Skip to content

Delia Wilson, Writer Posts


The nightmare is finally fading away though it’s not gone completely yet. Like a post-surgical dream (I’ve had plenty of those), awakening to a changed reality in a hospital room is akin to how many of us feel today. Looking around it seems to be a completely different world. 

But two treasured people in my life were on the other side. With my son, there has been some nasty things said but I think we are past that. He now says he won’t vote again. I am working hard at not saying good in response. But then reality kicks in and then I go “that’s not how this works.” I wondered would he even be receptive to that. Then he called while I was writing this. We started to argue – he wouldn’t shut up. I said my piece and said discussion closed permanently. He said okay. I told him I love him and we parted amicably. 

My best friend and have had a mutual agreement to not talk about several issues for decades now because we’ve always been aware of our differences. A peek into her hidden world took me aback in 2016. I still love her. I always will. I assume we will never talk politics again. So glad she and I can move forward with love to continue being each other’s support.

I don’t forgive … because that speaks of wrongs. I don’t need to talk to either of them about this election outcome. Back in 2002, I was working during the election count in Georgia in a rural, very conservative county. Folks knew me well enough to know I did not support Brian Kemp for state office. When he won, a young man walked over to me to literally laugh at me because my candidate had lost. The jokes on him now with Brian Kemp in office and making a hash of Georgia; oh, yeah, and Georgia’s going blue. WHAT? But his laughter was a omen of times to come and I’ve seen that reaction way too many times in the last four years. I don’t forgive him. I just note his childishness and need to strike out after having won. I will not do that. I will not dwell on today.

My point is that we just need to pick up and move forward. Our nation needs to pick up and move forward while ignoring the fringe crazies who just aren’t our friends to start with. (If you have family member like this, I’m sorry!) I go forward knowing that I still have to watch these conspiracy theorists. We cannot ignore them; we have to be aware of what’s happening. But we don’t respond, we simply work at beating back the insanity and promoting reality.

There are a number of imperatives now. Work on containing the virus which will improve the economy, improving our international reputation while simultaneously exploring how to make this country more equitable, removing the political appointees, restoring our civil servants and rule of law. Not to mention creating new laws to solidify all that has been proved to be custom only. That’s a lot of work.  As a country I know we can do this. 

Dan Rather’s book, What Unites Us, is a good read that reminds us of who we have always been. I heartily suggest you find a copy and read it all. #Steady is the main thing I took away from that book. Steady, stay on the course, realize this is a blip in history – a nasty one for sure – and hopefully life changing for this country. We have to do better.

We have to hope that DC can come together and move us along. It’s not just up to Biden; in the end it’s up to Congress to make sure we have a way forward. I have to hope folks will again revert to some kind of normal – where their words and thoughts aren’t being dictated by the White House. I have to hope.

If we listen, if we open our minds and hearts to others, we can move forward. Before the 2016 election I sat down with a newly discovered cousin. We didn’t agree on anything except one thing. This country has problems and to some degree we all agree on what those problems are. We just respond differently and see different paths. We have to move forward. We have long way to go.

Once I finish crying, I can think more clearly about our future. It’s time to move forward.



Murder and Mayhem in Policing

I have my own share of bad cop stories. This phenomenon is not new. My most direct bad cop story is about a friend of mine who drove from Valdosta, GA, to New Orleans in the early 70s. Sheryl was a long-haired hippy about my size; we all were hippies back then at Valdosta State College. As he was driving to Mardi Gras through Alabama, he was stopped by a cop out in a rural area somewhere. He was never charged, just stuck in jail overnight. I do not believe he had broken any laws. He was white – I shudder what might have been the final outcome of that he had been black. It was discrimination. I also experienced discrimination due our hippie look back then. And we were nearly all white folks.

My husband is a former police officer, police academy instructor and 911 operator. Many of his friends are cops. Many of our students in our martial arts classes were cops. So take this message from a former cop’s view and I’m sure from that of many active duty cops as well.

Our cop stories: 2 decent men, one career long-time cop and one rookie, both our friends and martial arts students. Both got involved in situations 20 years ago that they simply were not prepared for and should not have been involved in. Both resulted in a black man dying. The white career cop was trying to stop a naked beserker who grabbed his gun in the struggle and that poor man died in front of his mother who had called the police for help.

The bi-racial rookie made a mistake, grabbing onto the steering wheel of a suspect’s truck and to save his own life, shot and killed the drug dealer.  Not only were did 2 black men die but the older cop was emotionally destroyed and died of early heart disease a few years later. The equally destroyed rookie cop quit and left town. These deaths hurt everyone but changed nothing.

For all of you “I’m not involved”, “it doesn’t affect me”, “I don’t like the politics”, consider this. Two days ago a black man in Kenosha, Wisconsin, was shot in the back 7 times in front of his children as he was trying to get into his car where the children were. He is paralyzed. It was akin to murder. No question, no matter what proceeded the video action.

In the expected aftermath 2 people were killed last night – a 17 yr old carried an assault weapon across state lines and his to-whom-it-may-concern gunfire killed 2 onlookers while the police were handing out water to the armed vigilantes and saying over the loud speaker ‘we are glad you are here’. They certainly didn’t rough up or do anything to the armed vigilantes.

These were also murders, preventable murders. This is what I pieced together from what I saw and heard. Some of it is in news stories already.

Today the police chief prefaced his remarks with “it wouldn’t have happened if they had obeyed curfew”. A major Wisconsin Republican says it wouldn’t have happened if the governor had called out the national guard. Thank heavens for Governor Evers. One of the lines from his statement said “I have said all along that although we must offer our empathy, equally important is our action.”  His remarks are here.

Not proven but looks to be true:

The 17 yr appears to have been at Trump’s Iowa rally in the front row. link
The baby-faced 17 yr old had an assault rifle when he cannot buy any firearm to my knowledge anywhere in this country.
Open carry at that age is not legal in Wisconsin. link to Kenosha article
He was a Blue Lives Matter poster on his social media (mentioned in news reports)
He was a Police Cadet. He wanted to be a cop. I saw several pictures that seem to prove this.

Questions not yet answered.

Was he traveling by himself, out that late at night across state lines (he only lived 15 miles away in the next state though)
Was he traveling with other extremists? The Kenosha News article has a picture of him walking with a much older man, similarly dressed and armed.
Was he traveling with a parent among those extremists?
Did his parents know?
Did they encourage this?

Did they care?

My question to you

Do you care?

My conclusion

Cops have different motivations for being cops but at this point, there’s no question there are bad cops. But they only exist because they are not vetted psychologically, no one says anything or encourages bad behavior or leadership ignores such problems.

I remember when my kid while in high school said he wanted to be a cop. It was the worst motivations of all – the need for power, the desire to legally control others. It’s an honorable profession. He needed something to strive for but I held my breath ’til he wandered away from that desire because he had no business being a cop.

The only way this can possibly stop is we all speak up. If we all “just say no” to our representatives. Not by rioting or even protesting. People are dying. It’s time all of us realize that we have police problems in this country and it’s time to look at what we have and what we want to have and act on it.

Cops don’t want to be mental health police. Cops don’t want to have to jail addicts or homeless persons. Good cops want to be part of their entire community. They want to have relationships with their citizens. They want to help people in distress and jail the violent criminals who should not be free.

Cops are human.

There are bad and good cops.

We can fix this. We have to fix this. It starts with paying attention, listening and recognizing that this problem belongs to us all. It will take us all to fix it. It is not about politics. It is about saving lives of both citizens, no matter their race, and lives of cops who are underpaid to risk their lives.

All I Have is a Voice

“All I have is a voice” is a quote from W.H. Auden. I was looking for a pithy way of saying my main thought this morning and stumbled on that quote. It’s not just pithy but it is my full truth right now. As my body slowly (and sometimes dang quickly) betrays me, sometimes all I have left is my voice.

I have kept that voice depressed (yes, I have not spoken up as I wanted). Many that know me think all that I am is a voice, a mouthy old lady who just won’t shut up. I have kept silent on too many things for way too long.

My volume has risen as my body has failed.

I have always felt keenly the plight of the poor as I have walked that fine line between lower middle class and extreme poverty most of my life. I have always rooted for the underdog, the principled underdog. I have always understood what’s it’s like to be different, whether that difference is manifested by religion, race, gender, sexuality, family, or most recently disability.

I was raised in a “genteel” southern family in North Georgia. The words of my grandmother still haunt me, anger me. “Act like a lady.” “You shouldn’t….” Why aren’t you like (fill in the blank)?

We were taught to say only nice things, act a specific way (I was a tomboy!), date the “right” people, have the “right” friends, don’t speak up. I rebelled.

I suspect no one that knows me is surprised at that. What most don’t know is how much I didn’t say for much of my life. I have stood my ground and gotten fired or quit jobs rather than open my mouth. My last full time employment resulted once again in getting fired. Unfortunately, part of the difficulty there was physical and not my mouth (my lack of tact and diplomacy “probably” contributed).

I didn’t tell my future employer that I had some physical issues. After a month or so, I asked for some accommodations, a stool for my short legs and a better office chair. I explained that I had some back problems. I don’t remember exactly what I told them but their response was appropriate, “What do you need to do your job?” I told them that working remotely from my house (5 minutes away) would be the best thing for me. I’m a web designer. I don’t need to be on site except for meetings. Next thing I knew I was on probation and then I was gone. The good news was they were scared I would sue, so they gave me an excellent separation package after only 4 months of employment.

It was the start of the recession of 2008. We lost everything when we had little to lose in the first place.

So once again I started over. For a few years things went okay. It was hard for me to get to meetings to network and learn but I kept at it and finally attained a reasonable income for a year or so. Then my body spoke up.

Another surgery, more body weirdness. My husband was already disabled. I had to keep going. I was too close to retirement to even begin applying for disability.

I finally got my own disability placard. I finally had to stop managing my husband’s medical care. I finally had to admit my physical issues were overwhelming me.

2016 was a horrible year. Major surgery Jan 15 – met my deductible and year cap! Another surgery in June. Another in October and then 3 weeks later, developed a multi-bacterial infection from the surgery. After a week in the hospital, I was moved to rehab. Several nights later was the presidential election. I awoke around 3 a.m. with the nurse looming over me. I asked who won. Her response was foul in language and information. I conked out immediately. I was too drugged to be able to react.

So the present political situation started at my lowest physical point. I spent 5 weeks in rehab and had another surgery the next July. I was too weak to do much for a long time. I gave up most activities. I retreated further and further from “real life”.

I spent the next 3 years recovering and nearly 4 suffering through this insane administration.

But my voice.

“I’m for truth, no matter who tells it. I’m for justice, no matter who it is for or against. I’m a human being, first and foremost, and as such I’m for whoever and whatever benefits humanity as a whole. – Malcom X”

As my body betrayed me, I found my voice.

As I resorted to crutches this past year, I found my voice.

As we quarantine due to hubby’s immunosuppressants in the safest state in the nation, I raise my voice.

As the campaign season begins, I continue raising my voice.

I speak as a fully disabled person who spends her time trying to figure out how to get things done during good times. During the pandemic, I speak because I can do little else.

One of the largest problems for any smaller community of activists is having enough voice to be heard. A major newspaper actually had an article about mobility issues on streets where restaurants have moved into sidewalks. I was surprised. More needs to be said and said louder and louder. We need to be heard.

Icebergs and the ADA

But that’s the tip of a very large iceberg. July 26 was the 30th year anniversary of the passage of the ADA, the Americans with Disabilities Act.

I suspect many consider the matter closed. We have a law to protect us!

Compliance is another matter as in general compliance has to be forced on a local level. One incident in Charlottesville, VA brought me in contact with the city office in charge. I got my resolution. My only official complaint got action because the city had an employee (a wheelchair user!) and an office designated for that specific purpose.

But in small towns and maybe very large towns, this becomes a possibly impossible situation. For example, I returned to a coffee shop in Portland, Maine, that I had frequented several times before. This time I discovered the handicapped spaces were gone. This is simply illegal.

I mentioned to the employee that waited on me that they needed to replace that spot, now covered with yellow no parking lines. She told me I could park there – you know, that spot they could tow me from? Since I don’t live there and it is a large city, I didn’t pursue a fix.

In Charlottesville, VA, a large shopping area placed most of its disabled spots behind the buildings! No access, you have to circle around a block of stores to get into the stores. Their on-site maintenance guy told me that he had voiced his displeasure to the corporate owners. They were not breaking the law; they did not care. They only have to have a percentage of spots, there is no mandate about where those spots have to be.

While I was still getting around okay, I could drop my husband off at the door. Once I had to start using the disabled spots for myself, a phenomenon I had noticed in passing was thrust into my lap. They don’t want disabled spots in front of their doors so they will remain compliant by putting the spot as far away from the doors as they can.

Too many disabled are not in wheelchairs. According to the CDC, the number of adults aged 18 and over unable (or very difficult) to walk a quarter mile is 19.4 million, 7.8%. I’ve never been able to find statistics of how many are wheelchair users versus those of us who can walk – just not for long enough distances and need disabled access. I can promise you that a vast majority do not use a wheelchair.

The biggest issue most folks struggle with is physical effort. The more effort it takes to get somewhere or enter a building, the more tired a person becomes. (If you’ve never heard of spoon theory, check this out.) We don’t just need access to physically move. We need it in order to be able to accomplish our goals, run errands or even just have a good time.

We need disabled spots at the front door.

So in reality the ADA is only a small step towards providing assistance to those who need it. It is generally unenforced and sometimes just words on paper. In order for real change, what may be necessary is legal actions – that cost money and energy most disabled folks simply don’t have enough of. Much more needs to be done.

But I have a voice. I may not be able to show up at a protest or a meeting; I may not be able to lobby lawmakers in person; I may not have the energy to affect much change.

But I have a voice.




Welcome to My World!

Having the world slow down and turn to mostly online interactions only, I found this new world to be a mixed blessing. As my physical issues have increased over the past 5 years, it’s been increasingly harder for me to get out and about easily. I’m also basically an introvert as well so withdrawing into semi-isolation is quite normal for me.

Then came COVID-19.

And my social life picked up.

I’m sure that sounds counterintuitive but my social life has relied on Facebook for quite some time now. It wasn’t my idea to join; I was talked into joining FB 10 years ago when I was involved in a high reunion. I was able to get in touch with folks from both high schools I attended; I connected with far flung cousins; I was able to surreptitiously watch my son’s life (snicker) and generally paid little attention until the election of 2016.

Then I got political and got blocked and dropped. Often. Just a tad bit liberal and definitely outspoken. Also, I blocked and dropped my own friends and family to keep my sanity.

Now I keep in touch with a few old friends, an occasional interaction with my southern cousins, lots of fun with my “new” yankee cousins and also with former friends and neighbors from Georgia and Virginia.

Then a plague.

That first week was so much fun! Folks actually responding to me, interacting with me on FB, colleagues actually listening to me. All of sudden my social life bloomed!

You see, I may not be a forgotten senior shut-in but I am not able to participate in activities like I want. I was already in the process of resetting my life. I started ordering from WalMart – I need to drink electrolyte drinks and it’s hard finding the flavor I can tolerate in stock, not to mention the heavy lifting aspect of 8 packs. So Walmart has been delivering my Gatorade for some time now. But now they are sold out – in the nearest Walmart and at the warehouse, and in every store I’ve checked around here.

I had tried Walmart’s pickup option before the pandemic. It was so nice not have to fight my way through shopping inside the store: my crutches are great for walking but not so much for shopping. So that was helpful. Now the only way to get a pickup scheduled is by sitting online and hitting the go button repeatedly at midnight. Second pickup scheduled for tomorrow! Success! As close to risk free shopping as possible and less risk than other stores’ pickup options.

I hadn’t tried a local grocery store chain delivery before – I actually had no clue they would deliver to me 15 miles from the store here in deliveryless Maine. And it’s not my choice of grocery stores. We used their instacart early on, no issues at that time back when this all started. They were supposed to deliver to me on Monday. I’m still waiting on my delayed delivery; I may get one. We are talking a instacart delivery service – a friend of mine in Georgia said the shopper started her order, listed it all as out of stock and cancelled her order. No explanation. So I’m not betting on actually getting the delivery I asked for last Friday. (edit: nope, they cancelled the order completely)

I had switched to Walgreens for the drive up pharmacy window, thank heavens, but my husband’s meds are still at the grocery with no delivery, drive thru window or easy pickup. You also have to walk thru the entire store to get to the pharmacy which I really hate in normal times. Now it’s just dangerous.

I had called city hall (because I believe in preparation) ahead of issues to find out if there were some organizing around helping the homebound and to offer my help. The answer I got was hysterically funny to me. She just said call city hall if we needed anything. Wut? I have lived in smaller communities than Gardiner, Maine, and certainly never gotten that type of attention. In fact, I remember asking the Air Force for assistance many years ago when an ex-hubby’s drinking got out of control. My asking for help was signal to them to do a full-on investigation of him. Forget helping the family. The investigation put me and my son at risk. Oddly enough, I now have trust issues due to what I have witnessed and experienced over the last 60 plus years.

So welcome to my world. We are all trying to figure out how to safely get provisions. But now, my abilities to get provisions have been severely impacted because of so many trying to use the same services. The local grocery who was doing a curb pickup out of a store 15 miles away stopped until this week but I’m not sure I’ll ever manage getting that done – my last midnight attempt said all slots were filled within a minute. One minute.

Senior hours are impossible. We are both high risk and absolutely do not feel safe in a store, having to rely on others around us to keep us safe. Thanks for trying, stores, but no thanks.

I finally called city hall this week (just before I found out my instacart delivery wasn’t coming soon). The city finance manager, Denise Brown, did deliver – in more ways than one. I had hesitated calling because I was afraid there would be a catch, a reluctance to help someone “from away” as they call folks who weren’t born here.  And there’s that trust issue.

Denise picked up the few groceries and meds I asked for, delivered them personally, included a couple of extras like paper towels and marshmallow peeps (!) and then returned unasked today with a loaf of the bread I prefer. All at no cost to us!  She said they have a fund for that. Now, folks, that feels like I’m living in a dream world! It’s just surreal. Maybe Mainers do take care of Mainers. What a terrible situation to have that proved!

My point in writing this today is to emphasize the necessity of folks helping their neighbors and I also want to suggest that if you are healthy and can get out, please do your own shopping. Please let us who cannot get out be able to get deliveries. If you are competing with us for the pickups and deliveries, we can be in dire straits. Seniors especially may need help. Most disabled folks are in my boat, connected digitally. Others, the older seniors, may not have a phone with apps (walmart pickup requires a phone app) or internet access. These are the ones at extremely high risk – too many are simply not used to asking for help just like us but unlike us, don’t know how to navigate today’s world.

Please, pick up the phone, call someone you haven’t seen in a while, check on seniors to see if there is someone who is helping them, let them know you care. I need that in normal times. We need it now more than ever.

Welcome to my world:  be grateful that someday life will return to normal and you can return to your normal. Just don’t forget that I and many other seniors and disabled folks need you just as much then as we do now. This is our normal normal – but now competing for scarce resources.

No Way to Live … or Die

These troubled times are highlighting problems that even I was ignoring. I’ve had trouble shopping for years and with my new crutches, I’m better able to get in and choose what I want but then have issues because I can’t manage a shopping cart on crutches. ‘Tis a frustrating issue that’s turned in to a much larger dilemma. Now we can’t even be safe walking into a store. We are both at-risk seniors, meaning we’re home until this improves.

Living in a small town of just over 5000 gives us a grocery store and three pharmacies within blocks. Literally just down the street. But that is almost useless now. No delivery in town, no to go options. Walgreens does have a drive up pharmacy window – I switched to them in January because of that. Husband’s meds are still at the grocery – there are two waiting for him now. Thank heavens he can forgo those for a while.

We stay stocked up on certain items due to the lack of shopping here and because of the savings. We had just bought toilet paper before this hit. (sorry, not sorry!) Many items we use regularly we have backups of. So we’re not in too bad shape so far.

But we are out of distilled water. Both of us are on CPAP machines and are supposed to use distilled water due to the purity. Well, forget that. Walmart will not deliver distilled water. Shaw’s grocery, 15 miles away in the next town, uses Instacart but is not delivering distilled water. Walmart pickup is booked so that you can’t place an order today. They say keep trying… (edit: success at midnight last night!)

As frustrating as that is, we are safe. We can substitute tap water temporarily. We have food. It just all points out how fragile our existence is. How fragile existence is if you have disabilities.

Besides the fact that disability pays absolute crap – few can exist on it alone, how many folks are sitting in their houses now, with low food stocks, inability to get medicines, lack of needed medical supplies? How many are living in areas that aren’t stepping up to help shut ins? How many of us disabled are barely noticed in good times? We aren’t able to get out and socialize normally. How many people even know we exist here in our new town in Maine?

I didn’t consider the last one to be an issue ’til now. I didn’t consider any of this to be more than inconveniences ’til now. Now there is talk of “non-productive” citizens. No serious talk really but still, can you possibly imagine what it’s like to be worried about getting groceries when you are broke or worried about there not being medical care if you have an emergency medical crisis unrelated to the virus?

I’m still self-employed though the meager income may be disappearing (only time will tell), and we have a small amount of savings and credit cards with much buying power. But I remember we had none of those things. I know there are so many out there that are in that situation now. My heart hurts for them.

There was a politician who publicly said nonproductive citizens should make way for the young and healthy. Though I completely disagree with his couching this as a economic thing, I do believe it is my right to decide when I die. This is something I’ve thought long and hard about since my 5-surgeries-in-18-months experience. If I decide I don’t want to do this anymore, I will bow out as gracefully as possible.

But looking at the scarcity of ventilators, I have also come to a conclusion about a DNR for me. If things get bad, if I get sick and there’s few ventilators, I do not want extraordinary measures taken to save me. It’s actually quite selfish, really. I have no desire to get that close to death again. I have no desire to fight through rehab again. I have no desire to go forward under those circumstances again. Give that ventilator to someone else who has a better chance of living a full life – no matter what the age or health of that individual. If they want to live, let them live and let me die.

To many that probably sounds depressive, negative and self-defeating. But if you’ve ever nearly died because of medical screw ups, you probably understand it. If you’ve been getting weaker, more painful and less able to participate in life, you might come close to knowing what I’m talking about.

I do prefer to offer hope. I also do prefer to rail at the powers that be (will reserve that for the ending to this screed). But these are difficult times. These are times that will kill innocents, if not from the virus, from the over burdened medical community or from lack of medicine or even food.

I do love the bits of positivity I see long distance. I do love to see happy stories from away. I have really enjoyed more friends and family talking with me via social media. I’m thrilled that none of my family are at high risk besides us. I am thrilled that my immediate family members are either employed or retired comfortably now.

What I also see is too much disinformation – promoted by idiots in power, too little help for dying patients and our already strained medical community, too much attacking from the idiots who seem to revel in Trumps actions. All I see coming is avoidable deaths and folks are quibbling about details (especially political) that definitely won’t matter in the history of this pandemic. I see you – those of you who don’t believe this is a true emergency. I see you – those of you who think criticizing this president is treasonous but Obama is still fair game. I see you – those of you who are completely ignoring the at risk population in your communities. I see you – those of you who don’t believe any organized assistance to those at risk is necessary in your community. I see what’s happening. I will remember. Do you see? Will you remember?

1 Chicken, 2 Cars

Shirley Chisholm, first woman to run for president

I guess we have to be grateful to not have elections as often as some other countries do but I truly hate this “democratic process”. Over fifty years of watching politics, little has changed. The most important part of a office seeker is not their promises and I seem to be in a minority on this aspect.

Do you remember Herbert Hoover’s campaign in 1928? His real motto was “Who But Hoover” but the catchy chicken in every pot and 2 cars in every garage is what is more likely to be remembered. When I looked up the details, I found this was not his motto but what his critics claimed he was promising.

That has kept coming to mind every time another candidate promises another pie in the sky scenario like Medicare for All and free college and a basic guaranteed income. Do I like the ideas? To some extent, yes but in reality each idea has not been well thought out. Most importantly these promises ignore the realities Congress and the American government. I’m not about to start spouting details to prove my points because there are pundits that do a good job getting into those weeds and I don’t need the deets to make my point.

I never vote or promote a candidate just because he or she champions a cause. I ignore candidates who ignore the reality of the presidency. I do not vote or promote a candidate by gender or sexual preference. Yes, I would love to see a woman president. Yes, I would love to see a gay president. That’s beside the point.

Flipping the Senate is a first problem – no democratic president is going to be able to accomplish much without resorting to a bunch of executive decrees or putting political appointees into place, getting rid of the “opposition”, etc.; you know, like Trump does.

So first requirement for a president for me is what can you really accomplish and how are you going to do it? How are you going to work with the opposition? What are your ideas to unite the nation? Can you honestly tell me your ideas are not divisive?

Do I want folks to have affordable medical insurance? I’m a case study in how the insurance industry and Medicare have many issues; however, completely upending our system now will have enormous financial impact on jobs and industries, some that actually are not just profit making jaggernauts. People will be affected – jobs will be affected. And now that I’m on Medicare, I’m really quite unhappy with the government making decisions based on money alone and not what’s best for patients. I was on the ACA before Medicare. There’s the start, let’s work on fixing what is there before telling every human that they have to get used to a whole ‘nother system that possibly could be no better.

Do I want the debt burden to be lessened on college grads? Of course, but if you borrow $200,000 to get your degree, then I have a problem with that. So definitely something needs to be done but not relieving debt. This is another instance of a broken system that needs fixing. It took me 10 years to pay off my college debt. My brother saw my struggles and joined the Air Force to get the tuition assistance, so he learned from my experience. Now I never recommend borrowing in the first place. As a relatively poor, but not poor enough student in 1969, I was barely able to scrape through college but I had scholarships, grants and loans to starve on. And I never have had the income to justify the expense in the first place.

Do I want a minimum income for every citizen? Actually I do but I’m realistic enough to know that will be harder than getting Medicare for All. The opposition to this will be incredible – on both sides of the aisle. No one who has never had to ask for help can possibly understand the labyrinth of the “welfare” system or how totally trapped folks can be in poverty. More sytematic problems that need tending to.

Do I want a woman as president? No question. Hey, I voted for Shirley Chisholm in 1972. Will I take any woman? Oh, heck no. A bad woman president would do damage to those who follow after her. Even a good one would be disruptive – not as disruptive as Obama, the first black president, turned out to be. The disruption was the refusal to accept a black president in many quarters which is one of the reasons we ended up with Trump. Obama did a fair job considering but it never mattered to the racists out there. A woman is going to attract horrible attention as well so it needs to be the right woman. So far I’ve not found her.

So no, I don’t want most of the candidates for president. Pie in the sky promises do not work for me. Sanity, education, consistency combined with flexibility, rationality, no screaming, no attacking (but this is politics) – it’s all about reality and diplomacy. If your preferred candidate cannot muster the ability to look at reality, then how in the world can he or she govern?

Are You an Optimist or Pessimist?

I’m no optimist but my pessimist side stays in the background more and more. Recently, it’s been hard to maintain an even keel due to physical issues and then I suddenly realized something yesterday.

I am survivor. In that I keep going no matter what happens. I find it hard to believe life has to be this hard forever, but I’m not optimistic that it won’t either. So really not an optimistic or pessimist. I believe those labels are detrimental to our well-being even if you include realism as a third option. Instead, let’s talk about how you act on the feelings you have.

The reason why this popped into my consciousness was social media, specifically comments on Facebook. I follow a number of Maine newspapers and other sites dedicated to Maine topics. I had noticed on Facebook, and I have experienced this first hand with face-to-face encounters as well, that there is a consistent strain of Mainer who hates living here or at a minimum has complaints they need to vocalize. (I do not deny this might be the case everywhere but this is my present existence so don’t think I’m picking on just my neighbors!)

Now it’s not uncommon for someone to feel this way about where they live. I will tell you I hated living in Georgia; however, I also found out as a military wife that your location always has its pluses and minuses. I returned to Georgia in 1983 from Germany by choice. At least it was familiar and I had family there. But I never liked it.

I’m also used to being miserable as weird as that might sound. I can truthfully tell you I’ve just not had a good time almost ever. I don’t want to sound off about that in public though. People don’t like whiners and I personally believe that whining alone is detrimental to one’s mental health. The old “if you don’t like it, make it change” type of an attitude.

I’ve never had money, never even reached the middle class income bracket, always made too much for public assistance and we are facing a retirement that we cannot afford without resorting to public assistance once I quit working.

But I’ve owned a home most years except while overseas since I was 25. How is that possible? Because I love pretty things but don’t mind working to get them. I bought, remodeled and sold houses several times just to own a home and then to also make some money off the sale at the end. So we’ve had a better lifestyle because of the work I did to make my dreams a reality.

I have always had trouble with jobs – as a liberal arts major, teacher and writer, attaining a decent income was always hard. Other issues came into play such as I tell the truth and don’t tolerate bullies or organizations who aren’t fond of ethics or morality. The last job I got fired from was the final straw. The day I got fired, we got a contract on the house so I ended up using the sale money in lieu of working full-time. I spent that year learning web design which 20 years later still provides some income.

I’m totally self-taught – I guess you could say I’m the original do-it-yourselfer! I don’t have the money for classes but I’m a super self-starter and willing to tackle anything. That includes house remodeling, graphic design, genealogy and a whole raft of other interesting topics.

outside five guys
Snow icing!

So instead of whining I try to do something about whatever it is that I’m upset about. For example, I hate heat. This southerner cannot tolerate heat. I have always lived in the south/semi-tropical areas except for my months in Germany and a year in Washington state. This physical issue (it is genetic due to my syndrome) gets less tolerable as I age. Virginia was better than Georgia but when it came time to choose our next destination, I threw off those southern chains and moved here, Maine.

That is one of the complaints from Mainers I hear often. They hate the colder weather. I might too if I grew up here so I can’t condemn anyone for that. But really, what good does it do to complain about it if you aren’t willing to go somewhere else? Most people were never aware of my heat problem. I did not complain about it; I just stayed in the air-conditioning. When I got the opportunity and freedom to move north, I did.

I know that folks are giving me those buts already. But I can’t afford to move, but I don’t know where to go (besides Florida or Arizona), but my family is here. I just had someone tell me he assumed we had a lot of money since we just moved up here. Ha. No, we lost our last house in the recession. It took 10 years to save up enough money to be able to move out of Charlottesville, Virginia, (now that’s expensive folks!) and when we did, we were left completely broke.

It was risky, my family (and some Mainers) think I’m nuts, and I have to keep reminding myself I chose to do this when things don’t go the way I want. But I decline to complain and act instead.

My genealogy studies are what led me to Maine. I actually dove into that field as an escape from my mother-in-law’s dementia the year she lived with us. I did complain – in fact was left a wee bit traumatized from it at the time but I found a way to make it better.

Then I found out my family was from Maine. Then I took a house sitting job in Boston to be able to afford to visit New England. Then I fell in love with Maine.

So my “escape mechanism” led me to a better place, physically and mentally.

These are just a few examples from a pessimist who refuses to give up. What can you do to make your life better? First step, stop whining in public!

A Medical Impostor Syndrome

(all quotes are from an article in the Harvard Business Review called Overcoming Imposter Sydrome)

Medical Impostor Syndrome. Yup, that’s me. I’ve never reached enough success to claim I have the impostor syndrome where one may have “a collection of feelings of inadequacy that persist despite evident success”. But I do have it in a way that’s impacted how I proceed in my medical journey. I have medical impostor syndrome (with kinks).

There are four key factors to impostor sydrome:

  1. I must not fail.
  2. I feel like a fake.
  3. It’s all down to luck.
  4. Success is no big deal

I have a genetic syndrome named Ehlers-Danlos which is frequently diagnosed by genetic testing. I, however, have yet to be able to claim a specific gene. Nowadays, that lack of finding may indicate that a patient may have Hypermobile EDS (hEds) and that is diagnosable by testing the extent of hypermobility.

Since I’m 68, I’m no longer as hypermobile or stretchy as I used to be. That’s normal because as we age joints tend to stiffen up due to arthritic and other changes. That means I cannot score high enough on the Beighton scale that is the basis of this diagnosis. Especially since that tests only certain joints and not the ones I’ve had issues with. The 2017 guidelines say that these guidelines do not apply if you have previously received an EDS disagnosis and are a senior.

So my quickie diagnosis in 2006 and a subsequent geneticist consultation in April of 2017 were all I had so far. When I finally did the genetic testing earlier this year, no genes for EDS, Marfans or Lowey-Dietz were identified. The geneticist I talked with after the test said he would have tested other possible genes as well so that story is not finished yet but my pocketbook is stretched…as Medicare will not cover testing.

So it’s a who knows scenario further complicated by the MRI finding that I do have another condition that is only found in Erhlers-Danlos, Marfans and 2 other conditions. Yay, I have a unspecified connective tissue disorder.

Don’t I? Uh, yes, says the geneticist. But I’m a perfectionist. A certain doc of mine scoffed, “subjective findings”. That doesn’t really impact my care from him but dang, really? I want to do this “right” and his attitude throws me off my perfectionist path to diagnosis.

I must not fail. Check.

So I have attained a certain success in my medical journey. I “clearly have a connective tissue disorder within the Ehlers-Danlos syndrome/Loeys-Dietz syndrome spectrum”. It is “an autosomal dominant disorder with an affected person having a 50% likelihood of transmission to each of his or her children.” All in quotes are from my geneticist’s report.

So yup, I got it. But no one in my family appears to have it nor does my only child. But it can be a mutation and does not have to be inherited.

So to recap, got it but it’s really not normal and my extra conditions are rare even in the EDS community. My symptoms are not as severe as many other patients and makes me feel weird when no one has a similar experience to my specific set of problems.

I feel like a fake. Check.

So every time I tell someone I have EDS, I sometimes qualify that more as a connective tissue disorder rather than a specific name.

So I hesitate to join medical trials of those disagnosed as hEDS as I cannot be at my age.

So I have 60 years of medical history of being told it’s all in my head. That I’m just extra sensitive. That I am a hypochondriac. That EDS cannot be cured. That I should ignore it. That whatever specialist I’m talking to has no clue and when he or she may have a clue, he or she comes up with a bizarre take on it such as but “defective collagen means you are looser than normal, how can you have tight muscles?” That I’m crazy.

I have continued to work as I can through all of this, moving to self-employment 20 years ago but tasked with being the main breadwinner due to my husband’s disabilities. I’ve worked on appearing normal. I’ve worked on trying to hide my problems for many years from employers and clients. I’ve worked through so many docs who occasionally end up being the right one to talk to .

It’s all down to luck. Check.

At every turn, I do a self-check. Am I being extra sensitive (because I am always that physically)? Am I being alarmist? Is this worth investigating? Can I ignore this? Or will this lead to severe problems later on? Should I go to the emergency room? Will they laugh at me at the emergency room or the next doctor visit? (Yes, that still happens.)

But do I really have something? One doc tells me he believes it’s the new fad diagnosis as fibromyalgia was a few years ago (yes, I have also been diagnosed with that one). But is fibromyalgia real? Of course it is. As is Ehlers-Danlos.

Normal people do not want such diagnoses. I certainly don’t. I don’t want these problems. I don’t want my last years to be a succession of doctor’s visits and tests. There’s the difference between impostor syndrome as described above. I never wanted this medical condition. I did want a diagnosis though. I succeeded much to my dismay. Yet, internalizing that success is still not what I want or need or is it? The questions never stop.

Success is no big deal. Check.


So what to do about it? Here are the Overcoming Impostor suggestions from the article but rewritten for Ehlers-Danlos Patients.

Recognise imposter feelings when they emerge“:
“Awareness is the first step to change, so ensure you track these thoughts: what they are and when they emerge.” Just see if this resonates with you and your medical journey.

Rewrite your mental programmes“:
“Remind yourself that it’s normal not to know everything and that you will find out more as you progress.” And realize that the medical professionals you meet also do not know everything. And that they will find out more if you can work with them or if they are open to it. Every enlightened medical person ensures more enlightened doctors. Baby steps.

Talk about your feelings“:
“There may be others who feel like imposters too.”  So I’m writing this article. So you need community support and open discussions with other patients, your docs and for heavens sake, get your own counselor!

Consider the context“:  
“There may be times when you feel out of your depth and self-doubt can be a normal reaction. If you catch yourself thinking that you are useless, reframe it: “the fact that I feel useless right now does not mean that I really am.” ” This is not just normal for EDS patients; this is truly descriptive of one’s progress and experience.

Reframe failure as a learning opportunity“:
Learn from it. What can you do differently? How can you express yourself better to the medical establishment? Also, one thing I can tell you at my age is that the one thing I “fail” is medical tests. Every inconclusive medical test may well be an indicator of Ehlers-Danlos. Reframe it from damn I don’t have that either to let’s read, research more. Be sure to watch those youtube videos of the EDS conferences and webinars.

Be kind to yourself“:
Tell that voice in your head to shut up. You aren’t crazy, you aren’t a hypochondriac, and no matter what, you do have worth. Learn to replace those thoughts with some positivity. Find what’s good in your life. I’ve finally decided writing, my always fallback, is my way forward.

Seek support”:
Facebook groups, local support groups (hey, video conferencing can make more things possible), counselors, family members, friends, religious entities. Recognize you may never get the support you deserve but take every bit of goodness you can find. It can add up.

Visualise your success“:
This is a hard one. What is success in a case of medical imposter syndrome? I’m not sure yet. I can think of a number of small successes, small wins, like a doc who sympathizes, someone who holds open a door for me, a test result that indicates maybe we are on the right path, a spouse or family member who finally gets it…

Do comment – tell me what constitutes success in your medical journey. I want to know.

Medicare For All

Be careful what you wish for!

I’ve had experience with medical insurance that encompasses most all options. From military to no insurance, from an HMO to a PPO, from the ACA to Medicare. None have been satisfactory but medicare is a major problem for me now. It is not insurance. It is a government-run mess of insane rules and surprises.

My medical coverage path has been erratic over the years, with different employers to self-employment. I was drowning back in 2012. My insurance, COBRAed in 2009, had gone from less than $300 a month to over $900 when I was informed that my rates were jumping to $1200 a month in November. Suddenly I was facing being uninsured again. The good news was the Affordable Care Act was about to come into reality with the website to launch on my birthday that year.

I ended up with little time being uninsured, thank heavens, and I was thrilled with my new insurance. My cost per month, adjusted for income, was back down around the $300 level and the benefits were much better than my previous much more expensive policy.

Then came the hospital bills. I have Ehlers-Danlos Syndrome (or a variety of some yet unidentified connective tissue disorder but that’s another discussion). I had had little major issues up to that point but then my colon quit. It just went on a sit down strike and I was faced with an agonizing decision. I opted for an ostomy which happened January 15, 2016. I was pleased to have met my yearly cap 2 weeks into the year but the cost was enormous. I owed over $4000 after insurance at a hospital that prefers to sue. For someone whose working life was nearly over and not yet on social security, I wondered how we were going to survive.

The answer came months later when I became eligible for Medicare and a sibling stepped up to help out. Handy coincidence, I thought at the time. I went on to have a total of 5 surgeries in 18 months. I incurred no bills beyond my airfare and lodging to Cleveland, Ohio for my last surgery. My cost? I signed up for medicare part B and a AARP supplemental policy. The supplemental was pricey comparatively but worth it because the one I chose had no copays or deductibles.

Fast forward to today. My problems due to the EDS have worsened and I need much more medical care now than before. For the first time I need more than Medicare provides. I need compression stockings, I need mobility aids, I need occasional transportation assistance. I also needed hearing aids and knew already that Medicare wouldn’t pay for those. Due to multiple disabilities, that obstacle was conquered with the assistance of federal monies and a state program, allowing me to continue working thus avoiding Medicaid and food stamps.

Medicare does not cover compression stockings – one of the needs more often found in the senior population.

Medicare does cover mobility aids – but only 1 every 5 years. Get a cane through Medicare and need more? You are out of luck. Get a walker/rollator and then find you also need a wheelchair? You are out of luck. Ehlers-danlos? It may require most of those aids depending on the needs of the day. Which one do you pay for? I opted to save it for the just-in-case wheelchair.

Medicare in general will not cover breast reduction. They may say they cover medically necessary procedures but woe be to anyone who needs a plastic surgeon to perform what may be medically necessary. The decider is Medicare, not the doctor or even a team of doctors. My recent brush with this found a 55 year old plastic surgeon who described one situation that medicare deemed unnecessary. A patient had an open wound on his leg for over a year. The plastic surgeon closed it. Medicare denied payment. You can’t get those procedures pre-approved, by the way. You wait until after the surgery to find out whether they cover it or not. So much for improving my posture and back pain! (Open up the spine, insert a rod and pins and endanger my life and cost more? That’s fine with them.)

Transportation assistance? In the great state of Maine, driving long distances for medical is a given. I do a weekly trip of 40 minutes one way for physical therapy. I’ve had to cancel appointments due to not feeling well enough for the drive. Surgery? I have to have a driver as hubby is no longer safe doing much driving. I’ve met some sweet neighbors here that have offered to help. Considering the distances, I then need to pay for their time and gas (or try to pay).

Advantage plans? I’ve looked at them and though one might have worked to some degree before my move to Maine, it’s not worth it here. I knew before I moved that I would need specialized care in Boston. Most advantage plans (and many medicaid plans) will not cover any out of state costs. With the high deductible plans I would also end up with many creditors and the insanity of managing payments to them with a possible higher cost per month than my supplemental plan.

So to recap, Medicare is great – as long as you don’t have a chronic rare disease. Or a heart / circulation problem requiring compression stockings. Or an erratic mobility issue.

So how much have I put out of pocket recently? $20 for a used rollator. $250 for special crutches so that I can avoid a wheelchair. I do have a wheelchair – I have physical custody this week of someone else’s wheelchair, just in case I need it. Thanks, neighbor! The recommended compression stockings were $75. I did return those as I couldn’t get them on and rebelled at the cost. That’s just this last month by the way.

I keep thinking about those young people who are severely disabled with EDS who do get medicare for disability. They face a lifetime of restrictions beyond their disease. A lifetime of being told no. A lifetime of facing costs that may mean either someone else has to step up and help or a gofundme campaign. A life of quiet desperation. Oh yeah, and if you are under the age of 65, you cannot buy a supplemental or advantage policy. Copays and meeting deductibles apply.

Medicare is great. Social security is great. These social nets are necessary.

But whatever you do, don’t mistake Medicare for health insurance, because it’s not. It is government funding for specific things. It is a stab at medical care – medical care controlled by government employees and arcane rules.

If you have a chronic condition, especially if it’s rare, Medicare is a panacea, not real medical coverage.

Can You See Me Now?

Just recently I moved into a new category of disabled. For many years I’ve been part of the invisibly disabled. Struggling everywhere – whether in a store, in a crowd, in a parking lot. I started asking young people to help me – playing the little ole woman thing. But I so often had to ask. And sometimes it’s just easier to go home, stop shopping, stop looking for a parking place.

I’ve had some problems with walking for some time now and I had been ignoring it. When I would reel around and stay upright, I was gleeful. “I didn’t fall!” Then I sprained my ankle. It wasn’t a bad sprain; I taped it and a few days later it felt pretty good as long as I didn’t bend it one way. Then I tried to fall a couple of times ’cause it would just collapse. In addition, we discovered I seemed to have some nerve damage or impingement on that same leg.

While taped, the ankle felt so secure, so strong! Without the tape, it was just wobbly. Then I realized I was just wobbly. As one fellow EDSer said, rubbery. I have osteoporosis and have been dang careful since my diagnosis to prevent breakage. So I started trying to figure out what mobility aid I could use. Not a cane, the wrists don’t work well enough for that. Not a walker, I can’t lift the sucker in and out of the car. Regular forearm crutches required too much hand/wrist action. Not ready, thank heavens, for a wheelchair.

Then someone suggested a new type of forearm crutch. They look like something out of Star Wars – I rented a pair and was sent white. I wanted black, thinking I would rock the Darth Vader look. Cousin says the advantage of white is that it’s easier to see. Then the world changed.

All of sudden I have people offering to help me as I enter a store or when they encounter me in the store. I have folks apologizing to me when they suddenly realize I’m waiting patiently for them to get out of the way. I get stares when I’m used to being ignored. I get asked questions since the crutches are really quite different looking. I’m no longer a mousy little old lady but a standing up straight storm trooper!

I became visibly disabled. I am seen now.

I get help – sometimes even when I don’t want it. I get salesclerks falling over themselves to help (to get me out of the store faster and safer to protect them? dunno, but I wonder). Folks no longer try to figure out if I’m disabled or not when parking in a disabled spot. They no longer resent my ability to walk after I am seen parking in a disabled spot. Inside, they either give me plenty of space to maneuver or ignore me as if I don’t exist. That dichotomy is truly fascinating.

I keep getting myself into idiotic situations. Walking into a store and realizing I have no way of carrying products or using my preference of a small cart. The crutches just don’t fit on it or even on the larger standard shopping carts. I carry my iPad dang near everywhere as it’s my new book du jour – lots of reading material! Well, try carrying that and a pocketbook on crutches. Nope. So I finally got a knapsack (my first ever real one) with partitions too deep and buckles and pockets and the ability to adjust to my needs.

In some ways I love it. In some ways I hate it. I also hate having to carry anything; however, my asthma inhaler now has to accompany me. Did you know that Maine is one of the states with the highest asthma rates? My occasional mild asthma has turned into a constant mild asthma. Guess it’s not going away again. That inhaler was the last straw for the small pocketbooks I’ve been carrying for years. I moved to a larger cloth bag ($5 at goodwill) to be able to carry all the bits and pieces that need to go with me now. Then I had to trade it for a knapsack.

I bought a small wristlet purse for the money and credit cards that can be pulled out and used separately. I’m now carrying my Morphie charger for the phone and my car charger as well. I carry a set of ostomy supplies, leaving nothing to chance as I have for years. An eyeglasses case so thatI don’t lose or break my reading glasses as I have done so often in the very recent past. Sigh. An extra small cloth bag for shopping – though I’ve found enough stuff hanging off the crutches tends to make me much less safer. And the list of contents goes on….

Walking on the crutches has shown me that I’ve been walking so carefully that I was watching the floor, hunching over and walking incorrectly. One of the weird problems of Ehlers-Danlos Syndrome is poor proprioception where it is easy to “momentarily lose a sense of where the limb is in relation to the body”. So when things go bad – it’s truly hard to figure out what’s the right way to do things. This is why EDSers are used to being called clumsy.

I’m now in constant physical therapy using the crutches. I’m standing straighter and walking correctly while using them. I’m starting to be able to better stand straight without the crutches since I’m actually exercising those core muscles that are still so weak after a massive abdominal surgery 2 years ago. And it’s less likely I will fall.

As time goes on, I feel less and less conspicuous. I now can go walking even when I feel weak or ill. I can go places where I may have to stand for longer than I want as I can now rest on the crutches. I don’t have to give up shopping before checkout. I’m moving more and enjoying it more. When someone expresses pity for me, I tell them this is the better solution – helping me to avoid a wheelchair, keeping me mobile and self-sufficient.

Now if I can just figure out how to shop as I need while on crutches. I need a tethered float cart to follow behind me. What? Not possible? Au contraire. After all I now have Star Wars crutches!