For Everything There is a Season

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

Category: fear (Page 2 of 2)

City Of Courage

April 28, 2013 / / 2 Comments
“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. ” ~ Christopher Reeve
 

On April 15, 2013, a terrorist act was committed on the people of Boston, Massachusetts as well as on the United States of America. Two young men, ages nineteen and twenty-six, decided for whatever reason, to bomb the finish line of the Boston Marathon. Three people were killed at the finish line and another person was killed by the suspects several days later. Two hundred and sixty-four people were injured. Lives were lost. Limbs were lost. Families were torn apart.

The day of the bombing, I had just shut off the television to go and do some housework. My fiancé called from work to tell me the news. He told me to turn on the television. I was in the middle of something at the time and was distracted. I thought he didn’t know what he was talking about. How could there be a bomb at the Boston Marathon? Not my Boston. Not our Boston.

Five minutes later I realized that my fiancé knew exactly what he was talking about. The horror was all over the news. Pools of blood on the ground and people running in terror. Fear gripped me as I tried to recall in my mind if any of the runners we knew were running that day. The fear continued as I ran through a list in my head of all the friends and family we knew who lived in Boston and the surrounding area. What if one of them had been killed?

I also had other worries. Two bombs going off in Boston could mean what next? Was the state under attack? Hell, was the country under attack? There were so few details at that point and living under two hours from where this attack was taking place did nothing to calm my fears.

Cell service was down at times in the Boston area. Thank God for Facebook. I was able to find out that all of our loved ones were safe and sound. Prayers thanking God were whispered. For the rest of the day and the days following, I continued to watch the story unfold. A story that is still unfolding today, almost two full weeks later.

Boston is a special place to my fiancé and I. Besides having loved ones in that area, it is my fiancé’s hometown. As a child, I dreamed of living there and any road trip east from my western Massachusetts home to see the Boston Red Sox play or to visit the Boston Science Museum was special. Over the past five years, I have spent more and more time in the city. I used to see a medical specialist there and I frequent a Sjogren’s Syndrome support group on a regular basis. Since Chuck and I have been together, we have spent a lot of time exploring the city. It helps that I have my own personal tour guide who knows how to get to almost anywhere in the city! It has become a special place for us and one that Chuck still calls home.

When the bombing happened, I felt like someone had attacked our home. I didn’t know any of the people killed or injured but yet, it felt personal. I remember the devastation I felt on 9/11 and again during the Newtown, CT tragedy, but this was different for me. This was my home state. Boston may be over an hour and a half away, but those were my people that were hurt and killed. Those were my streets that carry the red stains of blood from this cruel act.

Yesterday Chuck and I went to a scheduled Sjogren’s Syndrome support group meeting at Tufts Medical Center in Boston. The meeting was in the morning and we planned to spend the rest of the sunny day walking around the city, which included paying our respects to those who lost their lives and were injured. We didn’t know for sure if there was a place at or near the finish line site to do this but we wanted to try. Chuck printed up a photo of Boston he had taken years ago and superimposed a quote about strength and adversity over the photograph. Something that may bring a little comfort to anyone who reads it.

There was a makeshift memorial right around the corner from the finish line in Copley Square. It was quite the scene. There were still news trucks lining the street and all of Copley Square had different memorials. There were pairs upon pairs of sneakers hanging by their laces from the fence as a tribute to the runners. Flowers, stuffed animals, and Boston sports caps abound. It was truly a tribute to those fallen and those injured.

As I was walking amongst the displays, it struck me. I was shoulder to shoulder with people. The area was very crowded but yet, it was quiet. I have never been in a crowd of people that was so quiet. Copley Square, Boston and the loudest sound you could hear was just the cars driving by. You could hear the hushed whispers here and there between people. A man telling a woman that it was OK to cry. A father instructing his daughter where to place her beloved stuffed owl that she wanted to leave at the memorial. You could hear the quiet sniffles. You could see the tears falling from underneath the lower rim of people’s sunglasses.

This was a sacred space.

Copley Square, Boston is no longer a place of fear and terror. It is now a place of remembrance, respect, and solidarity.

We then proceeded around the corner to stand on the curb at the worn, painted finish line. I looked across the street to the boarded up store windows that were smashed by the explosion. I looked at the storefront of a shop where injured people made their way into after the explosion. My mind flashed back to the explosion images I had seen on television. As I stood on that curb I couldn’t help but think of how it must have felt to be one of those spectators or one of those runners.

The fear.
The chaos.

Ordinary citizens enjoying what should have been an ordinary day.

Before evil took over.

Before that evil was then obliterated by the tenacity and courage of all the men and women of Boston, Massachusetts.

I said a prayer.

After leaving Copley Square, we decided to head back towards the Boston Public Gardens and Boston Common and include a pit stop for lunch along the way. As we were strolling along the Garden, I was struck by the amount of people out and about. People from the city, and who knows where else, enjoying the warmer weather. Taking swan boat rides. Playing frisbee. Single people, couples, families, and pets just enjoying the gifts that this area of the city provides. Showing their resilience while at the same time making a very strong statement.

They were reclaiming their city. They are not going to live in fear of the evil that descended upon Boston, as well as the United States of America, on April 15, 2013. Life is going to go on and the City of Boston is going to emerge as a stronger people. So thank you Boston. Thank you for showing those of us who do not live within the walls of your city what it truly means to be tough and courageous. Thank you for showing us that in the face of evil, human compassion and love will triumph. Thank you for being “Boston Strong”. Thank you for being heroes.

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

The Smell of the Sheets

March 20, 2013 / / 10 Comments

I went to lie down on a stretcher this morning and as I got comfortable on my back and waited for the radiology technician to come back in the room, I was struck by a smell. A familiar smell. One that prompted my brain to flash various images through my head, one right after the other. Images of different procedures, some painful and some not. Images of myself sitting in a hospital bed in various rooms throughout this particular hospital where I was having my test done. Images of  emergency rooms where I have sat.

What was this smell? I finally realized, while laying on the stretcher this morning, that it was the smell of the hospital sheet covering the stretcher. All of a sudden, I realized that the smell of the hospital sheet is as commonplace to me as the smell of fresh baked cookies or bread to someone else. It is very distinct. The smell was representative of all the stretchers I have laid upon in the past several years. There are too many to count. The sheets have laid below or on top of my struggling body as I have tossed and turned in the middle of the night in my hospital room, while I have vomited on an emergency room stretcher, and while a tube has been put down my airway and into my lungs during a procedure. The smell of the sheets symbolizes my life as a patient.

I realized as I was laying there this morning that I had not smelled the sheets in exactly three months, which is when I had my last procedure or test done, excluding laboratory tests. This particular test on this morning was an ultrasound of my kidneys and bladder and was painless, as well as easy for me. Basically a walk in the park. No needles, no gagging, no fear of the unknown, as I have encountered with so many other tests and procedures throughout the past few years. But the smell of the sheets reminds me of those times and the struggles I have had.

Last fall I made a very thought out decision to see a therapist/counselor who has a specialty in seeing people with chronic illness. I was at the point where I felt like I needed some help in learning how to cope with my illness and the multitude of issues surrounding being forty-one years old and disabled. I did not like the fact that my illness seemed to consume most of my conversations with my fiancé, friends, and family. I was finding it harder and harder to discuss anything else besides my symptoms, treatments, fears, and anxiety. I wanted more out of my relationships than that. Easier said than done when you have an illness that you are physically aware of almost every minute of the day. It wasn’t that I did not want to learn more about Sjogren’s, continue my book about it, or socialize with other Sjogren’s sufferers, but rather I wanted to find a way to have Sjogren’s be a part of my life instead of the focus of it.

I was also starting to struggle with significant anxiety in relation to upcoming procedures and I was having nightmares about them as well. Not surprising considering what I have gone through in the past couple of years and even before that with my lymphoma diagnosis, both in regards to procedures and medical experiences in general. I have had incisions made in the tops of my feet and had thin wires threaded up along the lymph vessels of my legs. I have woken up during a bronchoscopy because I was not properly sedated. I have had scary experiences with my heart in the emergency room and honestly thought I was going to die. The list goes on and on.

So I have been working diligently with this therapist. I have not mentioned, previous to this posting, this fact to many people. Actually only my fiancé, parents, and minister have known. I have not kept it to myself because I am embarrassed about seeing a therapist, but I guess I did not want people to know exactly how much I do emotionally struggle with having this illness. I want to be viewed and known as a warrior; a person who can handle all this illness business without much difficulty.

Yeah, I know. That’s crap. It’s the people who know they need help that are the warriors.

I have realized recently how much working with this therapist has helped me. Many times when people have trauma issues of any type, there are certain triggers that can bring back memories and feelings surrounding the traumatic event. For me, sometimes it is the smell of the sheets. The smell that brings back those images and reminds me of the pain, fear, and uncertainty that surrounds each difficult medical event. But this morning was much different when I recognized the smell of the sheets. When the smell prompted me to play back some of the difficult procedures and medical experiences I have had, mostly over the past year, I did not have the anxiety. Rather, I remembered them just as events that took place. Events that are a part of my journey. Were the events unpleasant? Yes. But the memories no longer haunt me while I sleep.

Therapy has also made a difference in my interpersonal relationships. Sjogren’s is still a part of my conversations at times. It needs to be as it is part of who I am. However I have recently found myself able to consistently focus on other aspects of my life in conversations and dealings with others. Because despite my continued physical struggles, I no longer think of myself primarily as a sick person. Instead, I think of myself as a person who has an illness. There is a huge difference. That difference actually made me realize something about one night last week. I had attended a social event with my fiancé and five friends that lasted about four hours. Not once in that time of conversing and socializing did the topic of my health come up. That is a very good thing. Not because I don’t ever want to talk about it or have people ask how I am doing but because it means that I have been able to have a life outside of Sjogren’s.

The smell of the sheets this morning transported me back in time to my struggles, but not to my anxiety and fear. This time the smell was a strong reminder to me of my strength and my ability to endure. It reminded me that yes, I am a patient. But that is not all I am. And so I have chosen to share this experience with you. To remind you that you don’t always have to be brave and you don’t always have to be strong. It is OK to ask for help. It is OK to be human.

Trusting My Body Again

April 12, 2012 / / 12 Comments

“Movement is a medicine for creating change in a person’s physical, emotional, and mental states”. ~ Carol Welch

It is two o’clock in the morning and I have to go to the bathroom. I try to get out of the bed and realize that I cannot physically get my body to sit up. I am too weak and don’t have the strength to even get myself to the edge of the bed. I wake up my fiance, who was probably half awake anyways, so he can help me get out of the bed just to use the bathroom. I am frustrated and scared.

Three months go by.

It is eight o’clock in the morning and I am staring down a very large machine called a cross trainer. Seems like the biggest bang for my buck as it will give me a good cardiovascular work out with minimal impact on the already painful parts of my body. I expect to last three minutes on it. I start and my legs and arms just keep going and going. I am on it for twenty-five minutes. I am exhilarated.

I have won.

I found out three months ago that in addition to having Sjogren’s syndrome, I was afflicted with a neurological disorder called Guillain-Barre, which was causing severe body weakness, difficulty walking, and severe pain to the point that I wished I was dead. Even the simplest of tasks was difficult. Guillain-Barre arrives like a freight train, does its damage, and leaves. I was extremely lucky that I had a milder version of it and was started on steroids relatively quickly which may have lessened the blow of the illness. I was never completely paralyzed and did not end up on a ventilator like some people do. I still count my blessings every day about that.

I have been working my tail off ever since January to get better. I already had several strikes against me due to the Sjogren’s syndrome and the Guillain-Barre, along with some blood clots in my lungs; all of which presented more obstacles in my recovery than I knew what to do with. Physical therapy was, and sometimes still is, brutal and exhausting. In addition to all the previously mentioned diagnoses, I was also diagnosed with occipital neuralgia in February. This has resulted in severe head pain and headaches. Yet another obstacle. Or an excuse, depending on how you want to look at it.

But even on my worse days, I stuck with the physical therapy and as the weeks progressed, I started to notice a significant improvement in my strength. I no longer fell over when I crouched down to get a pot or pan out of the lower kitchen cabinet. I could lift a plant above my head again. Taking a shower was a routine task again although I must admit, I don’t take my ability to do that for granted anymore. Come to think of it, I don’t take my ability to do anything physical for granted anymore.

My most recent goal in physical therapy, besides getting the occipital neuralgia under control, was to get back into the gym. I was exercising in one way or another before this whole fiasco began in January which to be honest, is no small feat because of the Sjogren’s syndrome. I am frequently plagued by joint pain, muscle pain, neurological pain, breathing difficulties, and the list goes on and on. Some days I would go to the gym and some days I would take a walk with my dog. I was usually not exercising to the point of winning any marathons, but I have found that pushing myself to get physical activity whenever possible has been helpful with my Sjogren’s symptoms; provided that I do it within reason. Not to mention all the other excellent health benefits.

I had been going to a Planet Fitness in town and had decided that instead of renewing my membership there, I was going to try a different gym that had a pool. My reason for this was that my Sjogren’s issues were occurring more frequently and if I had access to a pool, I may be able to get exercise in the pool on days that I would typically be too sick to exercise. It would be less impact on my joints. Problem was, I was hit with the Guillain-Barre before I had the chance to join this new gym. I was recently cleared by my physical therapist to get back to the gym. Unfortunately I had a fall three weeks ago and still have an open wound which will keep me out of the pool right now, but there were so many other things I could do at the gym besides swim.

If I could just get the courage to go.

Here’s the thing: I was scared. I felt comfortable at my old gym. It was simple and familiar. There has been so much upheaval in my life over the past few months with my health and I find that I am not quite as open to change and new surroundings as I was once. I feel more vulnerable. I feel the need to protect myself. I have always been self conscious about how I look and gyms have always been intimidating to me; especially one like this that is not simply laid out and where I do not know anyone. All of a sudden I felt very insecure about this new place with its different machines, new classes, and unfamiliar rules. It was my insecurity at its finest you could say.

Today was the day to just do it. I was hesitant at first because I was having more joint and muscle pain than in past weeks and my head was acting up after the physical therapist worked on it extensively yesterday. But I had previously chosen today to start going because except for some blood work, I had no doctor appointments or other pressing commitments that I could not get out of if I had to. So if I was down for the count afterwards, so be it!

No excuses.

And guess what?

I loved it.

When I got to the gym this morning, I asked about signing up for their free two session orientation and the staff person that was working the desk, Tom, talked to me about what I specifically wanted help with. This of course led to a conversation about my physical therapy, why I was doing it, my diagnosis etc. He immediately put me at ease and gave me a lot of various ideas about different work outs, especially in regards to classes and the pool. All of a sudden, I didn’t feel so overwhelmed. I felt like this was doable. I felt more secure.

I decided that today I was going to do my physical therapy exercises at the gym instead of at home and get an aerobic workout as well. I spotted the cross trainer, which is similar to an elliptical but looked more difficult as there was an incline. I liked the fact that it overlooked the pool area where I could observe a water aerobics class while I was working out. Besides some walking with my dog over the past week, I have not had any aerobic activity since maybe around Christmas and I anticipated that I would be starting from square one again. I jokingly told Tom that if I lasted three minutes without keeling over, that would be sufficient and I would move on to a bike or a treadmill, both of which had a lesser chance of making me pass out. We figured out, based on my age and recent physical issues, that my maximum heart rate should be around 140.

I don’t know what the deal was, but I was on that thing for twenty-five minutes. Granted the machine was at the easiest incline and resistance, but who cares?? Maybe it was all those physical therapy sessions or hours and hours of doing exercises in my living room. Maybe three months on a new eating plan has helped. Who knows. I was surprised at how much endurance I had and how well I did cardiovascular wise. Not that it was easy, but I got through the twenty-five minutes unscathed. After so many long months of being in bed or on the couch, it felt so good to be sweating and to be able feel my heart pumping so fast again.

It felt good to be out of the house.

To be having fun.

To be able to out one foot in front of the another.

To trust my body not to fall apart.

I know that this morning’s work out will probably wipe me out this evening and maybe even the next several days to come. There will be Motrin involved, maybe some stronger pain medication if I am desperate. Hot packs will once again be my new best friend. I also know that due to the Sjogren’s syndrome, exercising of any type will always be a constant battle for me; probably one that I will have to deal with every single day of my life. But for today, I feel like I can say that I have conquered yet one more obstacle on my path to wellness and healing.

And you know what?

It feels pretty amazing.

Photos Courtesy of Google Images

Life changes

January 11, 2011 / / 1 Comment

“Just when I think I have learned the way to live, life changes.” ~ Hugh Prather

It never ceases to amaze me how much my life is constantly changing. For so long, I thought it was changing for the worse; between divorce, illness, job loss, home loss, dog loss…it was all so much. After all these events occurred in one really lousy year, I had to learn to live my life again, differently. As many people close to me know, it was a life changing year for me and one in which I never expected to have so many positive outcomes come from but during the process, I found myself.
In the process of this finding myself, I reconnected with old friends and made new ones. I experienced the joy of living alone. I learned to rely on myself. I became more assertive and took more risks. I learned how to live my life and not let it live me.
In the midst of all this, I began dating again. However after more first dates than I care to recall and some poor decisions on my part which led to heartbreak, I decided that in the end, I was happier alone. I had no intention of getting close enough to a potential partner again to actually try and build a life with them. Who needed them? Not me. To be honest, while dating for about two years after separating from my ex-husband, I realized my life was full as it was. I didn’t need a partner to feel complete. And I definitely did not need the aggravation.

So of course when I was least expecting it, what do you think happened? I fell in love. Totally and completely head over heels in love to the point that I now doubt if I was ever really in love before. My boyfriend became not only my love, but my best friend. Being in love is wonderful. With it though, comes change and all of a sudden, my life changed yet again.
I had to learn to trust again, to think of someone besides myself on a daily basis again, and to shop with someone else while not going off on my own the whole time! One of the hardest things I had to learn though was how to lean on a partner. Don’t get me wrong; I have wonderful family and friends who I have been able to lean on often for support, but I have never had a partner who supports me the way my boyfriend does. I don’t always have to be the strong one in a crisis. I can cry. I can freak out. I can mourn. I can let him in. He won’t run away.
So where has this relationship brought me? I am now in the process of moving to his (OK “our”) home. Family and a few friends are surprised and I don’t blame them. We have only been dating for four months. If it was a friend of mine, I would probably tell them they are crazy. I would hate to tell them that we started talking about moving in together about six weeks into the relationship! But it is like they say, when you know, you know. The first time we discussed it, I wasn’t quite ready. I knew I would be eventually, but I wasn’t ready to give up my 2-3 nights/week home alone! As it was, I had to switch my “Friday night dance party” to a weeknight once my new love and I started spending the weekends together.
Yes, on a semi-regular basis (usually when I need to get some rest for the weekend and have to stay in), I crank up my IPOD on my stereo, open up a cold bottle of Blue Moon beer and dance/sing like an idiot with my dog in the living room. Then I open another Blue Moon and talk with friends on the phone or online. The dog loves it…she howls like a fool while I am dancing and singing away; quite a spectacle! But I digress…
About six weeks ago though, I knew I was ready to start sharing my precious living space. I realized that singing at the top of my lungs and dancing with my dog to very loud music would be more fun with my boyfriend. I was ready to give up my beloved apartment and work with him to make his home “ours” in whatever ways I needed to make it comfortable for me. More importantly, I also realized that he would give me the space I needed to keep my identity as a person, especially in terms of my other friendships. I wanted to share my life with him and not just a few nights a week and weekends. He wasn’t filling a void in my life, he was adding to the beauty of it.
I will admit, I am a little scared. Not of living with him. Although I am sure we will have our stumbling blocks, I am very secure in the knowledge that whatever difficulties we will encounter, we can work through them. At first I was concerned my “dark side” would send him packing but reality is, he is in it for the long haul ,as am I. Plus he has seen my dark side now and still has let me move stuff in!
No, the fear is that little voice in the back of my head that says this is too good to be true and moving in together is very symbolic of how serious our relationship is. Sometimes I just sit back and think “how did I get so lucky?” Not because I don’t think I deserve to be happy or deserve to with someone as wonderful as him; I do. But when you have experienced so much loss and heartbreak, it can make it difficult to sit back and accept that life does not always have to end up with loss and heartbreak. Sometimes life (and God) can bring two people together who were meant for each other and they can begin the journey of learning to live a new life…together.

Courage

August 8, 2010 / / 0 Comments

“Every man has his own courage, and is betrayed because he seeks in himself the courage of other persons.” ~ Ralph Waldo Emerson

The soldier who is fighting for freedom. A fireman who rescues a woman from a burning building. The teenager who fights a long battle with cancer. What do all these people have in common? They have courage.

For some people, courage seems to come naturally. For most of us though, it is a huge feat in facing our deepest fears and insecurities. No matter how it is used, demonstrating courage is very risky. It can end up in us getting injured. We could make a fool of ourselves in the process of being brave. Having the courage to face our fears can result in us being disappointed. Sure none of these situations sound very pleasant, but what is the price we are going to pay for sitting by and not facing that which makes us afraid?

Merriam-Webster defines courage as: the moral or mental strength to venture, persevere, and withstand danger, fear, or difficulty. The key words that stick out to me in this definition are “persevere” and “difficulty”. Many times, courage presents itself as people doing extreme things in extreme circumstances. That is not to say that isn’t true because of course it is. However I think that oftentimes we do not appreciate courage in the context of everyday occurrences and the incredible people who perform them.

Take the words “persevere” and “difficulty”. Don’t we all persevere through difficult times on a daily (even hourly) basis? Yes, we do. I have been struck lately by how many of these seemingly unnoticed displays of courage I have seen. You have maybe encountered them as well. It is demonstrated by someone who faces their fear of speaking in front of other people. You can see it in the person who is battling an illness but still gets up and faces each day. The father who accepts the fact that his son is gay. The woman who gets her heart shattered, yet opens it up to love again. The person who verbalizes an unpopular opinion. The man who wakes up every day to battle the demons that accompany his post traumatic stress disorder. These are just some of the unsung heroes in our midsts.

This all may not seem to be the kind of stuff that great novels are written about. However like Mr. Emerson was saying in the above quote, every man has his OWN ability to step forward, face his fears, and conquer them. So…how do you define YOUR courage?

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