Next Thursday they will pulverize the cataract on my right eye, and replace it with a nice new lens which will, they tell me, allow me to see clearly again. They say it will seem like a miraculous change, from my current status as officially legally blind.
On one hand I am astounded at how much one CAN still see when considered legally blind. But then, I can hardly know what I am not seeing, can I? It is really scary when you honestly THINK you are still seeing well enough to drive (and are still driving,) only to have the specialist say “You’re not driving, are you? You are legally blind!”
Yes, as responsible a driver as I am, and as carefully as I was monitoring my own known condition, I was literally shocked that my sight had worsened to the point of legal blindness. For two days, my knees literally shook at the thought of the harm I could have caused while honestly believing I was seeing well enough to drive. I haven’t been behind the wheel since.
Makes me wonder how many other people are out there driving around, peering through cataracts as bad as mine are, and not realizing it, because they come on so slowly you adjust to limited vision without realizing how bad it is. Since MANY people begin to develop these things after age 40, it’s something to stay aware of. It is also not a great idea, (as I was told), to wait till they become really bad, to have the surgery. In any case, whether they tell you to you not, go back in and get that vision checked often, once diagnosed.
Now let me tell you what was involved for me in arranging things so I could afford to even have this done! The process began last February when I finally realized I had to get these eyes fixed. Surgery will be Oct 19th.
It took me that long to a) find a way to pay the 20% balance Medicare won’t cover, and b) find an eye surgeon who was capable of treating me like a worthwhile human being!
I am 66 and live on SS disability of under 1000.00 a month, just enough to make me NOT eligible for state Medical Assistance, which would cover the 20% Medicare doesn’t. Twenty percent of hospital/Dr. charges is most definitely NOT in my budget.
Fortunately, I am a retired RN who has done case management, so in time, on my own, I unearthed a little known program called Senior Partners Care. This is a partnership between the Minnesota Senior Federation and Healtheast Hospital Corp here in the Twin Cities. The agreement is that certain HealthEast hospitals and clinics will settle for what Medicare pays, and not charge anymore than that. If you are poor enough, and over 65, you may qualify for this and I did. It does mean only being able to use certain clinics and hospitals, but everything IS covered, and you don’t end up in debt clear up to your cataracts!
The interesting part of this is that the clinic I had been using all along, IS a member of this agreement, but who knew ?! They sure didn’t tell me, and had been charging me the full 20% of my bill that Medicare doesn’t cover. If I missed one month payment, they were on the phone.
What this meant, of course, was I had to decline most of what my doctor had been recommending for me in terms of diagnostic tests and treatments, because I could not afford that 20% co pay. Hmmm. Maybe one way to keep the poor from over utilizing helpful corporate based programs like this is to just not tell people about them? (Oops, sorry, my cynic slipped out there for a moment!)
Ok. Funding taken care of, the next step was making an appointment with one of their approved eye clinics and eye surgeons. Six weeks wait to get in for initial appointment. I was grateful I had taken a witness with me, who can validate that this “doctor” had the personality of a constipated barracuda, and literally had me in tears with her nasty, authoritarian, demeaning manner. (I do suffer PTSD about having ANY surgery, due to some pretty traumatic past experiences, and telling her this did not soften her one BIT.)
Well, I’d sooner stay blind that let that woman near my eyes with anything sharp, so I called to get a second opinion from another doctor there. Another four week wait to get in. Like the first one, he agreed surgery was badly needed as soon as possible. That, however, turned out to be two and a half months later, when they could first get me in. Very busy clinic, he said. Sure must be. This surgery takes all of about 20 minutes start to finish, and they have what, 10 eye specialists and their own surgery center.
Call me a cynic if you will, but I highly doubt any insured patient has to sit around legally blind for what, seven months, in order to get cataract surgery.
I also know that most older people do not have the case management skills or the assertiveness I have to fall back on to help them beat the bushes to get the essential services they need.
It has not been easy to switch my life role around from being the RN Case Manager helping others, to being the client who NEEDS services now. Not. At. All.
But given time, I am coming to see the power I have in this role, that I never had in my professional role. For my whole career, I had to watch the sick and vulnerable pay the ultimate price for the failures of the helping systems. No matter how I ranted and raged and fought on their behalf, there was little I could actually change: they were the ones who paid the price for a sick, inefficient and often corrupt health care system.
But NOW I am the CLIENT. The kind of client most of system people are most certainly not used to dealing with. I know the game, inside and out.
I am not a grateful, sweetly compliant old woman who thinks Doctors are gods. I will NOT swallow the familiar “system brew” fed to the elderly that consists of condescending babble and various forms of manipulation and intimidation the system hands out to cover it’s own backside and inefficiency.
I’ve learned, at last, how to channel all those years of frustration and anger into a very determined and highly effective communication style that will not allow for bullshit for answers from any of them. “I understand you cannot answer my question. Thank you for trying. Now please connect me with your supervisor. Not in? When is she expected? Connect me to her voice mail, please.” Then I call again. And again.
There have been many times when the outcome has been very good, once we get past all the BS and defensiveness on the part of system employees who truly are powerless to change it all themselves and are often on the ragged edge of their own case of system burnout. It is amazing how their manner can shift, once they get a clue that I DO understand how hard their job is. People in human services are so often literally starved for a kind and validating word from someone. If you can enlist these kinds as a partner, they will work hard to wade through the jungle with you.
But then you do have the dictator types who have become enthralled with their own puny piece of power over other people lives, with whom only a relentless offense can be effective. That’s what I gladly unleash my tried and true war strategies that I GET to use now, as a CLIENT!
“Yes, I understand your problem with delivery of this service. However, what I need to know, specifically, is how and when this is going to be resolved, so I will be calling your Director to discuss this further.” So far, there has only been one case where I had to threaten to go to the press and that sure cleared that one up in short order!
Can you tell I am now having a very good time engaged in my own kind of activism? It makes up for all the other kinds I can no longer engage in, and lets me feel like I am a vital part of creating needed change, one small bit at a time, from right here in the middle of my own life material. I know I am not speaking up just for me, but for the thousand and thousands of voiceless others I have cared for, and who are all around me everywhere now.
My next venture, once I can see again, may be to put together a series of Wellness Empowerment Classes for Elders (or anyone, for that matter) that will include a strong component of how to communicate assertively and effectively with the health care system.
This is such a hard time to be an authentic American who truly cares for the common good. It is so easy for me to fall prey to hopelessness, unless I can remember this: to do what I can do, from where I am, to make my own small corner of life a little bit better in some way they might help others also.
I find comfort in the thought that if we can each create small bits of positive change and hope in our own smaller spaces, eventually, their light will blend and become a stronger light that others will be able to see, and wish to help grow even brighter.
In any case, it makes me feel better than just sitting here sticking pins into my George Bush and Dick Cheney dolls. (Ok ok, so there are still times when only that will do!)
SEE you soon!