From apolitical to activist

When I won a green card in the lottery in 1993, I was suddenly presented with an unexpected doorway to a whole new life. I wrote about that in my memoir, Peeling The Onion, and I also published a blog on the subject here.

When I was growing up in Ireland, families tended to all hold the same political view, much like religion. I never really gave politics any thought. As soon as I turned 18, I voted in every election, never considering who or what I was voting for, just following the family tradition. I honestly had absolutely no interest in politics.

Moving to the United States was a huge change for me. I came to the US filled with optimism and I wasn't disappointed, at first. I had no difficulty finding work that I enjoyed. I was appreciated for my skill set, despite being female and in my late 40s. I won achievement awards at every company I worked for. I was very happy to be here, back then.

Quite apart from all the obvious differences, politics was a big one. It was a subject that most people avoided or had heated arguments about. And there were only two parties! But I wasn't a citizen, didn't have a vote and was still not interested in politics. So, it didn't matter to me. Then one day the phone rang, yes it was a landline. When I answered it, a voice asked me if I considered myself to be a Republican or a Democrat. I took a second to think about that, then I responded: "I have no idea, I guess I better figure that out." Then I hung up. 

That was when I started to move away from being apolitical to being politically curious. I asked everyone I met if they were R or D, and why—what was the difference? Most of the answers were unsatisfactory. To me, they all ranged from just a little bit subjective to downright fanatical. I wanted to be educated, not indoctrinated. Then one evening, the couple who were house sitting with me, Kevin and Anna, had a party. Kevin had just returned from a two week, in house clinical study. All the guests were his co-victims of the study. A whole new set of people to question. 

One young guy impressed me above all the others. When I asked the question, he got totally involved. It was very clear he understood where I was coming from. Complete ignorance and a need to be educated. I have often wondered about him since. I had no clue then and still don't know which side he was on. He gave me a very objective outline of what each party claimed to stand for. Then when I asked him more pointed questions, such as "Who takes care of the little man—the small businesses?" his answers were still objective and informative. That was 1994.

In 2000 I became a citizen and I have exercised my right to vote in every election since then. At first with some ignorance and too much influence from people I trusted, I voted R. Then as I watched more closely what the people I had voted for were doing. I switched to D. I continued to attempt to learn and understand. One of the biggest lessons I have learned is, to quote Rachel Maddow: "Watch what the do, not what they say." It's madness to believe a word a politician says when they are looking for your vote. No matter which party. They say whatever they believe you want to hear and if you look closely, you will see they are promising to do thing they can't possible deliver. 

Fast forward to 2025. It would appear that absolutely nothing that young guy told me back in 1994 still applies. Both parties have changed so drastically that neither stand for anything they used to claim. And sadly, they either don't know what they stand for, or they stand for personal gain at the cost of the American people. It would appear that most of those American people are throwing up their hands and saying: "What can I do? I voted." then sitting back and burying their heads in the sand. Each election is a choice of the lesser of two evils. And your choice depends on how much attention you have paid to what has been going on around you. 

This is me at the No Kings Rally
Marble Falls, Texas.
I'm the one on the right

I wanted to go home. Escape from this hell that Beautiful America, the Land of the Free, had become. For reasons I won't go into here, moving back to Ireland wasn't an option. That was when I decided I was not going to sit around and feel sorry for myself. I started listening to The Bulwark podcasts. What's educational about the Bulwark is that the majority of the people there are remnants of the original Republican party. They still hold dear all of the good things that party once stood for. But, because the Republican party has abandoned all that is good, they are now ex-Republicans but can't accept much of the non-conservative beliefs of the Democrats. 

The very best thing about the Bulwark is they tell it like it is, along with their honest opinion. They do not attempt to ram their opinion down your throat, so I get a glimpse of what used to be acceptable behavior for both parties and what is wrong about both parties. And, I get to decided for myself what I approve of and what I can't accept. I continue to be educated.

I still want to go home, but as I can't do that, I will not sit and watch this wonderful country get crushed under the feet of megalomaniacs and ditherers. I am now moving into my activist era. After all, if a bunch of 79-year-old geriatrics can run this country into the ground, why shouldn't a 79-year-old Irish woman stand up and be counted?

Read the Instructions

Don't just trust the doctors.

I mentioned my husband's battle to have his Parkinson's Disease diagnosed in a previous post. This post is to sound off about my own experience with what I consider to be seriously inadequate health care.

On Monday—it doesn't matter which Monday—I started to experience pain in my lower back. Not the usual sciatic pain at the very bottom of the spine. This was different, not like anything I had ever felt before. It was just above the waist, and to one side of the spine. I assumed I had pulled a muscle, took a couple of ibuprofen and waited for it to go away. It didn't. In fact, it got progressively worse. By Wednesday I was getting a shooting pain, like an electric shock, when I moved a certain way, stretching my arms, twisting or even just standing up from a chair. On Friday, I set an appointment with for the following Monday afternoon, with the physicians assistant; my doctor wasn't available at such short notice. By Sunday, I was barely able to move without the pain knocking the air from my body. It wasn't just excruciating; it was frightening. 

At first I suspected a kidney stone, then I thought maybe a herniated disc. Of course, Dr. Google does tend to feed us all sorts of frightening information. But in my eightieth year, and having lost both my parents to cancer in their seventies, I can excuse myself for being slightly hypocontriacial. My husband talked me into going to the ER. I didn't take much persuasion. So, I drove the 30 minutes to the nearest hospital in Cedar Park. Checking in at two in the afternoon and waited.

A doctor examined me and ordered a back X-ray. We waited some more. After the X-ray, we waited again. The ER was kept busy but wasn't too crowded. Eventually the doctor came and told me no broken bones. That thought hadn't occurred to me! She said it was arthritis and probably had been aggravated by something. We waited again. A nurse came and took us into one of their more private areas, applied a lidocaine patch and gave me one pain pill which she said was oxycodone and acetaminophen. She told me a prescription for lidocaine patches and a topical gel for the pain would be sent to my pharmacy. Then we waited some more. Finally, I was given a bunch of papers to sign—as far as I know, there was no mention of not blogging about my experience. I asked if I would get a prescription for painkillers and was told no. That was just as well, because CVS refuses to dispense codeine so I suspect they would refuse oxycodone too. Incidentally, that pill worked like a charm and I drove home pain free, stopping on the way to pick up the patches and gel.

I slept badly on Sunday night; every time I moved, the pain woke me. On Monday morning, a full week since the problem started, I showered and opened up the packaging to apply the gel. Luckily, before doing so, I read the instructions. I posted a blog a number of years ago, on how important it is to read the fine print. Fortunately, I didn't forget that lesson.

Not only did it specify to NOT use on the back, it also stated it should be used on only three areas at a time and there was a risk of heart attack if misused. Clearly pretty serious stuff. Unless of course, the intention was to cause a distraction from the pain in my back—that would work. Needless to say, I didn't apply the gel.

I got onto Amazon and ordered a back brace. That was at 6:30 in the morning. It arrived three hours later and supplied instant relief, helped by a couple of ibuprofen.I was still in pain, but it was very much better.

That afternoon I saw my doctor at 3:00. She agreed that I was correct to not apply the gel to my back, under any circumstances. She asked me if the ER had done any lab work, or given me a prescription for muscle relaxers or pain killers. The answer was no on all counts. She didn't even try to hide her amazement. Because of the location of the pain, she too entertained the suspicion that it could be a kidney stone. She gave me a referral to get a Renal CT scan, also physical therapy, a prescription for a muscle relaxer and a painkiller stronger than ibuprofen, plus she asked me to go by the lab on my way out and have a urine test.

The medication helped immediately. On Tuesday, the results of the urine test showed no issues. Early on Wednesday morning I had the CT scan.The results of that came in on Thursday afternoon. No kidney stones, no suspicious mass. Yes, some signs of diverticulitis, not infected. Conclusion, musculoskeletal. Recommendation: Physical Therapy. Unfortunately, my faith in PT is less than my faith in ER doctors, having had less than ideal experiences with various different PT clinics, on more than one occasion.

Silver linings—yes, I still look for and find these. Two weeks later, the pain is almost gone and I didn't put that gel on my back. I shudder to think what could have happened if I had.

I guess the moral of the story is read the instructions? I really don't know. But I'm learning to trust the medical profession less and less. I remember a time when doctors actually cared about their patients. With the exception of the physicians assistant, who did help, and did care. Now it's just a conveyor belt. And yes, I do understand that they are understaffed and overworked, and constantly being sued. I'm sure that takes it's toll. Hell, recently my husband asked to be referred to another neurologist, he was told there was a six to twelve month wait for an appointment with the only other available one in the area.

Some days are better than others...

When I refer to myself as an author or a writer, I feel as though I'm delusional or just telling lies. But having published a total of six books. Five are novels and one is a memoir, and having sold almost four thousand copies of said books, I have to believe I am a writer.

Now, when I say four thousand copies, I hasten to explain—my books are available as e-books, paperbacks, hardcovers and audio. Of these, I have sold (at the time of writing this) almost fifteen hundred. Amazon offers a subscription library, Kindle Unlimited. Books enrolled in this offering result in the author being paid per page read—that is a fraction of a penny per page read. My total page reads across all of my books is over half a million (again, at the time of writing this). A rough calculation of total pages read divided by the average page count per book, results in two thousand four hundred books read. That's always assuming it wasn't several million people reading just one page.

Of course, these sales most definitely do not qualify my books as best sellers, but I'm happy that people are reading them. Even happier that some of those readers are writing reviews and  awarding some stars. At the time of writing, my novels are averaging 4.5 stars. 

So, what is a normal day like for me? As I say, some are better than others. I do write every day. Some days more than others, because life does tend to take over. Doctor visits, dentist visits , grocery shopping, etc; take up time. And when I say 'I write', some days I sit in front of my computer thinking and plotting and doing very little actual writing—but I believe that counts; it is all part of the author process. 

As I edit, revise and polish each book, preparing to publish it, I'm gripped by a fear that I might not have another book to write—then what do I do with my days? So far, that hasn't happened. But now, once again, as I'm about to send my seventh book, the sixth in the Escape Route series, to my beta readers, I have to face that fear again. Do I dream up another book in the series and start outlining that? Do I come up with something completely different? The answer is I don't know yet. I will sit in front of my computer and hope that inspiration hits me once again.

You can find my books on Amazon.com, Amazon.co.uk, Amazon.ca - and for those of  you in Ireland, if you want the physical book, try Amazon.de—they do offer an English language version of the web site.

Suffering from two diseases I haven't got

To be fair, my poor husband is suffering a whole lot more than I am. He has Age Related Macular Degeneration (AMD), and Parkinson's Disease (PD), though we have no idea what stage. 

According to Parkinson.org, Parkinson's disease (PD) is a neurodegenerative disorder that affects predominately the dompamine producing ("dopaminergic") neurons in a specific area of the brain called substantia niagra.

This is what AMD does to your eyesight:

From ophthalmology24.com

It took us five years from when we first noticed symptoms of PD, to the point where the medical profession paid enough attention to us, to have him tested. During that time his doctor told him if he could hold his hand still against a flat surface, the tremors were not Parkinson's. He made it clear that he didn't believe my husband when he said he was constantly fatigued. Or perhaps he suspected he was partying too much. When his doctor finally agreed to refer him to a neurologist, we told her we suspected Parkinson's. She referred him to a neurophysiologist. He diagnosed mixed anxiety and depression. 

Now, to be clear, tremors, extreme fatigue, anxiety and depression are all symptoms of Parkinson's. That was four years after we had diagnosed it ourselves but couldn't get traction from the experts. One year later, we returned to the neurologist for follow up. Finally, she said she suspected Parkinson's. We said we had already told her that a year ago. She flatly denied we had ever mentioned it. 

So, the full battery of testing that should have been performed five years earlier, finally agreed with our diagnosis. He was then put on a bunch of medications. Most were to treat the symptoms. Parkinson's has no cure at the time of writing. And, with the damage that has been done to medical research in the US recently, it's unlikely there ever will be—unless the Chinese come up with something.

One such medication was carbidopa levodopa, which increases the dopamine in the brain; this should help to control the tremors which had become very bad, and also body stiffness. Unfortunately this medication has horrible side effects. 

The poor man spent the next six months with constant nausea, exhaustion, depression and dyskinesia—jerky, uncontrollable movements. So, the medication to stop the tremors increases his fatigue and depression. While it does control the tremors, it has caused him to have uncontrollable jaw movement. That is, he constantly moves his lower jaw from side to side. While the nausea has eased, it hasn't ceased completely. Some days there are no side effects and other days he is totally incapacitated for hours after taking the medication.

Now, if all that seems to be overwhelming, add to it the separate issue of Macular Degeneration (AMD}. There are two types of this disease, wet and dry. My poor husband has both, one in each eye. Again, there is no cure for this disease, though, as with Parkinson's there is a lot of research being done—was, before it was all shut down. Dry AMD is the least serious, and can be slowed down with a heavy mixture of vitamins. Wet AMD is extremely serious and currently he is receiving regular injections into his retina—yes, in his eyeball—to try to minimize the impact.

The impact of AMD is loss of vision, starting in the center of the eye. One example I read to explain it, is if you look at a clock face, you see the numbers but you can't see the hands. Not a lot of use? Luckily my husband had the good sense to realize that it was time to stop driving. Not before it became somewhat terrifying. He would sometimes stop suddenly in the middle the road, because he saw something in front of him that wasn't actually there. Worse was when he didn't see things that were there, or didn't see traffic lights, particularly scary when they were red.  For more information on AMD, click here.

So, I went from white knuckling it, yelling 'Red' to getting a driving lesson every time we went anywhere. Thankfully, after a year, it would appear my driving has 'improved' sufficiently, or maybe the poor man's eyesight has deteriorated so much he can't see where we are going.

The driving lessons are the least of my problems. The mood swings are hard to deal with. I never know when he is going to be deeply depressed, or wildly angry. And I am all he has. Well, 99% of the time, I am the only person he sees. I have a large, caring family. Unfortunately they are scattered thousands of miles away, almost all in other countries. He has a very few family member living close by, and they are too busy with their own lives. So we spend all day every day depending on each other, attempting to battle our way through the symptoms, knowing they will only get worse.

Before you say it, I did try to get him to agree to trying a support group, He refused. He has never been a social body, and he believes a support group would consist of a group of people as miserable as we are, sitting around whining about our problems. I know if we lived closer to members of my own family, we would get the support we need. But that would require a huge change in lifestyle for him, and in his current condition, change is the last thing he wants to consider.

So, how am I suffering. Well, I love my husband and it breaks my heart to see him suffer. To hold him while he cries, or keep my mouth shut while he rants and raves, or threatens to kill himself. Advice I keep reading is 'take care of yourself". Exactly how? As he needs more and more care and attention, and I am the only one available to do that. What do I do? I can't just abandon him for even a couple of hours. Particularly as he doesn't do well being on his own. 

Apart from that, I have lost the man I married. PD and all of it's many side effects, has a impact on the victim's personality. It's inevitable that the impact of so many unpleasant symptoms plus the slow deterioration of the dopamine in the brain, is going to cause changes to the way a person thinks, feels and reacts. Sometimes he goes for days without saying more than a few words, to me or to anyone else. Other days he snaps and snarls at everything and everyone. And, getting rarer, occasionally he is his old cheerful self. 

The battle against two diseases, both of which we know will eventually win, is soul destroying. And if we're not careful, will destroy not just our souls, but also our relationship. And now, with the political mayhem in the Disunited States, research into these diseases has been halted, the threat of cutting Medicare and Social Security, plus tariffs on pharmaceuticals will most definitely finish us off.