For Everything There is a Season

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

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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

Doctor, I Trust You

November 13, 2011 / / 4 Comments
“I observe the physician with the same diligence as the disease.” ~ John Donne

Trust.

Doctors.

For the most part, it is difficult for me use those two words in the same sentence, unless the prefix “mis” is used in front of trust. In some ways, my mistrust of doctors is surprising because in general, I am a very trusting person. However like any other relationship, the patient-doctor relationship is vulnerable and when that trust is broken over and over again, it is then difficult to enter into another patient-doctor relationship with the confidence and trust that is needed to build a cohesive team.

I have very good reasons not to trust doctors. To start with, I am a registered nurse. I have spent a lot of time working in a teaching hospital and have seen firsthand the potential and actual mistakes that can be made when treating a patient. I have witnessed more times than I can count, novice and experienced doctors alike make grievous mistakes that sometimes have been thwarted by nurses and other medical professionals such as pharmacists. Sometimes, those mistakes do reach the patient.

However my bigger trust issues with physicians is due to my years of experience in being a patient. My first bad experience came when I was twenty-four years old and had Stage Two Hodgkin’s Lymphoma, which was misdiagnosed for over six months because two different doctors did not think it was probable for someone my age to have cancer. Then I was told several years later that heart palpitations I had been experiencing were due to anxiety; only to find out four years later that I had an actual conduction problem in my heart which was causing my heart to not function properly (AV Nodal Reentry Tachycardia). The third incident occurred over the past several years when I was battling a host of physical symptoms and was told by doctor after doctor that they could not find anything wrong with me. I was convinced I had an autoimmune disorder. Several doctors were convinced I was crazy. That myth was dispelled when a lip biopsy came back conclusive for an autoimmune disorder called Sjogren’s syndrome.

It would be easy to sit back after all of this and say “to hell with them” but the reality is, I need doctors. I also need to be able to trust the people who have my life in their hands. Easier said than done. So how do we do it? How do we build a trusting relationship with our physicians?

Like any type of relationship work we do in our lives, we have to start with ourselves. We have to look at what we do on our end that acts as a barrier between us and our doctor. For me, it was a matter of checking myself at the door. Because no matter who the doctor was or what the problem was, I always thought I was right. Of course I didn’t always let my doctor know this. Sometimes I would verbally disagree with a diagnosis or a treatment idea, but then other times I would go along with what they said, yet never really trusting that they had the right answer. The problem was, I was confusing thinking I was right in terms of medical knowledge with being right in terms of listening to my own body.

The attitude of not trusting what my doctor was saying was counterproductive because in order to heal, you need to believe and have faith that what you are doing to your body to heal it is making you strong and well. I fully understand that I got this attitude from incident after incident of being let down by doctors, subsequently putting my life at risk. After a while though, you have to stop judging people based on something wrong someone else did to you in the past. It doesn’t mean we cannot be educated and well informed patients. It means that we are partners with our physicians and we need to hold up our part of that relationship.

There are several other steps I have taken to build a trusting relationships with my doctors (I have several). To start with, I doctor shop. I find a doctor who is going to treat me with the care and respect I deserve. Because if they do, then when differences arise, we can attempt to work them out. I don’t doctor shop intentionally and I know this is frowned upon by the medical community, but if I have a doctor who either dismisses my current health concerns or cannot figure out what the problem is, I leave. Pure and simple. I may have worked on checking my cockiness at the door in terms of my medical knowledge, but I know my body. I know when there is a problem. Because of this tactic, I am on my fifth rheumatologist in three and a half years. And you know what? After all that time, I finally found one who correctly diagnosed the autoimmune disorder I have and is working with me to find the most beneficial medical treatment for my disorder.

I go to my appointments prepared and well informed so that my doctor takes me seriously. I ask questions, lots of questions. Not questions to challenge their medical knowledge, but questions that require an explanation for a diagnosis, treatment, or medications. Answers that will help me to understand what the plan is and subsequently help bolster my confidence in them. Finally, I try to remember that at the end of the day, my physicians are just human. They are not perfect. They are not God. They are people like you and I who happen to have a lot of education; which enables them to be called “doctor”. Therefore, when one of my specialists forgets a detail about me and asks me again because she just returned from a weeklong conference on the other side of the country, I take a deep breath and just remind her.

Trust takes time to build. And patience. I am now starting to reap the benefits of taking these steps towards building trusting relationships with my doctors. I am more receptive to trying new approaches to managing my illness, whether it is conventional or alternative. I am less anxious. Although I still keep careful track of what is going on with my medical treatment, I am not lying awake night after night wondering if someone screwed up. I am confident in the choices I have made in my medical providers and because of that, I can give up some of the tight fisted control I have felt I have had to maintain over the past sixteen years or so.

I feel a little lighter.

A little freer.

A lot more sane.

Nor’easter 2011 ~ Part Two: Nine Days

November 8, 2011 / / 4 Comments

You can read Part One of this blog entry here: Nor’easter 2011 ~ Part One: Survival

We had hope after seeing our precious home all in one piece, but the aftermath from the storm was just beginning. It became quickly apparent to us that it would not be feasible on that day to live in our house. Access to the house was difficult at best and since we had lost power, we had no heat or water. Although we had a fireplace, I knew staying there would be extremely difficult for me since the cold (45-50 degrees) temperature of the house would affect not only my joints, but the Raynaud’s symptoms I was experiencing as well. There was also concern over the fireplace affecting my asthma. After weighing our options, Chuck and I decided to go to my brother’s condo which was a few towns over. His two bedroom home was going to be cramped with both of us, my brother, and my parents (who were also displaced) being there, but at this point, it was our best option. Luckily, our dog sitter was able to obtain a generator for her home and she agreed to keep our dog Molly with her for as long as we needed.



Trying to get down this road the morning after the storm.


Although Chuck was optimistic about how long our power would be out, I was not. Just from looking at the damage to the trees, wires, and telephone poles, I knew it would be several days before services would be restored.

Several days?
It was nine.
Nine days.
Nine days of uncertainty. Nine days of living out of a duffel bag. Nine days of traveling back and forth from wherever I was staying back to Belchertown. Nine days of trying to manage my autoimmune illness without the tools I needed. Nine days of conflict, worry, and stress.

The days immediately after the storm were like nothing I had ever experienced. Although we were able to hear from all of our family members, the same could not be said for our friends, especially the friends who were at the church with us that Saturday night for the play. Cell service (except for occasional texting) was down for about 24-48 hours and landline as well as internet communication was non-existent for many people. As we drove through Belchertown and other surrounding communities those first two days after the storm, nothing appeared to exist as it previously had. Supermarkets were partially lit on generator and open for nonperishable food only. Cashiers wore winter coats over their clothes. Access to gas was a serious problem and wait times at the gas pump could be as long as an hour. Schools were closed indefinitely. Shelters were set up in many communities for people who did not have an alternative place to live. Many people could not go to work due to massive power outages throughout New England. Life as we knew it had changed.



The red circled area is the massive power outage on the east coast



When an event of this magnitude occurs, oftentimes people feel isolated and disconnected. Although I was staying with various family members throughout the week,  I still felt very disconnected from my community and the world in general. It was posted on Facebook a few days after the storm that the parish hall at my church would be open as a shelter during the day. I clearly remember the first day I went to spend some time in the warm parish hall. I had been at my house for about an hour getting some clean clothes and necessities as well as checking on the house. Then I went to the church. I was so exhausted, in pain, and frustrated with still not having power. I walked up the steps into the parish hall and there was my minister, with a smile and a hug. All of a sudden, I felt reconnected. I felt like I was home again.

There were a lot of other emotions I felt that week that I was not used to experiencing or at least not experiencing so intensely. Anger…fear…helplessness. As the days continued on, the biggest issue contributing to all these emotions was the inability to get our power restored. The storm was on a Saturday. Fallen trees were not removed from our road until Wednesday and we did not see a single utility worker until Friday. Every time I would drive down the road, I would hold my breath in the hopes of seeing a truck from National Grid (the power company for my town) working on the lines but for five days, there was nobody. There are many theories as to why this situation happened the way it did. Some people say the storm was so devastating and covered such a large area, that it was impossible to get power restored quickly. Other people were saying that National Grid was unprepared for managing a disaster. Now looking back, I personally feel that it was a combination of those two factors. The reality was that at the end of the day, it didn’t matter the reasons. I was still homeless.

  I knew everyone I cared about was safe. I knew my home was intact. But as the days went by, I became more and more desperate to return to my routine. I missed my dog. I missed sleeping in the same bed as my boyfriend, who had decided to start sleeping back at the house in order to keep an eye on our house. Things were not the way they were supposed to be. I was baffled with myself because I was so fortunate in that we were not injured, our home was not destroyed, and I had a warm place to stay at night. What right did I have to feel so upset?

What I came to realize over the course of those nine days is that I had every right to be upset with the situation. My safety had been threatened. My home had been threatened. My overall wellbeing had been threatened. I was a victim of a natural disaster.

Victim.

This is not a word I like to associate with myself but that did not make it any less accurate. We were all victims on that fateful day in October when Mother Nature decided to take her fury to New England. But the residents of Belchertown, Massachusetts, and all the other areas hit by this devastating storm became more than victims. We became survivors, in every sense of the word. We stood by each other as best as we knew how with what we had. We gave refuge to each other. Sometimes that came in the form of a warm place to sleep at night. Sometimes it can in the form of a hot meal after eating packaged food for days. Sometimes it came in the form of a hug or a safe place to cry. I know in the town of Belchertown, I felt, as I have in the past, a feeling of community.



Our road (Route 9) two days after the storm



It has now been twenty hours since the power to our house has been restored. Twenty hours since I returned home and got my life back. But not exactly back to the life I knew. It’s a little different now. The shower feels hotter. The bed feels more comforting. The trees in our yard give me pause now.



I am a little more vulnerable than I used to be.
More humble.
More appreciative.
All because of nine days.
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