Category Archives: A Message from Me

Genuine Act of Humanity

            Panhandling is now allowed on the streets of Portland, Maine. The City Council recently voted to not enforce a person’s right to panhandle due to tough economic times. As a native of this area, I was somewhat surprised it was allowed to continue. My experience was based on a previous time when I lived in El Paso, Texas back in the early 1990’s. It was customary to see a person on every street corner. After awhile, the shock wears off, and you aren’t sure what to think of a person’s situation. In reality, does it even matter? We all are sometimes guilty of sizing up a situation and making assumptions. One thing is certain. Regardless of their situation, they are people. They are someone’s son, someone’s brother or daughter, or someone’s father.

            Each time I drive in town, I witness what occurs at these street corners. I have seen the “changing of the guard” at least three times at these busy intersections. They all have their cardboard signs and I wondered who might be organizing these folks. Perhaps they were organizing themselves. Once I had a five dollar bill, ready to hand out to a person standing in the frigid weather, however with traffic being backed up and in the midst of a green light procession, disappointed, I drove past the person. I have never felt guilty passing by with no donation, as sometimes I had nothing myself. However lately, I have noticed that many of them appear to be homeless or people living with an illness, or just loners, and maybe unemployed. Who would choose a life which is so difficult a journey? After all, I think we need to take care of some members in our society, whether it is the homeless, the mentally ill, the disabled or the elderly. It is our moral obligation. It all begins within our own communities. I am conservative in my beliefs but that does not mean I would overlook social responsibility when it comes to caring for these groups. Sometimes, even though a person appears to be able bodied, doesn’t mean they aren’t struggling with serious health concerns.

            I witnessed a genuine act of humanity and brotherhood which really touched my soul the other day. I was downtown Portland, at the intersection of St. John Street and Congress. I was driving to the hospital when I noticed two men there on the median strip, one with his back to me. The other had a worn face and appeared to be a young man, but not a man who has led an easy life. It was very cold outside. It appeared it was a “changing of the guard” taking place, but some words were exchanged, and I saw the man whose back was to me, reach into his pocket and pull out some dollar bills. He handed them to the man whose face I could see. There was gratification on the man’s face, not a great deal of expression, but gratification. They both held their cardboard signs and I never saw the face of the man who handed over the dollar bills. Then a hug was exchanged and a handshake then the man who received the dollars bills picked up his backpack and left.

Reprint permission with author’s permission @ fiddlinsuz@roadrunner.com

Happy New Year

        Our Christmas letter was once a tradition. Each year we would reach out to our many friends and family across the miles. We think of each of you all year long. Reflecting on this past year, I believe 24/7 news is something that none of us need. We cannot change the events which unfold in front of our eyes every minute throughout the day. It is nice to know all that is happening around the globe however that is not nearly as important as what happens within our own communities. Helping those in our communities is much more meaningful that trying to help from afar.     
        Within our own family, jobs have been lost & surgery and hardship prevails. Parents are older and struggle to maintain a home. Kids leave home and some move far away. Sometimes parents move far away also. Our family is luckier than most as we all live within close proximity. It is important to take care of your family first before you can extend yourself to others. Acceptance is something that does not always come easy. Disappointment sometimes weighs heavily upon us. Sometimes those we love can only give little of themselves and we must learn to accept that. Sometimes it is not about us at all, but about paying attention to the people who surround us.  
        Within our own community it would be simple to fill this page with sadness because for many it was a tough year.  As a community, it is our duty to look out for each other and lend an ear, or check in on members of our communities. Be kind. Some of the elderly may not even know people within the community. It must be a little scary to be isolated. The disabled encounter some of the same issues. A young person with a disability or mobility issues are often isolated from their peers. Try including some of them in your plans and events for the New Year. I can assure you, you will not be bored with their company. There are many ways to keep connected…. Email, snail mail, Face book, or a phone call. That is the best gift anyhow, to give of oneself. Remember the story of the Little Drummer Boy? 
         A gesture of kindness may mean something to someone who has had a tough day. When you are having a tough day, reach out to others, because by doing so, you may be helping the next person in some way as well as looking beyond your own problems. We all go through life and find we are so busy, that we seldom take the time to make time for someone else. Let’s try to change that. Thank you to all of you for being part of our lives.
 

 

Reprint permission with author’s permission @ fiddlinsuz@roadrunner.com

Caring for our Family and Community

        Today, the sky is gray with anticipation of snow. The days have passed this year with no concern if any of us are here to enjoy it. We are bombarded with news 24/7, unsolicited phone calls, emails, news headlines, which in reality, are an assault on our day to day lives. How can we take care of ourselves when we are suffocated with political agenda and news in our own neighborhoods when tragedy unfolds? 
         Thinking back to 1863, the diary written by my great grandmother, at the age of 21, tells of 30 people that year in her little town of Westbrook, Maine who died. Some who died were old and a few were children, and one by suicide. How did she take care of herself?  She relied on family and stayed connected to people. Are things different today?
         Is there disconnect? Are we so preoccupied with our busy lives not to check in and see how the people we care about are doing? I am at a place in my life where I need to step back from the 24/7 news. In my own little community, there have been countless suicides, all young people. I think perhaps drugs have been a common denominator, and maybe disconnect with people. Many are born with brain conditions not caused by anything.The troubles may not surface until later in life, similar to a brain injury. Blame is not productive because it only lays groundwork for guilt. It is a toxic cycle. Sometimes, doing nothing for someone in trouble is the worst choice. It is difficult to stand by and watch someone you love self destruct before your eyes. Maybe we don’t know what to do or how we can help. We have two choices. Do nothing or react. Reach out to others because we sometimes do not have the expertise to help those we love without professional outside support. Those who can do this are not giving up on a loved one, but fortunate if their loved one can benefit from getting the help they need. Others are not as lucky as they are left to struggle with the suicide of their child. 
        As parents, we would move mountains for our kids, and also for our adult children if they were unable to care for themselves. That is what we do. In the end, we really have no control, so we might as well let that go. We can choose to learn to be reflective listeners, which means, NO advice, NO agenda. The brain is beautiful, complex, misunderstood, and many live in our communities with mental illness. Many are functioning and many are not doing so well. The willingness to listen to a friend, without casting judgment, without fear when you may not understand their crisis speaks volumes. There is a time to step back and take care of what happens within your own four walls. This month is significant because of Veteran’s Day and Thanksgiving. A little kindness, maybe a visit  or a note, a phone call, or just reaching out when others need it, is the human interaction people will always need. People have not changed. The way we choose to interact with others, choosing kindness, is what matters.

Reprint permission with author’s permission @ fiddlinsuz@roadrunner.com

Occupy Google

 

Today, the day of big Internet Blackout, and you guessed it, I am using the internet. I turned on my computer and saw Google’s homepage, a big blacked out space with only the lower portion of the “g” exposed. Also I tend to think this is the big experiment because Google had underneath the big blacked out area, highlighted, “Tell Congress: Please don’t censor the web!” This is a fantastic marketing ploy! Thinking of the far reaching capabilities of the search engines, I imagine all the Googlers at Google’s home office key wording “Google” in the search bar, just to see how many Google hits were received on 1/18/2012.
What exactly is to be learned today? I suppose they will find out which of “We the People” are the defiant ones. I believe our Government has always been afraid of “We the People” and I believe they are afraid of how quickly we can organize and that is a threat to them. Of course they would like to censor the internet! Regardless of how you perceive yourself politically, we are all the same, the Commoners.
This morning it was mentioned to me by a family member that when you have all the money, you have all the power. Well, that is the American way. Seems to me there is a lot of class warfare going on between those who do not have against those who do have. Well think about this. Why do you play the lottery? Perhaps you dream of being one who has something instead of living pay day to pay day. Yes, when you have money, you can buy anything you want. Big Deal!  To get mad at this concept is to squash you very own dreams of someday not having to worry about every nickel and dime you make and spend. Class warfare is lame. It is the abuse of power that bothers me. The abuse of power should concern all of us. Google wants control and power over the internet and to own all of our data. We are wise to you, the Almighty Google. Google..Google..Google

 

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Social Media Application

        The internet is the fastest moving train since the Industrial Revolution changed the world forever. Ten years ago, before I had my own computer, not unusual at that time, that I found a use for email {before this I did not understand the concept} Only a few possessed personal computers, which evolved into laptops which is now outdated since the smart phone is now in the hands of everyone you meet on the street. Recently, while visiting my mother, she asked if I wanted to use her laptop to check my Face Book. I replied “No thanks. I have been checking it on my smart phone during the day as I receive updates.”  We are all connected to the big cloud in the sky, owned by Google. Well, let me just suggest that this is my PO (Personal Opinion) The day I sent my first email ten years ago,  it was extremely beneficial. I figured out a way to use it as an application. My son was in an extreme medical situation and rather than phone all the relatives, I wrote one email and sent to everyone on my mother’s address list. I felt a huge weight lifted from my shoulders as I found a way to apply it. 
         Today, I have found many ways Face Book has been beneficial to network, to share knowledge, to share photos and stories and information. It is a way to keep close to friends who live afar. It has been a way for me to offer emotional support to friends who need that and it has been my answer in the middle of the night when I worried I may need to go to hospital but instead was given useful information by others who had a shared knowledge. It has been a way to share the craft fairs where I would be working. The possibilities are limitless. Mark Zuckerberg, founder of FB, has learned more from users than he could have possibly imagined. We have made him a multi-millionaire because we found many applications without limits. 
         They say folks who have blogs are actually writing less, because they share so much through social media, and write shorter pieces, not necessarily on their blogs. Unfortunately, I have found no useful applications for Twitter or Linked In. I am unsure they would be beneficial to me, however, I once thought the same way about email and Face Book.  At the risk of sounding like an old lady, some may have felt the same way about using a telephone back at the turn of the century. Perhaps they felt the same about using an automobile. I suppose the affordability of these luxuries was half of the excitement of purchasing these gadgets.
         Tonight, I was excited to think I learned how to add widgets to my blog and for the first time in four years, I added a new feature. On each story, it is now possible to click on SHARE and a group of social media sites pops up onto the screen. This allows the reader to share the link with any of those sites. Yes, this old dog is still trying to learn a few tricks.

Reprint permission with author’s permission @ fiddlinsuz@roadrunner.com

Bittersweet, it’s ok

It has been a couple of months since I posted but really I have not been idle. In fact, I don’t know too many moms and dads who have much idle time. My husband and I went away together… alone. I am not sure if this would be considered a phenomenon of parents who are caregivers to their disabled chilren or disabled young adults like one of our sons, however, it was not easy to just leave. Although, I perfectly trust my other capable adult son to care for his older brother, I still had a sense of urgency to get things in order, in the event something should happen to us. I prepared extensive medical notes with my son’s meds and medical history, physician contacts and vital information. This will be something attached to his wheelchair. Also in this time frame before we left, I facilitated a new pulmonologist for my son. It was not easy because I wanted to present myself as intelligent and articulate and educated in what my son needs to be healthy. I wanted this doctor because he follows a different protocol than the other doctors in the practice and he has educated himself in the care of patients with Duchenne Muscular Dystrophy. He sees another young man I know with MD. Up until recently, I have experienced that many of the doctors disregard the knowledge that parents possess, possibly because they may not have the experience, and perhaps they do not have the time to do the research. I mean no disrespect to doctors at all. In fact, recently I told the new pulmonary doctor that I know many women across the country whom have emailed a certain specialist from the ER rooms where their children lie, usually critical, and this specialist will email the families back almost immediately with instructions for the local doctors. I know this because I am in touch with many families around the world via Facebook, whose sons share the same illness that my son has. The expertise and knowledge shared between parents is extremely valuable. There is no need to keep reinventing the wheel and to expect doctors to know everything. I did quite a bit of homework for our first appt. with this new doctor. I read a book and highlighted information on a packet of papers, in order to be proactive in our son’s care. I told the doctor that I wanted to know that when an emergency  arises with my son, that I do not have to spend valuable time arguing with them regarding his care. We want a solid team of professionals who will listen to us and most importantly will listen to our other son, in case my husband and I are absent and our affected son may not be able to speak for himself. My son agreed to fill out a medical Power of Attorney . I also filled out medical directives for myself. This week, we will also be receiving some new equipment, two ventilators, one for day and one for night. We will all be trained on it. My son has mixed feelings about needing more equipment, and I suppose that is valid. I recall when he received his first wheelchair, then the hospital bed, then a hoyer lift, then a cough assist machine, then a bipap, and now new vents. It may be bittersweet, but everything will be ok once we all get used to the new hardware.

Reprint permission with author’s permission @ fiddlinsuz@roadrunner.com

MEMORIAL DAY 2011

 

 Thinking back through the years, I recall living at Walter Reed Army Medical Center in 1991 for two months.  We had flown there from Bad Kissingen , Germany. I was there because we were trying to find out what was wrong with our four year old son. Our lives were forever changed, however we have come a long way since then. In later years, I recall how our media vilified Walter Reed after veterans started coming home and we did not have enough facilities to care for them. I thought that the medical staff at Walter Reed Army Medical Center was excellent. At the time we were there, we were not at war and there was not a lot of strain on US military medical resources. It happened during every war…. not enough supplies… not enough life boats… not enough of anything and certainly not enough medical care to treat those coming home. Imagine what it was like during WW2 when those lucky enough to come home, thousands upon thousands needing care when they reached our shores again? Imagine those same young men who joined the military to fight a war on two fronts, the European Theatre and the Pacific Theatre ? Many joined because they were hungry and so were their families. They were children of the Great Depression and they never turned back once they left. I have read diaries of Westbrook soldiers who went to Okinawa and know of several Westbrook families who sustained great loss, one family had six sons who served during WW2. Another family had four sons, and two died in Europe. One ordinary man flew 33 missions and came back to work at SD Warren. They just did what was expected of them and they returned men. So when we get upset because our soldiers do not have the best of everything, remember the soldiers before them, in every war. The ultimate sacrifice was paid by many a young man and woman. I know a woman who was a nurse in Vietnam and was part of a surgical team on the aircraft as they brought home young men from Vietnam, and she saw many who did not make the flight. She flew back and forth picking up the wounded and caring for them.  This woman served a very long time and lost 2 husbands who were both pilots. Imagine such a loss… and I will always remember what my friend Phil, who passed away a year ago, once told me. He was a veteran of WW2 and his diary told of his worry and uncertainty of his journey across the Pacific, not knowing his destiny would be Okinawa. He was a born historian and not surprisingly his father also kept a journal of his experiences during WW1 in France. Phil told me that there could not be an Independence Day without a Memorial Day. We cannot celebrate our freedom without the day of rememberance.

Reprint permission with author’s permission @ fiddlinsuz@roadrunner.com

Convenience or Inconvenience

        Today, thinking of both definitions of convenience and inconvenience, I paused to really think what each meant to me. Sometimes they can both be viewed to be a bad thing. Convenience took us away from the hum drum of everyday toil raising our own crops to the modern day grocery store where after 50 years or so, people have no idea how to grow their own food and be self sufficient. Convenience brought us the remote control so now we must no longer get off the couch to turn off the television. Convenience took us away from the dinner table with conversation amongst family to fast food on the way home so we can spend more time with our family. Convenience has made us overweight and unprepared. Our love affair with gadgets from cell phones to Ipods, to computers all with Wifi and 24/7 access to global events is more than we need. This leads me to my next thought about who controls the flow of information? 
         I would have said a few years ago that governments control the flow of information however today I think it is Google who is now in charge. I believe Google is fighting for control of what information we will receive and they are fighting for that title globally. Their name is on my Verizon Droidx phone. In order to make comments on my Youtube account now, I must link to Google and use a password. My thoughts are that Google will be in control of the distribution of information and will share our information with anyone of their choice. Of course these ate my own beliefs.
         Lastly, the word inconvenience is one I have been pondering for the past couple of days. Is a new baby, or a pet an inconvenience, an interruption to our old lives? Taking care of an elderly parent, could possibly be regarded as an inconvenience. Perhaps one day, we will take a moment to pause and think, perhaps these inconveniences or interruptions are somehow meant to humble us for a bit. Caregiving is about putting someone’s needs before your own sometimes, however still trying to take care of yourself in the meantime. I was going to be in a road race this past weekend and was not sure I would make it because my young adult son was sick. Rather than get myself all stressed about it, I focused on what he needed. We got him well enough to take to my parents for a few hours so I could participate in the race. Afterwards, I drove immediately back there and avoided all the free food and accolades. These are the type of concessions we must sometimes make. I have no complaints as I just try to make the most of all we have. It all depends on how we perceive things whether or not something is viewed as an inconvenience or not. Our attitudes have a lot to do with how we view it. 
        Some may think it is an inconvenience to care for an adult son who is completely dependent on me for his daily activities, such as getting dressed, toileting, feeding, grooming. However, I am devoted to care for him because that is my duty and a big part of who I have become. Divine Intervention?  I think that Divine Intervention has occurred quite often in my life. It has saved me from being killed in accidents, avoiding accidents, given me closure when my feelings of a relative at death’s door called me one last time, just in time to say goodbye. These things have happened often. Lastly, I used to feel we were victims of this illness my son has, however now I feel that it was no mistake that life hands us these challenges. I am grateful for both of my sons and they are whom they were meant to be ,even if it may not conveniently fit the norm. For this, I am grateful.

Reprint permission with author’s permission @ fiddlinsuz@roadrunner.com

Christmas 2010

 

                    Christmas then, Christmas now. From our earliest memories of Christmases past spent with siblings, to where we are all today, Christmas is surely to bring with it the many emotions that are within all of us. “He knows when you’ve been bad or good, so be good for goodness sakes!” [1934, Haven Gillespie, J. Fred Coots], must be in the back of everyone’s mind because kindness & patience are in the air at Christmastime.
                     My earliest memory was playing in my room alongside of my brother as we had awoken to find big stuffed stockings on our beds. It seemed we played for hours. I recall my brother had a tin y metal carrier truck with tiny metal cars that fit onto it. Even then, I do not remember what I had except maybe one of those little vinyl purses with a clear front, printed back and a mirror and comb under a snapped opening. I can still smell that new fresh vinyl smell of Christmas morning. Some of my earliest memories were coming down the stairs and seeing sleds for us, which were standing up against the wall, unwrapped… and another year, seeing 3 rocking chairs with our names hand-lettered onto the backs. Our littlest sister didn’t have a rocking chair because that was probably the year she was born just before Christmas in November. How Santa knew all our names and how to spell them was amazing to me. One year we listened to the radio with updates of Santa flying over Maine. We were all sitting around the table with our father. He then told us to look out the window because there was a bright red light in the sky. It was Rudolph’s nose!! Actually, only later did I find out it was the light on one of those radio towers. Then there was the year we got up very early, all four of us. It was about 430AM when the phone rang. It our cousin across the street who told me to get ourselves back to bed because our parents had just gone to bed. I told my siblings that all we had to do was close the shades so our cousin couldn’t see us. The memories are still there 45 years later. I had a wonderful childhood, full of warm memories with my siblings and the life our parents gave to us. Those memories form our Christmas from year to year as we keep adding new memories and traditions.
                     Over the years we have all had losses, and we must carry forward to make the best of what we have. When we lost grandparents, two cousins, and other people who were important to us, finding meaning during the Christmas season sometimes was not easy. Over the years, I have tried to stay in touch with many parents who have kids with Muscular Dystrophy. We can help each other with our knowledge and be supportive and will do whatever we can to help each other. Some have lost their sons and we must keep them close to our hearts. They have a lot to share with the rest of us. Today the community is closer and quicker to get responses because of social network sites like Face book. I was recently looking for information on how to reach a famed muscular dystrophy doctor in New Jersey. Within 5 minutes I had his contact info, including email addresses as parents from all over the world responded to my request. I see this as a valuable tool to give the best care to our children and our adult children. My need to be a part of this social network site is more important than my need to opt out of it, as I did previously. If adding pictures which show why we need a new piece of equipment for a wheelchair helps others in their quest to also get equipment aiding in their child’s independence, then the site is extremely worthwhile. Lastly, parents who have lost their children also need to be able to share their information with the rest of us. It is a win- win situation, but sometimes also bittersweet. Thank goodness for my DMD family. You are always there for me. The social network sites generally bring about a kind of support for each other because we are generally interested in how others are doing.
                     Each Christmas, I think of those who are no longer here and I know in my heart, they would want us to find love and peace each holiday season. They are never forgotten because they have been a large part of our lives and our Christmases past. There are always others we need to focus on throughout the year who may need us, whether it is a neighbor, someone in a nursing home, a parent, a friend, or a Christmas Family for whom the office may be purchasing presents. Christmas is a wonderful time to remind us to think of others throughout the year because we need to think beyond ourselves and our own problems. With this written, I must agree that there really is a Santa Claus. May God bless you all in the New Year. We are all thankful you are part of our lives.
 

Reprint permission with author’s permission @ fiddlinsuz@roadrunner.com

The Death of In Your Facebook

                    Well last night after checking my status on Facebook, I was mortified what I had found. I had previously posted an article which I thought was interesting and somewhat political. It was a story about the think tank Maine Heritage Policy Center. The Center said that Maine was the state with the highest amount of people on welfare, one in three being dependent. My comment was ‘Good article’. One of my friends is very liberal and has quite a following of progressive thinkers who read her blog. Between my relatives who are conservative and her postings, I felt hurt by what I saw posted. By no means do I think I am thin skinned, but I have many people with whom I discuss ideas and in no way have I ever felt I was absolutely right all the time. Also in no way have I ever resorted to name calling. We are supposed to be respectful of others and try to listen to their ideas as well. There was a great deal of attacking going on in the post, so I decided with much regret to post one last comment.
                     “It is with much regret that I am deactivating my Facebook Account. I have enjoyed it as a tool to keep in touch with family across the globe, and friends, some who grew up in Redbank and others who are DMD moms. It was a great way to share. In the meantime, this will free up my time to pursue other things like my blog http://blog.likes2write.com and to reach me by email fiddlinsuz@roadrunner.com .  I also have to work on my ornaments for the upcoming fairs. I love you all and I will miss our daily contact.”
                     So today, Sept 11, 2010 is a day with great importance to the world, especially the American people who felt the pain of that day upon our own soil. Today is my first day without Facebook and I miss it already. However my life will go on, like it did before Facebook. I am hoping the year will be filled with more tolerance between family and friends.
 

 

Reprint permission with author’s permission @ fiddlinsuz@roadrunner.com