rehearsed that we decided to use a music stand instead because otherwise he couldn’t follow the page with the words shaking all over!

That day that we sang that song though, I didn’t shake at all. Because this time, I looked at him while we were singing. I focused on him and the beautiful music that was coming from his heart. In those two and a half minutes, it was just him and I; not in a church with a LOT of people, but in the safe refuge that we call home.

There was something incredibly special about singing that song with Chuck. I know this sounds corny, but it truly has brought us closer together. We each have had more on our plates than usual lately which has resulted in a lot of stress and sleepless nights. Although I think we do well with supporting each other, practicing this song together night after night was a different way of supporting each other’s wellbeing and sanity. We had a common goal that didn’t involve job stress, health stress, financial issues, or relationship issues.

It was just us and the music.

It was our way of honoring Kathy.
It was our way to honor the upcoming birth of Jesus.
It was our way to give to the loving church community that we are involved with.
It was our way to give to each other…

Not just music, but love as well.

Mary, Did You Know?
http://www.youtube.com/watch?v=AHHwlmf7SeE&feature=g-upl&context=G2a64dc9AUAAAAAAAAAA

Photo Courtesy of Google Images

To My Friend ~ One Year Later

December 11, 2011 / / 5 Comments
You can read To My Friend written on December 17, 2010 here: http://www.christinemolloy.com/2010/12/to-my-friend.html
“Death ends a life, not a relationship.” ~ Robert Benchley

It has been almost one year since you left us my friend. I have been thinking about you a lot lately, especially as we get ready for another Christmas Cantata.  As December approached this year, I found it very difficult to think about the events that happened at this time last year. It felt like I was mourning you all over again, although to a lesser degree. But that has changed over the past week. I gave myself the time and the space I needed to grieve again and now I am  remembering the good times. When I think of asparagus and copper pennies, I cannot help but smile. As next weekend approaches, I just want to remember you with smiles and with laughter. I think that is how you would want it.

Mary sits in your choir seat now. It seemed like the right thing to do after your memorial service…the healthy thing to do. Sometimes when I look at that chair, I remember how your choir robe was gently laid over it with the photo that Chuck took; which was how we had it for the Cantata last year. I try to sit next to or as close as I can to Mary, as much as possible. I know it sounds strange but somehow sitting in that seat next to where you used to sit makes me feel closer to you.

You would be so happy with the choir. Most of us that joined with you, Alex, Tom, and Meaghan for the Christmas Cantata last year are still singing together a year later. Many of us never intended for our choir commitment to extend past the Cantata but in true Kathy form, you brought us all together and we couldn’t break that circle apart.  Plus your gentle persuasion on Carla paid off. She was not only our choir director for six months while Dan was away, but she sings with us now that Dan is back. Thank you for bringing her talent and her special friendship to our church. She has been such a blessing.

For the longest time, it was so difficult for me to go over to the house after you left us. It didn’t seem right that you weren’t there. I would cry all the way home the first few times I was there but gradually, it got easier. Without even intending to I think, Harry made it easier because he was so open about your passing and about how things felt different. It helps to be able to talk about it. Mary and I went to the house last weekend and helped Harry put the Christmas tree up. I felt like in a small way, we were honoring you by doing that. Instead of mourning you, we were celebrating you; especially with all of those purple Christmas decorations! It helped me be more at peace. I hope it did for your family as well.

You were taken from us way too soon at too young an age.Your death has given me pause about what is truly important in life. I try to remember that when I am feeling beaten down by life or when I am facing obstacles that seem too difficult. I remind myself that in a blink of an eye, it can all be taken away. Not only my life, but the lives of those around me. So I try to be more patient, forgiving, and tolerant. I remember to cherish my days and not squander them.

I still struggle once in a while with the singing when my health problems are flaring up. It happened again very recently, but you were with me. I remember your words from last year, clearly in my mind, like it was yesterday. You encouraged me to work hard and beat the odds to be able to sing. And when I didn’t think I was good enough, you believed in me because you knew that like you, the music was in my heart.

Thank you for your faith in me.

Thank you for your friendship.

Thank you for your love.

You are always in our hearts.

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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