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Delia Wilson, Writer Posts

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.

Sigh.

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!

Connections

Recently I was asked to write up something in honor of a cousin who I’ve gotten to know in the last few years. I finally got around to writing it up this morning, a bit ahead of the deadline (meaning I can’t post this until after August 23!) Here’s the core of the piece I wrote but expanded into a look at today’s society.

Today on Facebook my cousin, Dan, posted a bit about finding out that Tennessee Williams is a 5th cousin. He may be closer related to Dan than I am!

It’s all about connections. In this crazy mixed up world we live in now, it’s the connections that make it all worthwhile.

Back some years ago I found a DNA match to a guy named Dana Ward who was not a southerner. As a half southerner / half yankee, I figured he was related to me through my Maine family so I believe I contacted him first. We couldn’t see the exact relationship then but realized that he was a southern cousin instead. My Elam family was massive – making me related to possibly all Elams in the US now. Elams intermarried with Wards, a good bit closer to my family branch than other Elams. We are both descendants of Thomas Jefferson’s family (directly for me his uncle, not TJ). I was living in Charlottesville, Virginia, at the time so we pretty much said we have to visit each other. Dan never made it back to Virginia while we there but I certainly made it to Maine.

Since then I have been graciously hosted by Dan in Maine twice. We have a lot in common – but mostly the insane idea of chasing our far flung families to see what we can dig up. Now that we live in Maine, we’ve already seen Dan and Julia once and plan on getting together for more fun, food and “family” in Unity.

We still aren’t completely sure how we are related but it really doesn’t matter. It’s those connections that save me. It’s finding my Maine cousins and moving north that has saved me. It’s knowing that no matter where I go, there is a cousin lurking in there somewhere.

In Dan’s case, that cousinship helped me to further my research and find friendship out in the countryside of Maine. His constant genealogy work continues to prod me to continue, to remind me how important these connections are.  

Expanding on that theme from my birthday essay above, I can link these connections with a few truisms of our life today.

When I was growing up, it was all about family. There were 10 first cousins with my sister as the oldest and me as the next to oldest. Sis watched us all coming into the world as she is seven years older than I. I remember the other cousins starting more with one 8 years younger. I baby sat some for the youngest ones.

There were a few family reunions I attended and still can’t remember who any of those more distant relatives were. It was a little surreal to have old folks saying hello ’cause they knew who I was and remembered my birth! But I had family.

My son, an only child, with only 2 first cousins at all and none from my side of the family, was raised as a military dependent. Which really means he was raised to be independent. There was no family and no one besides me for him to rely on during his pre-teen years. I didn’t realize how much this made his life so different from mine. When he was about 4, we were living on base in a housing area of mostly 3 and 4 bedroom homes. Which means we were in a 2 bedroom due to less children in the household. He had only one friend who also didn’t have a sibling. One day he was visibly upset. Being a very non-verbal child, I had to dig into the problem. He finally asked me why everyone else had a brother or sister. He was very sad, unusual for him.

He didn’t have the family I had and have grown away from. In that particular circumstance it also made him different from our neighbors. Today it’s actually getting common to not have all those cousins around with society becoming more transient and families moving to get jobs.

One thing I loved so much about the military was holidays. We were usually not near family so we had to do new things to compensate. I had a wonderful time inviting young people to come to my table, to join with us as we made new connections overseas.

I started my genealogy work some years ago kinda by accident. I wasn’t looking for connections at the time. I was indulging my desire to get away from an untenable living situation that I could not walk away from. It was my escape at first.

Then I went ahead and got a DNA test and started getting matches. Mostly Yankee matches. 2nd and 3rd cousins – and even reconnected with one of my Yankee first cousins I hadn’t talked to in decades. I found many cousins from Maine, New Hampshire and Massachusetts; one came south on his way to his North Carolina home to meet in person. Most I met just through the tree on Ancestry.com and not in person.

Once I decided to write a book on the Wilsons of Maine, I started a new path and many new connections. I found, in the end, that I’m related to half of southern Maine and found how much of my identity was rooted in New England food and customs, handed down from my Bostonian great-grandfather. I traveled to Maine and fell in love – no, that’s not really correct – I felt like I had come home.

I established new connections, found new friends and family, and moved to Maine last summer. I am home now because I went looking for those new connections as many of my ‘new’ cousins have also done, thus leading to their journey on Ancestry.com.

If we are going to talk about what’s wrong with today’s society, this needs to be part of the discussion. We need connections and they are continually being destroyed in this century. So my question to you is, have you found new connections? Have you made an effort to find what floats your boat in a non-selfish way? Who do you call family? Who and what sustains you?

It’s the Day After

I had a great day yesterday at the Maine Highland Games. It’s not a fantasy organization but immersion in all things Scottish is fun and speaks to my multiply Scottish ancestors. But then that was yesterday.

This day of the week, Sunday, tends to start out as a low news day with folks posting religious messages on Facebook and a true lack of US based news. I started off the day tussling with a friend who posted a video clip from the Daily Caller. I really didn’t care what grains of truth were in that YouTube clip because I’m positive sure one of the reasons for the degradation of trust in reporting is due to this type of website. Any news source that promotes (and even creates) conspiracy theories is exercising its right to freedom of speech. I believe our duty is not allow that kind of discourse into the mainstream.

I have a number of folks as Facebook friends who are quick to post crap. Yes, utter crap. I have tried to gently tell these folks that the piece in question is either false, misleading, inflammatory or click bait. I find myself then hiding these folks so that I don’t have to see their posts but allow these folks, some of whom are treasured friends, to see my posts and be able to interact with me.

I know that as a former English teacher, reporter and writer I tend to be a bit … uh, gee, what’s the word? Strongly opinionated? Draconian? Tyrannical? But see, here’s the legitimacy – I know of what I speak.

If we pass along rumors, if we allow false, misleading information to invade our fun spaces like Facebook, then we are complicit in reducing trust in today’s media. The present president glories in doing just this for just this aim.
“Stick with us. Don’t believe the crap you see from these people, the fake news. … What you’re seeing and what you’re reading is not what’s happening.” CNN July 25, 2018 (yeah, I know “liberal” but a quote is a quote even from them”)

How do we reclaim the national narrative? Is it possible to do that? I don’t have any kind of provable answer to those questions. I just know that allowing this type of “fake news” into our friends and family time on Facebook makes this worse.

Of course, historically, this is nothing new. It’s part of the mob mentality, the rumor mill. But rumor mills have consequences. For example, while in high school a friend accepted a date request from a black teenager. He was a good friend and we all really liked him, but it was 1966 in Georgia. At the time, my mother was working for the Action agency which covered much of north Georgia so she was constantly interacting with folks from other counties. Two days after the date was agreed on, mother came home saying my friend was in danger. Men from other counties were coming in talking about the date and saying the girl was pregnant with the black man’s child. Two days! In two days, the rumor mill created a situation that endangered both teens.

That’s the power of rumors or “fake news”. The Salem witch trials fall into this category. Lynchings fall into this category. Mass shooters quoting the president fall into this category.

We may have freedom of speech in this country (just be careful who you say what to) but with that freedom comes responsibility. A responsibility not addressed in civics classes, not talked about on Facebook, the rumor mill of all rumor mills.

My own husband is fond of proclaiming various bits as fact. When asked he never can remember where he read that or what proof actually exists. I tell him “precise speech”. It’s what makes things (news) real.

Violence…by Men

The last 24 hours has had an over-sized impact on me. No, I’m not talking about just the latest shootings.

My 17 year old miniature pinscher has been fading for over a year now and on Friday her kidneys had shut down. As always, making the decision to thwart nature and let the vet handle it was traumatic. This time was worse because it is obvious that we can no longer physically or financially manage pets. It is the end of a lifetime of pet ownership.

Saturday morning was rocky with both of us trying to keep it together and, for some reason, something in the news started me thinking about violence in general. A memory surfaced from earlier in the week where a man of some age, a white man, stated that the world used to be great. One of the last things he mentioned in his pontification was about school yard fights. He was very circumspect in his word choice but what he said was that problems were taken care of outside after school. In other words, fighting was okay and it solved problems.

Now I was raised in a family with socieatal aspirations – we were kinda told we were like southern aristocracy which is silly cause we’re just talking farmers for heavens sake. But my mother and grandmother were all about acting like a lady and denying anger. Mother would tell me to not be angry – especially at others – to feel sorry for those who angered me. I never saw a physical fight between females and did not witness any of the guy fights except those brief scuffles that broke at school. Those fights ended quickly when teachers intervened and students were sometimes suspended for those actions.

My childhood did include playing war – influenced by glorious WWII movies. We set up skirmish lines and threw dirt clods. My brother was my best friend and I was a gasp! tomboy. I played alongside the neighborhood boys on the football and baseball teams. I never saw any fighting or even arguing until we had a new family to move into the neighborhood later on.

That family of bullies, mother and children, were a sudden look at meanness and violence that my mom and the school authorities really didn’t cope with very well. The bullying was pretty much considered to be a non-school issue even when it occurred at school. My brother’s new watch was never retrieved from that neighbor.

Fast forward to high school when I visited my first cousins in Ohio. The girls talked about school fights – with other girls. I was aghast.

At under 5′ 3″ and 110 pounds, I was never going to be a physcial person without a lot of martial arts training so of course I learned to manage life without resorting to hurting someone else. I hurt myself often enough while trying to manage my natural anger; I even cracked my hand by beating on the steering wheel once while angry with my son. It never occurred to me that harming anyone else was okay under any circumstances.

But men are raised differently. Rough physical sports, one on one or team, are considered to be part of being a man. My husband wasn’t raised that way but he was captured by martial arts early and has spent a lifetime in physical activity and training. He has never deliberately hurt someone in anger. He could kill a person easily but has always chose to avoid conflict. An oppositional reaction to the violent society of men.

In the mail on Saturday, the Discover magazine arrived with blaring headlines of Gun Violence! Sighing, I chose to go to a movie to get away from the doggie sorrow and those headlines. We ended up at the last Fast & Furious sequel or I really hope it’s the last. I liked the early ones but this one wasn’t just different, but more along in the line of another violent comic book story with super heroes. Again, written to appeal to the 15 year old brain that every man seems to keep inside, including my non-violent husband.

In my extreme boredom during the movie, I actually pulled out my phone (a first) to light upon the news of the shooting in El Paso. We were watching the same violence on the screen of an air-conditioned movie theater in Augusta, Maine.

My husband is a former cop, a shootist, hunter and holder of at least 13 black belts. My biggest challenge during our move last year was to get him to reduce the amount of ammo and guns to help pay for the move and reduce the weight. He’s been a gun lover since his early teens and grew up in a gun society of Georgia as we all did back then.

But all this emphasis on “gun violence” is driving us to distraction. One of the worst things about America today is how we just want to blame someone else for what goes wrong. Children are too often not raised to accept responsibility for their actions and blaming guns for acts committed by humans is a sign of modern insanity to us.

That gun did not shoot itself. That gun is a tool of law enforcement and the military. That gun is a source of joy and contentment for shootists and hobbyists. That gun represents self-protection for me even though I really don’t like it. That gun did not commit that crime nor did it cajole that shooter into killing masses of people.

The guilty party is nearly always white and male (and relatively young). Why in the world are we not talking about male violence? Men kill women in this country at extremely high rates. We even had a local husband murder his wife only blocks away from us some months ago. The red flag laws are designed to get guns, those tools, out of the hands of others who may be contemplating violence. We approve of those laws.

If they aren’t killing their wives or girlfriends, they are killing other men in acts of rage in Walmart parking lots like last weekend in Auburn, Maine. Or they are running with gangs and terrorizing neighborhoods. Male violence.

The commonality is not just guns but it is men. Those men who were taught to resolve problems behind the school house, mano o mano. Those men who are driving the millions of sales of comic book derived, horribly violent movies. Those men who are standing in the crowds at their son’s games, screaming obscenities and threatening violence in public. That’s not just a lack of civility but speaks to me of a break down of society.

Why are we blaming the guns? What is it that makes people think the guns are the root of the problem?

Incidences in Japan come to my attention this year. Japan has strict gun laws. I lived there for nearly 3 years and I can attest to the differences in their society and ours. For one it is almost completely homogeneous. It is also very patriarchal. It is not a society I would choose to live in. They have greatly reduced gun deaths through gun control. (This article describes this in detail.)

But they have problems, too. Just last month a man set fire to a anime studio staffed by mostly women, killing 33 people. Knife attacks have also resulted in multiple deaths. So yes, reduced deaths from guns. Yay! But the killing still goes on.

The commonality is men with a grievance (usually imagined). Today’s immigration and racism accusations and debates is no question triggering these men to commit violence. Their tools of choice are guns. Even in the United States, women are still more likely to poison their victims. They aren’t shooting up malls.

So why? What is wrong with our society? It’s not guns. Guns were a major part of life for southern and rural men for many decades. You may not remember the gun racks on the pickup trucks but I certainly do. The guys weren’t any nicer then, they were just more confident in their place in society: at the top.

In my household, instead of demanding new gun laws (well, actually I have a different idea of what gun laws need to be enacted but that’s another discussion), we are asking why? Why did that young man feel he had the right to take lives indiscriminately? The answer is either grudges at work, towards a particular woman, towards women in general, towards people of color, other religions or countries of origin.

They are feeling emboldened. Part of it is the vicious news cycle from all media outlets and social media. Part of it is the breakdown of marriage and intact families (but not for the reasons you may ascribe to). Part of it is simply just the fact that all of the above blames everything but the individual for what’s wrong.

Stop blaming guns for the actions of these men. Stop screaming about gun control. Instead let’s negotiate on gun control; let’s enact some federal laws to streamline and pull states into some sort of conformity. Let’s do some reasonable things about guns.

But please, let’s talk about our men, the failure of our society to prepare these men for full adulthood, the failure of the ruling men to acknowledge we have a problem. The ERA still languishes, women are still fighting for equality, the disabled are still shunned and even mocked on a national stage, people of color are still fighting racism which is entrenched in our society if not in our minds.

In the end one of the most horrific deaths I’ve come close to was in Charlottesville where I lived til last year. I didn’t know her personally but folks I know did. Heather Heyer died because a man lost his temper and drove into a crowd. He didn’t need a gun. He wasn’t carrying a gun. He was attending a right wing rally to promote white male supremacy.

So let’s talk. Let’s stop screaming. Let’s look at the source of the problems. That begins on the playground and back behind the school house.