Category: Uncategorized (Page 1 of 2)

Happy Summer, everyone! I had a great experience recently that I’d like to share with you. For those of you who are not familiar with the website The Mighty, it is a supportive, safe community for people, who deal with medical/health challenges. I have found many of their essays to be helpful to me personally, both for information and to read about struggles other people with illness face. I first heard of The Mighty many years ago and had considered submitting amd essay, but was too focused on my blog at the time.

Recently, a friend encouraged me to submit a piece of my writing to The Mighty and I did. I haven’t done a lot of formal writing recently (just journaling), and it felt so good to create something again.

The essay is titled “I’m No Longer Ashamed of Using Disability Parking with an Invisible Illness” and I’m happy to report that it was published on The Mighty’s website earlier this month. If you are interested in reading it, I’m including it below. Happy reading!

I’m No Longer Ashamed of Using Disability Parking With an Invisible Ilness

Quick post from storm ravaged Massachusetts.

On Saturday October 29th, a major winter storm hit New England and has literally paralyzed many areas of this part of the country. The area I live in, which is Western Massachusetts, saw about a foot of snow which while not unheard of around here, the damage it has brought is unusual. Because of the storm’s early arrival, leaves were still on trees and most of the western part of the state, as well as other areas of New England, have lost power due to fallen trees. After driving around this area hunting for gas and food over the past few days, I am shocked that more people were not injured or killed. There has been one death that I am aware of related to this storm.

That was three days ago. I am forty years old and have never experienced anything like this. It is difficult to find gas in this area and food is limited to non-perishables at stores with no power. Some areas are slowly having power restored thanks to the efforts of our local power companies as well as many out-of-state companies. However the damage is great due to the amount of downed trees and power lines. Communication is difficult however appears to be improving very slowly.

My boyfriend and I are fortunate because I know one person who did not lose power through the grace of God. We have been staying at my brother’s house about 25 minutes away from us. Our home has no heat, electricity, or running water (we have a well) therefore we are quite grateful to be here. Our dog Molly was spending an overnight with a dog sitter Saturday night until Sunday afternoon. Thank God she was there because we were unable to get back to our home Saturday night and have not been able to stay at our house since. Our dog sitter also lost power but she got a generator and has agreed to keep Molly with them until we can bring her back home. The circumstances at my brother’s home make it difficult to have her here as my parents are also camping out here during the day. I am so grateful for this dog sitter.

We were finally able to get to our home after the police gave us permission to drive down to the house to get my medications, clothes, etc. Then yesterday Chuck and I went back to make the driveway accessible and clean up some trees. The house is in one piece. The worst thing that happened was we lost a good majority of our perishable food and will probably lose the fish tank.

I plan to write more about the experience in the near future but the shoveling I did yesterday (Chuck was doing trees), sleeping on an air mattress for several nights, the change in my environment (i.e. dryness factor), and overall stress has made an already existing autoimmune flare worse. I have no access to my acupuncturist right now for obvious reasons so I caved and took some narcotics and am going to try and get some rest in my brother’s bed while he is at work and Chuck is at work. I am hoping later today or more likely tomorrow to get to my dog sitter’s house to spend some time with Molly. Meanwhile, we wait for the power to be restored and for life to return to a more normal state. We also sit in the great appreciation of how fortunate we are.

“The most precious gift we can offer others is our presence. When mindfulness embraces those we love, they will bloom like flowers.”  ~ Thich Nhat Hahn

Journeys…

Trips…

Vacations…

Different words for the same event which are basically opportunities to get away from it all. You figure out where to go, pack your bags, find a dog sitter (well I do anyways) and off you go. You have a specific amount of time ahead of you to explore, relax, or if you are really lucky, a combination of both.

I went on a journey recently. I am calling it a journey rather than a trip or vacation, because I learned something from the six days I got to leave my home. Our journey consisted of spending a few days in Portland, Maine and then exploring back roads through New Hampshire and Vermont on our way to upstate New York to visit Chuck’s two sisters. We didn’t initially plan it this way but we knew we wanted to be in both Maine and New York during his one week off from work and due to health reasons, the eight hour trip was too much for me to do in one day. So that is why we ended up making an adventure out of it. The only definitive plans we had before we got on the road was to participate in a tugboat event for the MS Society and visit his sisters towards the latter part of the trip. That was it. Everything else was based on what we felt like doing when we woke up that day. No expectations, no schedule.  It worked out perfectly because not only did this plan allow for a lot of flexibility in the managing of my autoimmune disorder, but also because it gave me the opportunity to experience the concept of mindfulness.

According to Sylvia Boorstein, mindfulness is the aware, balanced acceptance of the present experience. It isn’t more complicated than that. It is opening to or receiving the present moment, pleasant or unpleasant, just as it is, without either clinging to it or rejecting it. I think that is a great definition but I also like to think of it simply as being present or aware. I don’t think I am alone in the fact that I have wasted a lot of time worrying about the future and over planning things. Being present or aware in the moment you are experiencing doesn’t allow for worry or planning. For years and years, I thought it was the only way to manage my anxiety. But the reality was, the worrying was creating more anxiety.

It is not an easy thing to do, to be mindful of your present and fully absorb your surroundings as well as your thoughts and feelings in that moment. That is why taking a journey is such a great opportunity to do so. In our normal day to day lives, there are so many distractions. For us, the first distraction that was eliminated was Chuck not having to work for nine days. Add to that the elimination of distractions such as maintaining a home, taking care of a dog, managing my multiple medical issues/appointments, church and social commitments and what I found was that I got to be present in moments with him and oftentimes with just myself every day that week. When we came across one of the most beautiful lighthouses I ever could have imagined seeing in Maine, I was fully aware of everything about it from the smell of the ocean water hitting the rocks to the sound of the seagulls flying overhead. Instead of just touring the lighthouse and its stunning surroundings, I was fully experiencing it. I was aware and in the moment.

As Ms. Boorstein states above, sometimes accepting and receiving an experience is not always pleasant. I ran into a situation like that during our journey when I experienced an asthma/allergy flare up one night that was probably the most significant I have had in over a year. One that almost landed me in an emergency room that night. The fact that it was happening so far from home and at such a late hour had the potential to throw me into a tailspin and exacerbate the situation. But I was mindful. I accepted what was happening to me and made changes to accommodate the circumstances. Being mindful enabled me to think clearly enough to make decisions about how to manage the breathing issues without panicking. Yes, between that night and half of the next day, the event did have an impact on what I could and could not do, but I accepted it and moved on. The end result was that not only was I able to finish our journey, but I enjoyed it as well.

I think that mindfulness is essential for not only ourselves, but for our relationships as well. During our time away, it started to become more apparent to me how often I am distracted from being in the moment with my boyfriend when we are home. Sometimes this is unavoidable. A friend calls asking for help or the dog is not feeling well and needs a closer eye. Life gets busy, but it is important that when we are engaged in something together whether it be a conversation or a project, that I am present with him in that moment. I have to be because I will never get that exact moment back. That is not to say that there is not a place for those mindfulness thieves such as television, Facebook, and my Droid phone, but each activity deserves its own mindfulness and a limited amount of it at that. My boyfriend, family, friends, and dog are all much too important to not have me fully present in the moment with them rather than being distracted by all of our modern technology.

When we learn to be more mindful, the moments in our lives become richer. Our relationships take on a different perspective. Whether you call it being mindful, present, or aware, acknowledging our experiences in the present moment essentially helps guide us towards the path of living our lives to the absolute fullest. And well, you can’t really go wrong with that now can you?

Photo: Courtesy of Chuck Myers

I am a planner. I have been my whole life and to be honest, sometimes I border on the mildly obsessive side when it come to planning things. There are huge advantages to knowing what you are going to do and when you are going to do it, or so I have always thought. For me, being a planner has meant having control and therefore avoiding all the potential disasters that can occur. Take a trip or vacation for example. Make your reservations, get your route all mapped out, figure out what events are going to be included in your trip. Nothing can go wrong then. Yeah, right. Reservations get lost. Road construction delays your driving trip by hours. And horrors of all horrors, it rains the whole time you are on your well planned trip!

Now, my partner in life, love, and adventure (AKA boyfriend Chuck) is the antithesis of a planner. For years, I have wanted to be able to relax and not have to plan every single second of every single day and over the past two years or so, I have become more laid back. When we started dating though, I thought for sure his fly by the seat of his pants approach to many things would cause quite a stir in our relationship because of the fact that I just didn’t feel comfortable going through life like that on a regular basis. See, oftentimes he can plan for really important events such as say, Christmas or my birthday, but otherwise, not so much. He approaches it more like the fact that tomorrow is not here yet so most planning does not have to be done far in advance. For example, we had a large Fourth of July cookout this month. I started making lists and organizing about two months beforehand. Extreme? Maybe. If it was up to just him, planning would have begun the day (or maybe a few days) before. And you know what? The cookout probably would have been just as successful either way. However for me, it alleviated a lot of the stress and anxiety to start planning far in advance.

However since we are both in this relationship for the long haul, compromise has to be made. He has worked on doing some planning ahead when the situation warrants it, compared to his pre-Christine days; which of course I think is never a bad thing! In return, I have been trying hard as hell to be more spontaneous. Not an easy feat, I must say! It has been quite a learning process and one that I think is helping me to grow as a person.

I realized how far I have come along in regards to this issue recently when we were planning a three day weekend to the beach in Maine. It did require a bit of forethought as we have a dog that we need to find a sitter for while we are away. So we picked out a weekend according to Chuck’s work schedule and the dog sitter’s schedule. We decided we were going to Old Orchard Beach in Maine. We talked about a few ideas of what each of us would like to do while we were there, but that was really only because we were so excited to go. And…that was all the planning that was done.

I suggested making a hotel reservation since it was the middle of the summer in a beach town and on a weekend to boot. Ohhh no. Chuck said he always just drives up there and finds a place to stay. I thought he’d been smoking some crack earlier that day.

“You can’t do that!” I told him.

 “What if we don’t find a vacancy?”

Off to Maine we went with no reservations and no day by day itinerary set. We would just go and do what the mood struck us to do. I have to say, it was one of the most relaxing and enjoyable weekends I have ever had. Shocking for me considering the complete lack of planning that went into it; according to my standards anyways. Not only did we find a vacancy on our second attempt after driving into town but we found a quaint and picturesque inn, called The Gull Inn, located right on the beach at a somewhat decent rate. We went on the beach when we wanted. We ate as early or as late as we wanted. I found myself not really caring what time it was. I realized by the end of our journey that despite not scheduling a single thing, we still got to do what each of us wanted to do which was basically be on the beach, take photographs, read, play arcade games, eat, shop, and go to an amusement park.

Because we did not plan our weekend and did some exploring, we also got to experience things that we didn’t anticipate. Besides finding our great little inn, we went to a larger amusement park on the trip home. We found a wonderful discount bookstore in town. I, Ms. “It Takes Me Two Straight Weeks Every Seven Years to Find a New Bathing Suit”, found a wonderfully flattering bathing suit at a store. I wasn’t even PLANNING on looking for a suit that weekend.

There were also other things that I did not anticipate discovering while we were flying by the seat of our pants that weekend. Such as, I don’t have to try and be in control of the universe, or even myself, twenty-four hours a day. Moments are best experienced when you are fully in those moments and not thinking beyond them. I discovered that even if we had difficulty finding a place to stay, I have enough faith in Chuck and in the two of us as a couple to know that we will be alright no matter where we end up, whether it be on a trip to the beach or in the journey that we call our life together.

The kicker of the weekend came when we were driving back from Maine and decided to stop at that amusement park, Canobie Lake Park, in New Hampshire. I had not been to an amusement park in at least twelve or thirteen years. I was excited and couldn’t wait to experience everything. We parked our car and got in line to buy tickets. We handed the tickets to the person working at the front gate and as we walked through through the turn sty, I picked up one of their free park maps to figure out what was there and where we wanted to go since it was my first time. Then a lightning bolt thought struck me. Looking at the map would take away from the adventure and surprise of it all. Within literally ten seconds of picking up the map, I had thrown it into a trash can, almost like it was on fire. I am not sure who was more shocked, Chuck or me. And then with a smile on my face, we took off walking aimlessly through the park, never knowing what adventure was going to be around the next corner.

Photos Courtesy of Chuck Myers

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.

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.