Family Health Insomnia People Rant

The Bullheaded Tiger With The Indelible Stripes

There comes a time for most of us when the roles of parent and child are switched, and the children start caring for and watching after their parents. As I am an only child, I knew that this would happen to me–that eventually I’d be the person responsible for my father’s health and welfare. I just didn’t think it would be so soon, and–though I knew it would be hard–I didn’t expect that I’d have to sit by and watch while he made decisions that could put him in serious danger.

My father has end-stage liver disease, and is currently awaiting a transplant. He has been in and out of the hospital since March, and each time has been a terrible scare, because my father’s personal habits are negligent at best, and terribly dangerous at worst–he has had open wounds that have been in danger of becoming infected, and it seems that nothing short of a miracle has prevented an infection.

This past week, he was hospitalized and had surgery to repair the destroyed skin on his abdomen from where a buildup of abdominal fluid paired with an abdominal hernia caused the skin in his belly to rupture multiple times. This has been a gory and messy process, and painful. The surgery was successful, and he recovered from it well, and after a week of sitting prone in a hospital bed, the doctors were ready to release him to a rehabilitation facility today, where he’d have medicine monitoring, constant nursing, food provided, and most importantly physical therapy to help him regain the strength in his legs after having spent a week in bed. Surprisingly, my father agreed initially that a “nursing home” was where he needed to go–he felt that he’d be best cared for by professionals who could be completely vigilant and he’d be much safer than he would be at home, alone.

However, my father is a classic-case Type-A control freak, incapable of accepting the fact that anyone other than him is able to do anything correctly. He left his house last week expecting to go in for a daytime doctor’s visit and was gone for a week. During that week, he fretted constantly about his bills, his cat, the fact that his shop was unlocked, and numerous other minutiae. After he’d agreed to go to the rehab facility, he got it in his head that it was absolutely imperative that he go home for one night to “put things in order.” The things he needed to put in order, from what he told me, were all things that could be handled easily by other people, but every time his not going home was mentioned, he got upset and distraught, and insisted, “You don’t understand, I NEED to put my things in order!”

My father’s medical care is covered by MassHealth, and the rehab facility would have been as well, but if he were to go home for one day, the insurance would not cover his stay at the rehab–they will only cover it if a patient goes directly there from the hospital. He had worked up a plan in his head and become so attached to the idea that it was essential for him to go home, that when the social worker informed him his insurance would not cover the rehab if he went home, he decided to forgo the rehab, not the completely unnecessary visit home. The hospital, having no more reason to hold him there, had no choice but to release him, and I, after numerous appeals that he reconsider, had no choice but to accept his foolish and dangerous decision. When he noticed that I was not happy with his decision, he pleaded with me, “Why can’t you just be happy for me that I’m going home?”

The doctors and social workers are convinced that he’ll be back in the hospital within the week–which would not have been a danger had he gone to the rehab as planned. I will not be able to see him because he lives in the middle of goddamn nowhere, and therefore will not be able to ensure that he’s following the doctor’s orders and, most importantly, maintaining decent hygiene (which I absolutely KNOW he will not do). I suppose I can only hope that the visiting nurses will stress the importance of this to him, but then again, he’s notorious for not listening to anyone’s voice but his own.

I am at a loss. I’m responsible for the life and wellbeing of someone who’s still technically of sound mind, and therefore can legally make asshole decisions that could jeopardize his life. As his friend says, “You can’t wipe the stripes off of the tiger.” But I don’t want to see the tiger die from something that could have so easily been prevented. And I don’t want to go through another week like this one, where he’s cooped up in the hospital, connected to a zillion wires, miserable, and taking it all out on me. Rehab would have been a step forward–this is a giant leap backward. He says he’s fully committed to his recovery, and yet he’s consciously made a decision that puts that recovery in tremendous jeopardy.

I have nothing left in my arsenal. I’ve used everything I had, and I’ve got nothing.

I haven’t exhaled in weeks.

Blather Family Friendship Health Insomnia Observations People Pointless Narcissism Work

The Score

20 Things That Are True–My Week In List Format.

1. The inside of a hospital does not, in fact, smell like “death.” It smells like lysol, bad food, vomit and poo–not mold, dirt and necrosis–therefore, it smells more like “infancy.”

2. Waiting for a donated organ is perhaps the only situation in which it’s actually a good thing to get sicker. Which my father is not doing.

3. Waiting for a donated organ while sitting in a hospital bed and being poked and prodded and forced to eat rubber english muffins is what I imagine purgatory to be like. Watching someone go through this process is only slightly less excruciating than experiencing it.

4. Sometimes the greatest help will come from someone you hadn’t thought to ask (thank you, David).

5. A good cheeseburger and a Guinness can heal a whole lotta hurt (thank you, Phil, David and Michael).

6. Saying “I love you” does not always work to cheer someone up, but it helps.

7. A catheter is a terrible, dangerous and frightening thing.

8. Sometimes the correct answer to “Why me?!” is “marijuana.” This is also an appropriate response to “What the fuck right now?” and “What the hell am I doing here?”

9. It is patently unfair of Mother Nature to suggest that there will be a thunderstorm and not deliver.

10. Cold showers are really, REALLY awful. Even in August.

11. An experienced nurse with a good sense of humor should be paid as much as a surgeon.

12. Pre-season football is a nothing but a reminder to fans of losing baseball teams that there really will be something to watch on ESPN in October.

13. A deafening rock show in a very small room is effective as a temporary cure for depression. This cure is significantly more effective when paired with cheap beer and good company.

14. Michael Vick should have his face bitten off. Someone should inform Mike Tyson that his services are needed, pronto.

15. The notion that the Hokey Pokey is what it’s all about is an insidious fallacy.

16. I will never comprehend the inability of certain people to find a triangle which is attached to the pool table.

17. There is a very compassionate medical technician at Tufts New England Medical Center named Jewel, who should be given a hefty raise for saving my sanity at least twice. Someone else should arrange this because bureaucracy makes me want to mutilate strangers, and that development would be counter-productive to Jewel’s initial sanity-preservation.

18. If a store is named “Store 24,” it is not unreasonable to expect that said store be open 24 hours a day.

19. The only tolerable reason for having chapped lips is if you’ve been making out with someone. This is not why my lips are chapped.

20. My father’s Pneumonia, which I didn’t know he had until today, is apparently almost gone.

21. I am incredibly bad at stopping a list once I’ve started it.

22. There is an animal of unknown species and considerable size rooting around in my back yard.

23. I love the number 23.

24. It’s three in the morning, again, and I am going to bed.

Blather Family Friendship Health People Pointless Narcissism Think

A Sad Little Group Of Buoys

I once described being motherless as “like a buoy cut loose and floating, directionless, belonging to no one.” This is, I suppose, the best way to describe the way I’ve been feeling lately. There is only so much stress and nervousness the body and mind can process before it goes, “Fuck it,” and you end up wearing a slack face and saying “uh-huh” a lot.

 I took a few days this week, as I did last week, to visit the Island Of Misfit Toys in hopes of raising my spirits, or at least relaxing a bit. And, as happened last week, I got a phone call from my dad the day after I got here, saying that he was being admitted to the hospital again. I suppose it’s the up-and-down that’s wearing me out; it seems the good days, the days where Dad says, “I feel better,” or “it’s been a nice day, the weather’s good,” are always followed by something not so good. I’m hoping that this surgery is the exception–I don’t know how much more up and down Dad can handle either.

 This time around on the Rock, a couple of my friends have been pretty depressed, too–and that’s hard for a number of reasons. You can’t expect a depressed person to cheer you up, and if you’re depressed, you can’t do much for them–so you end up as we did: a sad little group of slack-faced buoys, sitting stoned together in the same room and not talking much. It’s a little more comforting than being alone, I guess.

 I feel like every downswing has to have its upswing, and for the sake of my father, and my friends, and myself, I hope our upswing is coming. I also hope I cry soon, because I absolutely need it–and I actually found myself envious of my one friend, who says he’s been crying all week. A good, cathartic cry can go a long way.

 Really, I just want to see the happy twinkle in my Dad’s Santa Claus-blue eyes again. I miss the person he was not so long ago–the energetic, talkative, stubborn genius that I’ve known all my life. I know he misses that person too, and I hope we get him back real soon.

 I’m done blathering. I’ve run out of things to say. The muscles in my face are starting to atrophy from disuse. Oh, bother.


I’m An Atheist

But I’m asking you all to pray (or cross your fingers or think good thoughts) for my Dad. He’s going in for surgery tomorrow morning. It is a minor surgery which is low risk, but there is a certain degree of risk in the following days–I’m confident he will pull through it ok, but he can use all the good juju he can get. He’s had a hard few months, and I’m looking forward to seeing the spirit back in his eyes–after this surgery, and ultimately, after the liver transplant which is to come in the near future.  So cross your fingers for Daddy, and for me.



Family Friendship Nostalgia Observations People Think

You Never Know Who The Angels Will Be

For most of my life, my mother has been my “big mystery.” She is a person to whom I am intricately connected, but whom I barely got the chance to know. My grief over her death ran most of its course over a decade ago, when I was a young teenager, trying to find direction in a world without rudders. At this stage in my life, I am so accustomed to my mother’s absence, and to the effect it has had on my upbringing and my development as a woman, that I don’t often get upset about it anymore. Every once in a while, however, the tears come–and they come in torrents.

This afternoon, my father dropped off a few boxes of books that had been stored for the past two years in his shed, since I didn’t have space for them in the places I’ve lived since my move to Boston. My new apartment, however, has plenty of space, and roommates hungry for my accumulated wealth of literature. One of the boxes my father brought was unexpected–it did not contain books; rather, it contained journals and date books–more specifically, my mother’s journals and date books.

My mother kept a written record of nearly everything that happened in her life. She wrote primarily in Steno notebooks and date books with Degas paintings on their covers. The date books she used to record a day’s events, rather than to plan upcoming engagements. The pages of her life are peppered with nuggets of truth, such as “Punkin cranky today,” (Punkin is me), or “cannot feed self, cannot garden” (when Multiple Sclerosis had taken its toll on her body). I have paged through most of these books, but I have not read them all in their entirety, and I was surprised to flip one open this afternoon and discover a sort of letter–a voice from the grave. Her words were directed at me, but I imagine they were more of an internal monologue of her own with me in mind–she likely never expected me to see them.

25 Jun 90
…you had a big ow gouge in your knee when you were last here….I have a phone; consideration is easier than distrust. Let’s make good times–we must, there aren’t that many. Each cupful is precious. Will you show up tomorrow?

…But he did drive away and leave while I cried in the snow. (Crying in the snow is dumb, but I’d still do it.)
I feel that way about you, too. THAT is, I care about you having consideration, manners, thank yous, ability to maintain a schedule…Wish I could produce someone to help you. A grown-up friend. Suzanne not old enuf, Tanya either.

…Do you remember painting the boat? The brush was almost as big as you were.

This entry was written shortly before my mother moved to California, after I’d stopped living with her and moved in with my father. We’d grown distant unintentionally, as school scooped up much of my time, and illness and preparation much of hers. Also, at ten, I was too shortsighted to realize how little time I had left with her, though she as an adult (with a clear plan of self-deliverance from her illness) knew precisely how dear each moment was.

Sitting in my living room this afternoon, fifteen and a half years after her suicide, I found what is the closest thing to my mother’s voice that I have. I was both grateful and devastated: grateful to have found it, and devastated all over again at how profound the loss of this woman has been in my life. I wished for a way to assure her that I do have manners, and consideration, and have learned to follow a schedule. I wanted to tell her that it took me a while, but I found people to help me through the hard times, women who mothered me as well as anyone can mother a daughter who is not their own. I wanted to apologize for the difficulty I put her through when she was ill–for every entry that said, “Punkin angry, spiteful,” or “Punkin out of control.” More than anything, however, I wanted her to see how far I’ve come–despite the inherent pride I feel in my accomplishments of late, there’s still a part of me that feels like none of it’s completely real because she wasn’t there to see that I turned out okay after all.

I ran my fingers over the ballpoint indentation of my mother’s words, and I wept. I turned the pages and watched her handwriting grow more and more illegible as the illness overtook her body; there were parts even I could not decipher, after years of practice.

In one date book, I found an entry that put a smile where the tears had been. It was from February, 1989, my week-long school vacation. Reade overnight, it said. Monopoly all day. Great. 3 hotels on Boardwalk for Reade. I remember the day as though it were yesterday. It was snowing, and Reade (my childhood best friend since her birth 3 days after my own) and I were off from school. The three of us sat on my mother’s huge bed and played the game for hours–the majority of the day. I was eliminated after about three hours, but Reade and my mother played on, until finally my friend was victorious. It is one of my few clear memories of my mother, and one of even fewer in which she was truly happy. To read in her date book that the day had been as special for her as it was for me was rewarding, a confirmation that the memory was accurate, and that she really was as happy as I remember.

Tonight, Reade came over to see my new apartment. She’s six months pregnant with her first child, and she’s radiant. I wish my mother could see her. The two of us were raised for a time by each other’s mothers as well as our own–we have been family from the very beginning, and it would have overjoyed my mother to see Reade so happy.

For Reade’s “something borrowed” in her wedding, I suggested she choose a piece of jewelry that my mother made-and wore-and wear it during the ceremony. She chose a silver bracelet that my mother wore every day. I knew my mother would have been proud of the choice: it was simple, elegant and graceful, like Reade.

This evening, I shared my discoveries with Reade–she is perhaps my only friend who would understand the depth of emotion that can arise in me when such a thing is uncovered, and she is the closest to my heart; she’s known me nearly as long as I’ve known myself, and probably knows me better. Also, she remembers my mother. Most of my friends never even met my mother, but Reade remembers her–at times, I think, better than I do. She loved my mother, and my mother loved her.

With Reade there, i felt comfortable voicing my own regret–regret that I know intellectually is foolish because no nine-year-old has perfect manners, and no child can know the strain that their own behavior puts on a parent. Similarly, I felt she’d understand my gratitude for being granted an intimate glimpse into my mother’s last months, regardless of how painful that gilmpse was.

Looking at Reade across my new kitchen table, I was instantly transported back into my mother’s bedroom, on that snowy afternoon, before grief and adolescence and responsibility made a smile on my face such a rare occurrence for such a long time. Even during the dark parts, though, there was this friend–this one person who did not for one moment allow me to question her loyalty or her love. I’m so lucky, I thought, and that child in her belly is the luckiest kid in the world.

My mother gave me this friend. She and Reade’s mother were in Lamazze class together when they were pregnant, and from our earliest stages of infancy, we were together. In childhood we’d spend days on end at each other’s houses, and we celebrated every birthday together. During adolescence we did not see much of each other–we had different friends by then–but still I knew that Reade was the one true friend I could turn to without ever doubting her. That’s what family is. And as we left high school for what would eventually bear the title of “adulthood,” we reconnected, and have been as close as ever since then.

At the risk of sounding overly sentimental, I’m eternally grateful to my mother for her role in Reade’s presence in my life–and I’m equally grateful that Reade has grown to be every bit the woman I’m sure my mother expected her to be, and that she’s still a close part of my life. She has a wisdom beyond her years, and a heart that is beyond measure, and I love her as only family can love. Likewise, I’m glad to have someone around who remembers me–and my mother–before tragedy took us down and made us merely shells of what we once were. She has been here for the long haul; she’s seen the ups and downs, the scary parts and the dreams come true, and she knows me better than anyone I’m not related to.

I realized, too, as I sat talking with Reade this evening, that it is she who has been one of my most significant role models. She has always been kind, and polite, and dependable, and when I am around her, I am my best self. My mother wished for an “adult” role model to teach me manners, and gratitude, and grace–little could she have known I’d learn them from someone no older than myself, the girl with whom I’ve suffered all of my growing pains, and without whom I probably wouldn’t have made it past the fifth grade.

As I watched Reade’s silver car drive away tonight, I thought to myself, “You never know who the angels will be.” But maybe–just maybe–my mother did know.

Blather Family Observations People

…And Really Bad Eggs.

This morning I woke up to the most unwelcome sort of phone call: the hospital calling to tell me my father may have an infection in his abdomen (which he and I have both been told could kill him, rather quickly, should it occur). I called Dad and he said he felt awful, nauseous, and weak–and that he was headed to the hospital as soon as possible. When I got there, he was frustrated and berating the nurses because they hadn’t brought him any nausea medication, which he’d demanded as soon as he checked in. I understand his urgency: Unlike most people, to whom occasionally throwing up when ill is normal, we don’t do that. I haven’t been physically sick without the involvement of alcohol since I was four years old, and even with alcohol, it’s infrequent. My father, before this afternoon, hadn’t been sick in about ten years. It’s a terrifying thing for those of us with strong stomachs, at least it has always been terrifying for me. I chimed right in with Dad and started demanding on his behalf, and they got it to him–but they were too late.

I have become accustomed to hospitals recently, which I never hoped or expected to do. When I walked in this afternoon, one of the nurses recognized me, and was surprised and disappointed to hear that my father was back–he was the nurse that was treating Dad on Tuesday, and had hoped not to see him back so soon. Still, regardless of how routine the hospital bit has become, I have yet to leave there a single time without crying. This thing is defeating us both, Dad and I. I think perhaps Dad’s physical and emotional weakness is taking an equal toll on me–it’s a reality check I’m not quite ready to deal with. But, then, I suppose we never are. The ups and downs are maddening–even a plateau would be stable, if nothing else. The fluctuating condition of Dad’s illness is like the little curly-headed girl I was compared to as a child: “When she’s good, she’s very very good, but when she’s bad, she’s horrid.”

There was a philosopher or a wise man who once said that often the solution is the simplest of the possibilities. I don’t know who it was that said it, or how badly I’ve paraphrased it, but the saying has particular relevance to this afternoon, where something which appeared so incredibly complicated and dangerous turned out to be pretty simple after all.

Dad was nauseous, but after he’d received the much-demanded nausea medication and the family with three squawling toddlers left the other half of his room (Dad’s intolerant of other people’s misbehaved children), he seemed to improve almost instantly. I noticed, and so did the doctor. Would someone who had an internal infection that was potentially lethal improve with something as simple as an anti-nausea drip in his IV? Likely not. He’d have a fever, and chills, and redness, and a plethora of other symptoms. Dad had none of these. His color was good, his eyes were clear, and when he could speak again, he was his old chatty, lecturing self.

When I was grilling him to find out if he’d eaten enough or drank enough fluids, he mentioned that he’d had eggs for breakfast and that he hadn’t eaten eggs for a long time; perhaps the eggs were bad. I immediately and involuntarily thought of Jack Sparrow’s song in the Pirates Of The Caribbean movies: “…and really bad eggs.” Could it be that the test results which showed “contamination or infection” were indicating that the specimen had just been contaminated, and coincidentally at the same time, Dad had given himself food poisoning with his simple boring breakfast? Or could it be that Dad, like me, has developed an intolerance for eggs from not eating them? Was it really that simple?

Apparently so. According to the doctor, Dad doesn’t seem to be in immediate peril. Not this time, anyway. In fact, when the nausea medication kicked in and made him drowsy, Dad all but kicked me out of his hospital room. “Go,” he insisted, slurring, his eyes drooping. “Get out of here and go do what you do. I’m gonna go to sleep now.” I walked toward the door and by the time I got there, Dad was sleeping. And though he probably didn’t need to drive all the way up to Boston over a simple case of food poisoning, I was comforted by the fact that while I was out of town, he’d be looked after. I suddenly realized–not that I would ever do this–why people sometimes put their loved ones in nursing homes–just to know that someone is watching over them when you can’t be there to do it yourself.

Over the past three months, the journey to a diagnosis for Dad has been a labyrinth of tests and hospital visits, adjusted medications, fluctuating symptoms and mysteries. His history defies the diagnosis–cirrhotics are usually alcoholics, and Dad’s probably the most notorious teetotaller I know. Before he ended up hospitalized the first time, he’d had no symptoms that anything was wrong at all. And despite drastic muscle loss from inadequate nutrition, Dad’s got a strong constitution, and he’s managed to ward off infection twice, it seems. And when the bad gets bad and he starts to get down, things seem to turn around just in time and he gets optimistic again. It’s been a long, strange trip but, like many trips I’ve taken, the bad days seem to have made the good days that much better.

Today was both a very bad day and a very good day–bad in the immediate sense, because Dad was uncomfortable, but good in the long-term sense, in that it looks like there is a long-term after all.

And at the end of the tunnel is not just a light, but a party. Hopefully a good party–a great party. By night’s end I will have run the full gauntlet of emotions, from terror to relief to, hopefully, joy.

And really bad eggs.

Family People

In Which The Salt Girl Loses Her Marbles

Why is it that bad things-stressful things, things capable of breaking people down–always seem to come all together in one big wallop? Two weeks ago, I found out/decided that I’m moving out of my apartment and I’ve been spending all of my time trying to find a new place, which I thought would be easier this time around since I’m in the city and not on Martha’s Vineyard. It hasn’t been. I’ve gone to see a few places, all of which have been either disappointing or… not right.

So, basically, I’m staring down the barrel of homelessness.

And this afternoon, I got a phone call from my father, who’s been having serious health problems in the last few months but was in relatively stable condition, and he said that he was going back to the ER because everything had gone south again, and fast. I won’t go into detail because it’s truly grotesque–I will only say that it’s utterly heartbreaking to see someone you love going through something so awful, something so unpleasant, and to know that there’s very little that the doctors can do to alleviate his discomfort. The condition he has is not life-threatening, so there’s only so much that they can do. He needs a liver transplant, but will only be moved up the list when his organs start failing and it does become life-threatening. To top it off, he lives by himself an hour and a half away, I don’t have a car, and I’m his only living family.

This evening while I was sitting with him in the Emergency Room, he told me we had to fool the doctors into thinking that I was driving him home because they didn’t want him to be driving himself–but I can’t drive him home because I don’t have a license. “They don’t know that,” he said. “I’m fine, I’ll be fine to drive, they just want to know I’ve got a support network.” When I heard him say that, I realized that I am his support network, in its entirety, and I’m ultimately useless beyond conversation and an excessive dose of “I love you.” It made me feel completely powerless, defeated. I am this man’s entire family, and I can’t even give him a ride home. I can’t ask him to come live with me so I can take care of him, because I don’t even have a place for myself to live, and I wouldn’t know the first thing about taking care of what he’s got going on.

So I cried. I cried in front of my father, who’s already upset enough as it is. I cried so hard I almost hyperventilated, or puked. “I’m so sorry Dad,” I kept saying, to which he responded, “Don’t worry about me, worry about your own things. This is not your fault.” But if I don’t worry about him, who will?

I have always considered myself a strong person, a mature person, a person capable of adapting to and dealing with almost any sort of situation, but tonight I felt weak, inadequate and immature. I felt like a child. I wanted someone to come make me feel better, when I should be making him feel better. The problem, I guess, is that I just don’t know how. And in spite of his condition, he’s still trying to take care of me. I know that’s what fathers do, but I don’t feel like I deserve it.

I know in my rational mind that I’m being hard on myself, that I’m internalizing things I have no way of controlling, but I can’t make the feeling go away.

Tonight I got a glimpse of what his daily life has been like for the past few months–a reality which he has masked with reassuring words, either so that I wouldn’t worry, or so that he wouldn’t make himself more depressed than he already is. My father is not one for self-pity, which I fear will prevent others from helping him–he simply will not ask for help. He wouldn’t even call his best friend of 55 years for a ride to the hospital, because he didn’t want to be disruptive or needy. I’m supposed to go to a baseball game tomorrow night, but I know if I do go, I will think only of my father, suffering strongly and silently, alone in his house, and it will make me feel guilty for being there at all.

There is nothing more humbling than powerlessness, and today, I’m humble. I’m low-down. And I want more than anything for my daddy to be okay. There is nothing more heartbreaking for a daughter, in my mind, than to watch the pillar of strength she has grown up with crumble. My father has shrunken–he’s lost over fifty pounds in the past six months. He once looked like Santa Claus–jolly, round, healthy if a bit on the cushy side. Now he looks like St. Nick deflated–skinny arms and legs, sunken cheeks, the light in his bright blue eyes dimmed ever-so-slightly but enough to break me in pieces.

When I was younger, I thought that losing my mother at the age of 12 was the hardest, most painful thing I’d ever have to endure. I know now that I was wrong. At 12, reality is filtered through the ignorance of youth, therefore the pain is filtered, too. The irony there, I suppose, is that I don’t think I’ve ever needed my mommy more than I do right now. But I’ll survive, I always do.

At least I still have Dad. As long as he’s around, whatever condition he’s in, he’s still my rock. I just want to find a way to be a better rock for him, because I’m all he’s got and I don’t feel like that’s enough. He deserves so much more.