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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?

Published inDisabilityOpinions