Wednesday, June 10, 2015

#ROW80 – MIDWEEK CHECK-IN – WHERE HAVE I BEEN AND WHERE I AM GOING

I have dreaded writing a post such as this for a very long time, but I knew it would one day become inevitable. The last post I wrote, “Let the Cry Out” was prescient indeed, I just did not know that the end would come so quickly for my life partner, Jim. For me to even approach writing this has taken me down my usual paths of convoluted logic, which just seemed like more nonsense, because the loss in my life has been so great. I don't want to write a “start at the beginning, where we met” and end with his death. Anyone who has read my posts from the early days will know the story. To wit, and the short version is this: we met in a homeless shelter. We were both scared and had no idea what it meant to be “homeless”. He had also been in prison. He really never belonged there, and I can say with absolute certainty that he was one of the finest people I have ever known. He was certainly one of the funniest.


He was not only funny, but indulgent of me. I bet I took his picture 40 times, just to get him to smile. I accused him of looking like a "wooden Indian" at times during picture-taking, because he didn't want to smile, but he had the best smile in the world! The following picture shows what had me so amused.

When I was finally deemed by a battery of doctors to be “Disabled” or whatever – in record time; 5 months. It is generally a 2 to 6-year process – , I was put on “Retirement”, which is all kind of a hoot, – eye surgeries; not fixable, essential tremor; inherited, but treatable (“I Don't Need No Rockin' Chair, 'Cause I'm Rockin' On Mah Own) – now in retrospect, I have learned how to really take care of my various annoyances and not a one of them will kill me. I'm good for at least another 25 to 30 years, which is the normal Wallace lifespan. Wonderful!


I wasn't aware chickens had paws, but according to the price-thingy, they did. Or possibly, the store was afraid that "paws" somehow appealed more to the pallet than "claws" or "feet". Me? I'da stuck with "pieces", although, then, people would have thought "hmmm, chicken assholes."

But going through the death of a loved one at home and up close and personal taught me a lot about myself and about acceptance. I'm the type of person that if you say “no” to me, I'm going to turn right around and do whatever that “no” is. Whether it's as trivial, as “no, you shouldn't wear red, because you're a redhead”, which my mother told me years ago, and which I still totally do, or a physical therapist who said “no, I don't believe you're going to walk again,” or “no, it doesn't look like you're going to play the viola with those tremors, or at least have it sound very good”, I'm going to shove that bit of negativity right in your face and prove you wrong every time. That's what I do. My mother was very much like that and she suffered horribly from emphysema; had something like 13% of her lung function, when she was diagnosed at age 57 or 58 and went on the run, her way. She was 70 when she died, toting a portable oxygen canister and after a radical new surgery that at the time was still experimental, but she had several good years before she died. She lived life on her terms and went out when the fun stopped.

I have COPD as I did smoke for many years, but I quit several years ago. My COPD is inherited and it's on one of the genetic markers that showed up on a blood test. I know this, because I got into my chart on the computer at the hospital (they sign you up, if you're interested and I understand values and what they mean) and read my test results. I do clinical research for my COPD and I now have the lungs of a person in the age range for me. I walk, can run and can get into all sorts of mischief and seldom have a bad day.

The same sort of thing happened when my essential tremor presented itself overtly and I could no longer play the viola. That was a huge blow and it wasn't just a physical blow, it was part of my own mental illness. Anyone who has a motor disorder is bound to have some kind of mental distress, depression, or be bipolar. It's just part of the package. So, here I was with this... mess that I didn't want, couldn't deal with and I was legally blind – well, I still am, that can't be fixed – to boot and I was barely 50.

These things take many years to become overt and I had suffered from depression from the age of 9. Lots of people do; for whatever reason, it's just the terms of the condition that we call “life”. What we all have to learn is how to negotiate through these things and come to terms with our own feelings and our own pasts. I'm a fighter, no doubt, both literally and figuratively speaking. I am back, stronger than I ever was and playing and in a good place.

But, not everyone rises to meet their own challenges and we cannot fault them for that. A younger, wiser friend who has dealt with childhood cancer three times says 'the fault lies in their stars”, but she had just finished watching that movie. However, I tend to believe her. We may get knocked back on our pins, but we generally come roaring back, when we have the heart of a fighter; it's why I love boxing. But what we may perceive to be someone else's shortcomings may be just the only way they know how to cope and it's up to us to either choose to accept it, or move on; we certainly cannot denigrate or make them feel smaller for those qualities. They have other strengths that we do not. In Jim's case, because he had been so ill for the last two to two-and-a-half years, he was ready to die. The fun had stopped for him. He was in constant pain, and walking was becoming nearly impossible. He had no real hobbies and had worked all of his life. We spent a lot of time talking and I would cook for him and we had friends visit, but he was really ready to move on. He knew too, that I was in much better shape than when we first met, and that I would be okay.


I fought that bitch-idea of his like I fought everything else, because he was worth having in my life, and all I did was make us both miserable; I was being selfish. After one particularly grueling evening, I knew I had to change. He was not going to get better. He did not want to go back to the hospital, he did not want to try and go to any Physical Therapy and he was just tired of living. So, I made my peace with that knowledge and accepted it, and decided that, at the very least, the best I could do for him, was to love him, and care for him here at home. And, while I was at it, I'd try to eke out a little more fun for him; we still had our laughs, right up until the day he slipped into his final coma, on Mother's Day, May 10th, 2015, thirteen years to the day I cremated my own mother. 

Hospice was already there, from April 14th on, and the nurses were absolutely wonderful. They worked so very hard to keep things positive and I learned so much from them, in terms of care-giving. As long as Jim was comfortable and at ease, it was great. So, he spent his last month in Hospice here at home. He was pretty cheerful, and aware almost up until the end. On the Sunday before he died, when he slipped into that coma. We had been saying our “I love yous” and good-byes for weeks, a krillion times over.



We'd just look at each other; his eyes bluer than mine; so blue, with dark lashes and still so aware. Mine were probably red, and teary; I cried a lot; but that was okay. He'd say some of the oddest things, sometimes. He'd look at me, and murmur, “Mary, you're such a pretty woman, so pretty. . .” after I'd been running all over the house for a week in one of his t-shirts and jeans, with my hair – again grown out – in a clip, looking like a hag, and he told me once, “I'm sitting here, facing east, the world turned 'round. . .”, which is very odd, as we had helped him onto the porch and it was facing due west, and we were watching the sun set, but people of certain faiths are buried facing east to see God. He also heard dogs barking, where there were none, which is telling. Dogs are Chthonic creatures in Celtic mysticism, but Jim didn't know that, as he was not particularly well-read, when it came to Mythology. He liked Zane Grey.



It was a positive experience, and I'm glad he was home here. But, I'd give anything to have him back. I didn't get all the time I think I should have had with him, but then, does any of us truly get what we want? I did learn though, that there are limits to even what I can do. I can't stave off death, much as I wanted to do so. Before he fell into his final coma, he lost his ability to speak. We could still look at one another, and say so much with our eyes. I remember telling him when we knew that we loved one another, that I felt like it was my job to let him know how much he was loved. I hope I succeeded; he took care of me when I was ill and he was my mainstay for several years. He was a keeper and he'll always be close to me.

But, as one door closes, others open, and it is time to move on. It is time to take what I've learned and done here over the past decade and leave this continent in 2016. After this following symphony season, I plan to take my act on the road. I am no longer a part of this country and I have not felt that I belong here for a long time. As much as I enjoy reporting on the idiocies and knaveries of not only Nebraska Avenue, 33605, 33602 and beyond, the hypocrisies, both in the micro and the macro are completely and utterly stultifying. Think Duggar, think Ferguson and hundreds of others.

While the Hospice nurses, and care-givers were wonderful, the Case-workers, social-workers and nabobs were anything but and this is a criticism across the board. Anyone in Middle Management and above in anything involved in DCF, Medicare, Medicaid, Adoption is a blight in the landscape. I talked to one parasite, when I had no clear agenda as to what was going to happen to Jim, by the name of Karen Masters of Lifepath. She kept trying to put me off, over the phone, and said she had a meeting with some high mucky-mucks, and that I would have to wait. I said to this woman, “Unless you are a member of the U. N. and are deciding the fate of the free world, you better get your ass here TOMORROW, 8 A. M. sharp, or get me your head honcho!”

She showed up here at 8:15 am with a phone glued to her ear. I was in no mood. I yellled at her to hang it up. All I needed was to hear her tell me that they were here to ease my man into the Afterlife, and to tell me what that weird box of chemicals was in my fridge. That was it. But, they don't want to tell you that and they patronize and talk to you like children. Even then, her other job, getting the Coroner here on a prompt schedule wasn't something she could manage either. Social-workers, whatever they call themselves by and large, have little skin in the game. Once they've done they're little internships and get their papers, never deign to do real human work again. They should all be killed. I loathe every one of them.

This one, though, apparently had time to have a little tiff with two of the hardest-working RNs in MY house – over one of the RN's hair – , until I just gave her a look and she finally left. They could have worn short-shorts and done their jobs. This is probably what made her FORGET to call the coroner later that week when Jim did pass and our mailman (NOT the guy who flew his ultralight up on the White House lawn for whatever reason – although it DID sound like our mailman, Tom) came in and saw Jim in his final repose. Lord help us all.

A quick diversion here – this is kind of why my life is why it's the way it is – Tom, our mailman, is a Viet Nam Veteran and he works for the U. S. Government and he does constant battle with his employers. He reads my blog, so I'm probably going to get everyone else's mail, but I already do anyway, because Tom has “causes”. Tom looks like the Wizard Gandalf from LOTR, which makes it sound like Tom has “issues”, but so do I, so who am go quibble? Tom, is also the only U. S. Mailman in 2015, who wears the whole Mailman get-up, including the sun-hat, with the little pointed top, that looks like perfect jungle explorer hat, only it's blue, with the shirt and shorts. Actually smart, for this hot-as-hell Florida spring that went from 40°F to 90°F and stayed there.

Tom wears this item in blue. For a long time, I toyed with the idea of asking him if he'd found Dr. Livingston yet, but Tom doesn't seem to have humor in his wheelhouse.

Tom takes his causes and his job seriously. I know this because “dark of night” seldom slows Tom down. We've been known to get our mail well after dark and it's more the rule than the exception, however, on the day that Jim passed over to the “other side” at 11:15 am, Tom decided this was the perfect time to show up at what would be a more normal time, say 3 pm. Well, there is a kind of Morse Code thing that goes on in this neighbor hood, that defies belief.

We had already had the police here, earlier in the week, because our Landlord scraps metal in our backyard and one of the neighborhood McDrunkleys had decided to help himself. I called the police, rather than beat the tar out of the McDrunkley (I'm on a short leash these days) and I kept him at bay until the po-po showed up. We had gotten this sorted out, when here came the neighbors to pay their respects. I went out to meet and greet and tell them that, in fact, Mr. Jim, was resting quietly and that I would let them know. They all hugged me and went back to their houses.

So, when Mr. Jim did pass, the door had been open, several hours had passed and many of the neighbors had already come by to pay their respects and bring food. We were still waiting on the coroner. Then, here comes Tom. Valerie, one of the hospice RNs and I were talking quietly, and Tom sticks his head in the door and hollers “Is that guy dead? That guy's dead, isn't he? Have you called anyone?” He's looking at me and then at Jim.

Several thoughts raced through my head: “Gee, no, I didn't know “that guy is dead.” “Gee, I was waiting for you to bring me a mailer, so I could ship him off to wherever it is you ship dead guys.” “Gee, we were thinking of having him stuffed and hanging him over the mantle.” “Gee, we were gonna use him as fertilizer.” I looked at the nurse Valerie and I could see that she was having trouble keeping a straight face as well. I said, “Tom, you know Jim was unwell for some time. He passed earlier this morning. We have it under control. Thank you.” Tom shook his head, like “I'm not understanding this U. S. Government. Privatization. Bodies layin' around. Gah!” Tom is a one-trick pony. He jammed a bunch of mail in my box, none of which was mine and went on his way. As I took the not-mine mail and jammed it in the correct mail-box, I swear, I SWEAR I could hear Jim laughing over my head. He would have thought this was the funniest thing since Mr. Cantrell's hunter that was so great 40 years ago, they still can't find her in the Texas woods.

You learn so much about people during times of extremis. Part of it is knowing that you're going to have some rough patches. You know that you can get through this, and move on. You provide the grace needed to people who are deserving of it, but you ride hard the ones who don't, and if they need a little push for a much-needed fall from grace, you offer that up too. All of this requires a logical mind, warm heart and the ability to help and jump in when it's needed. I did everything required and I found reserves of strength I didn't know I had. The only thing I couldn't do was the very thing I wanted more than anything. Because I was unable to provide that, I did everything else above and beyond what was called for and felt so alive.


Rest in peace, my love. You're with me always. You know that we had wonderful years together and our parting was perfect and temporary. I love you dearly and I will do all those things you wanted me to do.

But, it also made me realize that I'm no longer at a crossroads; it's my turn now. It's time for me to get back up on that horse and hit the road. It's going to take some planning, and organizing, but I know what I want to do, and I have a good idea of how I'm going to do it. There will be surprise visits and lots of traveling. It will involve some homelessness, but, I've got this! 


This post has been long enough, but later, I will write about how my gaming clan, my family "SpiritZ" has been so very, very supportive through all of this. They have been a mainstay, as well as my  symphonic family and the few friends Jim and I have here on Nebraska, along with Alex, our pretend "adopted son". I also cannot thank enough Sal Ribaudo and his wife Bev Mittan-Ribaudo, or Ivan Roberson for their unwavering support. Without any of you, I doubt seriously, if I would have gotten through this. I love you all so very much and I owe you so much. Thank you.
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