As we are packing up to make hopefully the last major move of our lives, I look back and forward at the dilemmas we face in life, sometimes that we have to decide very quickly, And sometimes we have to ponder over whether we are making the right decision or not. Strangely, as many symbolic things have happened in this last month or so, I had an e-mail from the only other man I was ever married to in this lifetime. We were young, and it was during turbulent times in the U.S. People were disgusted with the government, and a branch of people decided to start buying up all the gold silver, something like what is happening now. My husband, who was a practicing architect at the time, got hooked up with some people who were buying and selling gold and silver, along with the Hunt brothers and many others. Worse still, he decided with some other good friends that if he did not pay taxes, it would help to make a difference in the government and perhaps get them to stop their foolishness. How naive people were in those days (unlike people today - really???). I was working at a full-time job and attending my last year in a university. I was not in agreement with this decision. I was going to to continue to pay my taxes. When you play the game of monopoly, you cannot play by the rules of checkers. It became more and more stressful. Our home, which backed up on an alley, and was surrounded by bushes all around, was highly susceptible for someone to come in and rob and perhaps even kill my husband. Plus there was the worry from the government itself. They were locking up protestors everywhere, and the ones they were going after first were those doing it and teaching others how to do it. Finally, under the stress and concern that I would come home and find him gone, and perhaps be taken to jail as an accessory myself, I told him that if he would not quilt doing this, I would have to leave. I simply could not take it any longer. It was a sad day after I had graduated that I packed up what I could of just my own things and drove away to start a new life and perhaps adventure, one what was free of rebellion. I would travel back and forth for the next some years to an anthropological/ archaeological adventure with a well-known anthropologist who had discovered some very talented potters down in the interior who had literally re-invented the craft of creating clay pots from just finding pot-shards. My own degree was in archaeology, so it was right up my alley. I took turns helping with running my friend's economic and free market publishing business and editing a book he was in process of publishing of his grandfather's work and filling book orders, getting the book published majorly old school in hot type, and other aspects of the business while he made trips down and back to Mexico. It was a good adventure, but I never forgot my friendship and love of my former architect friend and husband. Suddenly, just a few days ago, I received a notice from him that he was on his own once again (after what I thought was two additional marriages), but he had called to let me know his last wife, whom he had loved, had died back in January of Huntington's Disease, a horrible inherited disease that affects all the motor parts of the brain, unlike Dementia or Alzheimer's, and may or may not be inherited. It is so strange to look back on all the dilemmas I have dealt with in this life, and the choices I have made related to them. I have a significant other now, some years my junior (yes, I guess I am a cougar, but what is age but numbers?). I took him into my home and heart when he got injured on the job in this senior mobile home park, and have been his caregiver/advocate (unpaid as a volunteer) since perhaps 2016 or 17, and we live a very simple lifestyle. He became my caregiver for a short time when I had breast cancer surgery, so it was a good trade. Today we are in process of moving to another state with less issues or so we think, and hopefully where I can finally get the care he needs so much since he has two failed neck surgeries, and is now partly disabled. Perhaps life is always intended to be full of dilemmas and perhaps that was the symbol of the lives of Adam and Eve. I thought about the man, Jesus, bearing that cross, and how it too represents the life and death dilemmas we will face in our times. What dilemmas do you face today?
Life doesn’t always give us strength when we need it most. We may be ill ourselves and still have to take care of our significant other. Or perhaps we have to deal with legal issues that we are ill equipped financially or otherwise to deal with. Or a child has run away, or gone missing. There are as many things as we have to deal with as we could come up with, sometimes multiple issues at the same time.
When my significant other came home from a major cervical surgery, I was ill and had been for months with chronic bronchitis. He was not ready to be released without some form of nursing care or rehab; he could not lift his own body up from bed as his right arm was paralyzed, and he could not cut up his own food to prevent choking, or to even bathe himself or use the bathroom by himself. I am sure there are others who have been in the same situation with loved ones.
Each day I dragged myself out of bed, and did whatever was necessary to help him. During this time, I also had to get him to multiple medical appointments and back to the spinal clinic in another town about an hour away. As we were about to enter the clinic one day, I suddenly remember the lights going out and falling on my face in the dirt. Luckily some good folks came and helped me back up; my significant other could not possibly help me and he was clearly upset and terrified. My nose still feels as though it was broken and I hit my head pretty hard, and hurt my knees as well. Other than going to emergency and waiting for perhaps 10 – 12 hours, I chose to just try to make the best of it all. I cannot leave my significant other at this time.
The fault is not that of his doctors or mine. It is the Medicare and MediCal insurance that is not giving us what we need. When I had a bad infection, even though the medication was prescribed by a specialist, I could not get it for two weeks because the Pharmaceutical Department of the insurance had to approve it as it was not covered. In my younger years, I was a Regulatory Compliance Specialist for a major pharmaceutical company that made plasma derivative products, so I guess I know a little bit about that issue. During the two weeks that I was ill, the infection got worse, resulting in my still being ill after a couple of months. I file grievances on both issues, and I will follow through on it even though I am still having a difficult time as is my significant other.
The point is not to tell my own story for others to feel sorry for me. The point is that sometimes we have to stand tall when we are feeling weak. We need to remember that even though it is not easy, we have to stand up for our rights, and for those of others. No one said this life would be a bowl of cherries; there are challenges every single day of one type or another. And we don’t need to lose our love of life and the world. We need to remember that when we have our worst challenges, there are always others who are far worse off. Try to help someone else who is worse off than you are, at least giving them words of hope if nothing else. And try to stay strong in the face of many barriers to everyday life. Remember that no challenge lasts forever. STRENGTH is our friend.
Ah, that first bloom of love, when everyone is on their best and each of us seems like the perfect person that we have been looking for. They are, at this point in fact, exactly how we have imagined a lover.
That bloom can last a day, a week, a month, and sometimes even a year or so. But it seems that all of a sudden we are looking at them with different ways. We could not have seen that the male perhaps needed a mother and caregiver more than he needed a girlfriend, or that the female was such a horrible person to deal with – never giving a fellow a break, and expecting too much of him related to sharing responsibilities around the house, and in bringing in money to help with shared expenses.
Relationships are seldom equal on both sides 100% of the time. The scales are often unbalanced for one side or the other part of the time, but it works out fine if the unbalance seems to equal out.
And sometimes unforeseen things happen to all of us – an illness, a heart attack, an accident or some sort of disaster. It can happen to both people at the same time, or one can suddenly have the issue, and the other one has to make a choice to become a caregiver or be in charge of one.
There are people who give the rest of their lives gladly to their mate, taking are of them and helping to advocate for and to protect them from others who might take advantage of them during that time.
Others, the minute the mate becomes ill or has some sort of catastrophic event that is going to require being a caregiver, find it necessary to withdraw their support for whatever reason. Many women who have been dealt the cancer card encounter this situation, but I am sure as many men also have similar experiences with other physical or mental issues.
Those of us who try to follow through and take care of our significant others often run into problems. Sometimes the other person doesn’t really want to get better. For whatever reasons, that person may keep trying to remain an invalid even when in reality he or she could get better with a little effort. Perhaps that person had to take responsibility for others most of his or her life; or perhaps the person just wants to have a form of control over his or her mate. At any rate, this is when one of the other person has to make a decision whether to stay or to walk away. It is never en easy decision in either event; the longer the two have been together the more difficult it can become.
How long should a person stay and try to work things out before walking away? At some point in our lives, many of us will encounter a similar situation. There is no easy answer. But we have to respect and honor our own selves first and foremost. If we allow ourselves to keep doing something that provides no nourishment of any kind for our souls, pretty soon we will not have any soul nor any energy left to support our own selves. And the other person will not be benefiting from this either. Something’s gotta give . . .
In the early 70’s, my brother returned from Vietnam. He is five years younger than me, and he was a young kid when he left to be in the Air Force as a Demolition Expert. He spent most of his service time out near the end of the runways, where the planes would come in, sometimes with bombs they did not drop, and one of his jobs was to neutralize and unload them until they were needed again.
When we had the first family reunion after he returned, I could hardly recognize him. He is now considered 100% disabled, though when he returned he was considered 40%. He had a TBI and had multiple surgeries to try to put in a plate, but none of them worked and they made him pass out repeatedly. He also had a spinal surgery that was blotched and so he could not walk well at all, and spent a lot of time sleeping because of pain. And then he had PTSD like so many others, his from having to shoot tiny children who came onto the runway, wired with bombs. It is difficult to imagine how people become so brainwashed or terrorized that they could ever harm their own children and babies.
Seeing him again like that when he had still been a big kid in his mind and spirit when he left, full of mischief and the joy of being young was almost too much. It gave me a heart to work with physically, developmentally and emotionally challenged children and adults, something I have done for the rest of my life.
I first began to work with special needs children in the Torrance and Redondo Beach school districts in California as a substitute, and I worked every single day and absolutely loved it. Many if not most of my children were preschoolers, kinders and middle school aged then, and had multiple challenges. I did this work throughout Southern California for more than 15 years, always as a substitute Paraeducator, Aide, or Teacher (uncertified). I think over the many years, I learned more from my children than they did from me, though I was always an innovator with the ways I did things.
I do not believe that special needs children who are likely to end up living at home or in a group home or other special facility need to be tormented by having them do repetitive work unless they really show an inclination to like that, and yes, some of them are very good and very happy and excellent workers doing repetitive work. My belief is that every child should be given an opportunity to do something that makes them happy, even if it is making beaded necklaces or weaving or whatever else they enjoy.
The book above is the cover of a book by Barbara Williamson and me. Her name, though not on the front of the book, is on the back with the other authors. Besides telling her own story, she made major contributions in the way of decision making and adding creative input through the journey of the creation of the book. Just ahead of the time I was working as a substitute, I decided to start a nonprofit to assist physically challenged fiber artists (art quilters, though many of them work in many mediums besides quilts). Because I too was involved with art quilting, I realized how difficult and expensive it was for them to enter juried shows, often to not get accepted after paying an entry fee that most could little afford. So I wanted to find venues that gave them a lot of excellent exposure and at the same time wanted to teach them professional development. Barbara Williamson and I became excellent friends and she became the Secretary of the nonprofit. We ran it successfully with just her caregiver, Rob as our treasurer, and no money in the kitty, which made running the nonprofit very simple.
The first exhibit we ran was called My World in Black and White, and we had s121 participants from various countries and the United States. The exhibit had some 10 live venues in one year (what we call traveling venues) and the exhibit museums, galleries and quilt shows were only too glad to help us send all the quilts as a group show for free. I only had to get the quilts to the first venue, and from then on, everything went from one venue to the next seamlessly. At the end of the last venue, the quilts were returned to me and I was able to ship them all back home to the ladies. If the venue was local, I was there to help hang the quilts and take care of other chores and greet the visitors as needed.
We ran the nonprofit for some ten more years, with back to back exhibits the entire time, and we did a lot of things besides that, helping after provide school projects and materials for the children of migrant workers, providing donated used sewing machines for other ladies who could not afford to get one on their own, donating quilting materials to the American Indian ladies on Pine Ridge and other things. During this time, Barbara grew her own art and developed her fiber arts as a profession. She is successful in everything she does now even though she is confined to a wheelchair.
We have changed our focus now as we are both older. Barbara lived in Paradise, CA, where the entire town burned down November 2018, causing her to lose basically everything. She has started life all over again and is busy settling into another home in a different city and working on her continuing career. As for me, I am studying a fantastic correspondence and event class called The Silent Eye Mystery School led by Steve Tanham, Sue Vincent and Stuart France. I still tutor special needs children and adults as well as ESL adults, and I will likely be a volunteer in some capacity the remainder of my life. I am currently a volunteer court-appointed volunteer advocate for CASA (a nonprofit located through the U.S.) for foster children. So life is never dull and when not doing these things I am working on more books and caregiving for my significant other, Richard, taking care of my garden and our six chihuahuas, a cat, two huge goldfish and two alien catfish. I am 77 now and intend to stay busy for whatever time is left. Although I have very little in the way of material goods, I have been immensely rich in life experiences and lifelong friends, and for that I am eternally grateful.