Many years ago I came across a book, When Bad Things Happen to Good People by Harold S. Kushner. In it was a prayer by contemporary theologian, Jack Riemer, Likrat Shabbat. The prayer was one of the most memorable I have ever read, and I made a copy of it and have carried it in my wallet ever since. I periodically pull it out and reread it every now and then when I forget its message.
We cannot merely pray to You, O God, to end war; For we know that you have made the world in a way That man must find his own path to peace Within himself and his neighbor. We cannot merely pray to You, O God, to end starvation; For You have already given us the resources With which to feed the entire world If we would only use them wisely. We cannot merely pray to You, O God, To root out prejudice, For You have already given us eyes With which to see the good in all men If we would only use them rightly. We cannot merely pray to You, O God, to end despair, For You have already given us the power To clear away slums and to give hope If we would only use our power justly. We cannot merely pray to You, O God, to end disease, For You have already given us great minds with which To search out cures and healing, If we would only use them constructively. For strength, determination, and willpower, To do instead of just to pray, To become instead of merely to wish.
Life seems ponderous at times, and definitely overwhelming with so many negative things happening in the world. But doing one little thing CAN help make a difference. Find one small thing you can do to change things for one person or for a few and do it. There is no lack of choices to help you find something that fits your skills, knowledge and abilities. Do it today.
When I saw the photo of this beautiful and diminutive lady in the newspaper, I was inspired to create her likeness in a quilt which is still not finished. There is something about finishing it that reminds me of her life, for her goal is unfinished, and her country of Myanmar is still unfinished in the sense of gaining freedom for her people, so in a way it seems appropriate to be unfinished. I will finish it I am certain, but I have to make some adjustments to it in the direction she is facing and the overall size, etc. of the quilt. Giving it texture will enhance the quilt greatly just as giving texture to life enhances it as well.
I love people who make a commitment in life that they will pursue despite whatever challenges or dangers they face in the process. Called “The Father of Democracy” by the people of the country, her father was assassinated when Aung San Suu Kyi was just two years old. Despite such heart-breaking challenges, she steadfastly stuck by her beliefs even though she was under house arrest for years and has faced unbelievable circumstances. Her husband and two sons had to move outside the country. When her husband was stricken with cancer, she was told that she could go to be with him in his time of need, but that if she did, she could never come back. What a heart-rending decision had to be made and what incredible sacrifices the whole family made.
Yes, she is one of my heroes. No matter how much I might believe in something, I am not sure I could ever have given so much to such an immense cause.
It is good to have heroes in this life as I have noted before. We all need to know that when we are called to do something difficult, there are others who have made a path for us to follow. Perhaps those in her country who are against her are just waiting out the time when she too will pass on. Although she won the Nobel prize during the time she lived under house arrest not much has changed in Myanmar to this day.
If the time comes that I have to stand up and fight for a cause in my lifetime that I too will have the courage to stay strong and be brave until my last moments on this earth. I long for the all of earth’s people to learn to work together for our mutual benefit, and to realize and respect that we are all sacred and here on this earth by some great design.
I have a number of heroes in this life, and I think heroes are good for all of us. We all need others who inspire us and give us something to keep us going when the going gets tough. One of Zig Ziglar’s quotes I always remember is “Get a checkup from the neck up and avoid stinkin’ thinkin’ and hardening of the attitudes.”
In these times, we all can benefit from our heroes. The daily news is often dismal, the sign of a dysfunctional society for sure. It is easy to get down when we read nothing but the worst of the worst in human behaviors throughout the world.
Zig Ziglar was not born a privileged man. His father died when he was young, and a younger sister died a couple of days later. His mother kept the family together, and he worked hard all his live after that, serving in the military and then working in sales. But he took what he had in life and made it work for him and his family, and he is today remembered as one of the greats in inspiration. His first book went through some 30 publishers who thought it was a waste, and then a publisher picked it up and it sold half a million copies right away.
No matter where we have come from or what we have been through, we CAN make our lives better. But it doesn’t happen if we sit there and wait for someone else to do it for us. And remember that no matter how difficult our lives may be or how challenged, there is always someone who would feel wealthy if they had what we do.
I have many heroes in all sizes, shapes and colors that I follow. I will ultimately reveal all of them over time, and some I have already mentioned. Who are your heroes in this life and why?
My heart work is with special needs children which I did for some 15+ years. Sometime in the early 70’s or late 60’s my younger brother and only sibling came home from Vietnam 100% disabled with a TBI, a spinal injury, and permanent PTSD. It gave me that heart to work not only with the children, but with people with all forms of challenges – physical, developmental, and emotional. I have done that for the rest of my life to this day.
I was a Regulatory Compliance Specialist at 64, working for a major pharmaceutical manufacturer of plasma derivative products. I had done quality assurance for some years in my own business. I was a certified quality manager/certified quality auditor, so I knew what to look for wherever I went and whatever type of business it was. This would be to my detriment when the company decided to to sell to a company in Spain to get out from under a FDA action against the company for fairly major quality issues. When the company in Spain decided to purchase the company I was working with, I got laid off along with 400 others.
At 64, on unemployment and with no prospects of a job because of that title, I founded a very tiny and penniless nonprofit to assist physically challenged fiber artists with getting exposure and sales for their work and to assist them with professional development. I did this successfully on the side, always as a volunteer with the other volunteers for some 10 years. Shortly after I founded the nonprofit, I remembered that I had a certificate that would allow me to work with special needs children. I became a substitute for two different school districts, and I absolutely loved all the work I did in school. Life was good in those times. I had just enough to live on very modestly; spirit does not need a lot of money.
These were truly some of the happiest days in my life. When I was not at work with the children, I was providing assistance for the physically challenged artists with two other people – my paraplegic best friend, Barbara Williamson, who lived in Paradise, CA, the secretary of the nonprofit, and her caregiver, Rob, the treasurer, whose job was easiest of all since we had no money in the treasury. I had figured out how we could do a lot with nothing and so we did that for more than 10 years until we both suffered worse physical and mental challenges that made it difficult to continue that work.
We did write a book on the subject to get good closure. Last November, Barb and her caregiver had to escape with their lives from the horrible fire in Paradise that destroyed their home, the entire town and all of her art. I will never regret any of that work because she now has skills and knowledge to help her rebuild her life from what she learned during those years.
Most of all for me, there were the children. Some of the children I worked with were not only developmentally challenged; they had such major challenges as MS and childhood arthritis. There is something so special and beautiful about these children. If I had been married then and had an adequate home and finances to do it, I would have adopted as many of them as I could. Raising special needs children is no easy task nor a romantic one. Not only do they provide challenges throughout the days and nights; most of the time they will be in the care of the parents one way or the other for the remainder of their lives.
Special needs children often require bathroom assistance into and through their teen and even adult lives, as well as things like “failure-to-thrive” children, who must be helped to eat enough to help keep them alive. This is not a psychological issue; it is one that they are born with. I have had children I had to give enriched milk or other liquids to through a tube in their stomachs, and others who had to have a bucket accompany them to their lunch so they could throw up in it after eating a little. And then there is the physically reactive child. Some of them are runners, and will run off the playground if they can (and not even because they are unhappy, etc. but just because it is part of their makeup, and they are not running to a specific place, but just needing to run). And there are those who can deliver a huge punch; I was punched in the face and had my glasses broken, was bitten, had my hair pulled, was kicked and painfully pinched and slapped, pretty much all without warning. Some of the children are very strong for their sizes. If a child’s routine is broken in any way, or the child is unable to express his/her needs, you can expect that the child will react, sometimes violently.
But we become good at dealing with these issues, and most of us who work with them can see the beauty of the children and the wonder of their lives through all of the challenges. Sometimes their own parents cannot cope with them, or the parents do things that are not beneficial for the child such as over/under or irregularly medicating them or putting them into group homes when they become overwhelmed. It is one of those great societal issues where it is difficult to place blame, for anyone who has to deal with these issues day AND night every single day of the week without a break is going to have a true challenge.
As caregivers for special needs children, we are all referred to as mandated reporters, and it is our duty and legal obligation to report any type of abuse of any child. I honestly can’t tell you how many of those reports I filled out over the years for things I personally witnessed. And I can’t tell you how many of them were “shelved.” The schools in California at least are financed by children being in school, not when they are out sick or parents refuse to bring them to a specific school because of the behaviors of teachers or aides or others. I am pretty certain that most people reading this will understand the implications of this policy.
There are a lot of really wonderful and dedicated teachers, aides and others who work with special needs children. But there are also a lot of horrible ones, and I am not certain that situation will ever change in reality. There IS training available for how to work with such children and young people, but not all of those who work with them get that training or learn from it if they do get it. Most of what we learn to deal with well is learned from real-time experience along the way, and if a person’s heart is not in it, it will at best be mediocre.
At home, as I noted, parents are often stressed to the breaking point and there is no one generally to spell them or for them to talk to regularly – even support groups are very far and few between. The first sad thing too is that some children are labeled special needs because perhaps they are slow to learn to read or write, etc. Once they get such labels, they will have them through their entire lives. For me, that ensures that even the children who might otherwise have done well will just give up and not try to much.
I have long since realized that children grow at different rates, just as some walk really early, learn to use the potty really early, etc., and some take a long time. It is just the nature of life in this world. My daughter was potty trained when she barely started to sit up, and that was her own doing. She would put her tiny hands together and clap any time she was successful in her efforts. She could read well and talk well at age two, and she could memorize her storybooks too. My two sons were very different from that – slow to learn to do everything and slow to read. It is normal for children to progress at different rates.
One of the things that happens from the stress and other issues parents face is that special needs children are more often abandoned, abused, and even murdered than regular children. They are also very highly bullied. The problem however, is that the tallies on these crimes are all thrown in together with those of children who are not special needs, so as a result, no one knows the true figures. But some people who have studied and worked with the children have long thought that the figures are higher and it makes total sense. And if a special needs child ends up being institutionalized because of abuse or abandonment, there is little chance that the child will ever do better in this life. And the people (if parents) who do these things to special needs children, at least in the past, often did not get severe jail sentences if any at all. There used to be a young man who likely had Asperger’s, a high functioning level of autism, who wrote posts regularly about these issues. These young people can be and often are highly intelligent, but are unable to deal with socializing and interacting with others.
Even the best of parents with special needs childrens do not know all they need to do about what happens when their children grow up. Not all parents with older special needs children know about estate planning for the children. There are three very specific and important reasons that this needs to be addressed.
First is the fact that these children will need special physical and mental/emotional services all their lives, even the most proficient of them. This will involve very careful financial planning to ensure that the parent can provide such services.
Secondly, a special estate plan is the only way to ensure that the child can be provided for without having them become ineligible for government and private benefit programs.
And finally, if the parent is no longer alive or available, without such planning, the child can end up in an institution, or worse, can become homeless and at the mercy of every transient out there. I have actually witnessed such cases, and I am pretty certain that no parent would wish this on any child of theirs.
The best way for parents to plan for a special needs child is to set up a Special Needs Trust. In this instance, the parents appoint Trustees to manage the Trust for the child’s benefit. This person needs to be trustworthy, and someone who is capable mentally and emotionally, as well as financially to direct and manage the child’s care through the remainder of his/her life.
I am retired from working with the special needs children now since I was diagnosed with severe PTSD from heavy-duty traumas followed by cancer (cancer-free following surgery in 2016), but I still tutor privately, often as a volunteer these days with special needs or ESL (not always Spanish either) children and adults. I completed a degree later in 2016 in Criminal Justice with a minor in law, but could not work as a mentor/advocate for juvenile delinquents because of my age and the PTSD. I always keep trying to do what I can and I have been happy for whatever I have been able to contribute to the lives of special needs children as well as others with special challenges. It is not going to change what they go through overall, but it does help them for a moment in time and I am not sure what more any of us can do.
This may end up being a series post because it involves the story of a life. It is my hope that this may serve to help anyone who is having difficulty coping with life. It is a true story. It is my story. And I am feel blessed to be able to share it.
I was inspired to write my story when I read a beautiful and touching post by a person whose blog I follow, http://www.3Bones.wordpress.com. Almost everyone in this life goes through some sort of tragedy or issues that can change a life forever. Challenges, no matter what the nature of them can be, are a blessing. The reason they are a blessing is that without them, we might never learn compassion for others, or how to help them when they need it most. We might never experience the beauty of life because life is full of valleys and mountains, sunshine and shadows and darkness. And we might never develop a sort of strength and true understanding of a journey. We might never develop faith in some form, from a belief in a God and a loyalty to that belief, or a sort of spirituality that we recognize in the things, people and places that surround us every day.
And lives – all lives – are sacred in this world. They are here by design – all of them. All forms, all shapes, all colors and names we have made to categorize each of them. They are needed to help the earth and the universe to survive. Even the smallest grain of sand is sacred. It has a special function though it may seem insignificant. Nothing is insignificant in this world.
I want to let you know that this story contains elements of life and death. It contains elements of goodness and love and kindness. And it also contains elements of evil and hatred and the horrible acts that human beings are capable of enacting upon selves and others. This is an opportunity for anyone reading it to perhaps change your thinking about human life on this plane.
The Tin Lady is not only an art doll that I created from found objects. If you look at her carefully, you will see that she is imperfect. Perhaps we can all be both imperfect and sacred a the same time. Most of my art falls into the Wabi Sabi category I have written about in the past; it is an appreciation of the imperfect, the impermanent, and the miracles that can be appreciated in the simplest of things. It serves to remind us that we are all here but a short time in the overall scheme of things, and that life is not a destination, but a journey every day that we live.
So with this brief introduction, the next part of the story will be told in a second post. I do not have a schedule for this. I will write more as I am able to continue. Thank you one and all very kindly for being here.
Elizabeth Jameson is an magnificent imperfect human being – or as she puts it, a human being living in an imperfect body.
Elizabeth married the love of her life and had two boys. She had a degree with honors in law and was a human rights attorney. She was in the prime of her life, and looked forward to serving others with a variety of needs.
Then one day, when she took her boys to a playground, she suddenly suffered from an attack on her brain. It turned out to be a rare form of MS that starts at the brain stem, and it very quickly took hold of her body, ultimately leaving her a quadriplegic. In the early stages of her illness, she became depressed because she had been living to be able to help others and to serve in the best ways she could. She first turned to fiber arts as a way to express having a body that no longer communicated properly with itself.
As her body’s functions continued to malfunction, she turned to another art form – the MRI’s of her brain, and they became her way to link science and art and to see her brain in positive ways.
I have known Elizabeth for many years; she is one of the artists in the book that I edited with other assistance from Barbara Williamson, Artful Alchemy: Physically Challenged Fiber Artists Creating.
One of the many things that I love about Elizabeth is the way she continues to evolve as her bodily functions are continuing to deteriorate. Her latest art endeavor is called “The Waiting Room.” She got permission to leave paper for notes in one of the medical waiting rooms she frequents, and the medical facility now has an exhibit of people’s thoughts on visiting the waiting room.
You can find a talk by Elizabeth about her challenges on Ted.com, and you can get a copy of the book in E-book format or paperback from Amazon.com. The book has the inspiring stories of some 23 physically challenged fiber artists, and the ways some of us challenge the nature of what constitutes a physical challenge and the use of the word “disability.” Thank you very kindly.