Long Absence

It has been a very long time since I posted anything here. My reasoning was that we had some family concerns. I lost my youngest son to suicide just 3 years ago and I miss him every day. I was also unable to write for several years leading up to his death because not only did I work full time out of the home, but I am caregiver to an adult son with Muscular dystrophy. , as well as tried to help make sure my other son was doing ok. You can find out more by checking the recent film Brothers by my son Michael Norton and filmmaker Reginald Groff which has a Facebook Account (Brothers Documentary) The trailer for the film can be viewed on the Facebook page and we are still raising money and entering film festivals. It has been a very long road for our family. The journey of grief is never ending , like our journey in life. I believe my mission will be to speak more and raise awareness about those with brain disorders as well as those with physical disabilities. Thank you for following my blog and I apologize for taking so long to write again.


We all have them. Sometimes it doesn’t even mean the outcome will be better. I would tradeoff work, to be home taking care of what is most important to me. At work, though I am compensated well, I gain absolutely no satisfaction. In fact, I don’t feel it matters if I am there or not. That is a sad way to spend 37.5 hours a week at the place where I make a decent living wage. My tradeoff is money over my own choices. I have done this for 18 years now. Coincidently, I am also a full time caregiver. This job is demanding but more meaningful in all aspects. There has been a tradeoff there as well. This son would like to live on his own, however I don’t have the money to pay for 24/7 care, though I do have an amazing friend who has done this for her son. She works full time and her tradeoff is that she has the freedom in her own life which does not involve care giving, but all of her income pays for his independence. This is such an amazing gift and she is a strong person. Care giving has taken a huge toll on me, and being sleep deprived is the worst effect of those many years of care giving as it has affected my cognitive abilities and affected me physically as well. It has affected my work and my creative endeavors. For instance, this is the first blog I have posted in a year.  That is the tradeoff. I find it unusual that I have never seen a sleep study done to the effects of sleep deprivation from many years of care giving. I have read many sleep study reports. My son is active with an interesting life, gets out as often as he can to always be around others. His options are limited. We would all do anything for our kids, that they prosper in all ways, financially, physically, emotionally and socially, and not in any particular order. I think family has been the most important aspect of living at home, as visitors come often to see all of us. Some of my family has been so supportive as well. I am fortunate to have a wonderful family. As a woman, also a mom, I have learned about so many things like acceptance and forgiveness and gratitude. Most of all, I am humbled by the people I have met in life as everyone brings something to the table through their own experiences, My own experiences are worth sharing to help others. We all have tradeoffs and we all have something to share. Maybe we need to revisit our tradeoffs and continually tailor them to find us the balance in life we all need.

Blending In

A human figure emerging from the darkness, I only witness because the light from my headlights caught the edge of his profile against the dark woods. He was carrying something and I thought it might be a sleeping bag. As quickly as he caught my eye, he disappeared in my rearview mirror against the blackness of the night. It all happened so fast, the thoughts in my head, of a man in the darkness, who probably slept outside in the most brutal winter I can recall. I thought about what I could do, without getting too close or invading the man’s privacy. I did not want to appear disrespectful in any way. Maybe he lived with some form of mental illness, perhaps schizophrenia or bipolar. I felt badly for his situation. I thought he is someone’s father perhaps, and a son, and maybe even a brother. No matter what people think, most likely his family has tried everything they can do to help him. If in fact , he lives with a serious illness of the mind, I can almost be certain that his family has tried everything they can to help him. It is a sad situation that our society has so many living on the fringe. It is also hard to see people endure these difficult circumstances.

He was in a business area of town on a wooded road lined with Walmart , Lowes Home Improvement , Texas Steakhouse, and so many other large franchises. He didn’t fit into the hustle and bustle of shoppers so he traveled at night, I assumed. After I left one of the stores, I glanced around for him, but he was gone into the night.

Then a few days later I saw him again, only in early morning hours within the same vicinity only closer to homes rather than businesses. The rush hour traffic just passed by this man on the edge of the road, colorless, all brown with his blankets and his clothes as I saw him turn around and stare momentarily. I noticed he blended in with the bare trees. It hit me with sadness that he blended in. I am glad I noticed him not once but twice, and I wish there was something I could do. He is someone’s son.

Thoughts on Being a Striker

It’s over, the Strike, since a few weeks now. So why am I so angry still? Four months is a long time to go without pay, no unemployment, no heating assistance in the coldest winter for years, and relying on the local food pantry to supplement our home. I would do it all over again, because we were being forced to accept less pay and slashed benefits, frozen pensions, and basically it came time to stand for something. I met some amazing people on the strike line. Strangers brought us food and coffee and pizza and KFC. The strangers were nice. They seemed to be sympathetic to our struggle with a company that referred to the former employees as “Resources”. The replacement workers were by far a better workforce in the company’s eyes. They were also compensated far more than we were. The company paid 60 million to not settle with the Strikers. The online public was very different. They were very cruel in their comments, and never hesitant to write that we should all lose our jobs. I would never respond to any comments online, because it was a waste of my energy, and I was running out of steam as a Striker. Though I needed to be at the line because those were the only people who truly understood what happened to us, and we struggled together but also had a lot of laughs together. In fact, I had people say to my face that we should all lose our jobs and be replaced with workers who wanted to work. This was what initially made me so very angry. I was very argumentative with people I thought would understand, but obviously they did not. This public face had contempt for the Strikers. We were a bunch of bad asses. I find it a sad state of affairs. I am still angry. When will I stop thinking of myself as a Striker? My anger is perhaps something I held onto in order to have some control over a lousy situation. Maybe referring to myself as a Striker, is somewhat nostalgic as well as negative. The company was constantly blaming the Strikers for any acts of vandalism and filmed us constantly. I was disobedient by snapping over 3000 pictures during that four months. I felt the need to document something which was bigger than our own struggle for good wages and good jobs in New England. I would do it again. I would walk the line with my coworkers. I never wore my pajamas all day in my entire life, but I must admit, I did that a few times near the end of the long four months. We were very cold walking the line the last couple months, but thankfully a  local labor council  supplied us with propane for our propane heaters, which was especially good when the sun went down. It has been a brutal winter. One coworker lost all her hair, and others were diagnosed with cancer, and of course, our health benefits were gone. My own family was affected by a wheelchair denial because we no longer had insurance. Compared to what my coworkers who had health issues faced, my issue was minimal. To be honest, I was glad to be home during that time, but I had no real routine. That was the risk involved, going on strike at midnight Oct 16th, . Nobody knew what was in store for any of us. We took a chance while our unions continued to keep us updated and fight for us to get back to work. Strangers and unions across the country continued to add money to a Solidarity Fund, to aid families in need who were maybe denied for heating assistance locally, and who struggled with mortgages etc. I met coworkers I had never met before. Our unions met with us and told us that we had our jobs back and the strike was over. On the morning of Feb 25th, we walked into work together, and we all felt the same, very uneasy. We walked to our desks, and you could hear a pin drop. Managers welcomed us back, and a sign with the words “Welcome Back” with a smiley face, appeared to be written in pencil, halfheartedly. I am not sure anyone felt welcomed. It was rather historic, as it was the longest strike of the year. We were very appreciative that we got our jobs back, but there were many changes. We knew they did not respect us and we knew they were not our friends. We are all different now because of the experience.

My anger is still there….and I hope it goes away soon because it makes working at this present job, very difficult. Some of my coworkers did not come back to work, and some left to take jobs elsewhere. I am different. I no longer enjoy going to work, but I will work very hard as I have always done. I have always been self directed, and creative, and a problem solver. The Strike knocked the wind out of my sails and I don’t know how to remove myself from these feelings. Each day it seems to get better, but my future as an employee at this company, may be short lived. I feel as though I have many things I want to pursue. Without a talented workforce, a company is merely a skeleton. One word:. Google. Now that is innovation and creativity

Letting Go of Fear, Worry & Anxiety

These Rob us of Living our Lives


I had an appointment the other night. When you are a caregiver, sometimes juggling schedules is done hour by hour. Having a family member in a wheelchair and another family member with other needs, I try to do what is best for them. This appointment was something I was committed to. Asking one family member if he might sit with the wheelchair bound family member for 2 ½ hours, would have made for a stress free evening. This would not be the case.

One wanted to visit a good friend who needed a good friend, while the wheelchair family member would be home alone, with access to the computer, so communication with me, was all set. Normally, I would be sick to my stomach about leaving the wheelchair person alone, however, tonight, I looked at it from another view. I decided to say it would be fine, because it allowed for the independence of both family members. That was very important, and I did not dwell on the “what if’s.” I felt truly free. The world did not end that night.

To Share or not to Share


            We have all had bad things happen to us, and sometimes we just do not know what to do with that information. I guess it depends partly whether you are an introvert or an extrovert. Some people can sit with information and come to some peace alone. Others need other people who will just listen and let the person talk. Maybe, some learn most by the reactions they get when they share. Perhaps, it is different if the news is about you or if it is about a family member. Either way, sometimes sharing information makes you vulnerable to unsolicited comments, or seemingly callous comments , and worse yet, to be disappointed because a friend you have know forever, just was not ready to bear the burden of your sharing. When husband and wife are in disagreement about how and what to share, it sure complicates a marriage. The bottom line is that love is at the core of all of this. Sometimes the people you thought might have been most supportive, just were not able to do it. That hurts sometimes, and sometimes causes anger and resentment. Looking back on the times I have shared, and there were many instances that I should not have shared, I have come to realize it is not about you. It is about the person who heard the information, and their comfort level with the information presented. It doesn’t mean they do not care about you, or that they do not love you. If you were shocked to hear the news you want to share, imagine how they felt when you shared? Sometimes, waiting may be a good idea, when you are ready to share, and keep the person’s best interests in mind, if it happens to be about a child’s illness or someone close to you. Also, it might be best not to be too specific about the name of a diagnosis, or the prognosis. People sometimes can pry for too much when we are vulnerable. I have seen people interviewed for television when they were clearly not ready emotionally, regarding an ill child. If I should be the recipient of your sharing, I promise I will try to be a good listener.


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



It occurs to me that the people who have the least to give, do so generously. I have seen this time and time again. Though I have no scientific data to back up my belief that those who have little are more charitable, I must examine this phenomenon.

            Does charity begin at home? In a sense it does, because if you cannot support your own family, you have no business handing out your dollars to others while your family goes without the necessities. It is an old saying and it is perhaps the best way to measure whether or not you are able to give to a charity financially. I have not always had money to do this, so over the years, I have donated goods I have made for auctions, and I have donated my time. I am a firm believer in looking outside your own problems and realizing that sometimes others need help too. What do I expect in return? I guess that would be my next topic.

            I have been involved with many organizations throughout the years, volunteering many hours and trying to make a difference somewhere. They were all organizations I believed in or I would not have spent my time. I was with the Boy Scouts for 6 years, volunteering my time with kids in our neighborhood. They were worth the time and it was well spent. I moved on as my kids grew, making room for others to be involved. I have been involved with non profits and spent more time than I maybe should have, however, it was what I needed to do at the time. I have been involved with other groups and if I felt my time was not making any difference, I left the group. After all, if you do not think you are making a difference, then move on to something else. Your time is valuable.  

            Whenever a tragedy hits close to home, people rally together and the money pours in faster than anyone could count. Is this because we feel like we HAVE to do something? Does it make us feel good to do something? Our communities are full of people in need, yet we never see them. They are there, just under the radar. Maybe we need to take notice of our neighbors, and really see them and listen to them.

            It seems that those who are in a higher class in society like movie stars, politicians, athletes, scholars, and CEO’s sometimes are far removed from those who are in the lowest class financially. I am beginning to think the common denominator may be that those who are most giving are closer financially to those who have less. Maybe charity brings out the humanity in all of us.

            The topic of charity arose when some of us on Face book sent packages and helped raise money for kids in another country who also are part of our Muscular Dystrophy “family” worldwide. They share many pictures and it is more like pen-pals in a sense. One can tell that they live in a poor country and the infrastructure is so that the electric grid only lasts 12 hours approximately. This allows one person we are friends with to access Face book and be connected to a family worldwide who is willing to reach out and help if possible. Mind you, this is no professional fundraising organization, but a person with a big heart trying to make a difference to the people he helps in his country. Maybe I am naïve, but I will always believe in the goodness of people. By the looks of the makeshift wheelchairs many of the boys have, and many are ill fitted to their bodies. Americans have motorized wheelchairs. I have not seen anything that extravagant in this country with the pictures that have been shared. I see young boys who do not have the same level of healthcare that we have, and with an electric grid only working 12 hours, they will never have the use of ventilation, or machinery such as cough assists which could save and prolong lives. Their wheelchairs lack headrests, even for boys who can no longer support their trunks and their necks. Most boys appear happy in the pictures, but their quality of life is very different. The gentleman who helps to run the clinic, with a physical therapist and have a place where boys can go during the day, is also one who has muscular dystrophy.  

            I guess I am glad I am not overly skeptical; because I would never open my heart and try to help anyone if that were the case. I have spent my own money to put together a package or two and may send another one. I mailed one package which cost 50 dollars, more than the contents were worth, but I do it because maybe I can make a little difference. I don’t expect any returns, any praise or tax deductions. But the world is changed one person at a time. Treat people the way you wish to be treated. One of the pictures shared, spoke volumes to me. It was a photo of a mother standing and she was holding her adult son on her back. He did not have a wheelchair, so she carried him everywhere. That photograph told the whole story. That photograph is the reason I have tried to help a little.

            So I guess I am just wondering what makes you reach out and give of yourself? I think those who are skeptical may be less willing to help someone. I don’t think most who are in need would ever ask for help. I think it is our moral obligation to do what we can if we see an opportunity. I believe they call it humanity.  

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

Living in the Moment


            Sleet tapping against the windows and covering the trees and snow, makes for a bad driving day. All week, I have been torn about maybe not being able to attend a funeral in another State, for a very good friend’s mother. I decided last night that I needed to be there. Left the house at 530 in the morning, driving in sleeting rain for ½ hour when I decided it was silly to try to drive 3 hours in this weather. So I headed back home. Accepting that it just was not meant to be today, though disappointing for me, allowed me to come home and be in the moment. I let my feelings of disappointment go away. It is not healthy for me to dwell on this all day, though my good thoughts are with the family.

            It does not come easy to stay in the moment. I have suffered through anxiety my whole life. A recent turn of family events forced me to learn to stay in the moment. I am finding that I feel much healthier because of it. Some examples have been to not allow negative thoughts into my head such as worry, panic, fear, and anxiety. I am not in control of what others may do, but I am trying to be in control over my response.

            I cannot think, well this happened before so it could happen again. On the other hand, it is much easier to think, well this happened before and it may NOT happen again.     One of the biggest changes has occurred because a good friend gave me an Al-anon book entitled Courage to Change. Now I wondered if it could really apply to me because seemingly it is material for families of alcoholics to help them cope. My friend realized I was going through some undesirable feelings on my part, such as anger because of something I could not control, and especially because I was helpless regarding a situation. I replaced the work Alcoholic with Illness and I found the book can really help all people.

            I have made some big changes because of it, and staying in the present or living in the moment has been the biggest change. I continue to try to improve in these areas. Here are a few instances of staying in the present. When someone has a conversation with me, I try to look right at them and be a good listener, not offering advice, but listening. If something happens unexpectedly, I try not to get all upset, but just absorb it and let it go. I try not to obsess about it. In the big scheme of things, it is probably small potatoes. I try not to think of negative thoughts and this includes scanning the news sometimes, because I avoid horrific headlines. I do not think we are wired to emotionally handle 24/7 news. Because we are people with feeling and we care, then these thoughts stay in our heads when we read about a dreadful event. Another change I have made is to slow down. I stay in the moment by slowing down. I am often times in a rush with all I do, that I miss what is actually going on around me. I took the time the other morning to walk around the lake and snap photos. I was pleased with my photos because I was not in a rush.

            I think we waste so much energy worrying about things that may not happen. If we worry, it gets in the way of the moment. It spoils the present. How many times have you done something, and some sort of stress, just ruined your moment, your plans? Slowing down is a good thing. My sons have taught me so much and living in the moment is something they taught me just by being who they were. I spent so much time worrying about one son’s future, that I feel I missed part of the here and now with him.

            When I worked for the school department, I remember being on the playground in the mornings before class. Some kids came to school already wearing their stress. I would go up to them and check in with them, and just listen to them. Sometimes it made a difference in how the rest of their day went. I try to be that person at my present job too. So many people have worries for which they are trying to cope. Sometimes all we can do for someone is listen and love. We can’t fix some things. That’s ok.

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

Speak Up & Don’t be Afraid

            Today, I was in the middle of a conversation with a friend and suddenly, I was struck with a thought. Would you ever stick your neck out for someone, even though it may be unpopular? Would you do it silently or would you not be afraid to speak your mind? Would you be willing to speak out even if you may be afraid of the consequences?

            The reason for the conversation was that she was telling me of a book she was reading about the Holocaust. I too have read countless stories of people and the atrocities that occurred during this time in history. It is sometimes more than I can bear . I cannot change history, but wish I could make some peace with some of the things in the past. I wish I could make sense of the headlines in the news today, but I cannot. We cannot change history and we cannot forget. What I can do is to always speak up for someone when I need to. I will not be afraid to speak out, ever. Sometimes we could be in danger for speaking out for what we believe. I think that is all we can do. What would you do? Can you share any times when you have spoken up for someone else, when you had nothing to gain from it, but it was the right thing to do?

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


Wishing for a cure? If you are like me, I wished many years for a cure for my son’s physical disability. I think I spent many years campaigning, and fundraising trying my best to do my part in finding a Cure. Our family watched as our son lost his ability to walk at age ten, and sixteen years later, he needs help with everything from bathing, dressing, feeding, and transporting. In fact, he is brilliant and operates an electric wheelchair with the use of one finger, and also is ventilator dependent. He can wiggle his toes, but can no longer lift his arms or feet, or even turn over in bed. So, please forgive me if my views have changed over the years. You may be surprised to hear what I have to say, because it is not negative.

            There are no words as magical as the word, hope, or the word, love. These words are tied to our emotions. If you witness an opposing view regarding Finding a Cure, you may take it very personal. I know this because I heard someone say, “Why do we need a cure?” when my son was very young. I was shocked he felt this way, but he was living with his disability for his whole life. I took it very personal, and I even became angry for a bit, though he was not directing it towards our family in any way. He was speaking from his own experiences. This is what we all do.

            It is my opinion, that there is a great deal of money to be made selling Hope. The fundraising is infinite. The head of the American Red Cross quit after 9/11 partly because money poured in from across the globe at such a rapid rate, that our country was not prepared for any disaster of that magnitude.

            My belief is that the Cure is very far from our reach. We are mortal.  We have to wonder at what expense will a Cure be found? Since my son was a little boy, the Cure was predicted to be a few years away. That was 22 years ago. Scientists are trying many avenues to find these cures. The quality of life has advanced several years, and that, I believe is most important. This is due to funding, research and development. Families are talking about a new revelation called Exon skipping. It has to do with genetic deletions and knowing your son’s exact deletion. I think it is amazing research but I have to wonder if this is just another way of selling Hope. Then again, scientists have created vaccines which stopped smallpox, tuberculosis, and polio. They couldn’t cure those who were already affected by those illnesses. Families discuss research trials, and many seem to have a sense of desperation with their newly diagnosed child. The clock is ticking. I understand, because I was there once. Reading as much as I could about the research, gave me lots of Hope. It gave me control over something for which I had no control. My thoughts are that Hope should be coming from within, not from outside. I am just posing a different viewpoint from someone whose son is much older. He is comfortable in his own skin, but it took many years.

            It also took me many years to accept all that came our way. We fought to get doctors to listen to us and continue to do so. However, it was not until the past few years, that I came to terms with my own feelings. I was in church one day, which was a rare occasion as I seldom attend church. I was in church because another son was a member, so I joined him. Forgiveness was the topic of the sermon. I was talking with a woman next to me who started to cry and said she needed to forgive the doctor for a bad surgical procedure which diminished the quality of her life. She was broken up, so I reached over to hold her hand. Little did I know, I would be overcome with such deep feelings. I confessed to her that I believed that my son was perfect, just the way he was supposed to be, wheelchair and all. I told her how I had forgiven him for his disability. I had no idea, I had been carrying this pain, and I hope my son was never burdened with my feelings. I would never mean to cause him pain in any way. I was ashamed I had felt this way because my son had done nothing wrong that I should feel this way, however those intense personal feelings were not evident until I was listening to the sermon. In the beginning, I feared terrible things happening to him, and it was revealed to me by a counselor that I saw our family as victims. That made sense to me, though I had not thought of that. So I found through the years that I have grown in ways to overcome all those feelings.

            The last year or so, my other son was diagnosed with mental illness. I also think he is perfect the way he is meant to be, but I am concerned he does not self destruct in front of me. I have checked on his medications, hoping he stays compliant, for his own safety and well being. I have never heard of an organization selling for a cure for Bi Polar  or Depression. I know there is an Alzheimer’s Organization, which raises money in the fight against Alzheimer’s. It is a fight, not a cure.

             Money is raised for cancer, breast cancer, and mostly physical conditions. Exactly what would a cure look like? How will we achieve these cures? With technology, we are able to watch the baby develop in the womb. We are coerced into having numerous tests, for what? My doctor wanted to administer a test on me when I was pregnant, to see how the baby’s brain was developing…for what? I refused this test but it did not stop them from pestering me. So if the brain wasn’t developing correctly, what then? It is a miracle to be born “perfect”, but who could ever predict a child’s future?  We have no guarantees. Life is now, so must live each day to our fullest. All the available testing could never predict what could be wrong with your child. When we use terms like “eliminate” to describe a disease… well what does that look like?  I have already heard of people not being covered by insurance if they are carriers of defective genes.  Who decides what perfection should look like; Insurance companies, the government, doctors?   Do we reject everything less than perfection?  It is subtle. On a trip to the grocery store, I notice that the tomatoes on a vine all appear exactly alike. I know these comparisons have nothing to do with one another, but we need to ask where we are going with all this eliminating illness and disease. Nobody wants to see anyone suffer, but are we so uncomfortable that we can’t bear to have differences within our society? At some point in our lives, we will all have great physical and mental/ cognitive challenges.

            Lastly, I ask you to think about mental illness for a few moments. Are we going to eliminate this as well? Disability, either physical, or cognitive, or mental, all impair a person’s life significantly. One boy was an athlete, very social, popular with many friends. There were severe changes out of character for him, which caused concern. His judgment was very bad at times, resulting in risky behavior. He was suspended in time, not concerned with goals. Motivation was lacking and the pursuit of passions came to a screeching halt. He hopped from job to job, some jobs lasting only a week. Each day he was going to do something different, changing his mind in a moment’s notice. Racing thoughts became the norm. Isolation became his way of life, even isolating himself from his family, with whom he lived. If you can imagine, the concern was great. Hospitalization and non adherence to medicine became the norm. The unpredictable was becoming predictable. So I ask you to consider, how can we find a cure for someone like this young man? We can make plans, but things change. Life is not perfect.

In life, we are always facing obstacles, either an accident, an illness, or onset of dementia. Cures can be sold to anyone willing to buy some Hope. Hope is the last thing we are willing to let go, because the will to survive is very strong. In the end, finding a cure is a matter of the heart. Some of us are happy with a better quality of life, so we won’t spend our lives wishing for the fairy tale of a Cure to land on our doorstep. In the end, I mean no disrespect to those working for a cure, because it is your turn to go to bat. Like those who did the same before you, it will mean a better quality of life for our families. Sometimes we lose our hope when our loved ones are ill. Our dreams are lost. But it is within ourselves that we find peace again. Emotions range from grief to anger, back and forth like a rollercoaster. In the meantime, acceptance did not come easy, but when it did, peace soon followed.

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

History, Advocacy, Inspiration & Stories of Long Ago