When you’re not the “right” kind of poor and disabled

August 7, 2019

I just learned about a program for low income and disabled folks to get internet access for $10 per month from Comcast. Too bad I wasn’t eligible, despite meeting all of the criteria. You see, I’m not the “right” kind of disabled and poor.

I looked at the list of requirements for the program. Despite only needing to check off one box, I could check off many: I am on Medicaid, getting SNAP (food stamps), on Section 8 (a housing voucher), and in the Low Income Home Energy Assistance Program (for help paying utilities.) But I’m not eligible. Why? Because I’m not a new customer. You see, it doesn’t matter how little money you have coming in, if you aren’t new to the internet, then you aren’t eligible for this program. Comcast is the only option for internet service where I live and the least expensive plan is $79 per month. It bothers me when I pay my bills every month, especially since the service I had in my last apartment was better quality and only $45. Still, it’s the only choice for internet here, and I consider internet a necessity for as long as I can afford it. Lowering it by $65 per month (accounting for taxes and fees on the new plan) would make a huge difference, though!

I’m not the “right” kind of poor and disabled for a lot of government and other programs either, though I have managed to get quite a few accommodations, for which I am very grateful.

I am so not the “right” kind of disabled according to a lot of people out there. After all, I can mostly walk without any assistive devices, and that’s their only consideration. I mostly look healthy, especially if you don’t look too closely. That’s all that “counts,” as far as they are concerned.

But that’s not the reality. The reality is that I spent all day feeling like crap, not even managing to get dressed until 2pm, because I had to be out of the house most of the previous day for medical tests. The tests were easy, but the travel too and from, plus being alert and interactive, was just too much for me. I came home exhausted and in a ton of pain, and had to spend the next day recovering.

The reality is that I have a lot of money in the bank, and I am so grateful for that. But I also know that the only reason my totals appear to go up is because my investments have gone up. It’s not real. When the market turns, as it always does, those numbers will go way down, and I won’t have any job income to offset the fall. I am thankful for my social security payments, but they don’t cover enough.

For a minute last summer, my benefits covered all of my basic expenses, which meant if I earned a little money from dogsitting or something, I could use it to go out to eat or buy clothes, and not have to take money out of savings. I would need those savings for a bigger expense, like to replace my car or to move, but for everyday things, I was ok. And then a couple months later I lost my food stamps. I had to start taking an expensive medication that insurance didn’t cover. And once again, for basic monthly expenses, I was taking money out of savings.

My savings are my safety net, but I know they won’t last forever, especially if I have to take out money just to cover the basics. So no, I’m not really poor in the typical sense. Yes, there are people who need the help more than I do right now. On the other hand, without these benefits I receive, I would quickly run through my savings. Then I would be in a dire situation, because the benefits wouldn’t cover all of my basic expenses and I would no longer have savings to make up the difference. Then what would I do?

And that is the crux of the issue with the “right” kind of poor and disabled. By the time we meet that definition, things have deteriorated to the point where the help no longer helps the way it would have earlier on. For example, one day I will need knee replacement surgery. Right now I do physical therapy and wear knee braces in order to put off the need for the surgery. If the problem was caught sooner, I could have avoided years of pain. So now I could ignore my exercises and forget the knee braces and get the surgery right away, knowing that it will have to be repeated every decade or so. Or I can use the supports I have now and put off the surgery, in the hopes that I will only need to have it done a couple of times throughout the rest of my life. I choose the latter. But imagine if I didn’t have a choice. Imagine if my only option was to repeatedly have the surgery. That’s what these programs want. They want us to get the point where we no longer have better options, and then maybe they will help us.

I am lucky. I have the option to keep pulling money out of savings to pay for basics. These days, my basics are rent, utilities, groceries, medical expenses, gas, car insurance, and car maintenance. Everything else is an extra, including a meal out, a gift for a friend or relative, or a new sweater. I get help for some of those necessities, like rent, utilities, and groceries. Still, my benefits only go so far, and my medical expenses are high, since a lot isn’t covered by insurance. Without savings, I would be choosing which of those necessities to get rid of and frankly, I don’t see anything on that list that I’m willing to live without (the car is necessary where I live now and even before, when I lived near public transportation, I was often too sick or in too much pain to take it and would have to drive instead.)

So screw the folks who only want to help the “right” kind of poor and disabled people. We all deserve help, and these programs should be available to those who need them.

I want to add a final, important note. I doubted myself. Maybe I was being too harsh? Maybe it’s good to limit these programs to only the most needy among us? Maybe I’m being selfish? Self doubt is a big problem for a lot of people, and it comes up a lot for folks with chronic illness. Personally, I was told for years that I wasn’t “sick enough” to get help, and that ended up making me a lot sicker. If only I had been diagnosed and treated a decade earlier, I might not be disabled now. I might be able to work full time, and these money issues wouldn’t be on my radar. So yes, I still doubt my needs. And then, while I wasn’t sure if I should hit “publish” I went over to Facebook, and saw a bunch of comments on a post I had made about this program. Several folks were really excited to see it, then disappointed to learn they weren’t eligible because they already had internet through Comcast. Those who were able were already talking about switching to another provider, with the plan to switch back in three months in order to get on this program. Because yes, there are people with internet access who have health and money issues and who need the help. We need help, not gatekeeping. This is a federal program, and should be open to everyone. And that is what made me decide to publish this post after all.

What do you think? Should programs like this be available to everyone who is low income, even if they have internet access already? Are the restrictions reasonable or bullshit? Please comment below, because I would love to know what you think.


Acknowledging the pressure

July 23, 2019

“You’re feeling a lot of pressure.” When my therapist said those words, everything clicked into place. Yes! That’s what I was feeling and unable to acknowledge for myself, much less express to her, but she figured it out. And suddenly, it all made sense.

It’s hard enough to feel ill all of the time, but I also feel responsible for how I address my illnesses. I go to 5 different doctors and get 6 different opinions. I do my own research and figure out a course of action, but no doctor will order the tests I want or the prescription that I feel will help. I try to sort through all of the possibilities, the research, the unknowns, the assumptions, the inconclusive data. I talk to experts and I ask questions of other patients. I look at as many resources as I can. But at the end of the day, it’s up to me, and me alone, to decide what to do.

That’s a lot of pressure!

I want to feel better. I want to feel as well as possible. I don’t know what that is. Would that mean I was well enough to walk 3 miles? To finally get and care for the dog I’ve always wanted? To attend a wedding without having to leave early? To go out 3 nights in a row without becoming so ill that I can’t function for days afterwards? What is a reasonable goal? I don’t know. No one knows. But still, I aim to feel better, whatever that might be.

And as I aim to feel better, I must make myriad decisions. It’s scary and overwhelming. I have a bit one coming up in a day and a half and yes, I am overwhelmed and scared. I have a lot of research to do between now and then. I worry that my doctor might not agree with the approach I want to take or vice versa. I could be wrong. I won’t know until I try this new medication. This is my health, my one and only body, my life. If I get this wrong, there are no do-overs. The result would be damage that is likely irreversible. On the other hand, doing nothing will also result in irreversible damage, which means I have to do something. And I am the only person who can ultimately decide what that something will be.

So yeah, that’s a shit-ton of pressure. And I hate it. At least now I recognize it for what it is. I am learning to sit with my feelings. Still, the pressure is intense and it’s real. This is my life that I’m deciding about. I hope I make choices that improve it.


Feeling a mysterious new contradiction

June 19, 2019

Last night I went to a Meetup group for the first time in 7 or 8 months. The folks there greeted me warmly and asked what I had been up to, and why I hadn’t been around. And the thing is, I found it hard to answer, even to myself.

I had been thinking about that before I went. At first, I was busy. Then I didn’t feel well. Then I felt better, but I was trying to catch up from not feeling well. It was never a priority – yes, there were times I could have gone but chose not to. But also, lately I have either been feeling too ill to go out, or else I’m feeling pretty good and I’m using that opportunity to catch up on household chores, fun projects, and spending time with close family and friends.

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Most recently, the surprising thing is that for the past month or so, I have been feeling so much better, while at the same time I feel that I am struggling more than usual. This is new to me, and hard to wrap my head around, much less describe to someone else. The closest I have come so far is a battery metaphor, since this is mostly related to energy and fatigue (though other symptoms play a role, too.) My battery never gets to 100% anymore, and probably never will. But lately I feel like I struggle to get my battery as high as it had been. If prior to the past month it sometimes got to 65% on good days, now it never gets above 50%.

But here’s the surprising part: it goes down more slowly. Before, it wouldn’t take much for me to go from 65% to 50% to 40%, but lately I feel like I can do a lot more at 50% before I drop down to 40% or lower. It’s an odd feeling. I’m more tired on my best days, but I can do more because I stay at 50% for a lot longer.

I want to know what this means. Is it a sign of improvement or a sign of deterioration? I believe it has to do with going off of an adrenal supplement. The goal was to stop the supplement for 2 weeks so I could take a test, then resume it. The first few days were horrible, but then I actually started to feel better. I had to put off the test for an extra week because of scheduling issues, and by then, I wanted to see what would happen. After all, I really did feel better than I had in a while. Now it’s been 5 weeks and I am anxiously waiting for the test results. What will they show? Will I need to go back on the supplement? Will I instead need the prescription that we were contemplating? Or is my body better off on its own? I am figuratively chewing my fingernails in anticipation.

My body is a series of mysteries. Sometimes there are answers, but far too often I never find out what is going on. I have learned to accept that for the less pressing issues (though sometimes I later find out they were more important than I had realized) but since fatigue has been my most disabling symptom for many years, this is tantalizingly close. I can almost feel the answer to the mystery dangling in front of me, but I can’t quite reach it. I am aching to know, though, if I am improving or deteriorating. Could I be on the verge of a breakthrough? Or is it the edge of a downward slide? Maybe the iron infusion that I had dreaded is having an affect? My fear is that the test won’t give conclusive results, and I won’t know why I feel this way or how to proceed. I should find out any day now, and until then all I can do is wait.

I see doctors constantly, and when they ask how I have been, it is almost always hard to explain. But now the answer is that I feel both better and worse at the same time. I hope they can help nudge towards more of the better.

 


Yes, it’s a choice

June 11, 2019

One thing my therapist is helping me realize is that many of the things I do for my health are actually choices on my part. I often feel trapped, like I have no options, but that’s actually not true.

Take the party I went to recently. I put on my sexy new dress: tight, red, showing cleavage, and making me look hot. This is the sexiest dress I’ve owned, and I didn’t want to ruin the effect by wearing my big, bulky knee braces. So I made a choice: I didn’t wear them.

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The dress I wore with the knee braces I didn’t

I wear those knee braces every time I leave the house, but since I knew I wouldn’t be doing much walking, what if this time I didn’t? What’s the worst that would happen?

Well, long term I could do permanent damage by wearing away cartilage, but that wouldn’t be an issue for one evening. I would be in pain, but maybe that would be ok? I know the pain, and it would be manageable. I should still be able to drive home, which is the deal-breaker for me.

So I did it. I brought the braces with me, just in case, but I left them in the car. I wore cute sandals with my orthodics in them. The dress calls for heels, but I knew that level of pain wouldn’t be worthwhile. I’m better off in sneakers, but really didn’t want to do that. I wanted to look good, damn it!

I was in a lot of pain for the first part of the party. Eventually, though, I found a good balance between sitting and standing. It meant sometimes sitting when I would rather stand, but that happens a lot even when I wear the knee braces.

But it also meant that I felt good about the way I looked. I kept forgetting that I was “passing” as healthy, so when I asked a guy out on a date and he said yes, he didn’t know about my health issues. When I showed up to our date in a cute dress and knee braces, I had to explain. I wasn’t doing it to pass, though. I wasn’t trying to hide my health problems. No, I was simply trying to look good in my new dress. And what’s so bad about that?

It is a privilege that I was able to make that choice. I know that some day I might not be able to. But somewhere in the midst of everything, I realized something important: I wasn’t simply choosing to not wear my knee braces. I was choosing to boost my emotional health at the cost of my physical health. That was the true choice that I made.

Within two days my knee pain levels had returned to normal, but the memory of how I felt all dressed up has stayed with me. It’s spring now, and even though I wear skirts and dresses almost every day, I will be wearing my knee braces whenever I go out. That, too, is a choice that I am making. The thing I have to remember, though, is that it is a choice. I am choosing whether or not to do the thing that is best for my physical health. And occasionally, it best not to do that thing, and to give my mental health a boost instead.