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Sunday
Apr192015

When all else fails

I was working across the country for awhile when I started receiving emails from my sister (in her earlier years of having Lou Gehrig's) hinting for me to come home to help her (and dad with the yard, house etc). A few months later I pulled into our driveway and thought to myself, "If she has had this disease for five years, then am I going to live here for two years before heading back out? (Since many ALS victims last only about 7 years)".So the only place to stay was in the basement in a 12 x 12 room, no bathroom but a washer and dryer room and my dad's office taking up the majority of the space. I thought, "Well this will do for a few years somehow". How wrong could I have been?

 

Now, here I sit 22 years later and still sleep in the same room in the basement and wondering wtf do I do now?

 *********************************************************************************

So I am now going to pursue finding a publisher and see if I can bring my story out to the world. I thought this venue might help me in some financial way but it has been a bust. However I am at fault as I suck at marketing and promotion but my intent was to make sure I sat down at night to recount my experience as I knew it would be very unordinary and wanted to document the experience in case I "lost it" as I thought I might "break" at some point. What I did not share here was the early years of writing about coming home, very disenchanted, drinking heavily to deal with a horrid situation that just droned on (sorry sis) and left me broke, without friends, working full time in a grocery store and then reduced to part-time to keep up with the demands of, not only my sister's ALS, but the later aging demands of my parents. The early years of living amongst ALS, in my drunken state, are quite sad but very funny (in hindsight) but those pages are in the hundreds and it will take awhile to get them edited for an audience to read.

The "load" has worn me down and I am still after the crook that screwed us with a desire to punish him in some way. I somehow have remained alcohol-free for almost ten years despite me keeping a bottle of red wine in my little fridge as I wanted to share it with my uncle on a special occasion down the road when I am not so heavily judged by my sister (she hates my alcohol use).

 

Now, things have changed but I am not going to reveal anything here anymore.

 

As a therapeutic "tool", I was compelled to write about my experience as I was in a family environment and not the sole breadwinner. Things have changed and now I have to "find my way" for my financial future. Working for low wages all these years affected my future Social Security payments to be about half of what I could receive had I worked for the company I gave up to come home. Now, at age 55, I expect I will have to "slop through" more meaningless jobs until I, hopefully, die with a massive heart attack as I NEVER want to be a burden to ANYONE - EVER. I have lived for over twenty years in an environment of humongous 24/7 suffering and have had enough of human angst and I will not be a person to be pitied for or a drain on resources.  As with most situations, no matter how horrid, it is possible to have joy, laughter and rewards of many kinds amongst the misery, but suffering makes all those things short-lived as the human emotional mechanism is so powerful, as my father used to say to me when I was in a temper-tantrum,  "get hold of your emotions". Well, I have learned to "get hold of them" to some extent, but I am afraid I am "damaged goods" for the rest of my life. It is difficult to grow and nurture back a positive attitude when every single day, for years, the attitude was adjusted downward and what employer would love to have such a jaded employee? To my credit however, I managed to work in a very customer service business(s) for over fifteen years and rarely got a complaint and always rose to "top pay".

 

That's all I have to say for now but thanks to those who used to leave nice comments and if anybody has a way to help me bring this story to market, I would be most grateful. Email is:  hon88ff@outlook.com

What a ride but the ride is not over by any means. There really are only two ways this story can end for me: a beautiful tribute or an ugly disaster. At least Life offers "choice".

Truly Yours,

Me

Thursday
Aug212014

So now the ALS Ice Bucket is all the rage...

Two years has passed, more or less, and, for some reason, I now have to re-light and write about my emotional fire that truthfully has no reason to burn but I won't say why, now, for years of living amongst ALS has left me broke and now living in a far greater anxious situation as ALS left my family in tatters.

If I did the ice bucket scenario, I would just assume drown myself. I won't continue writing this tragedy without someone who believes in me and with the financial opportunity to keep me writing. I will leave the comments open and see what happens unless it gets to be irritating and pointless. My path is soon to splinter and I just don't know where I will go after 21 years of living amongst ALS.

Keep on dunking but know why you are doing it and how the 30,000+ American families afflicted with the disease stay strong and committed knowing that research and product development can make living amongst ALS and living with ALS more hopeful and with a better quality of life from the generous donations of all involved.

Maybe in the cold winter time people can dunk themselves with scalding water to really show their commitment to find a cure for this bastard of a disease called ALS.

 

Sunday
Mar182012

No parking on the dance floor

I should have gone to law school. Three times downtown we have trekked without even getting to my evidence. Finally, this past week the technicalities are now resolved and in a few weeks, I can "show and tell" what I spent hours and hours on arranging, rearranged, tossing out, tossing back in, rearranging and re-writing. I now truly appreciate how an ethical lawyer can spend so much time putting a case together. I can also appreciate the years that lawyers spent in law school mastering their craft and skills. Needless to say, we can't afford a lawyer in this matter and, so, I will give it my best shot. Worst case, the asshole only gets a year. The best outcome will be a long sentence in a federal prison.

Besides the criminal case, Sarah keeps on trudging and as the years pass, my "enthusiasm" for keeping this "project" going is waning as is my mother's endurance. Every Monday, Tuesday and Wednesday are my days of dread. The entire "getting Sarah to bed" thing, what used to be a "start to finish" task of about 35 minutes that now, with the added necessities, the task can take up to an hour and fifteen minutes. It all depends on how strong my mother is at the end of each long day in this house. It's just a bitch of a way to end my usually trite days.

And so the years drag on, the holidays go by without much energy and the workload just increases on me. I have written before, but the older they get, the less the clean, the slower things take to get done, and the driving is becoming a concern. I told myself today that I would prefer to die than have to take care of my father and mother by myself. There is no one left in this family. The quality of living suffers more and more as ALS continues to ravage my sister and, at the same time (as if anyone cares in this family) my brain. Honestly, it's one thing to live a "normal" life away from parents and then to come home (or have them move in) but to have to give up a potentially viable life to take care of a sibling with ALS and now watch the parents enter their final years is a load I really don't care to endure  as time marches on. What the fuck am I supposed to do? "Deal with it?". Fuck that. I have "dealt with it", as my dentist of 40 years told me last week "with the strength of Job". My body has taken hit after hit from all the years of stress and I am just fucking tired of living their lives. The sooner ALS wraps up its' misery tour on all of us here, the sooner I get in my car and drive to a hotel at the beach and begin anew. Spend some days in a hot tub, then nights on the dance floor, I'll be good as new..........................?

 

Monday
Feb062012

Suck this, criminal

Criminals suck. Last week my sister, mother, a caregiver and I made the 18 mile trek to downtown, waking up at 6 am (earlier for the caregiver as she had a 20 minute commute to our house) and we all arrived a few minutes early to supposedly meet with our asshole in court. Within minutes, the judge announced that our asshole had a lawyer who had a schedule conflict and so we had to postpone the hearing for two weeks. Unfucking believable, although I was "warned" by my uncle and others that the worthless dregs usually find ways to postpone their day in court - especially when they know, deep down, that they really are in for a whipping in court. What the asshole doesn't know is that his "failure" to find a decent lawyer only fuels my certainty on ruining his life in ways I do not even know yet. To drag my sister out of her bed, my 80 year old mother and then a caregiver who has to be paid, really, really shows the total disregard for others as was the case when the asshole first entered our lives. I now know some how other "victims" feel when they are "taken".

I have spent just as many hours trying to get my "case" together" as the hours I spent fixing the asshole's incomplete and shoddy work. I even had an estimator come in and I could really cry to know just how much the jerk "took" my mother for and what the actual cost should have been. I just had no idea and I thought my father was keeping up with the expenses. I was wrong. Now I am trying to find remedy any way I can. One way is to keep the pressure on in ways I can't say here.

However, last week a warrant for the POS was issued as he failed to show for two other cases pending against him. I don't know if he is in jail but I expect so. I will find that out in the morning. I hope he is having a miserable time and suffers in his every waking moment like my sister does. Fuck him. I will have my way with him in a few days. In the fourteen years of my living amongst ALS here, my sister has never seen me in a suit. Well, she saw me last week and I heard she was taken aback. I looked damn good, like I mean "business". Bring it on. I like the courtroom when I am not on the side of the defense for a change.  LOL and so it goes.

My mother turns 81 this week and I am truly starting to worry about her ability to care for her daughter. When I saw Stephen Hawking and the article that he has had the disease now for 50+ years, I became horrified. I am in no way capable of enduring ALS for another twenty years or more.

I won't. Period.

Sorry sis, but I will have to move on in one way or another. What a great way to see one's future -                                                                               

                                                                                     bleak as Hell.

 

Friday
Jan132012

Circle the Jerk

The caregivers are trying different ways to move Sarah around when they have to move her.

At times, when I walk her, her legs give out and I have to catch her from dropping to the floor.

One caregiver failed to catch her as she stood her up and I was called to pick Sarah up.

Going the same distance from even a year ago takes twice as long as then.

Sarah exerts herself so much when being walked that she is almost out of breath.

Sarah can only really move about twenty feet at the most. A year ago she could walk to the van outside.

God damn the day when she can no longer stand with someone's assistance. Then what do we do?

++++++++++++++++++++++++

I finally added up the checks from our asshole con man and it is over $100,000. I had no clue that he sweet-talked my mother all those months at the kitchen table while I was at work and my father was in his bed. When I bring an estimator in to tally up what should have been a "true" amount for the work that wasn't even finished, I am certain he will come up with a number of $35,000 or so and that won't include the hundreds of hours and my own money I had to spend to cover up the "average efforts" of his helpers.

And so the damage done by the "literal" motherfucker has spread to my job as I was written up for "blowing up" while a customer was in front of me because of a stupid employee's mistake who should have been fired years ago for various reasons including picking his teeth and nose in front of customers while putting their food in bags. Of course the manager blamed me for the whole thing as he has only sucks up to customers and his employees are "always wrong". Screw him and God damn ALS for putting me in a shit job with stupid people that help to fuel my anger from having a motherfucker "take" my mother's and father's hard-earned money which we could really use now to start thinking about what the hell to do when Sarah can no longer stand on her two noodle-thin legs. And so, with my criminal warrant for the asshole coming due at the end of the month, I keep finding new ways to "hang" him legally. Forget my family, he has screwed so many people for so long that finally the "wagons" are banding together and his time is coming due. Personally, if I were him, suicide would be his best option.

Every single day, something he did or did not do causes more work, more effort and more time which could all be better used just to take care of Sarah and now, my parents. He has caused my family to waste hours and hours of time (that he has neither clue nor care) from all his lies and deception. With a few more days, I can finally stop working on completing the projects he started almost a year ago. "See ya in court - you lying loser"....