Monday, June 27, 2011

Bloodless Family

"It is not flesh and blood but the heart which makes us fathers and sons." ~ Johann Schiller

"What greater thing is there for human souls than to feel that they are joined for life - to be with each other in silent unspeakable memories." ~ George Eliot

Family: a group of people united by certain convictions or a common affiliation: fellowship

This is definition number three out of eight listed by Merriam-Webster dictionary when you look up the word family. It does not say anything about blood ties or living under the same roof. To me, it is a simple and yet powerful definition of the word family; one that has resonated with me not only through this past weekend, but gradually over the past several years or so.

That which constitutes a family unit has drastically changed since I was growing up. Luckily for society, a family no longer has to be comprised of a husband, wife, and 2.2 biological kids; accompanied by Fido or Kitty. Rather, we have additional constellations of all sorts: two women, two women with children, two men, two men with children, widows with children, women with pets, men with pets, and on and on. We have step-parents, step-children, boyfriends with children, girlfriends with children, as well as multiple generations; some even being crazy enough to all live under the same roof!

I love though that Merriam-Webster has put into words another definition of family that is not stereotypical and that is: people united by a certain conviction or common affiliation. I have that. See, because in addition to a loving biological family as well as a loving "inherited" one, I also get to have a church family. I have been a member of the Belchertown United Church of Christ in Massachusetts for several years now, a place by all definition of the word is like home to me. Sure, we are not bound by the ties of blood but we are bound by those things which I think is just as powerful and that is our God, our hearts, and our fellowship.

That was strikingly apparent to me this past weekend. I made a joke to a friend of mine from church when I saw her last evening about how I see her more lately than my own family; meaning of course my biological family. It had been a weekend filled with activity for three days with various members of my church family. We spent time together at the annual Relay for Life, Sunday morning church service, and choir rehearsal. However for me, the highlight was that some of us were blessed enough to witness two of our own get married. That is what really got me thinking about this whole church family thing on an entirely different level.

Meghan and Scott have been members in our church for a while now and since we have become friends gradually during that time, I knew their wedding day would be special. However, I was not quite prepared for the emotion I felt as Meghan stood at the head of the church aisle with those two large church doors opened. We have watched them grow in their relationship with each other and with us during part of their courtship and engagement, so one could not help but have those feelings of pride and love as they took that gigantic step towards starting a new life together. There is something to be said for watching those from your own family take on something as powerful and significant as the leap of faith that is required to enter into a marriage.

That's how it is there. As a church family, we get to be part of those silent unspeakable moments that George Eliot so eloquently describes above. Sometimes those moments are not always as joyful as the wedding was. In addition to this celebration, we have also had several funerals recently within the past six months. We have had some of our family members fall ill or ones who have sent their relatives to war in the Middle East. We have worked together to assist tornado victims in surrounding communities. Both joyful and sad, these unspeakable moments connect us with God and with each other.

Like all families, this one is not perfect. We disagree when we don't see eye to eye with one another. That is what happens when you get one hundred plus people in the same family! Like all families, feelings can get hurt because people are just that, people. They have stress and personal issues.  We each have different experiences with one another and the nature of our individual bond with each person in the family is different. When you think about it, that doesn't make it different than any other family. I am definitely closer to some members of my biological family compared to others. In my church family, we have probably one of the most diverse groups of people I have ever seen in a church and each of those people is unique with their own special talents, abilities, emotional baggage and imperfections. That has been one of the greatest learning experiences for me with this family: learning to be connected and stay connected despite people's flaws as well as learning to resolve differences and occasionally conflict.

As I get older and maybe just perhaps a little more mature, I have learned that at the end of the day, it is not about the size of your home, how much overtime money you earned that year, or where you vacationed to that summer. Life is about people and relationships. It's about connecting with others and forming loving relationships that sustain and nourish you. It's about cultivating family, regardless of what your definition for that may be. I know for me personally, that no matter where my life's journey takes me, I will always have a family at the Belchertown United Church of Christ that I am connected with both in my heart and through God. And once again, for that, I am quite grateful.

Photos: Courtesy of Chuck Myers

Tuesday, June 21, 2011

Warning: Toxic!

"Some of the biggest challenges in relationships come from the fact that most people enter a relationship in order to get something: they’re trying to find someone who’s going to make them feel good. In reality, the only way a relationship will last is if you see your relationship as a place that you go to give, and not a place that you go to take." ~ Anthony Robbins

Debbie Downer...Judgmental Jims...Disrespectful Dannys...Neverenough Nellies...Insincere Illissas...Dream Killing Keiths...Narcissistic Nancy...Manipulative Mary. These are the buzz words you find online now to describe what is otherwise known as toxic personalities. I am not going to go into a lengthy description of each because well, my readers are very capable of doing that on their own and besides, most of them are self-explanatory. For example, a description of person who is considered a "Narcissistic Nancy" is someone who feels that the world revolves around them. They cannot see outside themselves and make that fact pretty darn well known. The end result is that they leave you feeling pretty drained and wanting to run away fast as you can!

Let's face it. We all know someone who has a toxic personality so to speak. Most of us are even involved in some type of relationship with someone like that. It is a topic that I have been wanting to write about for some time but I am always hesitant. Why? Because first, I seem to struggle a lot lately with what kind of topics to blog on. I have so much that I want to write about, especially about relationships, but I walk a fine line between writing how/what I want and respecting people's privacy. Also, I am not big on the idea of someone sitting there wondering if something I am discussing is about them because most likely it is not. However in order to be the type of writer I want to be, I have to write with honesty, emotion, and integrity.

Second, my hesitancy has been over the phrase "toxic people" because it tends to put people into little boxes or compartments and that is not how relationships work. They are messy and complicated. They are grey, rather than black and white.  I have found over the past several years that the more I put myself out there in the world, the more complicated developing and maintaining relationships becomes. People are so complex; in good ways and in bad. I am not talking only about relationships and toxic people (I will keep using that phrase just for an easy reference) in the romantic sense; but in the context of all our relationships whether they are with family members, co-workers, or friends.

During the time I separated and subsequently divorced from my ex-husband I pretty much figured well, that is that. All the emotional drama is going to go away. What I came to realize though is that I have a habit of developing toxic relationships of all forms. I think this is true for many of us. By saying this I don't want to imply that I am somehow a blameless innocent victim because really, when a person is involved with another person that is considered toxic, we feed into it. We allow people with toxic personalities to have control over us when all we want to do is to tell them to stop draining the life out of us!

In my opinion, those with toxic personalities aren't necessarily "bad" people. I think at one time or another, many of us have displayed the traits of a toxic personality like I mentioned above. Truth be told, I know I have. There have been times in my life that I have probably unintentionally drained the living hell out of certain people I am close to in my life. Maybe you can call it being needy; maybe you can call it being toxic. Maybe those people would say otherwise, who knows. I do know for a fact that looking back, I know a time when I might have been considered toxic to a very close friend of mine. She and I have been friends for about 10-11 years now and there were YEARS that she gave and gave to me, expecting nothing in return. I tried to be as good a friend to her as she was to me during those years but reality was, I couldn't at the time. I don't think it made me a bad person, just not a very good friend. She stuck with me though and I hope that now, I can do our friendship the justice that it so richly deserves.

Toxic relationships do not necessarily have to be overt such as with physical or verbal abuse. There is no clearly defined definition for a toxic person or relationship so I would like to offer up my own definition of a toxic person in one's life. It is someone who drains you on a consistent basis; the key word here being consistent. We all go through difficult times when we need support and friends on a daily, if not hourly basis. Some people who are toxic though always take and rarely give. Others are possessive and behave in a passive-aggressive manner when you choose to spend time with someone else. Another example might be a friend saying something to embarrass you in front of a group of people, disguising it as a joke. Or someone who is constantly criticizing you or your choices. Yes, we are all responsible for how we let other people affect us with their words or behavior but to me, a toxic person is someone who on a regular basis just makes us feel bad. It's that simple. I am not even sure that it matters whether you are an oversensitive person (like myself) or someone who tends to overanalyze things and not lightheartedly take a joke. If being around someone consistently makes you feel bad about yourself, them, or the world in general, you've got a problem on your hands.

So OK, what do you do about it then? Well, there are all kinds of philosophies about how to handle toxic people and relationships. Some people say just get the heck out of the relationship which sometimes may be necessary and sometimes not always possible. I am definitely not a shrink, but I say the best way to approach these types of relationships is to take control and own it. Inundate them with positivity when they are negative. Give the relationship some distance for a while. Talk to them; maybe they are not fully aware of their behavior and how it affects others. Confront the behavior directly in a calm and rational manner. Don't feed into it especially when the behavior revolves around constant gossiping or complaining; negativity breeds negativity. Be the person to break the cycle. Be proactive in who you spend your time with to avoid getting yourself into a toxic relationship to begin with.

I can honestly say that the amount of toxicity in my life is the least it has been in a very very long time. This is not by chance. It requires a lot of work and thought. It has resulted in a lot of tears as well. I have had to reevaluate a lot of my interactions with those around me and just as importantly, my own behavior in order to develop and sustain all types of relationships that are nourishing, whole, and healthy. Because in the end, that is what we all deserve.

                                                                           Photo Courtesy Google Images

Thursday, June 16, 2011

Through the Lens

"The goal is not to change your subjects, but for the subject to change the photographer." ~Author Unknown

"While there is perhaps a province in which the photograph can tell us nothing more than what we see with our own eyes, there is another in which it proves to us how little our eyes permit us to see." ~Dorothea Lange

My boyfriend loves to take photographs. I have to admit it is something I never had too much interest in until Chuck and I became friends. I would enjoy taking pictures at special occasions and I was really into scrapbooking for a while there; but that was pretty much it. He is not the casual photographer though. It is his passion. And I love that. I love how photography for him is the equivalent of writing for me. Something that we are compelled to do. Something artistic and expressive. Something that we use to look at the world in a different way.

He has become quite serious about his craft since undertaking it. It is not his career at this point although I think it really could be. Honestly, I don't know much about the art or technicality of it all. He explains things to me and sometimes I get it and well, sometimes I don't. What I do get though is that to me, his work is special. I know that can sound easy for me to say because he's the love of my life and all, but it is more than that. He doesn't just snap a picture. He snaps an emotion, a reflection, an experience.

My favorite part of his work is the photographs he takes of people. They are usually unposed and unsuspecting. The images make you wonder what the person is thinking at the moment and sometimes you can even imagine or know for a fact what they are thinking or experiencing. He talks about them, his photographs and what he sees and thinks when he takes the pictures. They make me think as well. I find myself looking at people and the world in general a little differently.

Because of this, I would like to share some of his images with you so that maybe you can enjoy them as much as I have.

My dog Molly and I resting on the train tracks during a hike

View of our church from the balcony

My mom and dad at a family party
Magic Wings Butterfly Conservatory, South Deerfield, Massachusetts
Bike path in Northampton, Massachusetts

 Very annoyed gorilla at the National Zoo in Philadelphia, Pennsylvania

This is me concentrating very hard on being patient

I have to admit, these are some of the photographs I am partial to and I have to stop somewhere because otherwise I could be downloading pictures all day! Now you get to pick a favorite....

Photos Courtesy of Chuck Myers

Monday, June 13, 2011

The Prednisone Wall

"Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it."

~ Michael Jordan

I am staring up a giant wall that I like to call the prednisone wall. For any of you who may not be familiar with prednisone, let me elaborate. It is a medication called a steroid used to treat a variety of medical disorders including asthma, arthritis, inflammatory bowel disease; basically any type of disease that involves inflammation. It is a blessing and it is a curse. It can save your life and when not used properly, it can kill you. Prednisone is one of the least expensive medications I can get my hands on, but it comes with quite a scary list of risks and side effects, including but not limited to: diabetes, depression, insomnia, memory loss, ulcers, bones loss, cataracts, life-threatening infections, the list goes on and on. You know how when you get your prescription filled at the pharmacy and it comes with the medication fact sheet listing all the possible side effects? Yeah, well the problem with prednisone is that if you are on it long enough or often enough, you WILL get those nasty long term complications they warn you about. Guaranteed.

I have been on and off prednisone at least ten times in the past two and a half years for an autoimmune disorder. Sometimes it has a course of five days but more often than not, the course has run at least four to six weeks; sometimes even months. I have never in my life had the type of love-hate relationship with anyone or anything that I do with this medication. It has helped relieve joint pain that was so severe that I wished I was dead. It has helped me to breathe. It has relieved inflammation in my sinuses and in my stomach, allowing me to eat normally again. It has been my lifesaver.

It has also been my curse. I have been on it enough times now that I am better prepared for what will probably come in terms of side effects; although every time does seem to be a little different depending on the dose and how long I am on it. Until four days ago, I was off it for six whole months; a record for me. However my rheumatologist and I agreed that it was time to go back on it due to the possibility that I have autoimmune induced hearing loss and the need to try and prevent further complications until I am evaluated by an ear specialist. It was also time to try and settle down some other symptoms that just were not getting better on their own.

So, today is day four. Although the insomnia has not been a major issue this time around, the hunger and food cravings were in full force over the weekend. If you've never experienced prednisone, you don't know what you're missing. You eat a full meal and thirty minutes later you are starving. All you want is sugar, refined carbohydrates, anything bad for you. No exaggeration, I could eat a full meal every two hours and still be hungry. I could sit down for dinner and eat a whole large pizza by myself. And half a loaf of garlic bread. And a plate of brownies. I would still be hungry in two hours after this elaborate feast. Food is all I can think about when I first start prednisone. I made the decision before I took that first pill four days ago that I was just going to do the best I could the first 48-72 hours. If I was hungry, I was going to eat all the calories I was hungry for while trying to keep it somewhat healthy (that kind of worked...a little). Usually after that period, the hunger and cravings settle down. I was going to cut myself some slack and that I did. I got as much exercise as I could as well.

The prednisone wall also makes me jumpy and restless; another issue that usually settles down within 72 hours. The slightest amount of stress can set me off and I feel like I just want to jump out of my skin. It used to get so bad, that I would have to take anti-anxiety medication for it...or drink lots of alcohol...or both. But I can't do that now. I have worked too hard to get myself healthy to be throwing all that junk in my body! So instead, I am resorting to every self-care and anxiety relieving technique I have ever learned. Surprising result: they work. The trick is to listen to your body, know when you need to step back and rebalance. Then figure out what works. For me, it usually means time alone at home, with low lights, candles going, no TV or excess stimulation at all. I take a hot shower and then surround myself with things I love (and that don't talk to me!) such as books, magazines, scented lotions, etc. It is about changing the environment.

My last hurdle to get over the prednisone wall is the crazy ass mood swings that it produces. I know this issue is not exclusive to me, but it can be a nightmare. It is also an issue that can settle down quite a bit after the first 72 hours, but then resurface the second the doctor decides to start weaning me off the medication. I am not talking the "weep a little while you watch Lifetime" mood swings. More like one minute I am having a very rational discussion with my boyfriend and the next minute, I am crying uncontrollably; for no reason. There is no rhyme or reason. It requires a lot of explaining on my part which is hard when I just want to curl up in a ball and cry. I am much more impatient and easy to anger. I can be difficult to be around which is now even harder because I am not living alone. In essence, I am not me. However I have found the best way to deal with this is to be upfront with people about the medication and keep myself out of situations that will get me into trouble, so to speak. If I am having a particularly difficult day with the crying, I just hole myself up in my house and let myself cry, instead of trying to fight it all day. Instead of struggling and feeling guilty, I stay home and take care of myself until I can get through to the other side. The other side does come.

These are all hurdles that one little tiny pill throws in front of me every time we get back together...the one that I love and I hate so much. I have discovered a lot about the ways I can climb the prednisone wall instead of giving up and just letting the medication control me. Hopefully this will be one step closer to ending the love-hate relationship I have with prednisone and the beginning of a more peaceful coexistence.

Author's Note: Please feel free to share your good and bad prednisone experiences below!

Photo Courtesy of Google Images

Thursday, June 9, 2011

Running A Race I Cannot Win

From the bitterness of disease man learns the sweetness of health. ~ Catalan Proverb

Most of the time I feel like I am running a race, maybe even more like a marathon. There are hills and conditions working against me. There are people cheering me on. I am not running to win; I am just running to cross the line and finish. The problem with this race though is that there is no finish line. This race never ends.

I was driving back from an appointment with my rheumatologist today and these are the thoughts that came to me. After three exhausting hours at the medical center where my doctor is located, I was just beat. I have this autoimmune disease called Sjogren's Syndrome (well they are pretty sure I do anyways) and just when I think I am winning the race to get better, I get pushed back to the previous mile marker. I guess it could be worse though, I am just grateful that it's not back to the starting line.

As far as doctors go, this new one is pretty top notch in my book. There are issues with communication amongst her office staff and her, but trust me, there are more stressful things to deal with than that when it comes to doctors. I was doing pretty well physically there for a while, considering that about two years ago, I was having a difficult time even getting myself into the shower. But I get so frustrated when I do better for a while and then I approach the hill again in the race. It is even harder when the hill is one I have not climbed before.

I think I have adapted so well to the race that I sometimes downplay when I am struggling. I don't want to admit that maybe things aren't quite as good as I would like. Once the doctor and I got talking today, it was clear that things are hitting a curve in the road. My asthma is flaring up from the extreme heat here in New England. I have had issues with sun sensitivity and rashes. Joint pain, although well controlled during the day, wakes me up sometimes during the night. Sores in my nose from extreme dryness. And the big granddaddy of them all, a significant hearing loss which is not getting better. Maybe autoimmune related, maybe not. I have gotten the impression from this doctor that she does not get excited too easily and she seemed concerned enough to want to get my hearing evaluated right away. Then, I left the office with a prescription for steroids (again), labs, and an x-ray.

I know that so many people have obstacles much bigger than I do in their race. I am very well aware of the progress I have made in my daily functioning and health over the past few years but the bottom line is: I don't want to be in this race anymore. I don't think that too often because I have had a numerous amount of blessings come from this illness. For just a day though, I want to remember what it's like to jump right out of bed and start my day without pain. I want to be able to go to a job. I want to not have to cancel plans when I am sick. I want to go sky diving and zip lining. I want to be well enough to care for my parents when they enter their more senior years. I want to be healthy and well.

I guess the problem though is that with a chronic illness, you cannot look at it like a race because as I mentioned a few paragraphs previously, there is no finish line. It's not like when I had cancer and I got treatments; then I was cured. There is no cure for Sjogren's. There is not even an approved treatment for it. The best I can do is to continue to live each day as fully as I can to the best of my ability. I can keep writing. I can keep cherishing my friends and family. I can keep laughing. I can keep trying to make a difference in the world. Most importantly, instead of treating my illness as a race, I must treat it like a journey. One that I must approach gently, yet with determination, courage and laughter.

Photo courtesy of Chuck Myers

Sunday, June 5, 2011

The Fury of Mother Nature

I sit here on my couch, in my home, freshly showered with clean clothes on. I have my boyfriend sitting next to me working on his computer and my dog resting quietly on her blanket. We have a roof over our heads. There is food in the refrigerator. We have electricity and running water. Except for a sunburn and very irritated eyes, I am comfortable.

That is not so for many families living in communities surrounding mine. Here in the western part of Massachusetts on Wednesday June 1, 2011, several tornadoes ripped through this part of the state leaving a pattern of devastation so rarely, if ever, seen in this little hub of New England. We just don't get tornadoes of this magnitude in this part of the country. It is something that we hear about happening in Missouri or Kansas. Massachusetts averages two tornadoes a year and to be honest, you usually never hear about them. Most of us have only seen photos on TV of torn off tree tops and flattened homes.

I really wanted to find a way to help some of the victims from this terrible tragedy and was fortunate enough to be able to join my church to spend a day in the local town of Monson to assist a family and their neighbors with sorting through the debris of what were once their homes. We brought supplies and just as importantly brought some hope and some faith. I had lived for two years in the quiet town of Monson many years ago and therefore had a soft spot in my heart for this quiet and friendly town.

Nothing can really prepare you for the sight of the landscape you see when you approach a part of a town that has seen a tornado tear through it. The trees are gone, or at very least the tops of them. Whole buildings are collapsed. There are wires down on the street every which way you turn. National Guard personnel stand on the street corners and walk down the sidewalks. As we drove through, it seemed to me that the scene might be similar to a war zone as depicted on TV. There are claims adjusters and other official looking people going from site to site. People's belongings are strewn all over not only their lawns, but on their neighbor's neighbor's lawn.

We sorted and we sifted. We made piles. We lifted, hauled, and carried. We gave hugs. We tried to console without letting the victims see our tearful eyes behind our dark sunglasses. Part of me felt like I was privy to the insides of someone's life as I was sorting through their clothes and other personal belongings. I couldn't help but imagine what it would be like to be so displaced; to have strangers sorting through your belongings and in less than two minutes, to have your entire existence as you know it changed forever. I don't know personally the people that we helped today, but I knew that I just wanted to turn back the clock for them and freeze May 31, 2011 so that they never had to experience the loss and sorrow associated with June 1, 2011.

However despite all of the loss, there was so much hope. We heard several stories of survival. I was shown a small space underneath the complete collapse of a home where a woman and her 12 year old child crawled out from the basement. I saw children about 11 or 12 years old walking the streets offering food and water to the residents of the neighborhood as well as to the men and women working to help restore power lines and such. I witnessed an incredible amount of supplies being hauled into the neighborhood; people sometimes having to carry them for a mile or so because vehicle access was limited.

It's funny because oftentimes we go about our day to day lives and get so caught up in what is NOT good in this world....the people who hurt us, scorn us, or just plain aggravate the hell out of us. But I have to tell you, there is a lot of good in this world. There is also a lot of human resiliency. When people are faced with the most adverse of circumstances, they find something deep inside themselves that they didn't know that they had. They rise to the occasion.

I started writing this blog posting last evening as this all took place yesterday, but I had to put it away for a bit before I could finish it. Sometimes when an experience is overwhelming to me, I have to write down some initial thoughts and then come back to it. It can be because I am having a difficult time with the writing. In this instance though, I had to come back to it because the emotions of the day were so overwhelming to me yesterday. They still are, but the shock has worn off a bit. I feel like I was part of a process that was so raw on a human emotional level. There was something so deeply personal and humanistic about helping these disaster victims. People like you and me. People who, by chance, live in the path of Mother Nature's fury. People who will face their obstacles, rebuild, and continue on.

Photos: Chuck Myers and Christine Molloy