Monday, May 8, 2023
12:25 PM

I have a wonderful visiting nurse who used to make me her first stop; she’d be here close to 9:00 am and then I could finally shower after she’d remove my bandages, and then put me back together. She was so wonderful that she received a promotion and is now working in an “office” doing training. Though she was kind enough to keep me on as a patient in the field, I have to wait much longer for her to arrive. Hours longer. And, after weekends, when she has bandaged me up on a Friday and it has to last until Monday, it often ends up not being pretty in any sense of the word. Sometimes I have a bandage emergency and I have to wait, or an aide tries to patch it up. That is not always a viable solution but is better than nothing. It’s damn uncomfortable.

The fat-harvest site (for reconstruction) is at the top of my thigh and it impacts everything: walking, sitting on the throne, bending, picking things up, putting my shoes on … When the incision burst open a few weeks after I got home, the wound was an opening the size of a baseball. Picture that! Now, after a wound vac and a new special bandage, it is the size of a ping pong ball. Picture that again!

You want me to get even more graphic? It stinks. Literally. I feel like I am walking around in a dirty diaper and the odor wafts up from my clothes and even my bedding, in fact, it even keeps me up at night, and yet no one else detects it.

I never would have believed the healing process would be this long or this hard. Or the loss of dignity so great.

[At 1:00 PM the nurse arrived. I am finally feeling human again. The wound is healing nicely].

Let me map it out a little more: I am not driving, those days, I have decided, are over. The aide finished the last of the milk. She doesn’t drive. I can’t walk to the nearest store, nor does the aide feel comfortable walking alone in my neighborhood (which pains me for other reasons); nor can I order just a quart of milk and have it appear at the door. This has been my life for a while. Vulnerability. The feeling of neediness. And neediness in terms of basic need.

What weighs on me is this long list of stuff that I can’t get resolved and that has become my full-time job:

1. After a year, I am still chasing after my husband’s nursing home to supply the papers I need to put in a Catastrophic claim;
2. Collecting all the paperwork I need to put in my own Catastrophic claim and realizing I will never regain the tremendous amount of money I have spent on aides;
3. Collecting all the paperwork to file a claim with my union, same realization as #2;
4. The water in the basement problem: after all the waterproofing and big bucks I have thrown at it over the years, has reappeared. In one small spot… tiles, plasterboard and wallpaper ruined. No inkling from where it is coming. Found a guy who thinks, and I agree, that we need to open the wall and find a joint crack, but the opening and remediation might extend an entire wall;
5. Finally, the biggie: the city of New York has sold out 250,000 elderly retirees: workers from every union were duped by the mayor and the union heads starting in 2014 to save the city money on the backs of people who worked for decades and  who have paid for this insurance, who relied on it and assumed it would always be there. The city wants to shove us under the bus and give us an Advantage plan, which, if we were physically shoved under the bus, would likely not pay for the healthcare we need. Have no fear — you don’t mess with the kids from the ’60s. There is a protest, there are lawyers and new leaders who have risen to the top of the pile, and in true Joan of Arc fashion, are leading the brigade. We ain’t gonna take it. Would YOU want a health plan you didn’t ask for, run and owned by CVS? At this stage of life, none of us who have served the city should be going through this. If anything, the city should honor us for making it great; for teaching children, attending to the sick, for putting out fires, for picking us up in ambulances, for working in universities, providing services in over one hundred unions. We never, never thought this could happen. And at this stage of life, I never thought I might have to be shopping around for health insurance because I am surely not going to abide by what the city is offering.

So, this, all of this, is what keeps me up at night, this is what keeps me on the phone and on the computer, my multi-faceted job in my new multi-faceted life with the hole in my leg the size of a ping pong ball.

Listen, I am not a victim, I am rather, one angry person, one of many, I am sure, in many ways, who should not have to be going through any of this. But I am, and I am doing the best I can to get things together, to make sense of it all while on my own; to be grateful for the nurse who comes even if she is late, to stay positive in the face of adversity and to believe that as my mother would say, “it all works out in the end.”

But, there are times the end is never in sight.

I pity the very elderly who are not tech savvy or who are very ill and have no idea what is going on.

There are things that are big deals that can be life-changing, and some how the little things are just as important.

Like that container of milk.

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