September 28, 2010

Have I mentioned the cussing yet? I wonder if one day my children will since they certainly hear enough of it. And it hasn't gotten better with the years, much to my chagrin, it's becoming worse. At the heart of it is of course frustration. Coupled with chronic lack of sleep makes for a charming combination. The outbursts definitely come under particular circumstances; it's not as though there is an incessant stream of ugly words day and night . 
And don't get me wrong, the F-word is in itself not something ugly in my opinion (oh how opinions change), it's the intent behind it, that's what's getting ugly. I'm just happy I live in a country where English is not the lingua franca since it is bad enough that passersby can occasionally hear my frustrated screams when, just as now, tired, in pain from shoulder and neck problems, cranky, I woke from a saving-me-from-collapsing-catnap on the floor next to Segev to administer inhalation to him and his last meal of the day--to have my slowed reflexes fail me as he began seizing and he pulled with all his might at the feeding tube attached to his gastrostomy. 
He is so out of it since the massive seizure he had a few hours previously that the pain doesn't even register for him. I'll spare you a description of verbal abuse I spewed at the walls, the air, the lamp, at everything and nothing.

My daughter is with me today and she has had to help a number of times with Segev so she hears me and it still embarrasses me even though she is used to it and English is not her first language, and after all I am just venting verbally which is better than if I were to smash things, at least I think so. I don't smash things. The worst it can get is slamming the microwave door closed which deserves it because it's in the way anyway. 

This was Segev's second very large seizure today. I'm used to his smaller seizures, about a hundred or more a day, since they are irritating but manageable. The big ones require oxygen as his lips turn purple (or all of him), control of the environment and towards the end of the seizure scraping his bare foot, as the strong stimulus helps shorten it. His ketosis has not been stable the last few days which most likely explains the break-through large seizures.

But it is those little things which can set me off because Segev's well-being is so difficult to maintain and without any feedback from him there are a hundred bases to cover. The area around the gastrostomy for example leaks because when they did the operation on Segev 6 years ago they made the hole the maximum size for which a valve exists, as though he were an adult, so naturally with the years the tissue becomes soft and unresponsive around the hole with no possibility of plugging it with a bigger valve. Stomach contents leaking out irritates the skin which is always red and inflamed. Today, somehow, (with special skin cream that has the same low PH as the skin) the redness had subsided tremendously. Naturally I was very happy to see this because only God knows how much it bothers him. 
So when I started feeding him and he seized, pulling at the tube, my daughter grabbed his arm and I removed the tube so that he could finish his seizure with less danger but then for some bizarre reason the one-way valve chose that moment to malfunction and a strong stream of oily liquid ketogenic food sprayed from the hole like a geyser completely soaking the area around it. At least it isn't mixed with much stomach acid yet but still the wet will restart the irritation much sooner. 

There are a hundred problems like this, all minor, but all very disconcerting, all adding one to the other until you basically have a dam of emotion waiting for one more thing to happen before a wave of cursing comes out of my mouth. Sometimes when you get started with cursing in a day and you find that one time repeats itself a little later and again, you realize you're having a flusterduck day and it's probably better to just go with it because you are not going to be able to smooth it over. It may even be therapeutic.

The question seems to be why is it getting worse? Not the vehemence, mind you, nor the frequency, just the choice of words has become more, shall we say guttural. I guess what lies at the bottom of this discomfort of mine with cursing is not the words or the unique combination I find myself putting them in, but rather the fact that it shows a lack of control. I understand after so many years that there will always be frustration. It is one of the major things I need to treat with my patients. I understand that if I had a partner in life the responsibility would be at least somewhat reduced and probably I would not have to live off of five and a half hours of staccato sleep these last eight years. 

It worries me because change worries me. Segev changes all the time. As soon as you settle into a sleep pattern or seizure pattern with him, as soon as you start to feel comfortable, having found your "method in the madness", he changes it. So be it. But when things start to change with me, I am confused and confused is not a state of mind I can allow myself with Segev. 
If there is one thing certain in this life, more than anything else, then it is my focus on Segev. My memory, my greatest asset, fails me, but not where Segev is concerned. My eyesight is getting worse; this happens. I hear rather poorly; accepted. 
And then it happened. And I wonder if it isn't connected to my slips of the tongue. I couldn't remember if I had given Segev his morning medications. It wasn't written down because of a hectic, irregular morning with Segev. The memory was gone or had never registered. I had to piece the facts together from evidence: I use two large spoons to crush the pills and always a tiny amount of the white dust gets onto the table. Fortunately I could remember the table had been cleaned the night before and so I knew if I found the white dust it would mean that I had given him but couldn't remember later. But if I didn't find any dust it would mean that I had completely forgotten I needed to give him in the first place. 

I did find dust that time and so I had to redouble my efforts to write everything down. Because being accurate and paying attention to little details is the key to success here. Perhaps the cursing is the least of my worries.


  1. You are very strong. I am listening.

  2. My husband gets frustrated like this with our daughter's lack of stability. I have come to accept that constant change is the norm. I remember too many times where I wonder if I gave the meds or not. It gives me a horrible sinking feeling in the pit of my stomach. Hard days my friend...wishing easement for you.

  3. I, personally, enjoy a good curse every now and then and have secretly dreamed of my daughter perhaps learning how and it being the only word she ever says.

    In all seriousness, you are seriously stressed and I hope that there is some lessening of it. I wish you ease.